Starting Chemo October 2009

Thank you everyone, for such a warm welcome!  I am slowly pushing the memory of my mother's experience to the back of my mind.  i think it will be easier once I experience the treatment myself.

Laura:  I am totally with you about weight gain!  I though I'd at least lose weight with chemo, but I keep reading horror stories of just the opposite.  It also scares me because weight loss is super important to prevent recurrance in TNs, so my goal is to lose almost 90 pounds if I can.  Tystardust:  I contacted Laurie at franceluxe.com and she's sending me one of her "It's A Wrap" scarves.  What a wonderful resource! Suz45:  I am going to attend a local "Loog Good..." event in a couple of weeks.  I'm really concerned about the skincare changes I will need to make.  Did your BRCA status influence your decision to have a double mast?  Jen:  I'm taking Miatake mushroom supplements because a recent study said they were effective against cancer.  My oncologist recommended I start taking 50mg of B6 twice a day starting now to fight the neuropathy SE in my chemo meds.  Suzi:  I'm going to be on T/C too, but for 4 tx.  I'm sorry you had a reaction, but it was fortunate that you already knew the signs that something was wrong. Renee Jean: I'm glad you are having a good post-chemo day and that the fluids are working.  Laura: What did your oncologist say about Botox?  I use it to stop my blinking (blepharospasam SE from a previous med) and am getting my injections a few days before my first chemo tx.  I forgot to mention it to my onco during my consult with her.

Be well,  Sido

I just got back from the surgeon - they took 19 nodes, and they were ALL NEGATIVE!!  Hooray!  Now I just have to do some stretching exercises for an inflamed tendon (that's what has been causing my arm pain apparently).  Drain is still in, but I'm hopeful that I'll be able to get it out by Monday.

Wow, Sido, you've been through alot to this point!  You deserve a break!  Maybe you'll get it during chemo, with minimal s/e's.  

Mary, it's ok to be sad. i can't keep it to 5 minutes either!  But I do make an effort to do something I enjoy every day, be it calling a friend, watching a funny TV show, even taking a nap if I just can't deal with things.  This is such a difficult time for us, you have to allow yourself your emotions, as long as you don't let them overwhelm you!

Here's to a great day for all in our group!

Peace... 

I'm thilled at the results!  My original surgery showed two small tumors in one of my sentinal nodes, so I had my second surgery last week to take out more lymph nodes and test them.  I'm hoping that since these nodes are clear, that the likelihood of it spreading is very low.

I'm impressed that you're out walking.  I'm still too tired to do much of anything - just going to the appointment tired me out.

I think I'm going to sign up for the LGFB workshop that's coming up at my cancer center in a few weeks.  Seems like a good experience for everyone who has gone through it. 

Azdiva - I agree dogs are funny - it doesn't matter the size of the dog it's the attitude that counts!  According to the dog pyschologist my little guy needs more crate time and more vigorous walks!

I'm sure we all could benefit from that advice - more rest and more exercise!!

As for your question about the health care here in Canada I can't really comment except to say that every doctor/hospital is different even within the same country.  I've compared stories with other Canadian women and some waited at different stages and others got very fast "service".  It's really a bit inconsistent.

For example - I didn't experience much of a wait time for my initial assessment, tests or surgery - but I have had a bit of wait to get started with chemo.  My BS and onc both agreed that 6-8 weeks would be an optimal wait before I started chemo. Don' t know where that time frame came from although I am at 8 weeks post-op as of tomorrow and "should" be starting chemo next week.

Apparently I'm not a "rush case".  I guess that's a good thing.

My diagnostic mammogram & U/S were on July 2, I saw my GP on July 6 and he already had the results, on July 7 I got a call from his office with a BS appt for July 15 and the breast MRI for July 13.  All of which I thought happened very fast - my head was spinning.

Next I waited for the results of my needle biopsy done in the surgeon's office on July 15 and I got those results on July 27 (I guess a bit of long wait) and had my Mast scheduled for Aug 7.  Personally I thought that the surgery date came very fast without much time to consider my options or look into reconstruction.  I was told there was no time to wait.

One of the biggest obstacles I've been coming across with my treatment has been doctor vacations! Both my surgeon and onc have been on vacation during my stint with BC.  Don't know if it was the time of year - summer - or what?

How can these doctors go on vacation before dealing with ME and getting my care sorted out???  How can they enjoy their margaritas on sunny beaches while I'm at home filled with anxiety waiting for "the call"???

Seriously, I know they work hard and need a break - and maybe I should be drinking the margaritas while I wait for them??? Now there's a thought!

