Chemo April 2015: Concurrent Herceptin + Paclitaxel HER2+ Group

NATSGSG

Hello Everybody:

I've just started my 1st chemo treatment this past Monday, April 27th. Would love, love, love, love to hear from everyone who's on a course of concurrent Herceptin + Paclitaxel treatment so that we can exchange notes, and our experiences along this journey. So, let me share with you mine now. If you could use the same format, that would be great as it help us all to quickly identify the differences in our treatment plan.

Duration: 12 weeks weekly concurrent Herceptin + Paclitaxel (HER2+, Stage IIb, Grade 3, 2.5 cm, ER/PR-, Clear Margins, 0/1 Sentinel Node, Lumpectomy, Right Breast Reconstruction)

Initial Treatment: 4.5 hours.

(I) Pre-Herceptin Medication: Panadol (oral) + Benedryll (IV) 30 mins, including recovery time. The purpose of Benedryll is to help patient deal with the chill and cold that Herceptin can caused to some patients.

(II) Herceptin: 60 mins (about 4 mg/kg). It was OK for me except that during the last 15 mins of infusion, the benedryll wore off and I did indeed felt cold and chilly in my body. I made it a point to request for benedryll for subsequent treatment and  in sufficient dosage that I don't feel the chill and cold coming on in my body.

(III) Pre-Medication for Paclitaxel (Ranitindine, Diphenhyramine, Dexamethasone) - It was explained to me that these pre-medication is to help prevent/reduce allergies of paclitaxel in patients. (30 mins + 30 mins recovery time).

(IV) 30 mins before the start of paclitaxel, I wore double layer food preparation glove, and soaked my hands in a basin of water filled with frozen blue ice. I also wrap my both my feet in plastic bag before soaking them in a basin of water and sufficient frozen blue ice  to last me through 2 hours** (30 mins before paclitaxel, 60 mins during, and 30 mins more after infusion end). My doctor said this could reduce the chances of getting neuropathy. He said it worked on the majority of his patients, although it didn't work on two of his patients. He did say it was optional, that it's someonwhat inconvenient because I have to bring all these items myself. When the blue ice melted, I rang for the nurses in the chemo room to help me with taking the melted ones out and take new ones from my Coleman cooler box (see pictures above for list of items). I didn't mind the inconvenience if this means lesser or reduce chances of neuropathy in my fingers, hands and feet. 

(IV) Paclitaxel (80 mg/m2) - 60 mins infusion.

(V) 30 more mins icing hands and feet.

During chemotherapy, we were allowed to drink to keep ourselves hydrated, and to eat (I brought crackers with me) between infusion. I had brought along 1 litre of green bean soup that I had boiled earlier that morning. In traditional Chinese medicine, green bean soup (bean discarded) is believe to help to detox our body. We can go to the toilette anytime. The nurses where I go are helpful and wonderful. At this cancer center, there are two rooms for chemo, one with 74 seating and another with 30 seating. I requested for the smaller room. The seats were quite comfortable.  In front of every seat is our own TV for patients to watch any channels we want.

When my infusion was over, I was anxious to go to the toilette for the 4th time. I stood up, forgetting that having soaked my feet in cold cold water for so long, it was numbed and red (not painful). I almost fall over and someone caught me. Lesson learned. Then I gulp down the rest of my green bean soup.

I was grateful that my sister was with me. When we got home, it was dinner time and I was quite hungry. I had a bowl of baby oatmeal with dried cranberries/raisins/honey. Then I gulped 1/2 liter of water. Then proceeded to have 2 large slices of cranberries/walnut multigrain bread, drank another 1/2 liter of water, took my immune system booster supplement, brush my teeth, and gargled my mouth with biotene to prevent sore mouth. Then to bed. I slept like a baby.

Tuesday, April 28th - got up late not knowing what to expect. I was happy that I felt normal. As always, I drank 1/2 litre of water, then made a bowl of baby oatmeal (my usual morning breakfast food). My sister made a protein and fiber rich smoothie for me. Took several supplements: Immune System booster, red wine/grape seed extract (anti cancer oxidants) and fish oil (for heart, mind and joint health). I spent the day relaxing, reading online, watching TV and going for an hour walking and exercising during late afternoon. I found my appetite was still good. Ate mostly fruits, veggie soups, porridge with quinoa and fish (mostly Salmon or Red Snapper) or noodles. Watch Masterchef, then did my usual nightly ritual - shower, brush teeth, gargled mouth, then to bed. Slept well.

Wednesday, April 29th - got up early. Ate as usual. Same routine. Went for a walk and exercise by the river. So far, still feeling and eating OK. Same routine. Same supplements. Went to bed around 2300 hours.  Woke up in the middle of night to pee. Felt a hint of stinging. Might be the chemo settling in...

Thursday, April 30th - Got up feeling an ache all over my body...finished eating my oatmeal, and drank my smoothie...appetite still good, taste buds still unchanged. Let's see what the rest of the day will bring...(decided to lay off fish oil next time the day before, day of and day after chemo after reading about an article about it in this site). Continue taking immune system booster supplement. Got up several times at night to pee.

