IF YOU ARE WAITING, please let me to share my experience
Dear Fellow Members:<
Comments
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thank you for posting this. very informative. I did not have to do chemo but if I do in the future, this will be the first thread I will return to. as terrifying as diagnosis/waiting/etc is, for me it lessened as I got educated here. It really helped me knowing in detail what to expect from each procedure.
"After the initial shock and some tears, I decided from that VERY moment on, that I wanted to be in charge of this part of my life's journey. That it was no time for self-pity. I knew that I will be as pro-active as I can. Iwill not accept everything that was recommended to me without understanding why, without checking on its validity. I will guard and protect MY BODY at all times. No one will do this job better and with more enthusiasm than I, ourselves."--my initial self pity did me no good and sent me into a downward spiral. I hope that for those just beginning to walk this path will see your words and it will make a difference in their way of thinking. I know for me I will have to remind myself often to let it sink in to my thick skull!!
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Jeeper4..so very glad you find this post helpful and informative...if you stay focus on what's ahead of you, do your due diligent so you can recover quickly. At times, you may waver or wonder, but don't let those thoughts hold you down. Pushed them aside, and bring out all the positive energies and thoughts you can master, watch "Just for Laughs" on youtube to keep your wits about you..and you will be fine, OK? Go do the things you love, maybe reading, taking leisurely walks, bake, go to movies or theatre or performance with your friends, OR by yourself if you do not feel like having any company, OR go to parks, visit museums and so forth, whatever makes you happy...Please take care always... In my prayer and sending good wishes your way too...@!!@... Came back to send you bunches of orchids below.
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UPDATE CHEMO # 3 of 10: May 11, 2015, Monday
0750 hours - Arrived at Blood Test Registration Level 2 at National Cancer Center Hospital for Blood Test. Already 32 people ahead of me. Waited till 0835 before being called. Results of Full Blood Count posted into their computer system within an hour.
0859 hours - Check-in at Chemo Desk on Level 3. Had weight/height taken with assistance from cheerful young lady at lobby. Info and docs given to her to hand to reception desk to be inputted into computer system so Pharmacist can prepare drugs for this session. Was told to go for breakfast at hospital cafeteria and to report back at chemo desk at 1000 hours..
0905 hours - Had breakfast.
0945 hours - Check back in at the reception counter to check on cost of Treatment #2. Was given similar cost as Treatment #1 though Treatment #2 has lesser mg of drugs. Was advised to speak with Pharmacy department behind reception counter. Brought my spreadsheet to Pharmacy and verify dosage for Treatment #3 and Treatment #2 charges. Also requested reduced Dexamethasone (steroids) from 20 mg to 10 mg due concern about long-term side effects of steroids on body. Pharmacist called my MO who authorized reduction from 20 mg to 16 mg. On Treatment #@ charges, was told it is estimated to be about half of Treatment #1. Treatment #3 is estimated to be similar to Treatment #2.
Went back to waiting reception to wait for my number to be called. Was called at 1003 hours to go to the Jasmine Suite for my chemo.
Duration: 4.0 hours (from 1030 to 1430 hours)
Started 30 mins late due to nurse didn't get IV line correctly into vein on right arm. Tried left arm but couldn't find a proper vein. So went back to vein in right arm was one which was almost straight but at a lower position from the same vein. Was able to get IV line into vein. Listen to music until lunchtime. Sister made pureed basil garlic chickpea pumpkin soup and steamed chickpeas for me. It was simply delicious. Bless her for being so thoughtful and thorough.
All went smoothly, and fallen asleep until the last 15-20 mins of paclitaxel treatment where I felt breathing constriction for like 20-30 seconds. Waved for my sister to call the nurse. Nurses came, doctor-on-call came. Said they will watch me closely. That feeling didn't come back. Continue icing for 20 more minutes after paclitaxel completion. Finish the last of my 1.5 litres green bean soup, and went home.
At home, felt fatigue set in. Had a banana, a mango and a slice of raisin bread. Showered and went to bed for about 2 hours after drinking another 1/2 litre water. Went out for dinner. Appetite still good. Flavor still good. Water still taste like water. Ate a lot. Drank a large cup of barley water. Went home, drank another 1/2 litre of water. Had another banana. Research on necessity of radiation after chemo. Still debating if I want to have radiation or not. Looking for material that justify radiation in view that I have clear margins and negative nodes and felt chemo is sufficient at this time. So far, trials I've found suggested radiation for positive nodes, and could not find any on addressing people like me with negative nodes. Will continue to research this week until I am satisfied so I can make my decision later..
Relax. Had 1/2 litre water and 2 slices of raisin bread. Watched Professional Masterchef, showered, brushed teeth and gargle with biotene before going to bed. Thank God biotene prevented mouth sores. Let's see what the coming week brings.
UPDATE 4: May 12, 2015 (Tuesday)
<<@ 2112 HOURS this evening during shower, THE INEVITABLE FINALLY HAPPENED !!! >>
I began to Experience the side effects (SE) of dexamethasone (steroids) doing its thing - that is sleeplessness. Had a sleepless all Monday night long through early Tuesday morning. Finally, got up to drank 1/2 litre of water, only to discover that my tastebuds had changed slightly. I still feel hungry each morning, and ate my usual breakfast of baby oatmeals /raisins/ cranberries/honey + cut bananas. Food still tasted good and my appetite still good... Decided to read online for 3 hours. Spent the rest of late morning, lunch and afternoon lazying around and surfing the web, watching Ellen DeGeneres and so forth... Had dinner of broiled broccoli, bread and rice.. rested before deciding to show. And then bang! It finally HAPPENED!
At exactly 2100 hours, while taking a shower, I decided to wash my hair. As I started massaging my scalp with shampoo, I felt strands and strands of hair started falling and floating all over my neck, my chest, my lower body and then down my legs. It dawn on me that the inevitable has finally happened.. I saw hair ! hair ! hair ! all over the shower floor . For a brief moment I felt disheartened....so I just let the water flowed over my entire head and body and stood savoring of whatever hair I had left. Yes, I cried a little too. I must have stood for about 5 minutes, then quickly finished showering, patted myself and my hair dry, and got out. Then I text my brother informing him that it is time for me to head to his hair salon first thing tomorrow to have my commando cut.
I realize this day would be another milestone in my life that I shall never ever forget. Who wouldn't? I tell myself that it's only temporary, and that my hair will sprout again in about 4 weeks' time, more beautiful than ever....
UPDATE: May 14, 2015 (Thursday)
Met up with my SO & OPS this morning at their Executive Meeting Room today. I had agreed to join them for an interview with the Press to provide a patient's perspective about the Round Block Method of Breast Conserving Surgery (BCS). The Oncology department wanted to share with The Press about options available to breast cancer patients suitable for lumpectomy, and to encourage potential patients to consider BCS instead of mastectomy. The Press conference went quite well, and I was happy to contribute.
Mid-afternoon, fatigue started to set in. I slept most afternoons and evenings. Had dinner and went straight to bed till late morning the following day. Never ever slept so much in my entire life...I suppose it's inevitable - and I'm not complaining.
UPDATE: MAY 15-16, 2015 (Fri/Sat) - Noticed that my body is becoming even more lethargic....but made myself go for an hour's walk by the river early in the mornings. Did another hour of stretching exercises late morning at the National Stadium about 20 minutes' away. Walked home from stadium, then showered. Felt totally exhausted... Slept for 3+ hours....had some light snacks...and ate mostly bananas... Body felt somewhere sore and achey.Hair continues to thin. I have to say the crew cut did made me look like Sinead O' Conner, and I did like it.
May 18, 2015 (Mon)- Did FBC test that morning, followed by a visit @ 1400 hours with my MO. Was told that FBC result showed a mild liver inflammation that they will keep an eye on, and not to worry. Was given appointments for Chemo #4, 5, 6 every Tuesday mornings at 1000 hours. Began to experience sleeplessness.
May 19, 2015 (Tue) - Did Chemo #4 + icing as usual. Everything went as per normal. Drank lots of fluid daily (about 4 litres). Breakfast of Oatmeal with dried fruits/honey/banana daily. Started adding delicious mackerel to diet. Increased exercise duration. Breast reconstructive surgery scars healing nicely. Continue using Mederma scar cream around areola and SLND scars. Scars seem to be fading nicely thus far. Sleeplessness reduced with the reduction in dosage of pre-paclitaxel medication dexamethasone (steroids) from 20 mg to 16 mg, and from 12 mg to 8 mg (minimum needed to counter taxol SE). Hair loss continues. Crew cut makes it less visible... Decided to take lots of selfies for keepsake, and adorn my head with different accessories, bandanas, etc. and sent pix to my friends around the world, including Canada, the US, UK, Singapore, Hong Kong, Beijing, Malaysia. Virtually everyone text back that they love my new look !! It was fun receiving all sorts of emoticons... and Zumba classes this week was terrrific!
***UPDATE CHEMO #4 ***5/19/2015, TUESDAY
Continue to lose my 2-3 mm hair daily (80% gone now). Every morning, I have to use a sticker roller to clean out the hair off my bed, pillows and floor. My scalp has patches of hair here and there such that my head looks like some sort of artwork. Taste buds still OK. Still lethargic. Visit loo often due to good amount of fluid intake. Same nightly routine. For the rest of this week, appetite remains good. I have begun to drink freshly squeezed citrus juices - oranges, grapefruits, lemons.
*** UPDATE CHEMO #5***5/25/2015, MONDAY
MON > Took longer to start due new nurse unable to locate vein in lower left hand for IV line. Met my chemo ward resident doctor for the 1st time. Wow, what an inspiring, terrific and determine guy - survivor of polio at age 2 and Stage IV leukemia cancer as well !!! Being wheelchair bound did not stop him from loving life! The nurses told me that every year, he uses his annual leave to run marathons in different parts of the world to raise funds for charity - for different cancer org and for children stricken with cancer. What an amazing person!
This week, I experience mild diarrhea. Luckily, it's the sort that's controllable. Sent an email request to my MO requesting a standing release of my FBC so that each time before chemo, I can get a hard copy that day to enable me to track changes in blood count, platelets and other info.