I'm learning so much from this experience about stuff I didn't really want to learn about but have to...I'm very appreciative of all the information shared on this site.

One thing I have learned is that BC is expensive!

I've been on the phone way too much with my extended health insurance trying to find out what is covered and what is not, spending way too much time and money at the pharmacy, spending way too much on hospital parking and spending way too much time worrying about spending way too much!

Today I am going to relax and enjoy my fatty bits and pick out prime spots for the neupogen shots that will soon be coming....

 Enjoy the rest of your day ladies!

Marie, are you giving yourself the neupogen shots? Mine were  $180 each shot (x7) each chemo, so that wasnt cheep. I gave them to myself in the thighs. I tried the belly once and it was unbearable... maybe I hit the wrong spot . Im a walker too, take my lil dog out for at least a mile (or 1.5km) every day. It helps with your energy level no matter how bad you feel. Oh and I think you made the right decision for you. This is a long journey, you have to find some enjoyment where you can!

Stardust. YAAAAA on the negative nodes! Im so happy for you! Have read all posts but gotta run for the moment.

Lol.. No answer for the botox?? But lol on the whole body description

Gotta run. Hugs gals, Suz

Hi Onty, nice to meet you!

Laura, that is one BIG dog you have!  I thought my cat was fat when he weighed 12 pounds!

I can't remember who said it, Mary, Marie??  Anyway...the description of the "pit cave" was hilarious!  That's exactly what I've got, and between that and the numbness from the nerve damage, I can't shave under my arms for nothin'.  

Jen, fullcircle - hope your treatment today went well.  

Well, today's news really improved my mood, which I sorely needed.  I was able to take a nap this afternoon and laugh at some TV today (watched the movie "Dodgeball" - stupid, but funny!).  Next step...oncologist on Wednesday.  Hopefully I won't have to wait too long for my chemo to start.  The sooner it starts, the sooner I'm finished.

Peace to all! 

It was me that had the "hairy pit cave"....

I bought one of those personal trimmers and bribed my daughter to shave me once with it. 

After a couple of weeks I started doing it myself with a razor and I've been fine ever since.  I do not have any feeling under my arm or on the underside of my arm but so far so good and no nicks or cuts!

Good Morning to All!

I really haven't had a problem shaving the pit cave.  Probably because she only removed 2 lymph nodes (1 SNB).  I asked my oncologist if maybe the surgeon should've taken more (I see most everyone else had more taken).  He said that that should be fine.  I had a slight panic attack yesterday when I found a little lump in my armpit, but it is gone this morning.  I am prone to getting clogged sweat glands so I should have known.  But every little unexplained lump screams CANCER to me now.  Even a bruise on my leg that I couldn't remember getting!

I have an appointment with onc today for my pre-chemo "blessing."  He wants to make sure my 2nd surgery incision has healed enough.  It looks good to me, relatively speaking!  Not showing to anyone else though!  Then off to have my blood drawn, which I guess will now be a weekly occurrence.

I am going to ask onc today if I can be included in the bisphosphonates trial.  Is anyone else on it?  It looks really promising!  I think it is SWOG-SO307 if anyone is interested.  Mary - Zoladex is part of this trial.  The drugs are ones like in the Boniva commercial ( I think Boniva is part of it too).  Somehow they act to keep cancer from going into your bones, which is one of the most likely places for breast cancer to travel.

My little (30 lb) dog tried to sleep on my chest last night.  That, combined with the kevlar vest feeling of the tissue expanders has me moving slow this morning.  Hoping my cup of joe will bring me to life.  I hope the chemo is selective when it messes with my tastes buds.  Please make me NOT LIKE French fries, white bread, pizza, cheese.  But do not alter my love for coffee and a good red wine!  

I have been asked to go to a wine tasting Sunday evening (I help select wines for a restaurant).  Thinking it is probably not a good idea to go since it is the evening before first chemo.  But I will ask the always patient Dr. Cavalcant!  He already thinks I'm crazy, so this will reinforce his opinion.

Have a great day, Everyone!  I am already getting a little nervous!

L 

Good Morning / Afternoon!

I feel like such a wuss, but I'm still having a lot of pain from my lumpectomy and SNB on 8/17.  I probably did too much at work yesterday, but all I did was carry my notebook and papers to my office and to class with my non-surgical arm.  The class was even a grad seminar, so we just sat and talked for three hours.  I had some leftover Vicodin that I took last night, but I don't want to take more  in case something gets really bad later on.  But it hurts, and its bringing me down today.