Friday, May 1st- Early morning, hint of constipation. Had usual breakfast and 1/2 litre water. Had noodles late morning. 1st bowel movement. Noticed bright red blood in stool water. Drank more water.  Late morning, went for 2nd bowel movement. Again, blood in stool. No pain, didn't panic, but email my MO about it (Labor Day holiday today, so don't expect him to reply soon).  @ Noon, had 3rd bowel movement. This time, not constipated but blood was darker in color,  pieces of muscus red like those one used to have during heavy menstration. Email my MO again. Drank some more H2O. Went to lie down. Just got up to update this. Will see what happens. 

Saturday, May 2nd - Had 2 bowel movement this am. Again with blood in stool...called hospital chemo nurse.She suggested going to the emergency, which I did, at about 10am.... Wow, what a long wait with so many people waiting. Finally, after 3 hours, got to see a Dr. After checking my bottom, he said I have a few small hemorrhoids in my colons. He also took blood samples to do a Full Blood Count. I was given a  prescription of Proctosedyl Ointment, to use before bed but after showering. I've used it only once. The next, the bleeding stopped during stooling. As well as the days that followed.

After waiting for 2 hours, blood report came back. Everything's normal! Yipeee!  So, I don't have to go for a blood test for my upcoming Monday Chemo #2. So that's good...except I need to go for a colorectal follow up in 2.5 weeks time. I was given a cream prescription of Proctosedyl Ointment, to use before bed but after showering. I've used it once. The next, the bleeding stopped during stooling. So it's an effective craeamm Also got a text reply from my MO who is on holiday. He suggested the same, and didn't think it would be serious. Filled him in status as well. I just love all my doctors at this hospital.

Note1: My girlfriend who had cancer 10 years ago said she regretted not taking the immune system booster whereas her girlfriend with breast cancer did. She said that she gets infection easily whereas her gf does not. So I took what her gf recommended to her.

Note2: I read somewhere that paclitaxel made our nails sensitive to light. One patient painted her nails with dark color nail polish on both her nails and toes, and did not get any cracked or darkened nail. She recounted that on the last day of her chemo, she forgot to repaint her nails the night before. When she got out of treatment, and got home, one of her nails turned dark and cracked. So, I'm going to follow this advise and see how it goes, and will report back.

Note3: My doctor said that by Treatment 2 at the earliest, and Treatment 3 at the latest, I should see my hair falling. I had long hair before, but had cut it short. Then I saw a lady in the chemo room had the same short hair as mine. But hers have already started falling in blotches. So, I've decided to go for a crew-cut next Tuesday, after my Monday T2. I'd rather not get up finding batches of hair on my pillow. I'm not afraid of hair loss coz I know they will come back...

Note4**: When I asked my MO why I need to wear plastic gloves on my hands and feet, he said it would make soaking in the cold water bearable. But said I could try it out without and find out for myself. I found his advice to be true. Amazon does sell hypothermia gloves and slippers that keeps your hands and feet cold during infusion, but they cost about $100 each pair, and you need to buy 2 pairs since each pair lasts about 30-40 minutes only. So, I chose to go with the inconvenient but cheaper method instead.

Well, ladies, looking forward to hearing what you have been through thus far, and any advise, suggestions and observations you have that we can learn from you...thank you. Please take care, and let's make the most of this leg of our journey...

List of Icing Items in Pictures

NATSGSG

Hello Everybody:

Here's more on Chemo 2 with lot of details...

********MONDAY, May 4^th 2015, Chemo #2 . Duration: 3.5 hours******** 

(This section talks about my diagnosis, tests done, biopsy, surgery, breast reconstruction, on why and how I made my decisions in my TP,  and more chemo)

All went well as listed in Chemo#1 above except that:

(I) premedication for Herceptin was reduced to 1 Panadol, with Diphenhydramine (benedryll) remaining at 25 mg. I read in this forum pages that some sisters here cannot tolerate benedryll. If that is the case, please discuss with your MO on an alternate pre-medication. Again, the purpose of this pre-medication is to reduce chills and colds you may experience during the Herceptin part of the infusion. It has worked well for me, so I wanted it to continue. And it did worked well yesterday too.

My hair are still there…the falling out hadn’t happen yet. I was supposed to go for my crew cut today, but decided that I will wait till next week to see what happens. I read that most people’s hair starts to fall between the 2^nd and 3^rd Chemo session. My MO said so too. I supposed it’s vanity that stopping me from getting it done this week. I want to take more pictures before I go all commando involuntarily. Yeah, I have all my headgears waiting to be adorned…is it too optimistic to hope it wont fall off? Hehe...time will tell and I shall be back to share it with you. I read that a few members here who wore cold caps during chemo did not have the hair falling out. My MO confirmed, though it was too cold for a few of his patients. If you can tolerate cold, then try it if hair loss is worrisome for you. At least something positive. Yeah!!

My taste buds have not gone crazy on me, yet. So my appetite is still good, and food flavors have not changed. Matter of fact, I gained about 1.5 kg between Chemo #1 and #2. I suspect the reason my taste buds have not changed is because I drink at least 4 to 5

liters of water, fluids, soup, fruit juices combination everyday. During chemo session, I would drink up to 1.5 liters between infusion.  Whenever I feel my mouth going dry, I would drink at least 0.5-1.0 liters of water. It'

s dry because the drugs are soaking up the fluids from your body.  So you replenish it to hydrate yourself to prevent side effects. If your taste buds changed during chemo and you cannot stand the taste of water, try sorbets (no ice cream or dairy based products), freshly squeezed juices (I heard citrus works every time - you must try to find ways to put whatever fluids you can into your body, seriously!). Sure, you'll go a-peeing often, and that's good coz you're detoxifying.