FINALLY, all my hair is totally gone! As were my underarm hair, my nose hair and 75% of pubic hair. My eye brows are still there but thinning. My abdomen seems bloated and digestion slower today. Experiencing loads of gases. Feeling uncomfortable most of the day as a result. Didn't eat well for 3 days this week. Mild diarrhea continues throughout week. Laze around most of day as body didn't feel like it want me to do anything. Tried sleeping in a reclining position. Unable to sleep since bloating did not subside. Got up and mixed 2 cups of probiotics yogurt with honey, ate, and gargled mouth with biotene. Was able to sleep thereafter. Forced myself to do some exercises.
Below is a picture of the Chemo Room. The seats are comfortable and adjustable to a sleeping position if one wishes. Directly in front of every seat up above the ceiling is every patient's exclusive TV to watch any shows, movies or news they want. Everyone is given a earphone too. There are curtains between all seats. If one wishes to have privacy, these curtains can be drawn. Visitors and their families are respectful of others and do not talk loudly.
Note: Chemo #6 and #7 update posted at below this thread.
As always, thank you for visiting this thread...sending good wishes to fellow members undergoing chemotherapy as well. Have a great journey
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Glad I didn't go to your Facility - too much wasted time.For me, the procedures were a little different between the 4 DD A/C and 12 weekly Taxol but only in that I saw Dr T. before each A/C and every other time on Taxol. How I reacted to them in as very different though.
Would check in at the Check In desk. They would notify the 'Blood Tech' and in about 5 minutes she would come out to get me. Would go back to Lobby and sit down and on Dr Days' in about 5 minutes, Dr. T's RN would come get me to go back and get vital's/weight/any things you wanted to talk to him about and shortly he'd be in - sometimes he'd be in before she left. After seeing him, back to the Lobby and sometimes one of the Chemo RN's would be waiting for me, sometimes would have to wait a couple/few minutes before she came for me. Then back to either a recliner cubicle or glassed in bed d cubicle. Would get the BP/HRP/temp machine hooked up and establish the IV line and flush it (I have a port so no issues getting IV established). Would also get me warmed blanket(s) and soup, fruit, cracker, beverage, whatever I wanted then. By then another RN would come to the cubicle with the meds and they would both varify that everything matched me and that the meds ordered matched what they had. With A/C, some of the pre-meds were oral and some IV but with Taxol all were IV. I always run below 'normal' temperature wise so warmed blankets were needed. For Taxol, I had to have one of the glassed in bed cubicles as they each have their own thermostat so the temperature can be controlled so mine was raised a lot plus the warmed blankets. The bed was necessary also as soon as the IV benadryl started, I'd go 'nighty-night' til 20 minutes before the end of the infusion and wake up as alert as I had been before. On the weeks on Taxol that I didn't see Dr T I would be weighed on the way back to cubicle.
A/C was very easy - did not slow me down at all. Scalp hair and 1/2 of brows/lashes did fall out, lost appetite, lost senses of taste and smell. Taxol left me completely and utterly exhausted to the point I basically existed either in bed or on couch in front to TV but started going away a week after last infusion. 1/2 way through Taxol my K (potassium) level plummeted and had to go on mega doses of K to keep it up to normal - today even after 5+ yrs, I still have to take K to keep it up to normal.
We all have to remember that there is no 'One Size Fits All'! We are each unique in so many ways. No two of us have exactly the same DX though some are similar. We all come to this battle in different health and that can effect what TX plans can be done. (Other than some arthritis in upper back and osteopenia, I was and still am VERY healthy.) Our journey down Life's Road has been different and our Faith, or non-Faith, play upon how we deal with this (or any) battle for our Life. Our Drs are also different and the TX is not always the same. (Mine was different than most other IBCers - I did neoadjuvant and adjuvant Chemo while most do 2 neoadjuvant and no adjuvant.). Point is - our experiences are ours - no one else will have exactly the same experiences though there may or may not be similarities with others.
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Yes, everyone's experiences are different. In the end everyone makes our own decision wrt the kind of treatment they want to go with. In regards to my facility, I wouldn't consider what they do exactly a waste of time. There are, after all, between180-250 patients daily. I, for one, prefer to look at things from the positive perspective. At this center, it gives me the chance to talk to other patients waiting with me, and learn from their experiences as well. I'm grateful of these opportunities. The reason are that when one sees other patients who are in a worse off situation than ourselves, it makes us realize how lucky we are, and how important that we need to be more emphathetic towards our fellow members.
I provided feedback to the Cancer Center whenever I could. In the end, it is a Center with 1ST CLASS facilities, where the Doctors & Nurses are CARING. THIS ALONE far outweighs any other disadvantages...I am certain you read the many discussion pages here where you'll hear stories of so many of our fellow members who either have to wait a long time for results, or call and call and left messages, or who were stressed out by unresponsive doctors or medical offices that do not get back to time on a timely basis.
If you had read my timeline, you will surely noticed that things move along rather quickly = efficiency. Would surely like to read a summary of your timeline that you've experienced
Still, wish you continue good health and life's enjoyment. Have a terrific summer.
P.S. Even while in chemotherapy currently, I started going to Zumba classes twice a week, and is intend on learning a musical instrument by the end of this year. No, my enthusiasm for life has not dampened because I have BC. On the contrary, it is making me even more determined to live and cherish life
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My 'timeline' has been written here MANY times over the years but here it is again.Late June '09 - annual mammo, as had been for years with no issues.
July 31 or Aug 1 - found a lumpthe size of an almond under arm that had not been there the next the night before. My PA was on vacation so it took a week to see her.
Aug 7 - saw her at 11 (node had continued to enlarge). She had me in the Radiology Clinic at 1 that afternoon. Immediately an US and biopsies followed.
Aug 8 (Fri) I got a call from the Radiologist that the path. was IBC (as expected).
Mon - I saw my Surgeon
Wed saw my Rads Dr
Thurs saw my Chemo Dr
Full body CT, MRI, Bone, PET scans followed rapidly. A spot ' lit up' on PET on my lower jaw so it was biopsied immediately (had path.almost immediately - nothing there). Also had an EKG.
Port implanted Aug 24
Started 4 DD A/C on Aug 25
Oct 21 - 2 weeks after last A/C had UMX
Nov 11 - started 12 weekly Taxol 3 weeks after UMX
Feb 4 - a week after last Taxol started 25 rads
Feb 11 - started Femara (not available in generic letrozole form then)
So - 17 days for DX to starting neoadjuvant Chemo (24 days from first 'sign')
The time frame/prognosis/TX is so different for the different types. IF I had chosen what you did (which was 'right' for you I would not be here today - but my TX would not have been 'right' for you.
PS - I already play piano and organ, I ride/train our horses, ride my bicycle, now my yard and others to help them among so many things I do. No I don't do zumba.
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Aren't we truly blessed to move through the system so quickly in our part of our journey? Let's pray it will be the same for many of our sisters out there....You must have nimble fingers to be playing piano/organ, something I find hard to do, not because of un-nimble fingers but the reading of those notes! LOL. Hats to you. Well, I'm doing zumba because I want to build up my stamina so much so that I can take the instructor's certification, and then try to design a class appropriate in speed for cancer patients in my area.. It' progressing slowly but surely....
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Hello Everyone, especially New Fellow Members:
Found this link below where you can also get A COMPREHENSIVE EDUCATION about cancer. Everything they have in there were written by experts that can quickly bring you up to speed.. It even has a dictionary of cancer terms right at the bottom ^!!^
http://www.cancer.gov/resources-for/patients
All the Very Best to YOU and Your Family
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*** UPDATE CHEMO #6 *** 6/02/2015:
TUE > Wow, it took a long while for the nurses to try to find my vein for today's IV line. Apparently, the basilic veins (see pix below) in my lower left arm are deeper, making it somewhat difficult. So, a heating pad was brought and placed on the arm. When asked, was told that this expands the vein making it easier to find. Our attending nurses are generally not the same each week since there are so many cancer patients daily at this Cancer Center. I did not want the IV line on my lower right arm today because alternating the arms are better to prevent our veins from hardening. And it must never be done at the same location of that previous vein. It can be done an inch above or below the last point of the same vein, but not at the exact location. Doing so would damage the vein, hardening it and will take a long time for that basilic vein to heal. I didn't have a port put in because of my short 12 weeks chemo duration. It would be worth it if one's chemo is 6 months or longer.
Note: If one has an axillary dissection (ALND) done, it is good to remind the nurses as that arm should not been used for IV infusion, for drawing blood, for vaccine shots, including not lifting anything > 5 pounds etc. If one has ALND on both arms, then a port may be needed. I'm sure your MO will discuss these with you. As I did not have ALND, my arms are fine - although the loss of 1 sentinel lymph node causes the right arm to feel not fully normal :-((
Putting the IV line on the back of both my hands are out of the question as I needed to wear food gloves to ice both hands to prevent neuropathy. Eventually, Senior Nurse Myra was called in to help. She noticed brown coloring on previous locations of both my lower arms where the IV line were taped down. Apparently I had allergic reactions to the regular IV tapes (i.e.Tegaderm Film, see pix below) and weren't even aware of it. She then instructed my attending nurse that day to make a note in my patient file that wef today, only the IV 3000 Ported 7cm x 9cm tape be used (see pix below). I asked what that was, she said it's for patients who have allergic reactions to regular tape. Wow, was I glad she caught it even though I've been wondering about marks (see pix below of those darker marks on my right arm). They were red for a day or two after chemo, but not itchy. Senior nurse Myra also informed me that she has decided to use a finer size needle (0.017 mm) instead of the usual size IV needle on my thinner veins. This also result in a slower infusion rate and is less damaging to these thinner basilic veins.
New hair growth seem imminent. Bloating seemed to have disappeared. Nose hair all gone (now gotta wear mask). Appetite back to normal today though not as hungry as in the previous 5 chemo. Thus eating less. Noticed skin now prone towards breakage during shower, so stopped scrubbing body, only allowing the warm water to run through body. There were some mild non-itching hives on appearing on both arms and front of thighs. Applying deep moisturizing cream several times daily appears to help. Exercise as per normal. Appetite normal. Taste buds normal.
6/08/2015: MON, Blood Test & follow up visit with MO.