Laura:  I spoke to my oncol. and she okayed my botox!  Yea!  No more blinking or wrinkles. txstardust: Congrats on the clear nodes!!  I'm sorry your intended is being a pill, but he can take care of himself.  MaryNY: I did paste my message because when I initially wrote it I was over my 5 post limit.  I pasted it and tried to go back and edit when I saw the code, but the code didn't show up in the dialogue box.  Wierd. So, I'll just keep quiet until I'm allowed to post again and not try to save my thoughts for the next day. MarieK:  What does do you use for the mushroom supplement?  I just guessed.  Also, Naproxes is brilliant for menstrual cramps!  Best stuff ever.  Your dog sounds cute, even if he is bossy.  My corgi is a pretty passive guy, though I tried to establish dominance early by staring him down when he was bratty.  He also LOVES his crate!  In fact, he won't sleep untill he's inside and the door is latched. 

A number of you have mentioned shaving your underarms, have any of you tried an epilator?  I used to wax, but I'm afraid to remove a layer of skin or anything after having nodes romoved.  my epilator was great before my surgery, but I haven't tried it since.

unklezwifeonty: Welcome to another triple-negative!  For me, TC is my only option because of my age and being grade III.  I wish I had another choice that would decrease my risk of recurrance as much or close to chemo.

Be well Ladies,  Sido

Hello October Ladies!

Just thought I'd pop on for a quickie hello before I head out for my weekend at the volleyball tournament (I'm not playing - I'm the chauffeur and bag watcher!).

I hope that everyone is having a good day or least a better day. 

I agree with what others have already written - if you're not feeling well you need to talk to your doctor or nurse and get something that will help you.  My nurse told me that if I still feel nauseated after taking my medication or I vomit more than 3 times in 24 hours or if I have diarrhea more than 3 times in 24 hours than I am to go to the ER for hydration and diffrerent/more medication.

Sido - for the Red Reishi mushroom supplement I take 2 pills a day (1000 mg).  The one I use now is New Chapter Organics.  I was using the Meiki but it was $100 for 60 pills and with all 4 of us on it that was getting expensive!

A word about the Naproxen - I was worried about the tummy issues with that but my doctor told me yesterday to watch my salt intake and since I don't normally salt my food I should be ok.

Well I'm off to pack and rustle up some snacks for tournament!

TGIF!! Have a great weekend everyone!

Marie

Hi ladies (and lurking gentlemen supporters) !

I so appreciated all of the great hints and tips these boards offer.  It made my first tx relatively anxiety free   I especially found useful for me (I am a bit OCD) the details.  With that said, I am returning the favor for others who want specifics of the actual process of infusion for AC dose dense.  CAUTION - long post

I just got back from tx 1 which was ssssooooooo easy I can not even possibly believe it.  I know that the infusion "part of the program" is suppose to be without a hitch and completely painless;  however if there could be a complication - it is my curse that I will experience it.  NOT TODAY!  I actually started my tx early - I was origianlly planned to start on Oct 7 with dose dense AC x 4 then weekly T x 12.  Daily Radiation with boost - 7 weeks total planned thereafter; and bringing up the rear is Arimidex as I was pre-menapausal when diagnosed and now post-menapausal due to hysterectomy/oophrectomy 15 days ago. 

I saw my medical onc yesterday and when she asked if I wanted to start today I was ecstatic.  My thoughts are the sooner I can start the sooner it will be completed and  I do not like waiting for anything.  I live on a resort island near other resort towns so the idea was to get me into the facility and on my way before the "snowbirds" return in their winter migration to our little mecca.  In addition to the facility getting crowded come November, the traffic is also horrific getting there as it is only a two lane road (one each direction) with a speed limit of "slower than an ant".  When I say that I am on an island, Longboat Key is aproximately 9 miles in length and where I live, only two blocks wide.  I am blessed with views that few ever see in their lifetime so I know how fortunate I am.  (I moved here from Philadelphia, PA- center city)  The only drawback for having paradise out my windows is the traffic during the winter season.  We actually try to spend the height of the winter away - we are blessed to have a second home in beautiful Keystone, CO.

So, back to the treatment.  I arrived at 8:30am.  I had a normal breakfast as directed.  No pre-meds were necessary nor prescribed. My bloodwork was done and satisfactory.  Although my wbc and rbc levels were slightly below the acceptable range I was cleared to start.  Of course since I had 4 surgeries in 3 weeks that was probably to be expected. Since I was one of the first at the center the blood test results were back within 5 minutes and I immediately started the tx.  I had a port put in two weeks ago so it was such a breeze.  The port was actually used the day it was inserted for the completion of my hyst/ooph (due to my iv site becoming infiltrated) and again for the MUGA scan, so I know it worked and sure enough there were no new issues with it. 