It seems the standard protocol at this Cancer Center where I am at (they have something like 180-250 cancer patients a day!) that they only give these pre-medications on your 1st treatment. If you do not show any symptoms of Herceptin allergy, they do not give them to you on subsequent treatment. But since my Chemo 1 went very well, I asked that that pre-medication continue because during the last 15 mins of Herceptin infusion on Chemo #1, I felt cold and chilly because the benedryll have worn off. So I made a point to ask for its continuance. I talked to a few patients sitting around me during check-in who said that they felt so so chilly during their subsequent treatments without realizing that they could ask for this pre-medication’s continuance. See, a little knowledge goes a long way, doesn’t it?

Now, just behind the registration counter is their pharmacy department which dispenses all the drugs and dosages one gets after they checked one's weight/height for that day (yes, we have to go and weigh ourselves at an automated machine located right next to the waiting reception for correct dosages to be calculated for you). Every treatment has different dosages which means charges are different too) . Also, 2 hours before every chemo session, we have to do  a Full Blood Count test to ensure that our WBC, RBC, platelets and other things are within acceptable range for chemo to proceed or be postponed. I always bring my excel spreadsheet and go and talk to one of the Pharmacists (they have like 10 in there) to confirm my day’s dosages and infusion time for all my drugs, and that my previous request for the pre-herceptin medications are noted in their system. The Pharmacists here are really good about things like this. Naturally, they will always on be the phone to let my MO knows about my request(s).

It appears that many patients don’t do it, but I made it point to create an excel spreadsheet listing all the weeks, types and dosage of my preliminary Treatment Plan (TP) when discussing these with my MO to work out a final TP. He had originally wanted me to be on the 1 year Herceptin plan whereas I wanted to get the FinHer 9 weeks concurrent Herceptin and Docetaxol treatment, being HER2+ Stage 2 Grade 3 Breast Cancer (which also happens to be the recommended treatment plan that the New Zealand Pharmaceutical Agency PHARMAC offers to all NZ breast cancer patients who are HER2+). However, due to "political pressure" from the PM's office and other self-interest groups, they do now offer the 12 months Herceptin plan. But this request must come from the patient and their doctors. I think this is wise because then the onus would fall back on the MO + patient should they choose to do  the longer TP.

Based on PHARMAC’s  comprehensive comparison research analysis of 5 major clinical trials, they have found that the FinHER treatment plan to be the optimal TP for HER2+ patients in terms of safety, efficacy and reduced cardiotoxicity to patients. Of course, it’s cheaper too. (My cost, not in New Zealand, of my Chemo #1 session was about S$2100 since the initial dosage was  4mg/kg. ) There are 7-10 more sessions to go before radiation comes in after a 2 weeks rest from chemo, I suspect, or at least, that's what I'll ask for. See, I told you I’m pro-active, even about things like this.

** FinHer = a Clinical Trial sponsored by the Finnish Breast Cancer Society

Oh coming back to what I was saying earlier. During my earlier discussions with my MO, I have already researched on each drugs that are common - Docetaxel (aka taxotere), paclitaxel (taxol), anthracycline etc. and their side effects. Different sites will give more or less information on side effects. So, it's good to visit different sites to see what each says. The NLM has a section and description of all drugs approved for chemotherapy.  After much discussion, my MO respected my request for the FinHerTreatment Plan, but also asked me to consider the 12 weeks Herceptin and Paclitaxel concurrent treatment. I asked for dosage information, and enquired on what basis he made this recommendation (on a clinical trial conducted by Sara Tolaney et al).  I researched and read that trial, which was similar to FinHER except it was 12 weeks duration, using paclitaxel instead of docetaxel, and allow patients to stop thereafter or continue on to a further 40 weeks on Herceptin only treatment.

Since I do not believe in being OVER-medicated, and since FinHER trial results does not see the additional benefits of Herceptin for HER2+ patients like me, I found the 12 weeks treatment alternative acceptable for 2 reasons:

(i) the taxane drug use is  paclitaxel instead docetaxel. These two have similarities and some differences, and whose side-effects are somewhat similar;

(ii) the Sara Tolaney et al trial dosages for Herceptin over the 12 weeks period copies exactly that of FinHER (1st treatment dosage at 4 mg/kg and 2mg/kg for all subsequent treatments). Of course, 12 weeks means 6mg/kg more of Herceptin over FinHER's 9 weeks, and 80mg/m2 x 3 = 240mg/m2 of additional paclitaxel over the entire duration. Now, I asked my MO if I may stop at 9 weeks instead. Again, he said that I may but would like me to consider it to 12 weeks completion. We agree to discuss it further down the road. Please note that I am responsible for all  my decisions in the end. When my MO respects my wishes, I cannot go back and blame him for anything. It’s unfair to do so especially since he did make his recommendations, but I had chosen not to go with it.