RBC, WBC and platelets within range except for the mild liver inflammation. Though it has improved since the last time I met with my MO, he said there isn't any cause for concern, which was good news. He has already scheduled me for an early consult with the RO next week to talk about radiation therapy. Radiation therapy will occur about 4 weeks after my chemo ends to give my body time to recover, he said. When I told him that some fellow members at our site were sent for radiation therapy immediately after lumpectomy and/or reconstructive surgery without recovery time, he said that is foolhardy and painful to patients. A 4-5 weeks recovery time is generally recommended. Protecting our body is so very important. It seems we shouldn't allow ourselves be put in a position of convenience to others at the expense of comfort and benefits to ourselves. Thought I just wanted to share this piece of info. Of course, you would be the best judge of your own situation. In regards to the hives on both arms and thighs, MO suggested using baby body wash if needed.
Continue exercising and going to my zumba and kick boxing weekly classes at the National Stadium. Joined the gym membership at the community center today since it's only a 5 mins walk from my home. Decided that I will start working to get my biceps/triceps and my abs back into shape now that I am stronger. Just hope I have the discipline to go there every day for a 2-hour work-out. Was told to do biceps/triceps every other day, and abs every alternate days. Will do my best to get back into shape, esp since I've put on 2.5 kg already. I need to lose about 25 kg in all, and I really want to achieve this goal.
** Pix below is an example of the 3 types of catheter/port locations available at this Cancer Center. Different hospitals may use different types. Please check with your MO's office. If you google Ports For Chemotherapy you will find a host of other different devices.
1) Implanted port aka port-a-cath (the one closest to you on the right side of this mannequin). This port is an estimated 1 inch round disk that is implanted under your skin (that flap lying down is the skin where it will be stitched back. How may stitches, how large, degree of pain if any, recovery time etc. - that you need to ask your MO for specifics). Surgery is needed of course. There will also be scars of course. It must be cleaned and there's a charge, I believe. I didn't ask for details since I wasn't particularly interested.
2) Will come back and complete this info as I had given the flyer to another cancer patient when I saw that the veins in her arms had hardened while we were waiting at registration desk. She was not aware she can ask to have a port implanted. She said it's probably because her English weren't good that she may not have understood it when they might have asked it of her. Since she has 8 more months of chemo, suggested that she ask her MO if she can get one. Of the 3 port, I thought the middle one (as shown on the right side of the mannequin) would be the best one to do and maintain.
3) Will come back and complete this section later. This is the one that on the right lower arm of the mannequin.
Below is a pix of the location of veins in our upper/lower arms. My IV line is usually placed between the elbow and wrist, and not the back of my hands. I requested it to be so because I need to wear gloves for the 2 hours icing of my hands to prevent post-chemo neuropathy.
Below is a pix of my right lower arm that shows the brown imprint left by the regular IV tape, on center right between the elbow and wrist, from the previous 5 chemo. Now, only the non-allergic IV 3000 tape is used, and I no longer have those brown marks. By late June, all the old brown marks on both arms have faded. Please note that I alternate my arm for chemo infusion each week. Since different nurses attended to me each week, I have to ensure/remind the nurse not to use the same vein for the IV location. Doing so would cause a hardening of that vein that could result in poor blood circulation later. The hardening will heal over time if you make it a point to ensure that. Again, protect our body, always, always, always.
Below is a pix of the regular IV line tape called Tegaderm. It leaves a brown spot on my right arm above. So it was changed to the non-allergic tape, the IV-3000 (see pix below). As a reminder, anyone who have had axillary lymph nodes taken out from your arm(s) cannot have an IV line to that arm - which means one has no choice but had to have a catheter put into your body. Different types of catheter will be offered to you at that time.
Below is a pix of the non-allergic IV 3000 I.V. line tape. This IV tape leaves no brown imprint on one's arm. Nurse Adele told me that there are a few patients who cannot have any tape due to their super-allergy tendencies. So, they ended up using gauzes to tape the I.V. line down.
*** UPDATE CHEMO #7 *** 6/09/2015: TUEToday's chemo went smoothly, and ended sooner. Brought my usual 1.5 litres homemade green bean juice to drink between infusion. I asked for the smaller size IV infusion needle that was used in my 6th chemo. This decrease the infusion speed of the drugs, making my chemo much more comfortable throughout. I also reminded the new attending nurse of the IV3000 tape that should now be used on my arm, and not the regular IV tape as the one in my box. Because this center has many cancer patients daily, and from where I am seated, I can see that the nurses are rather busy attending to 5-10 different types of cancer patients every day. So I can empathize with their situation. Each time before dispensing our drugs, the nurses will re-confirm our names and ID # to ensure there is no mix-up in drugs given.
Great news! Confirmed new hair growth@
Thanks for visiting... Sending good wishes to all my fellow members currently undergoing chemotherapy too...
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I am very surprised that the Center you go to would use the surgery side arm for infusion after having had a lymph node removed. I'd worry about how competent they were to do an infusion if they didn't know to not use an arm that has had surgery with even 1 node removed. Didn't they know who/what 'me' was being treated for?LE (lymphedema) can develope after ANY surgery, even when a node(s) aren't removed. Chemo and or Rads can also contribute to it. Have you yet seen an LymphEdema Therapist? One with documentable education - not some PT who 'claims to know ALL about LE'? ANY surgery or traumatic injury can result in LE ppresenting - even when nodes (or 'only 1 removed') are not removed. The potential for LE raising it's Ugly Head is not limited to only those who have had 'axillary dissection'. BP/IVs/blood draws/vaccines should not be done because the potential is always there. Also seeing an LET is important to get education and measurements.
Ports - I have a Bard Power Port. It is a purple triangle. Thescar from when it was implanted is about an inch long and is a 'hairline' that I have to really search for to see. I had no external sutures - internal with surgical glue externally and 2 butterflys.
What your Dr may say to you is not necessarily appropriate for all! We are all unique, no 2 of us are the same - even within out BC type. My TX plan was different than almost all other IBCers - it was my Drs TX plan and it worked for me - Aug will be still NED at 6 yrs Dx.
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UPDATE: CHEMO #10, 6/30/2015 (Tuesday) >>> F I N A L L Y, M Y *** L A S T *** C H E M O <<<
Originally, my last chemo session is scheduled for July 14th (12 weekly sessions). However, after Chemo #9 on 6/23/2015, I felt like I have had enough of chemo drugs in my system (being infused over a 2.5 hours each time, although in actuality it generally takes from 3.5 to 4.0 hours, because of recovery time, going to toilet time, and trying to find my basilic vein time etc)... On my follow up visit with my MO this past Monday, 6/29/2015, I was going to let him know that Chemo #9 would be my last.
Since there are only 3 more sessions left, he asked why not finish it? I gave my reasons as stated above. Finally, just to make him happy, I said I will do one more session, Chemo #10 and that's it. Tho he classified the non-completion of my 12 weeks treatment as sub-optimal in his report, I won't hold it against him (for me it's subjective anyway, based on my research). I've thought long and hard about it a 2nd time, and am still comfortable with my decision.
I have also come to the conclusion that THE LAW OF DIMINISHING RETURNS** in economics also applies to chemotherapy as well.
** Defined as: As more investment is made, overall return on that investment increases at a declining rate.
My interpretation of this law (which I call THE LAW OF DIMINISHING EFFECTIVENESS) in terms of chemotherapy is that "as more and more chemo drugs are given, overall effectiveness of these drugs increases at a decreasing rate so that beyond that certain amount, chemo drugs become more harmful (toxic) and less beneficial to the patient ." Again, this is only Yours Truly's believe.
Another reason is that since I've decided to also do radiotherapy now (starting August 11,2015), I see no reason in having more chemo drugs than needed put into me. Thus, my MO signed off on it, and here I am, at the Jasmine chemo ward at 10 past noon, Tuesday of June 30th, 2015, seated at J14 doing the last of my chemo.
While waiting for my usual blood pressure to be taken, and for my now favorite Nurse Myra to come and put the IV line in for me, I suddenly felt somewhat emotional. On the one hand, I am glad that the 2nd leg of my cancer journey will be over after today. On the other hand, I knew I will miss the many other cancer patients whom I've met with, talked to, laughed and shared information together. It was some sort of unspoken kinship we have whenever we see or run into each other, at any part within the Cancer Center. Our different types of cancers have brought us together.
At each of my chemo session over the past 10 weeks, whenever I looked around the chemo ward, I would make eye contact with my fellow cancer patients. We would smile at or nod to one another, silently encouraging and sending good wishes and strength to each other. I was always happy to see my fellow cancer patients, no matter their age, new or regular... Sometimes, their kid or family member would stop by my seat to come talk to me, for which I welcome.
For example, while waiting at the chemo ward registration for my turn to be called, a Brunei family of 4 were seated behind me. The mother smiled as I sat down. I asked how she was. She looked nervous and said it's her first chemo session. I asked if she knows what drug(s) she will be given? She had no idea as her English wasn't good. So she woke her teenage daughter up. I repeated the question, but the daughter said they have no idea either. I explained that if she wishes to know what drug(s) her mother will be having, or how long her chemo infusion is, and what side effects the drug may cause, she could take her mom to the pharmacy behind the reception and asks to speak to any of the Pharmacist there. Thst the latter will gladly and patiently explained it to them. So they did.
About 10 minutes later, I saw that their number was called, and went to inform them. Shortly afterwards, my number blinked. When I entered my ward, the mother waved to me. I pointed to where my seat was, and she nodded. 30 minutes later, the daughter came to my seat and showed me the name of the drug her mother is having. I took a piece of paper from my backpack and wrote www.chemocare.com down, and suggested she visits the site so she can read up more about all the drugs. That site contains a very comprehensive info of every chemo drugs, including its side effects, precautions to take, self care tips, monitoring, etc. Told her that the more she knows, the more she can help her mother since her father cannot speak English. She further asked what the 1.5 liter of green colored fluid is that I've been carrying. I explained it's my green bean soup that I made every morning tgat I will always bring to drink during chemo infusion to hydrate my body. In addition, it helps to reduce side effects for me. This soup is well known in TCM to detoxify the body. She asked me for the recipe (see below) and I gladly shared it with her. She thanked me, shook my hand, brought it to her lips and kissed it. I was surprised, and later discovered that in her culture, it's their way of respectfully thanking someone older than her
After my pre-medication and recovery time, my attending nurse came quickly to start my Herceptin infusion. 15 mins into treatment, I looked up and saw a lady in a dark dress standing next to my seat. She asked if she could speak to me. I said of course, and invited her to have a seat. She said she heard me talking to the young lady earlier about how to cook the green bean soup. She too had heard about its detoxifying abilities and wanted to know how to cook it. Naturally I obliged. I found out that her husband has nose cancer. According to her, his pessimism, edginess and change of temperament made their life miserable. It seems they sold their restaurant business after many years of hard work, and they were looking forward to travelling around the world to enjoy the fruits of their labor. Just before they leave, her husband's ear went deaf.