First in was the Aviox (sp. ?) for nausea (aprox 15 minutes), next Decadron - the steriod (aprox 25 minutes), then Emend for nausea (aprox 15 minutes) then the big guns - the red devil -Adriamycin via push (together with saline) for aprox 15 minutes.  My nurse sat with me as she administered the push and she gave me a delicious mango flavored popsicle to chew on during this to prevent the possible mouth sores. (I usually buy the cheapo kids ones so the gourmet Baskin Robbins one was a treat. LOL)  The Cyclophosphamide (cytoxin) was my final drug and took 45 minutes.  I had two and a half bottles of water while there - 60 oz and yes I did pee red before I even left the facility.  I experienced no issues whatsoever.  We were home by lunch and I made my hubby and myself a late brunch of omelet, pancakes and home fries. (I did not want to go crazy with anything hard to digest in the event I have digestive issues later today.) 

My facility is the Florida Cancer Specialists/Research Center in Sarasota, FL - with four rooms of 12 chairs in each.  There is an aquarium room with a huge full wall acquarium, two rooms with tv's and a quiet/slumber rooms that have both "the chairs" and also plush couches.  I chose one of the tv rooms as I arrived early and I was able to control the remote. (Did I mention the hardest part of the cancer journey for me is the whole lack of control issue we face?) My chair had both massage and heat features and I brought my own blankets so it was like sitting in my own media room and I was extremely comfortable.  My husband accompanied me and was a love to keep getting me water and magazines.  By the time we were leaving (near noon), all of the rooms were almost full to capacity.  (Did I also mention that although I am a youthful 49 and my husband is 55, the average age for this area is something akin to when my neighbors fondly recall their first car - it was literally one of the first cars to come off the assembly lines.  I kid you not, my neighbors are well over age 80, as are the majority of the residents.)

After my onc appt yesterday, I filled my prescriptions for Emend, Decadron, Anzamet - each taken orally for the next two days, together with Compazine to have if needed for nausea.  I have a long history of severe Crohn's Disease and Gastroparesis so I plan to take ALL anti-nausea meds and not risk an unwanted flareup of either pre-existing condition.  On a positive note, because of my experiences with those conditions, I also know first hand most of the expected side effects of chemo - including the hair loss. 

I get my Neulasta shot at 8 am on Sunday.  My onc nurse recommended taking Claritan (NOT the 24 hr) and she actually worked with a specialist at the facility doing a clinical study on its use who strongly advocates it so perhaps the medical field is soon catching up and is going to recognize the beneficial use for it. She cautioned that women (I am underweight right now due to the multiple surgeries - the effect hitting especially thinner women) feel it in the sternum area and often are frightened it could be a heart attack so I was happy we talked about it at length should those symptoms rear their ugly head. Fingers crossed they will be avoided

So, it is now over 3 hours since I have completed my first tx and for now I will ride the wave of no side effects and positive energy!  I realize the next few days, or perhaps even hours, may not be so carefree so I revel in the present! Thank you all so very much for being here.  I am quiet for posting but I have been a faithful reader of all of your journeys.  Happy Friday and may your days be SEF (side effect free).

Warmest regards,

Jaclyn

Yep - I think that was what I meant to type.  It could be early chemo brain but more likely a "blonde moment". Unfortunatley that is not something I will be saying for a while as once I lose my hair it will inevitably be a different type of blonde ... more of the gray hue.

-J

I am so glad I found this topic. I actually lost a few pounds during Chemo. but boy did I get flabby. I am eating normal again and the weight is coming right back. Food just taste so good again!

I weigh 172 lbs on a 5'5" frame. Not good and probably one of the reasons I have B.C. I was a chunky early teen, and to skinny teenager. Had three kids and after the third one never really lost the weight. But now I am back on the treadmill and trying to watch what I eat. Especially portion size. I eat lumberjack size portions.

I don't really want to diet, as much as eat healthier, tone and loss some weight.

I've got to take the time and read back all the previous post. I hope to pick up some good advice and support.

Quick history of my B.C. My mom was told she had B.C. 10 day before me. We both have just recently finished Chemo. I have radiation starting soon, and she starts hormone therapy. I am triple neg. Our cancer is NOT genetic. Thank God as I have two beautiful daughters and a handsome son who I would dread passing this disease to.

Thank you for starting this topic.