As to the 12 weeks TP, my MO wanted my Herceptin to be at 8mg/kg on the 1st treatment, and each subsequent 3 weeks (not weekly) to be at 6 mg/kg.  I didn’t want that to be so and asked that it be exactly as listed out in FinHER and Sarah Tolaney et al –weekly, concurrently with paclitaxel so that the synergy of these two drugs bring out the optimal treatment benefits. Since he used Sarah Toleney et al plan, I had brought the article. I pointed out the part where she copied FinHER’s herceptin portion of the infusion which was given weekly and not once every 3 weeks.  He saw and concurred. When I have a point of disagreement, I always bring printed articles to show him. I might add that he’s a pretty swell, agreeable young doctor. I truly appreciate that unlike many MOs I've read in forum pages here and elsewhere, my MO did not pressure me into accepting the so-call 12 Months Golden Standard Plan. When he and other doctors  feel that I know what I want and is able to provide evidence of my decision, they are comfortable and willing to work with me. That’s teamwork, and being professional about it. I love this Cancer Center because of their open-minded and receptiveness to hear patients out.

When I was first diagnosed with breast cancer, I was sent for test after test within the first 2 weeks: Bone-scan test, full blood test, Chest X-ray, EKG, mammograms, abdomen ultrasounds, surgery and so forth, followed by Biopsy^^, and then a visit to my 2^nd SO (surgical oncologist, luckily I have two very smart lady doctors who covers for each other when they are out on conferences. SO #2  also happens to be an onco-plastic surgeon too!) to discuss the results of all my tests. At first, she gave me one option – and that was to do chemo >> surgery >> chemo >> radiation (aka Neoadjuvant Therapy - the purpose of which was to shrink my 2.5 cm tumor).

Having pre-read about the effects of chemo, I rejected this option as I did not wish to go into surgery in a weakened physical state. My tumor size was under 3 cm which, to me is not really a necessity, even though I have the most aggressive type of cancer – grade 3. I had made it very clear during my initial consult with my 1^st SO that I wanted breast conserving surgery (aka lumpectomy, of which I had spent many hours reading about prior to the first consult). I understood that that would be contingent upon whether cancer had spread or not into the Sentinel Lymph Nodes. Please read my post entitled “ EVERYTHING U WANTED TO KNOW ABOUT LYMPH NODES” under Surgery, before, during and after where I had pasted an enlightening and wonderful article by a group of doctors, along with their links. 

^^ Biopsy was a painless 10-15 mins outpatient procedure. The 0.5 cm incision heals within 24-48 hours. You can shower after 24 hours. My SO used an ultrasound guided fine needle procedure The ultrasound is to accurately guide the needle into the tumor to take out 5-6 cores of tumor cells from various angles for pathological analysis. A local anesthesia is given using lignocaine. These cores are examined for the type of hormone receptor for estrogen and progesterone  (positive or negative), and for the HER2 gene (positive or negative). The results of these will determine the course of your treatment. In my case, the results came back in 4 days.

You can ask the doctor's office to call and inform you of these results, ahead of your scheduled appointment to give you time to start your research. If they say they would prefer to wait until you see your doctor to discuss,  insists very clearly they give or fax it to you too (nicely). Some office will cite "it is not their policy" and so forth. You insist on being given because (a) you have the right to it, (b) you PAID, for it and (c) you are an adult and they should not be treating you like a child. When you get it, start reading the details, and start getting yourself so well verse in your own case, and go to pubmed (in NLM) to do your research on standard and alternative treatments. If you spend enough time researching, you may even come across a treatment plan that was used before, and may even be applicable to yourself or your love one(s). If you really want to be proactive and protect your body, that's what you will do. And you will NEVER, under any circumstances, GIVE UP on yourself or your love one(s). That's the committed kind of proactivity you will engage in when you love yourself or your love ones.

eg  ER/PR HER2 possible combinations are  -  -  -,  -  -  +,  +  - +,  +  +  +  , - + - , + + -

BE sure to get a copy of the results of every test you are asked do, and keep them in a file in chronological order. You can start learning about how to read the results of these pathological reports ahead of time by googling "How to..." so that when you actually get them, you'll already have some idea of what these are. I'd rather enjoy reading and learning about these terminology.

The 2nd option was presented: surgery >> chemo >> radiation. So we discussed that upcoming surgery and breast reconstruction in further details. My 2nd SO explained all surgical risks involved, type of anesthesia, about SLND, ALND, breast reconstruction details as to how she was going to do it and why she elected the method in question, estimated total time in surgery, estimated recovery time, and what happened post-surgery. .I further discovered that this hospital's protocol during surgery was that in addition to taking out the tumor with margins, they would take from between 1-4 sentinel lymph nodes to test if cancer cells have spread. That if EVEN 1 sentinel node is found to be positive (cancerous), they will immediately proceed to do an axillary dissection. This means they will take out the ENTIRE lymph nodes from the breast upwards to ones’ underarm. Each patient can have from between 16-25, sometimes 40 plus lymp nodes. That’s an awful lot of precious nodes to be taken out of one's body, and NOT a decision I would lightly give without serious due consideration.