During an examination, it was found that he's got nose cancer. Naturally, their plans are now in ruined, and they have to deal with it. I took out another piece of paper and wrote down the National Cancer Institute website for her so she can read up everything she wanted to know about nose cancer under Nasal Cavity and Paranasal Sinus Cancer. Hopefully, she can find something of use to her and her husband. She thanked me and went back to her husband's side.
These are just 3 of the many different fellow cancer patients I met whenever I come for my chemo treatment, including those with lung, liver, ovarian, bone and other forms of cancers. I didnt mind speaking with my fellow canver patients, or listening to their stories.. After all, while waiting, we have lots of time on our hands. None of us are here by choice. Why not learn something about others? Maybe I'll even learn something along the way... I will cherish all these moments.
Even as I'm writing this, I kept thinking back to a young mother I met several Chemos ago, with her 6 year old son in tow. We were seated next to each other with a column between us, waiting for our follow up visit with our respective doctors. By chance I looked to my left and she looked up to her right. Our eyes met simultaneously and we smiled at each other. I asked how she was.. She quietly said "I've got Stage IV BC, and it's spread to my liver..." I felt so terrible for her pain, yet admired her courage at the same time. We talked for a little while longer. She told me she wanted to be on the immunotherapy clinical trials here but did not qualify. I ask her not to lose hope, and got her email so I could send her links of NCI, SITU and The Cancer Immunotherapy Trials Network's trials so she could write to them too. That was all I could offer. .I truly truly wish her well in my thoughts and prayers...I plan on emailing after I am done today.
Overall, my chemo journey has not been as bad as I had expected. For that, I am truly, truly thankful. However, I also believe that some of the things I did before and during chemo helped to reduce the overall SEs that I would have gotten had I done nothing. For instance, a month before chemo, I started taking supplements that builds up my immune system as well as OPC-3 anti-oxidants on a daily basis. When chemo started, I made sure that my body is hydrated daily with 4-5 liters of fluid (water, soups, green bean soup, juices etc) to counter the drugs, especially in the initial 5 chemo sessions. I did not take supplements on chemo day or day after, but continue thereafter until before the next chemo day so as not to interfere with the drugs for that 2 days. I kept up this routine consistently. Throughout it all, my appetite has remained steady and good, as did my taste buds, which was unchanged.
Fortunately, I did not get tired easily. I gargled my mouth with Biotene 2-3 times a day to prevent mouth sores and it has worked thus far. There were a few days of very mild diarrhea in one week, but it was quite manageable, and an occasional fatigue here and there that did not prevent me from doing my weekly zumba or kickboxing exercises or daily evening walks by the river.
However, by the time Chemo 7 and 8 came around, I found my energy level not as good such that zumba and kickboxing became a little exhausting. So I switched to working out at a gym, doing muscles building and workout exercises 3-4 mornings a week for 1 to1.5 hours. I adjusted my schedules so that I sleep an hour or two longer. Before, I used to get up at around 0730-0800 hours. Now I let my body dictate the amount of sleep it needs. This seem to work too.
I supposed the accumulation of so much drugs over 10 weeks, no matter how good my body was in the initial 50% of this chemo journey, at some point is bound to hit me later. Thus I surmise this is what is currently happening to me, from these last few sessions....I kept reminding myself to think posit8vely. Good thing is that I have about 5 weeks to recover before heading into 3 weeks of weekly radiation therapy.
I'm so glad it's not a long radiation regimen - 2 weeks of daily 10 mins session on the whole breast and 1 final week of booster to the location where my tumor was previously.
I had thought that since Tuesday was my last chemo, I need not paint my nails black. You may have read in one of my chemo notes that taxane drugs such as paclitaxel and docetaxel can result in nail sensitivity to light, resulting in cracked, blackened or warped nails.
I had read somewhere that by painting one's nail black, this will help prevent those from happening. Well, I did paint my nails black throughout it all and it worked - meaning it was looking good.
However, last night, I foolishly took off my nail polish thinking that I don't need it anymore. When I got up this morning, the edges and some center secti9ns of my nails started cracking!!!! (see pictures below). That's because my bed is next to the windows which fully facesthe light.
I quickly drew the curtains, trimmed off the nail edges, and re-painted them with dark nail polish. I think I will do this for another week or two just to ensure that the taxol has left my body. I will report back later as to what happens..
My hair has grown to about 2/3 inch now,just evenly, lightly all around my entire head. I still wear my headscarf when I go out. I made sure to apply lots of sunblock on my face and hands. I discovered one of the good things to come out of this chemo is that most of the brown (age) spots on the back of both my lower legs and front of thighs are gone.
With respect to the icing of both my hands and legs to reduce/prevent neuropathy seemed to have worked. Soaking them in cold, cold, cold ice water up to my ankles for 2 hours during the paclitaxel portion of infusion (actually, 30 mins before, 60 mins during, and 30 more mins after) proved beneficial after all. My fingertips, however, do experience mild numbness or tingling occasionally, esp after Chemo #9.
My MO said I should have soaked my entire hands in the ice water, not just my fingers...so I did not do it exactly right. Since this. only occurs after chemo #9, he said to give it time and that that may not last for long...we'll have to see. It hasn't affected my ability to write or type or eat with a spoon or fork. and I will come back to this thread to report back after some time.
My lumpectomy via the Round Block method is still healing slowly and nicely...It has settled into a size 36D (versus my original 38D).
During my 1st consult with my Radiation Oncologist (RO) this past Monday, I found out that there were metal clips inside where my 2.5 cm tumor was taken out. I emailed my Oncoplastic Surgeon asking about it. She replied in the affirmative and that there were six 3 mm size clips in. I asked why? Apparently they are there to facilitate the accuracy of radiation to my whole breast during therapy, and that it's a standard procedure.
I've always wondered about it when I massaged my breast each night feeling some hardness, Now I know why I cannot lay on my right side for a long while. Which also explains why it gets sore after a while. I will follow up to see if these clips can be removed after the completion of radiation therapy.
Anyway, my RO stated something of interest. He said some large breasted patients of his ended up with their breast being one size larger after radiation. I asked "Really?" Well! You know what that means right? :-))
Well, that's all I could think of for now...I'm getting some amount chemo brain in that I feel my head is heavy from the accumulation of 10 weeks of chemo drugs, haha...:-D..So I will lie down a bit for now...I know it will go away eventually...so, I'm not worried about it :-)))
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UPDATE: 07/04/2015
- Happy 4th of July to everyone. Hope you all had a swell one....
This past Fri/Sat, the food I ate started to feel tasteless except for most fruits...and I found that I needed longer sleep. My energy level isn't as good as before Chemo #9....In fact, it has fallen to my lowest level ever!!!. Previously at the gym, I was able to do 3 sets of 20 of different weights exercises without any problem However, after the last chemo #10 especially, I can only do 2 sets of 12-15. I also exhausts easier now....I feel somewhat disappointment but have to accept the fact of the full force of these chemo drugs is finally doing its stuff in my body.
The Law of Diminishing Effectiveness came to my mind then....I wondered if I had inadvertently caused problems for myself by agreeing to go for that 1 more chemo session? I began to feel the full force of the accumulation of 10 weekly 2.5 hours chemo infusions....My mouth started tasting more chemical and dryer than it had ever been.... So I continue with hydrating myself even more.... This is more pronounced at night where I have to get up hourly to drink my green bean juice to reduce the unpleasant taste, and getting the drugs flushed out of my system as much as possible.. I even felt these drugs sucking every part of the fluids inside my body even during sleep...This made me more determined to do whatever I can to keep it from happening. I continue taking my supplement intake of OPC-3s and immune system booster now include fish oil as well..
As each day progresses, I'm more convinced than ever that the over medication of chemo could have contributed to my sudden decrease in strength... I believe our body's reaction is its own way of telling us when we get too much of something...
I've also discovered that that after chemo 10, my sweat stinks like crazy...I mean not the usual sweaty smell, but the really, really toxicky, chemically, stinky smell that even I can't stand it that I have to take several showers a day to get rid of it...The same happens when nature has to call one away. It was exceedingly bad...The good thing to come out of this is that these toxins are being discharged from the body. So, drinking lots of fluid helped to make it bearable..
WRT radiation down the road, my RO finally replied to my email seeking clarification as to the amount of radiation dosage I will get. Radiations dosage are measured in "Grays or Gy." I shall be getting 40 Grays over that 3 weeks period. That's good as it is not a high dosage. Our own site here has a great article on it about rad dosage. Worth reading.
*** HOW TO MAKE GREEN BEAN DRINK (Pix Below)***
1) Wash 2/3 cup green beans in water, at least twice and pour into a pot.
2) Add 2 liters of water into the pot. Turn to high heat, and let it cook till boiling. As soon as the water starts boiling, set it to low heat and let it cook no more than 12-15. minutes. Do not overcook beyond thst because if it does, it loses the detox quality and becomes a cooling soup for a beats body. Dont let the souoturn too green brownish color. If you time it correctly, it should come out golden yellow. If it is light green, still OK.
3) When the beans are cooked, , turn off the heat. Do not cover the pot. Use a sieve and scoop up such that it filled 1/2 or 1/3 of the sieve. Use the back of a large ladle or spoon to crush the beans. Then soak it back in the soup, You want to extract the nutrients from inside the crushed beans. Continue until most of the beans are done.
4) Scoop out and discard all crushed beans. If you like to eat it, leave it to cool and then refrigerate.
5) Leave the soup to cool. When cool, fill it into your container or chill it in the refrigerator until you are ready to drink or take it with you on chemo day.
Note 1: On occasion, I will forget to do it the day before. So I will get up very early and cook it. To help cool it down, I fill a basin with 1/4 water, set the entire pot into the basin, and add ice around it. This really helps cool the soup down quickly (transfer of heat from pot to water in basin). When water in basin is warm or hot, I discard it and refill it, set the pot in it again, and re-fill it with ice. It never fail to work, and I was able to leave for my early morning blood test and chemo session with my drink.
Note 2: Please do not add any sugar in it. Under normal circumstances, we do add rock or brown sugar. But since sugar feeds cancer, NOTHING IS ADDED TO IT. We will drink it in its natural flavor until we are done with chemotherapy, and then some. If you add sugar, it will be totally futile.
Note 3: If you want a really thick flavor, you could put the cooked beans and soup in a blender, and consume it that way...but during chemo infusion, I find it easier to just drink the soup. If it's refrigerated, I would normally leave it to room temperature. It's better to consume unchill for chemo. Under normal circumstances, we can drink it hot or cold.
Note 4: I have also started to make and drink barley water to add variety to my sources of fluid intake. Again, no sugar added.
Note 5: If your green bean soup turns red, that means you've overcooked it. Still drinkable, but less nutrients.
Hope these info helps.
Above is the 1.5 liters Green Bean Drink I take with me to my chemo infusion each time. I also brought food to consume so my stomach wont be empty during infusion. I'm gonna start adding homemade barley water to my fluid intake too to see if it will make any difference. -
Update: July 9th, 2015 (Thursday)
Follow up visit today with both my Surgical Oncologist (SO) and Onco-plastic Surgeon (SPO) consecutively. Both Doctors checked my right breast and are happy that is it continuing to heal nicely. When asked how long the scar around the areola will heal, was told it would slowing fade from about 8 months to a year. Was also told that radiation will help speed up the scarring, though it could result in a slight hardening of the breast. Now, this explains why the breast could go back up one size after therapy. I found out too how the hardening of the breast can be avoiding during radiation. I will write this during the 3rd leg of my journey under "Radiation Update."
Also asked about the 6 clips that were placed inside my right breast during re-constructive surgery, and asked to see what they looked like. Before seeing it, I was told each was like 3 mm. They are used to help find the location of the tumor with accuracy during the last week of rads boost to that location. I've been imagining it to be like a tiny rectangular metal there and didn't feel comfortable. However, having finally seen it today, I felt extremely relieved. There are only about 2 mm about the size of 3 grains of sand (see the diamond like grain below the arrow) and of titanium. Considering that they are not as big as I had imagined, I guess it's OK not to take it out. I was also told that it wont heat up during rads, nor will they cause any problem if I am going through a metal detector at the airport. That's most certainly a relieved too.
Since my Medical Onc is out on vacation, I decided to ask my SO about my decrease in energy level, stamina and strength, She said that I'm currently experiencing the FULL FORCE of the Chemotherapy, and that it will take about a month for all the drugs in my body to be discharged. She advised that I go back to doing daily walking exercises instead of gym workouts...I informed her that even waking seems like work now...she said I must do it to keep up my energy and stamina even though I don't feel like it now.
I shall be going for my post chemo full cardio-toxicity test next week, and a follow up visit with my MO the week after. Now I understood why this test is being given 2 weeks after chemo...Will report to share the results with you.
OK >> that's it for now....Talk to you another time, and have a great day / week / month etc..
Sending terrific summer wishes your way
Below is the actual size of one of 6 titanium clips placed inside my right breast during breast reconstructive surgery.
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UPDATE: July 21, 2015 (TUESDAY)
It's been 3 weeks since my last chemo session and here's the latest update.
My hair continues to grow back slowly, and I have a full head of very fuzzy light hair...it looks silvery and around the scalp's perimeter, it dark. Kind of strange, though I wish it would speed up in its growth...hehe. I forgot to mention that my scalp feels rather tender and has a stickiness around it. No matter how often I wash my head, or with whatever shampoo thus far, I have not been able to get rid of that sticky feeling. This stickiness feels like one's scalp has sweated all over and it's left on one's head. I'll continue to experiment with different product to see if I can find anything that will help. If anyone out there has experienced the same, and found something that works, please let me know.
The decrease in energy and lethargy the week and a half following the last chemo is receding.. I continue to drink as much as 4 liters of fluid as I can to counter the dehydrating effects of the Herceptin and paclitaxel drugs.
My only loss in taste, lasting about a week and a half post-chemo gradually disappeared too. At that time when my appetite decreased. It didn't bother me knowing coz I was glad to eat less and lose some weight since I had gained about 3 kg or 6.6 pounds over the 9 weeks weekly session.
I continue to take my 3 natural supplements, one to boost my immune system (Brand: Agaricus Blazei) , the other two being anti-oxidants (Red wine and Grape seed OPC-3)... I believe taking these help with my recovery....on days I forgot, I seem to felt weaker so I try not to forget.
I started resuming my once a week zumba cardio lessons but I manage to last for only 30 minutes...I also resume doing my weight training at they gym as I got stronger now... I still drink lots of fluid. Each time I go to the toilet, I see the drugs being discharged. Knowing that there's less toxins in my body made me feel good. I also resume walking by the river whenever the weather is good....
My nails - I cleaned off the dark nail colors two weeks after chemo 10, and decided to leave it colorless to see what happens. It seemed it's less sensitive to light now because my nails did not crack as it did the last time. Now, I can go back to using the usual light nail colors that I like - pink, lilac, white or wine red. The same goes for my toenails.
The brief chemo brain I had experienced a week after chemo 10 is now fading - meaning my mind is less cloudy. I watch as many documentary shows as I can to keep my mind sharp or play mahjong with my siblings, relatives or their friends. That helps tremendously.
The only thing that's a little different is that instead of getting up earlier than I usually did before chemo 8, I continue to get up later, like around half past 9 or 10. Don't really want to force myself to get up early if my body doesn't want to. Perhaps after another week when my body has more time to recover from the chemo drugs, I could settle back to my previous routine. Try to enjoy the longer morning sleep as it won't lasts forever as I need to get back to work, after September. Working on a free lance basis, I'm under no pressure...though I must admit I'm not used to not working at all.
UPDATE: July 23, 2015 (THURSDAY) - TRANSTHORACIC ECHOCARDIOGRAM TESTING (aka TTE)
Went to the National Heart Center to get a Transthoracic Echocardiogram (aka TTE) done because my MO wanted to check if the amount of Herceptin I had for my treatment resulted in cardiotoxicity to my heart. The procedure took about an hour overall. I enjoyed talking to my Sonographer throughout the entire procedure. I do not expect any cardio-toxicity because I had chosen a treatment plan close to the one I wanted, based on my research. Nevertheless, I shall report back and share several TTE images too.
P.S. As of today, July 30th, 2015, I no longer need longer sleep. I can revert back to getting up at around 8000 hours...A very encouraging sign indeed.
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***START*** OF *** RADIATION*** JOURNEY***
UPDATE: July 29, 2015 (Wednesday): PRE-RADs PREPARATIONS & MARKINGS
Today is the day for my appointment at the Radiation Oncology Department of the Cancer Center. I had CT planning scans done in two position (a) prone and (b) supine. During the scans, I had to hold still the entire time while 2 radiation therapists made markings on my back, (for the prone position) and then the front center, and right breast (for the supine position).
Markings are done either using tattoo (which are just a tiny dot and permanent) or Henna dyes. The latter lasts about a week to a week and a half. This means markings need to be re-done for a 2nd time. I've chosen Henna, but may go with tattoos for my back later.
Since radiation therapy is only 3 weeks (15 sessions in all, total dosage 40 grays or 40/15 = 2.67 gray or 267 centigray per session). Since I am quite comfortable with the prone position, I've decided to go with this position. As I will be lying on my stomach with my right breast hanging down from a hole on a massage-like table, the angle of radiation will come diagonally from both sides. This position results in the least damage to other parts and organs in my bod especially the lungs. The supine position will cause some damage to lungs - so if you can, avoid this position..
Was also informed that on the actual day (starting Aug 12) the entire procedure will take about 30 minutes in all - with 10-15 mins or so to align my body correctly, and another 10-15 minutes for radiation. I'll get some pictures taken and post it below at a later stage. BTW my simulation will be on Aug 11.
POST CHEMO NOTEs:
It's been 4 weeks since my last chemo. No longer have any chemo brain. I have resumed weight exercises at the gym. In addition, I've regained most of my strength, although I still experience minor degree of pantings....Overall, I have gained about 5 pounds which I intend to lose after radiation. RO said that during radiation, I should not stretch the breast area too much as it can be quite sensitive - thus I need to cut back on my weight training exercises.
Appetite is good, and no longer feel dehydrated. Hair is still fuzzy and only about 2/3 of an inch long... My scalp continues to remain sticky. I still sweat easily and that didn't help. I wonder if this slows my hair growth.. Thankfully, mMy nose hair have all grown right back.
Since last week, I've gone back to the gym to work out after regaining my strength that was temporarily lost the two weeks after my last chemo. I noticed, however, that even with one sentinel lymph node was taken out of my right underarm, that arm is slightly weakened (see pix above). When I use weights during training, my right arm cannot carry the weight in the same straight manner as my left. I further noticed that my right should droop about 1/2 inch. So when I do weight training, I try to straighten my right shoulder. .
That's the reason why strongly suggest that unless all your sentinel lymph nodes are cancerous (positive), please DO NOT lightly give permission to have your axillary lymph nodes taken out. Save them if you can, and wherever possible. Please read the link posted above about why all these lymph nodes in our body are so so so precious and important.
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Hi guys... so I had a abdominal/pelvic CT scan on Friday, July 24th. I had blood in my urine with symptoms of urgency, discomfort in my abdomen and urethra area, etc. all during working hours a couple of weeks ago; when I got home the same evening all the symptoms had ceased. I called my doctor and her nurse called me back & set up an appt. to see her the very next day. I had a urinalysis done she wanted to rule out UTI... got the test results back the next day and tested negative for a UTI. My PCP called and said that I had 5 - 10 RBC's so she ordered a CT scan to rule out kidney stones, masses, etc. I had the scan done at 1:15pm last Friday... it took about 20 minutes... scans taken pre-contrast, after IV contrast... and I waited 10 minutes so that the contrast could absorb more into my organs and another set of films were taken.
Got home around 5:00 and my doctor called and left a message saying that she'd thought I would like to know that the scan showed no masses, but did show some renal narrowing of my kidneys and that we would talk later. She didn't mention if my bladder showed anything, etc. I know that this type of CT scan, abdominal/pelvic, would show this area. My question is, were "ALL" of the films looked at and no masses showed up anywhere, or was she just referring to my kidneys? I haven't gotten the official test results back yet and don't know why it is taking so long. Now I am worried that there was something more found after she called. Any thoughts????