See picture below of the location of our lymphatic system. You see those green colored bean-shape cells at 45 degrees from the left and right breast towards the arms. Well, that's all those nodes that will be taken out as well as those in the underarms, whichever that arm will be. It's not meant to scare you. It meant to make you MORE AWARE of what's AT STAKE  here. These pictures were  taken from MissBennettScience ppt presentation and graysanatomyonline.comFrom all that I have read of ALND, it’s a very, very scary thing because once the nodes were taken out, they're gone forever and will NEVER regenerate again. And that arm will essentially be somewhat "useless.” I was not prepared for that to happen. When she went on to explain how she was going to re-construct my breast (which was quite different from the method recommended in current literature ), and how her method** will make my breast look more natural and closer in size to my left breast, I was quite fascinated and pleased, and made a mental note to read up more about it. Thereafter, I was asked if I had any questions, before being asked to sign the Patient Consent Form (for surgery, SLND and axillary clearance).** I will say, now that I have had my reconstructive surgery, that my 2nd SO simply did a fantastic job on my right breast. I am a size 38D. After the surgery that took out the 2.5 +1+1 cm (=4.5cm with margins) or 20% (1/5) of my right breast, it is now a 36-37D. Can you believe it? God, the method she used, called the the Round Block Technique, retains the natural looks ofy right breast.. I will have a scar around my areola from where the incision was made, and from where the tumor was taken out. But this scar can fade quickly upon the use of the Mederma Scar Fading cream, but I have to wait till the incision heals. Current literature recommends cutting from the top of the breast where the tumor is located, and one which leaves a very ugly pothole on the breast where-ever it is cut out. NOT SO with the method my SO did. As of this writing, my nipple, areola and breast still retain it's sensation. That's the beauty of this method. I'd be more than willing to send you a picture in my private email if you wish to see it. I gave my SO permission to use pictures of it in any conference attendance she will present in the near future. I think any method that can preserve the breast, and make it less distorted is a welcome thing for us breast cancer patients, agree?Note: Whether you have SLND or ANLD surgery, you must do the arm exercises to help it heal faster.  If you could, you must start exercising the next day after surgery. Your physiotherapist will show you how before you get discharged. I stayed only a night. For some of you, it may be painful and thus reluctant. Then do just a little at  a time than none at all. Because you don't want the risk of lymphedema. "Lymphedema aka lymphatic obstruction, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system, which normally returns interstitial fluid to the thoracic duct and then the bloodstream." - from Wikipedia. I have posted alternative exercise pictures link under the Fitness and Getting Back in Shape section of this Forum Page that could help you too.Truth be told, I did not sleep at all for 2 nights about the ALND consent. I went into the NLM website under PUBMED and read for hours about SNLN and ALND. I found new literature stating that even if 1/4, 2/4, 3/4 sentinel nodes are positive DOES NOT necessarily justify an entire axillary lymph nodes dissection under certain conditions. These articles provided strong and compelling explanation and alternatives to ALND. With that in mind, I called and left a message with my 1^st SO’s nurses (she was in conference in Europe) that I wanted to cancel the ALND portion of the patient consent form.

My surgery was scheduled for 1500 hours on Wed, March 25. My message was on Sunday, March 23. I also wrote her an email to make sure she got my message. My 1^st SO returned my call immediately after her Monday morning surgery. Naturally, she asked why. I told her my findings and my concerns. She respected it, and asked me to think through and give her my answer on the day of surgery. Come surgery day, just before I went under, she asked** if I still wanted to cancel axillary clearance. I said yes, and she brought my consent form, cancelled the ALND part of consent, had me initialed it in front of the surgical team, and told me they will still give me the care that I deserve, and that we can re-visit this issue after results of the SNLD comes back in a week’s time. If I not cancelled, then the SNLD results would be instantaneous. I said that I understood it all. I felt so relieved for having done that before I was placed under general anesthesia. 

Tumor and reconstructive surgery were performed simultaneously that day by both Surgical Oncologists. It saved time, pain and money. Surgery took  about 2.5 hours with another 2 hours recovery time. I awoke about 5 hours later in my ward. My surgeon stopped by to check on my breast again before leaving. I experienced only a low grade pain that was quite bearable. The nurses came to check on me periodically. Had a good hospital porridge dinner. Had to pee in a bedpan over the next 2.5 hours or so until I could go to the restroom myself. My SO's residents came early the next morning to check on breast. She too came with her senior resident in her morning ward round. I felt so well cared for throughout.

**If my SO did not bring up the subject of the ALND cancellation, then that means she didn't get my message. So it is up to me to bring the subject up. Do not be afraid to do so when you are absolutely convinced about your decision. As a patient, you have every right to make changes to any part of any procedure you are uncomfortable. I wanted my surgery to proceed, sans ALND, that's all. I'm not encouraging you to change your mind without rhyme or reason.

Post surgery visit a week later with my 1st SO gave me the best news I've ever had. I had clear margins and the 1 node taken out was negative. I will say too that that 2.5 cm cancer grew sometime during last August 2014 when I felt the unusual itchiness and growing lump in my right breast, but chosen to ignore it. I have myself to blame for postponing my bi-annual mammogram because I was studying for my GRE, and doing other things. Once that was over in January this year, then went to have it checked up in mid Feb 2015 while I was in Beijing.  Ultrasound showed tumor.  Had MRI done confirming cancer.  So I flew back home beginning March.  Well, better late than never.