I would appreciate any feedback/insight... opinions, you can give me. ~ Dee
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UPDATE : August 3rd, 2015 (MONDAY)
Post Chemo Follow Up Visit with MO (Medical Oncology)
On July 23,2015, my MO sent me for a Transthoracic Echocardiography (TTE) exam to check if the amount of Herceptin given has affected my heart (i.e. any cardio toxicity). Luckily, the result indicated my heart is normal and has not been affected by the Herceptin drug during chemo.
However, I did noticed that I have a tendency to pant on long walks or when I am walking up a flight of staircases, even if it is from one floor to the next. I've informed my MO of this as well as the fact that every once in a while, I feel my chest section just below my breast tightens up such that I feel some difficulty breathing. He stated that on rare occasion, paclitaxel drugs could cause scaring of the lungs, which means that it could affect one's breathing. He suggested a C.T. scan to check if that is the case. That's the first I've heard of lungs scarring, When I looked it up, it seems pretty scary if it is. So I've decided to ask for a C.T. scan as I really want to know the condition of my lungs, plus my insurance covers this. So why not.
Since I shall be going for radiation therapy simulation this coming Tuesday (Aug 11) and actual radiation starts on Aug. 12, I may have to wait until radiation is over. But I'll send my MO an email to find out if the CT scan will interfere with my radiation treatment or vice-versa before proceeding. Will come back and report on this when I get more info and confirmation.
Below is a description and procedure of TTE taken from the U.S. National Library of Medicine if you are interested in knowing what it is and how it is done. This took 45 minutes. Please note that THIS IS different from the ordinary ECG heart test that takes only 10-15 minutes.
How the TTE Test is Performed - TRANSTHORACIC ECHOCARDIOGRAM (aka TTE) - from National Library of Medicine link below.
TTE is the type of echocardiogram that most people will have. An echocardiogram is a test that uses sound waves to create pictures of the heart. The picture is more detailed than a standard x-ray image. An echocardiogram does not expose you to radiation
- A trained sonographer performs the test. A heart doctor (cardiologist) interprets the results.
- An instrument called a transducer is placed on your ribs near the breast bone and directed toward the heart. This device releases high-frequency sound waves. Images will be taken at other locations as well, including underneath and slightly to the left of your nipple and in the upper abdomen.
- The transducer picks up the echoes of sound waves and transmits them as electrical impulses. The echocardiography machine converts these impulses into moving pictures of the heart. Still pictures are also taken.
- Pictures can be two-dimensional or three-dimensional. The type of picture will depend on the part of the heart being evaluated and the type of machine.
- A Doppler echocardiogram records the motion of blood through the heart.
Here's the link if you wish to read more...
http://www.nlm.nih.gov/medlineplus/ency/article/003869.htm
My hair started growing and I love, love, love the soft feeling....the stickiness in the scalp is now gone. BUT in its place, I found that my head sweat excessively, so much so that I must carry a towel with me wherever I go. I sweat at night. It's almost like I've just gotten out of the shower without towel drying my head sort of sweaty feeling. I wonder if this is temporary. Hmmm, let's wait and see.
P.S. Please see below for images of my TTE.
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Dear Nat:Thanks for your thread. It is very informative and helpful.
Good luck with your radiation. (I did not have chemo.) I tolerated the radiation very well with no side effects. Hopefully, you will not have and SE either.
614
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@614....glad you've found it helpful....thanks for your well wishes...Just got back from my radiation simulation....it was an interesting experience. At my request, my radiation therapist took pictures of my simulation so that I can remember this forever, and to share them with new fellow members here...
Sending back good wishes your way too...take care now..
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Update: Aug. 11, 2015 (Tuesday) - RADIOTHERAPY SIMULATION DAY
Went for my radiation simulation at 1015 hours this morning. Was advised to wear loose fitting blouses or shirts and comfy pants throughout my upcoming radiation treatment. Anyway, I didn't have to wait long...My wonderful radiation therapist (RTs) Ms. O took me to a room and explained the process to me, along with chart images from the planning CT Scans done last week. The simulation took about 45 minutes in all. At my request, she took pic of me in the simulation room - I'm sharing them below with you.
The top pix is of me in the prone position before marking adjustments. X-rays are then taken periodically. They are used to match the CT planning scans done last week to ensure that all markings are spot-on (i.e. aligned with each other). The middle pic shows the right breast with adjustments made. The bottom pix shows what my breast looks like after completion of simulation and adjusted markings.
NOTICE that I am in the prone, NOT supine position. This position means no radiation reaching and damaging my right lung. If you could, please ask for this prone position too. If the hospital you go to does offer this position, please consider finding one that does - because in the supine position, daily radiation exposure on your lung(s) will result in its/their scaring and hardening, which will result in you having difficulty breathing down the road. That is something I nor any of us want . Who wants more damage to our body, right? It is our duty to protect our body whenever we can at every leg of our cancer journey.
Tomorrow will be the start of my 1st radiation treatment (RT). I thought I was going in for only 3 weeks, but found out today that I was scheduled for 4 weeks (3 weeks whole breast radiation and 1 week booster). I informed my Radiation Oncologist that I had psyche myself up for 3 weeks, and depending on how it goes, will decide later whether I want the booster or not. So, if those of you out there have had booster, could you please share your experience and whether it was worth it for you ? Thank you in advance
Above left: Me in the simulation room before adj markings. Above right: Me in the simulation room after adjusted markings
Above left: View of me in prone position being marked. Above Right: My Breast After Marking Adjustments
Could you see the naturalness of my reconstructed breast that was beautifully done using the Round Block Technique after breast conserving surgery (BCS aka lumpectomy)? Doesn't it looks just like my normal left breast below? The pic above and below will enable you to make this comparison. My right breast (which is your left if you are looking at it) is the breast I had lumpectomy. Could you also see the 4 inch scar above (was 5 inch) from the sentinel lymph node surgery from this angle?
I regretted not asking my SO to refrain from taking any nodes if I had clear margins (which I did).. My oversight caused the loss of one precious sentinel lymph node - even this loss of just 1 node resulted in my right arms being somewhat stiffer and not as strong as before. That's why I'm a strong advocate of not losing any nodes if you can ever help it. If you have a choice to save it, protect it, please please do so and not give it up lightly. You'll only know if you read a lot about it, and educate yourself and give it careful thoughts, and not leave this decision to others...I guess I didn't read enough about the significance of clear margins at that time. I hope you will learn from my expensive oversight. Please be aware it is standard procedure to take out margins and sentinel nodes. You just have to find out what the policy is for the hospital you go to - and then decide what sort of clear margins is clear to make this decision. 0.8mm-10mm can be considered clear, from my readings, that is. Some people would say 0.5mm but I'll chose the higher standard.
My entire right breast areola was cut out during surgery by my SO (pix below, see the scaring around it which is healing nicely) so she could take out the tumor in the upper right quadrant from that angle. Thereafter, my Onco-plastic surgeon immediately did reconstructive surgery using fat from within the breast by re-arranging it. The areola was then stitched back using dissolvable sutures, and glued over with medical glue to protect the sutures. The latter eventually fell off by itself. My right breast is supposed to be smaller than my left breast (your left if you are looking at this pix). From this pix taken today, it seems as though my right reconstructed breast is slightly bigger than my normal left breast isn't it. That's due to the swelling within. When the scar around the areola heals completely, it will look as natural as my left areola-- so I was told by my SO. However I was also told by my RO that during radiation, that the right breast will also swell and so will be bigger than my left breast. When the swelling subside, it will eventually become a size smaller again. That if I'm lucky, it may just return to a size similar to my left breast. Interesting, isn't it? I discovered "lucky" to mean the hardening from within...I thought about it....and need to find out why.
The line in the center of my chest is tentatively marked during simulation for a supine position. In the end, I opted for the safer prone position above so my lungs won't be scarred from radiation. Patients who have mastectomy who have to undergo radiotherapy most likely have to do it in the supine position (lying on your back). Consequently, the chances of getting lung scarring is higher. One suggestion is to find out about the total dosage (gray) given for the entire treatment, and asked to have radiation over a longer period at a lower dosage. Please go to the National Library of Medicine PubMed section and search for clinical articles with respect to this that will give you more info to help you come to a decision for your own case.
P.S. In case you are wondering, I was wearing my black head scarf during simulation. On actual RAD, I was told I will have to take it off.
PPS. My MO said I should consult with my RO to see if CT Scan for lungs can be scheduled with him. I spoke with the radiology department manager about it. She said that I will be getting a full CT Scan of my lungs upon the completion of radiotherapy anyway. If, however, I would like one sooner, I can speak with my RO (her boss) next Wednesday when I get to see him. Apparently, after every week of radiation, i'm scheduled to have a follow up visit with him to check on how my breast is taking these radiation beams. Will report back..
POST CHEMO UPDATE:
The excessive sweating I've been experiencing throughout the day has not abated. In fact, it's so bad that I have to wipe it a few times a day. The only time is when I sit under the fan to cool off. I only take cold showers. But at night, when I sleep, my head does sweat so much when it's hot that I have to fold a towel as a pillow and lay my head on it to prevent the bedsheet and mattress from getting wet. Let's see how long this continues. Will report back.
PPPS. Thanks for visiting... Sending good wishes to all my fellow members currently undergoing radiation therapy as well :-))
PPPPS - 09/11/2015 - I just wanted to come back and add that after speaking with several of the radiation therapists, they've informed me that this machine they are using, well, they can program it in such a way that they can block radiation from getting into sections of the lungs or inner chest walls for patients in the supine position. Wow, that's really great news. I'll ask some more when I visit the center again...Please standby.
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UPDATE: RAD #1 of 15 Sessions , August 12, 2015 --> EXTERNAL BEAM RADIATION THERAPY
FINALLY, the start of another day of reckoning of the 3rd Leg of my BC journey. I have posted pictures below of today's treatment for interested members.
1) Unlike chemo, there is no blood test needed.
2) There was no need to buy any camies as the markings are well and cleanly done as you can see in the pic posted during simulation.
3) 100% aloe Vera is great to use after each radiation. If you can find freshly cut aloe vera leaves, thats even better. Thereafter, emu and other non fragrant moisturising cream or oil work just as great.
Treatment schedule, which was generated yesterday Aug 11, was given to me (see pix below). Reported @1025 hours this morning at the Radiation Oncology Department (ROD) where my RADs case officer met up with me to explain the entire registration, check-in, gown changing etc. procedure. I was introduced to the entire team of 5 Radiation Therapists who will be working with/on me over the next 3-4 weeks. Didn't had to wait long, and was quickly taken to "The Room."