Excuse the detour, but back to what I was saying. With this cancer, I don't intend to be passive where my body is concerned. Like many of you, my world was shattered and all the plans that I had been making had to be put on pause. For instance, I was so looking forward to getting (hopefully) my Ph.D in Education Leadership scholarship at Harvard University for the 2015-2016 school year to which I have applied, and joining my daughter back in the States, amongst the many other ambitious plans I have. So getting news of breast cancer sucks! sucks! sucks! big time. 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. I will 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.

That is not to say that the majority of doctors in this field are not doing their job.They are, and to the best of their abilities, and within the confines of the available time they have.  Oftentimes, they are so very busy having to deal with so many details of so many different types, stages, grades of cancer patients and procedures that I believe they are overwhelmed, thus making it even harder for them to keep up too. The adoption of standard treatment plans are thus inevitable.

I'm not saying that that is bad. I’m saying that by helping ourselves through reading and researching from as many legitimate sources as we can, and even recognizing bias reports and trials especially from the tons of information available from the National Library of Medicine (NLM), we are doing ourselves a very important favor.  We can engage in intelligent conversations with our very busy SOs, MOs, ROs and all the specialists we will have to deal with throughout this entire journey.

It is not short a journey by any means. It is emotional, physically and psychologically taxing, exhausting and at times stressful. So, isn't protecting our physical selves worth our time? Isn’t knowing what’s being done to us and put into us better for us? I do realize that reading medical reports and clinical trials are daunting or difficult for some people. but please, please, please try, try harder. Really, it’s not so bad after all. If you treat it as another learning process, something to acquire to your benefit, you may just find this world of medicine interesting, albeit not by choice. 

It is important that you involve your spouse (or family) and children (depending on their ages) in this process.  When you educate yourself,  can you then help them understand the process and what they can expect to happen to you to prepare them so that they, in turn, can provide the support you will need. You must try To be their anchor wherever possible.  If not,  ask your spouse or family to be the anchor for the family. If you're having lumpectomy or mastectomy,  read it first yourself and then explain to him/them. If you hold yourself together, you are giving them strength as well. Believe that you are capable, believe in your own strength, just believe. If your spouse or family member can accompany you during your consult with the SOs, MOs and other specialists, that would be great. Always try to make a list of questionnaires to bring along. Listen to their recommendations, but asks why.

If you have been reading up, you would then have some idea of what you'll want? If what is being recommended is not what you want, asks about your alternatives. Great doctors will listen to your concerns, and address it, NOT push it aside or insists that only his TP will work for you. In the beginning, my MO kept harping on my Grade 3 HER2+ cancer aggressiveness which I was already very aware, and wanted me on the 12 months Herceptin plan. But because I read and done my research (quite thoroughly I believe), I wouldn't budged. I explained my points, and why I wanted the plan I had chosen. I sent him articles based on clinical facts and statistics that supported my decision. We "conversated" via email for about a week, back and forth until we both reached a compromise that are acceptable to us. I am grateful for the patience my MO extends to me, as did my 2 SOs. Throughout it all, I feel like a part of their team, and that I can approach them anytime. I am truly blessed our paths crossed. I hope you too will find the doctors who will give you the care you deserve. Do not give up on your search. You would instinctively know during the 1st consult if the Dr. you are speaking with is the doctor who will care for you. I went online to look up the credentials of all the doctors at my cancer center, their education and work background, their experiences should be clearly stated in their website.

From my experience, I have found that when I can engage my doctors, they love it! And they are willing to discuss my findings with me, and more willing to come to a compromise with me. Great doctors would, anyway. There will be a few doctors who will feel defensive or hostile  when we start asking questions. If that is the case, I besiege you to find another doctor who won’t have this attitude towards you. You m-u-s-t ! Your life thereafter depends on it. It will make a BIG difference on how you will experience this journey, and you’ll want to make the most of it.  Doctors who treat you as a member of his team, NOT just a number, will make this unpleasant journey, PLEASANT, so pleasant that you won’t dread going in for tests, for surgeries, for therapies. This journey is something that you are unlikely to forget for the rest of your life because the scars will be there to remind you of it. So, as strange as it is to say this - you'll want it to be an unforgettable yet pleasant experience that won't cause you to be sad, or frustrated or bitter. At the end of it all, you want to be to say, "YES, I've conquered and survived it ! I'm stronger and it wasn't so bad after all." You paid for it, for the entire treatment, one way or another. So, you have the right to expect professionalism and empathy at all times and not  be treated as a sub-species of the human race.

How to find these doctors? Ask around – your friends, colleagues, neighbors, relatives, even from forum pages,and your GPs.  That means there are a lot of legwork that must be done before embarking on this journey, before your first visit to good , patient specialists, including your commute time, their availability after office hours, what timeframe can you can expect to get answers to your questions and so forth. You'll want to find a medical practice where most of the doctors and their nurses who will go that extra mile to make your journey less frightening. Whenever anyone recommends any specialist doctor to you, ask what it is about them that make them special. NEVER be afraid to ask, ask, ask, and clarify until you are satisfied. NEVER, NEVER EVER short change yourself, no matter how tired you are, please.

But you too must do your part to educate yourself since doctors cannot explain everything to you as they allocate certain amount of time for each patient. You could find which days are less busy for them so they’ll have more time should you think you have lots of questions. I generally like to get the first appointment in the morning or after lunch or the last appointment of the day, wherever possible.

Finally, I am only sharing my experience thus far with you. There will be members out there who may disagree with my decisions and what I have written They have every right to be since we are all different in our cancer stages, grades and so forth. We all choose what we are most comfortable with. So, if you are here to want to share your experiences, I truly welcome it because it enriches my life. But if you are here just to criticize, I respectfully ask that you refrain from it. Please go start your own thread and offer another perspective. Thank you.

Have a wonderful day every day. 

PS: I am so very lucky to have my younger sister by my side to make sure that I eat nutritionally healthy and bland every single day. We have our disagreements but we do not let it overshadow the many agreements we also have. You see , some of her friends would give her advice about my cancer on some things that I found illogical that that's where we have our disagreements. LOL... Still, I am so blessed. I hope you will be too.... You can always come back here to breastcancer.org. Many ladies here are wonderfully generous to share their experiences with you. Try searching for those whose cancers are similar to yours or your love ones, okay?

 

***MY BREAST CANCER TIMELINE  FOR TESTS, SURGERY & CHEMO ***

02/26/2015: Had ultrasound to check on lump in right breast. Found Tumor. Radiologist suspected cancer. Scheduled for immediate MRI.  Since friend is doctor at this hospital and Chief Radiologist is his colleague, he volunteered to get the results tonight and call me to confirm whether tumor is benign or malignant.02/26/2015: Received call from Dr. friend who confirmed tumor is malignant. Dr. suggested that I fly back home for treatment since I have no medical insurance in his country. Informed sister who helped arranged an advance appointment with GP for the afternoon of 3/02/2015 @ 1445 hours03/01/2015: Flew back to my country. 03/02/2015: Met with GP. Brought ultrasound pictures & MRI film + CD.GP wrote referral letter to see Breast Cancer Specialist (aka Surgical Oncologist, SO). Appointment Nurse obtained date with Cancer Center Hospital for me on 03/09/2015 @ 1530 hours (earliest available).03/03/2015: Contacted Cancer Center to find out if there’s been any cancellation. Got lucky. Someone cancelled on 03/05/2015 @ 1500 hours and I took it.03/05/2015: Met with SO. Brought copy of ultrasound & MRI film. SO wanted 2^nd opinion on MRI due 3 films unclear.  SO suspected cancer to be Stage 2. SO scheduled me in for Ultrasound Guided Fine Needle Biopsy on 03/09/2015 @ 1500 hours, Bone Scan for 03/11/2015 for 1100 hours, EKG and Full Blood Test on 03/12/2015 for 0800 hours.03/06/2015: Received call from SO Friday evening asking me to do a mammogram & abdominal ultrasound at 1400 hours before Biopsy.03/09/2015: Had mammogram + Abdominal US done. Biopsy done at 1630 hours on an outpatient basis. Took about 10-15 mins. Dr. took 6 cores for pathological analysis. Dr. said she will be out a week on conference, and that her colleague, another SO with breast reconstructive surgical skills will cover for her. Was given follow up appointment on 03/16/2015 to discuss results of all test being done and will be done.03/11/2015: Went for Bone Scan Test @ 1000 hours (no food or drink before 0600 hours) Was injected with radioactive dye. Told to walk around and come back at 1330 hours. Reason is for radioactive materials to take effect inside bone. Went back to bone scan center. Told to lay down. Scanning took 30 mins.  Went home. Was told to drink lots of water to discharge radio active material.  Must stay away from children for 2 days due to the radioactive materials.. Was advised they would  be totally discharged from body within 3 days or so.3/12/2015: Went for EKG, Full Blood Test and Chest X-Ray.03/16/2015: Follow up appointment with 2^nd SO.  Was informed of my cancer status: Stage IIB, Grade 3, ER/PR- HER2 +, IHC, IDC, 2.6 cm tumor. Discussed treatment option, lumpectomy, surgery, sentinel lymph node dissection (SLND), breast reconstruction, axillary clearance (ALND) and signed patient consent form. Given surgical date of 3/25/2015, and given appointment to see anesthesiologist and to do pre-surgery check.  Given pre-surgery shower gel to use the night and morning before surgery.03/18/2015: Met with anesthesiologist to discuss any medical history and drug allergy etc.03/19/2015: Went to cancer center to do a advance pre-surgery check-in and sign off on all required forms. Was informed no food by midnight before surgery date. OK to take a sip of water before 0900 hours on surgery day. Given antiseptic shower gel.03/24/2015: Shower with pre-surgery shower gel before bed. 03/25/2015: Shower again in the morning. Checked in for surgery @ 1300 hours. Prep for surgery. 2^nd SO drew on my right breast to ensure that nipple and areola will be at same height as left during reconstructive surgery. Cancelled consent for ALND just before being put under general anesthesia.Woke up in ward at 1730 hours. Body felt numbed, but otherwise OK. Very hungry. Given fish porridge and cracker for dinner.  SO stopped by to check on my breast. Said everything went well, and I can be discharged the next day. Was told to try to rest well, and that she will stop by again the next day. Drank lots of fluid. Pee-ed in bed-pan since didn’t felt  strong enough to walk.  When anesthesia wore off later, was able to go to restroom by myself. IV line still in left lower arm. Requested it be taken off. 03/26/2015: SO’s 3 interns stopped by to check on my breast. Said it looked really good. Had breakfast. SO stopped by with her resident again. 1^st time I actually looked at my breast and pleasantly surprised it was, wow, better than I expected. The entire areola area had dissolvable sutures around it, with a layer of glue above it. There was also a protruding 5 inch long diagonal incision to my right underarm where the 1 sentinel node (2 cm size) was taken out. The area was a little numb but otherwise OK. SO gave me appointment followed up appointment for following Monday. Confirmed OK to be discharged by noon.03/26-04/01 Drank lots of fluid, ate well, did daily right arm stretches at home for week 1 post surgery. Hurt a little but was determined to help my healing along. Got less and less painful everyday. Careful not to sleep on the right side where breast had surgery. Slept in semi prop up position as I found it to be the most comfortable. Still unable to find a comfortable bra until 3 days later when my sister suggested getting nursing bras where flap can be open out.04/02/2015: 1600 hours - Post surgery follow up visit with 1^st and 2^nd SO.  SO was surprised to see me wearing nursing bra. Told them that since nipple and areola were quite sensitive still,  being able to pull down the flap on nursing bra helped reduce friction on both nipple/areola.  Very comfortable and cheap too.  SOs said they will recommend same to their other patients. Both took at look at my post-operated breast, and were  happy with the results still, as was I. Gave permission to 2^nd SO to take pictures of my breast for her lecture to her students.  Was given appointment to meet up with Medical Oncologist in 2 weeks to discuss chemotherapy04/13/2015: Met with MO to discuss chemo treatment plan (see detail discussion written above).  We are constantly debating about the TP I wanted. He was quite gracious to accommodate  me. Also sent me for MUGA (heart function) test and another Full Blood Test.  MO wanted me to start chemo following week,  but I requested to start on 04/27/2015 (5 weeks after surgery) instead as I wanted the reconstructed breast to heal better.04/15/2015: Went for MUGA and Full Blood Test. Between this date and prior to the start of chemo, MO and I had reached a compromise on my Treatment Plan: 12 weeks weekly concurrent Herceptin + paclitaxel (NO anthracycline!!!), to be followed by 3-4 weeks of radiation therapy thereafter.04/27/2015: Start Chemo Session #1.  05/04/2015: Chemo Session #2 (this will be weekly until week 9 or 12,  with 2  weeks rest before proceeding to radiation. At this time, I have not decided whether I want to have radiation since I am having chemo. Normally, radiation follows lumpectomy, but my MO thought because I'm HER2+, that I should have chemo first being Herceptin is a targeted therapy that targets aggressive cancer cells that may be residing in my body. I see no sense in torturing my normal cells twice, with radiation, that is(1) Here's a terrific link with more detail info for your reading pleasure:http://www.womenshealth.gov/publications/our-publications/fact-sheet/early-stage-breast-cancer.html#d(2) This is another good link to readhttp://jco.ascopubs.org/content/32/8/717.full(3) This link teaches you HOW TO READ YOUR PATHOLOGIST REPORT after you've had your BIOPSYhttps://community.breastcancer.org/forum/147/topic/831074?page=1#idx_(4) This link will educate you on the various types of oncoplastic reconstruction techniques that are suitable for the location/size of your tumor, after lumpectomy. Very interesting read:http://www.hindawi.com/journals/ijbc/2011/303879/(5) This link discussed the dosage amount of premedication before Herceptin + before paclitaxel during concurrent therapy that is safer for you, and in your future discussions with your MO and may help your in decision making process:http://www.ncbi.nlm.nih.gov/pubmed/22089428Thank you for visiting this thread, and I wish you the very best throughout this journey