I was again lying in the prone position. Since my back has all the tattoo markings needed for alignment, and since adjustment markings from yesterday's simulation were done, the entire process to get me ready for RAD #1 took only about 10 minutes. After I was properly aligned, several X-ray pictures were taken of my position to affirm exact alignment before my 1 minute radiation kicked in. This team of RTs seem to be more experienced than the simulation team who had worked on me yesterday at the other location next to my cancer canter. Wow, I thought, "That didn't take long!?" I must
admit that I could feel the warm seeping into my breast when radiation hit.
Then it was over. And I went back to change out of my gown - and was pleasantly surprised that I was out as quickly as I came. During changing, I applied a liberal amount of 100% aloe vera gel to my entire breast. Throughout the entire afternoon, I continue to apply either emu oil or aloe vera. It did get warm and itchy in the area between my breast and where the sentinel lymph node scar was later that evening. Applying these cream kept the itchiness down. I did feel a little fatigue late afternoon, and slept for about an hour and a half or so. Hope any SE will be fewer and imperceptible - will see ...
I've also added pix of the planned images taken yesterday of how the radiation beams was and will be directed at my breast. It's interesting to know the details of such things - to me at least, as I want to know everything that's being done to any part of my body in any kind of treatment or treatment plan. Although in one of the pix, I was somewhat concerned about the yellow line where it was too close to the edge of my right lung. I asked my case officer if the photon beams could be adjusted downwards a little as I don't want it touching the surface of my lung. She believes it wouldn't but that she would mention it to my RO...I truly hope it was adjusted today as I don't really want any scaring on the lung...
This Oncology Department has teams of the following to service all patients:
(a) Radiation Oncologist - Dr. who takes overall charge of your treatment.
(b) Radiation Therapists - the team who do the planning and administer patient treatment through radiation machines.
(c) Nursing staff - are there to attend to patients' need eg wound dressing, giving medication, injection etc. where needed. They also help to coordinate patient treatment.
(d) Physicist - ensures that radiation machines work properly and accurately.
(e) Dosimetrist - works closely with RO to calculate and plan patient treatment.
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(1) Below is a pix of my radiotherapy schedule with dates/times.
(2) Pix 2 & 3 below are images of my planned CT Scan showing the Angle of Entry/Exit of the radiation beam for Phase I and Phase II of radiation treatment . The different colored lines in the left pix indicate the gradual radiation of the whole breast over the entire treatment, The red patch in the lower right pic shows the location where the booster will be given (ex tumor location) in the final week (Phase II) of treatment, should I choose to do it.
(3) Below are are actual pictures of RAD #1 taken of me today inside the RAD's Room this morning. The machine can move 360 degrees to take X-ray pictures as well as directing the RAD beam to the area of treatment. That's because the table height can also be adjusted. When the machine is stationery, it is as shown in the picture to the left below, The machine will first moves counter clockwise to just below where my right breast is dropping down from the table. The first delivery of 2.67 grays of radiation beams (via 6 megavolts to a depth of 1.5 cm!) will shoot from the left side of my right breast, exiting through the right (as in the planned images) in a diagonal direction.
Then, the machine moves clockwise down to more than 100 degree or so below where my right breast is (pix below) before delivering another burst of more radiation (aka high energy photons), this time entering from the right and exiting to the left..
Hope these pictures help to give you some idea of radiotherapy. Do take care, and all the best to anyone out there travelling this part of your journey as well.
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UPDATE: Aug. 13, 2015. Below are RADIATION #2 of 15 sessions pictures.
DIDN'T TAKE RADS #3 PIX TODAY (Friday, Aug 14), But procedures are the same. Will post only when there's something new and interesting eg. side effects from RT.
(1) Pictures of the Changing Room
(2) Pictures of Radiation #2 in Action
(3) Pictures of the Bottom & Top of The Radiation Machine. The glass in the pix to the right is where the rads beam discharges from.
Post RADs Remarks:
I feel better & good today...again, my right breast felt warm immediately after radiation - so slathered on tons of aloe vera and every 3-4 hours thereafter...I've decided not to wear a bra after radiation to allow my breast to breathe and because of the aloe vera gel.. The bra constricts my right breast. It was uncomfortable after radiation.... Later towards the evening, the right side of my right breast (in the NNE position) felt somewhat hot as if one gets those heaty sunburn sensation after several hours at the beach sans sunblock. So, I sprayed on pure emu oil. That seemed to cool it down.
BTW, my hair is growing nicely, about 5/8 inch long now with some strands growing as long as 2-3 inches and curly dotting all over different parts of my scalp. . I take pictures of them every week. I decided when they are long enough, I shallput them together into a slide presentation and share them later. I was showering before bed and discovered that all my nose hair have grown back. Boy, was I glad that the air I breathe is being re-filtered again...hehe ...But the head sweating has not stopped -:((
Anyway, going to bed now.
Thanks for visiting my thread....take care now...
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Update: Aug 16th (Sunday).
This morning, my relatives and I walked to the National Stadium to join the more than 150 people in the weekly free intensive cardio and zumba work out. I found that I can resume some jumping, hoping, swinging, buttock twirling and so forth. It was a fun work-out. Even though my RO had asked me not to do strenuous weight training at the gym, I'm going to go this afternoon anyway to see if I can still lift some weights with my right hand. Of course, I have to be careful not to "strain" my right breast.
Throughout this entire journey, I discover that having cancer does not mean we cannot do the things we want...As long as we remain optimistic and determine, and continue to read ahead, understand and ask questions of each type of treatment we will be getting or consider getting, our own pro-activity can make our journey less frightening and more pleasing...and yes, I will admit that once in a while, I do experience the blues out of nowhere, but they are really very short-lived.
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UPDATE: AUG. 21st, 2015 >>> Radiotherapy #8 of 15 + TTE IMAGES
This early morning, I went in for my 8th radiation session. Although many people said that getting into position takes time, at this radiation department, it was a pretty much quick in-and-out, taking only about 10 minutes - bearing in mind that radiation time took only a minute or so (thanks to pre-markings and simulation adjustments done before the start of radiotherapy).
After I was done, I asked for permission to re-take pictures of my right breast CT Planning images coz I want to use it for a project I am working on. As always, after changing out of the gown, I generously applied the 100% Aloe Vera gel onto the radiated breast. It has worked so far. No redness, some very, very mild painless swelling, and no more itchiness that I had during RADs #1 and #2. Application of the gel soothe the itchiness. Since then it has not returned There was a little dryness initially, but that too has disappeared. Aside from the gel, I also use non fragrant moisturizing cream and oil. These seem to work so far too.
Afterwards, I walked over to the National Heart Center next door to my Cancer Center to see if I can get images of the Transthoracic Echocardiogram (aka TTE) that I had done back in July 23, 2015. ...and I was able to do do...
Thus, I'm sharing it here with anyone interested to know what TTE images are like. The images below is only a partial segment coz it's quite detail. I'm gonna go over it the next few days in conjunction with the copy of the results my MO had given me to back in Aug 3, 2015 to further educate myself during my free time.
Below are images of my Transthoracic Echocardiogram done back in July 23, 2015. There are 112 images in all. I am only posting 2 image segments to give interested members some idea of what your sonographer will take of your heart and its valves. When I click on those images that have a play button, I can see my heart beating...it was truly amazing!! The sonographer applied a gel-like substance similar to the ultrasound gel use by an OB/GYN when one has ultrasound to look at our fetus. But of course mine is being applied over the region of my heart.
MORE POST CHEMO Update:
It's been more than 6 weeks since my last chemo. I am very happy to report that the stickiness on my scalp is finally gone, gone, gone...I am happy to also report that my hair is growing, and they have completely covered my scalp. Even though they are short (about 1/2 inch), they are soooo furry soft. I was surprised to see many fine stray stands of 2 inches length hair all around my head too. I'm not complaining. It reminded me of the time after my daughter was born when she had no eye lashes for 4 months or so, and then one day, her long lashes suddenly sprouted out..... I absolutely love touching my new hair every day @!!@ I've started on a salad and fruit diet to try and lose the 6 pounds I've put on during chemo :-(( sigh....I hope it will be successful....keeping my fingers crossed.
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Looking back thus far, I have enjoyed learning more about myself and my journey. When I was first diagnosed, I told myself that I will make the best of it, learn from it along the way, and do whatever it takes TO PROTECT MY BODY. I have every intention of continuing along the same mentality as I want it to be a very meaningful one, so that when I eventually get to look back at it sometime down the road, I want to feel pride instead of bitterness, of the joy of making it through instead of fear of not making it through, and awe of life instead of regrets...yes, that's how I want to feel....
Thanks for visiting. Please take care, and sending you the best throughout....
P.S. Will post when I am able to get pictures of my bone scans from the radiologist's office, and MUGA scans from the
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UPDATE: Aug. 26, 2015 (Wednesday)
Today is exactly 2 weeks since I've started radiotherapy. Nothing new to report, except that I had a 2nd follow up consult with my Radiation Oncologist to discuss the x-ray pictures taken before radiation this morning (Results: My RADs are still aligning properly, yea!) , and also on whether I have made a decision about doing the additional week of booster or not. I said I will give him an answer by the following Tuesday after RADs that day. That's because I want to continue reading more published scientific articles on the additional benefits or non benefits of additional booster rads to the tumor bed for early stage HER2+ breast cancer patients like me who have had chemo. So far, the majority of articles I've read discussed the advantages of booster to late stage and/or metastatic cancers BC , or to early stage BC patients like me but who did not go for chemotherapy.
As I continue my search on articles on the pros & cons of The Booster, I came across this article PRINCIPLES OF RADIATION THERAPY below , and would like to share them with interested fellow members. Though at this point in time, my inclination is not doing the booster, especially since I have already done chemo. I actually like it the chemo was given to me first before radiation when the standard procedure for lumpectomy is radiation immediately, followed by chemo, if needed.
Anyway, am copying and pasting certain sections/paragraph that seems interesting. If you think so too, and is interested to read it in its entirety, the source link is posted at the bottom.
***HOW RADIATION WORKS***IONIZING RADIATION Ionizing radiation is energy sufficiently strong to remove an orbital electron from an atom. This radiation can have an electromagnetic form, such as a high-energy photon, or a particulate form, such as an electron, proton, neutron, or alpha particle.