 

NATSGSG

Update 3: May 11,2015 (Monday) Chemo #3.

07500 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 were one almost straight but at a lower point 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 less 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. Watch Professional Masterchef, shower, brush teeth and gargle with biotene before going to bed. Let's see what this week brings.

 

UPDATE: May 12, 2015 (Tuesday)

THE INEVITABLE FINALLY HAPPENED @ 2112 HOURS THIS EVENING DURING SHOWER

Had a sleepless night tossing in bed all Monday night long through early Tuesday morning. Finally decided to get up, and drank 1/2 litre of water. Discovered my tastebuds had changed just slightly. Still, I felt hungry and so ate my usual breakfast of baby oatmeals /raisins/ cranberries/honey + cut bananas. Food still tasted good, appetite still good... Decided to read online for 3 hours. Then went to market with my younger sister to get food for tomorrow. The rest of late morning, lunch and afternoon were spent lazying around or surfing the web, searching for info on equipment I plan on buying, watching youtube of documentary shows, Ellen DeGeneres, etc.. Had dinner of broiled broccoli, bread and rice. .....At exactly 2100 hours, decided to take a shower, wash my hair and then head for an early night. As I started massaging my scalp with shampoo under the shower, 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 that for a moment I felt disheartened....so I just let the water flowed over my entire head, and body and stood savoring of what hair I had left. Must have stood there for 5 minutes and quickly finished my shower, pat myself and my hair dry, and got out.  Then I text message my brother informing him that it's time I head to his hair salon first thing tomorrow to have my commando cut. I guess this day would be another milestone in my life that I shall never ever forget. Sure, I cried a little...who wouldn't? Deep down, I consoled and reminded myself that it's only temporary, and they will sprout again in about 4 weeks' time, more beautiful than ever...