High-energy photons By far, the most common form of radiation used in practice today is the high-energy photon. Photons that are released from the nucleus of a radioactive atom are known as gamma rays. When photons are created electronically, such as in a clinical linear accelerator, they are known as x-rays. Thus, the only difference between the two terms is the origin of the photon.
MEASURING RADIATION ABSORPTION
The dose of radiation absorbed correlates directly with the energy of the beam. An accurate measurement of absorbed dose is critical in radiation treatment. The deposition of energy in tissues results in damage to DNA and diminishes or eradicates the cell's ability to replicate indefinitely.
Gray The basic unit of radiation absorbed dose is the amount of energy (joules) absorbed per unit mass (kg). This unit, known as the gray (Gy), has replaced the unit of rad used in the past (100 rads = 1 Gy; 1 rad = 1 cGy).
Exposure In order to measure dose in a patient, one must first measure the ionization produced in air by a beam of radiation. This quantity is known as exposure. One can then correct for the presence of soft tissue in the air and calculate the absorbed dose in Gy.
Percentage depth dose The dose absorbed by tissues due to these interactions can be measured and plotted to form a percentage depth dose curve. As energy increases, the penetrative ability of the beam increases and the skin dose decreases.
If you copy and paste the below into your browser, it will open up as a 10 page pdf file that you can save to read later. I've read it all - quite enlightening, and the process is similar to most of what's been done to methus far. www.thymic.org/uploads/reference_sub/02radtherapy....
Sending more good wishes to all my fellow members going through radiation as well... Below are Beds of Flowers for your enjoyment. They give me hope and happiness whenever I look at them. I wish for them to bring you similar joy and happiness too as you are reading along...P.S. I'm so glad my treatment journey is coming to an end in about a week's time. Take care now everyone. God Bless....
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Thank you so much for allaying many ladies fears by such good descriptions and pictures.
All though nothing is exactly the same from center to center, your posts give everyone a picture in their mind a fairly good picture what to expect..
I wish I had started a spread sheet. I do have all of my records and CDs of all my cts and mris
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@Beatmon, thank you...and yes,you are quite right that every center will be somewhat different in their treatment offering....
Wishing you the very best in your post-treatment recovery too...
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More Post Chemo Update: Aug 30th, 2015
The excessive sweating of my scalp has continue unabated. Kinda worry if it's only temporary or will it become something permanent. Wrote an email to my MO to ask about it. Will see what he has to say....But did do some reading of post-chemo sweating. It seems there are others who've experienced similar symptoms and have mentioned it at various other forum pages....Need to look into it more and see what I can find....I must say that the sweat are not the kind of stinky smelly sweat like the underarms after a work-out, but rather it's more of a watery kind, as if water are seeping out of one's head, and therefore, not smelly. Still, I should take note and see if it's anything serious or not...@??@.
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RADS UPDATE: September 1st, 2015 (Tuesday) - LAST DAY OF RADIATION! Yippee
Just got back from my15th, and last, session of radiation therapy today - actually I have chosen not to have the boost dose (which would have been another 5 days or a week of radiation).
My RADs case manager was waiting to have an interview me (a sort of exit or completion interview, if you will) about my experience there, and asked if I could share with her my reasons for declining the boost dose.. I did. We had a very good conversation and discussion about other things as well, eg. those relating to the cancer center's support programs for patients. I told my SO and my RADs case manager my interests in volunteering with new cancer patient education. I was told that someone from their social work (?) department will be in touch with me. Let's see how this part will go...
Then I had 3rd week post-RADs visit with my Radiation Oncologist. He took a look at my breast and thought they look fine even though there was a slight blush color...He told me to continue applying whatever it is I've been applying. Gave me an appointment for a follow up visit in early November, then sent me on my way... so I thought "Wow, that's it then!"
SO below are some words I want to leave us all with....and to think about....
FINAL COMMENTS....
From the very beginning, this journey has been eye opening and fantastically educational because I chose to make it so. I am pleasantly surprised & happy to find that the Cancer Center I had chosen to go to moves everything along pretty quickly and efficiently 90% of the time. The radiation part of it was the easiest and the chemo part, to most extent, was not as bad as I had imagined.... I think that's due to 2 major reasons (1) I prepared by reading up on the side effects of herceptin and paclitaxel, and go further by reading the actual side effects others' experiences. Then I think about what I can do to lessen that effect on me. I read about TCM and organic vitamins that can strengthen my body and boost my immune system. (2) I elected not to go with the standard treatment plan. I had countered with the clinically proven alternate TP I wanted for early stage BC and HER2+ cancer patients. I'm glad my MO was willing to work with me on my request with no fuss and no threat. Of course he did have his say. The senior nurses in the chemo room did try to make my chemo experience comfortable, and fearless. However, the less experience nurses were somewhat overwhelmed by the large number of patients they have to look after. Consequently, they were less attentive and the ambience can, on those occasion, become somewhat robotic... I appreciated the friendliness and professionalism of the team of radiotherapists in Room 8 at my Cancer Center. They were wonderful and patient, great to interact with, and took the time to explain in detail questions I have. Most of all, I love the prompt responsiveness of all my doctors in getting back to me on all my questions before every procedure, every treatment as well as any post treatments questions I have. In this respect, I am quite blessed...
Well, I would like to thank you again for visiting my thread, & wish you, my dear fellow members, the VERY BEST, wherever you may be, if you are still travelling along whichever part of your Journey....Make it the way you want, on your terms so you'll feel good about it when it's completed...
P.S. I am certainly aware that completing these treatments bring no guarantees... That there is the 5 year, 10 year, 15 year, 20 year or more survival milestones... I'm not gonna waste my time dwelling on them now because I'm more in a hurry to continue onto the many things I still want to do, and to catch up from where my life was put on pause 7 months ago.:-))... and I am feeling quite H_A_P_P_Y right now. I will savor this feeling of Happiness while it lasts... QUE SERA SERA, whatever will be, will be..::--))))...now back into the job market and see where that will lead...ANOTHER JOURNEY to remind myself to stay upbeat too....SEE, LIFE IS ONE THING AFTER ANOTHER....
PPS. Want to know why I chose to post this last pix of "I Did It to Save My Life"??????????????????????????????????????????????????
BECAUSE THAT'S HAPPENING ALL OVER THE WORLD -----.EVERYONE IS DOING WHATEVER THEY NEED TO DO TO SAVE THEIR LIVES, NOT JUSFOR CANCER PATIENTS...... if you ever do get a chance to read this book, you'll find that their survival rate are quite beyond their control too. Oftentimes they don't have a choice...
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Post RADs Update:
Although it's been only 4 days since my final RADs treatment, I've noticed that the entire right breast is red, like slightly sunburnish. Good thing it does not hurt, just warm to the touch. Been applying my cream and moisturizer to it, and they feel OK. Still, will need to keep an eye out for it. It's my body after all.
Post Chemo Update:
My hair is growing quite nicely and thicker now. I just love touching them as they're so fluffy. It's strange to see and feel those "rogue" hair throughout my head. I call them "rogue" because they are like 3 inches long. I don't mind them at all, though it would be nicer if ALL the hair are rogue. Then it would be amazing to have 3 inches all of a sudden, wouldn't it. I
Still getting the head sweats that I had previously mentioned, though not as often as before...Hope it's a sign of improvement in this area. Will have to pay attention. I've also discovered that the continual doing of the arm lifting or swinging exercises are so good for my right armpit. Not doing it a day or two tends to result in a stiffen right arm...
OK, that's all for today...Gotta rest now as I have a looooong day tomorrow.。。。
Take care, thanks for visiting and sending good energetic blessings your way...
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More Update:
Ordered a short wig from Jon Renau last night coz a fabulous young breast cancer patient name Erin Leigh talked about it on her youtube videos. They look really natural and beautiful on her, and I found a beautiful one on Voguewig. So it will arrive within a week or two. They are expensive ($99.84 after $20 labor day discount, with free international shipping though). The customer service person who chatted with me online was knowledgeable, and friendly. She said I could exchange within 10 days, or return less a 15% re-stocking fee which I think is reasonable. Though I hope neither will happen. BTW, Erin has other videos on youtube that you can check out that increases cancer patient's esteem. Bless her young soul :-).
So, I decided to get one because I've started applying for jobs. These jobs deal with the public or standing in front of an audience. So, I need to be more professional looking. I'm not saying I'm ashamed of my baldness. I'm not. While I like my Sinead O Connor look, I'm still competing with 100s of other people applying for similar jobs. Of course, if someone gives me an offer that's attractive, I won't turn it down either :-)) So, we do what we need to do to beat the competition to get that job, right? Not working for 7 months (actually 9 months for me) is hard and unusual for me coz being busy working have always given me happiness.... Besides, no job = no income. My entire treatment (ie. Consults + tests + surgeries + chemo + radio ) came up to about 35K after subsidies (yep, which is that large 52.5K cost). Total treatment cost about 87.5K. Luckily, because of the insurance and rider I bought, my out of pocket is bearable. And my annual insurance premium cost about $1300. It will increase in about 5 years, naturally. I am forever indebted to my younger sister for her constant nagging to get this medical insurance more than a decade ago. Can any other country beat this? No insurance will ever accept me now with this pre-existing medical condition......so I had better make very sure there is no lapse in my premium payment...
Neuropathy update: 2-3 weeks after chemo, I did feel the occasional numbness and/or bloating on both my fingertips. These usually occur in the mornings, but would be gone by late mornings. I'd just wiggle my fingers to encourage the flow of blood. My feet are OK. The numbness on my finger tips get fewer and fewer as the week passes by. I'm happy to report that today, 10 weeks after chemo, there aren't any more numbness or bloating sensation on my fingertips... Also, when I urine, there aren't any more bubbles in the urine. I like to think I've gotten most of the drugs out of my system, and that they did their job killing the enemy cells as they run throughout my entire body.
Post radiation-wise, my right breast continues to have some mild redness.. Try to diligently apply the various cream I've bought. Was told it could lasts for a little bit (??) before it will go away....So, I'm keeping an eye on it. But otherwise, I'm eager to be working again....
Thanks for visiting my thread. Sending you this bouquet of tulips and good wishes along your journey...May you continue to be strong and blessed every moment of the day, wherever you are
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- 285 Who or What Inspires You?
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- 50 Immunotherapy - Before, During, and After
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