Starting chemo January 2009?

Kathy, sorry you're feeling rough.  I found the nausea lasted longer with each cycle too, interesting that you're noticing it.  Yes, I started out with compazine and they switched me to Tigan because the compazine was dropping my blood pressure and leaving me very shaky.  I have to say, it worked the best of the meds though, so for those wierd day 10, why am I feeling nausea again compazine would be my choice, just didn't do well taking it around the clock for a few days.   Re: genetic testing, they will research the whole family tree (especially if suspicious for BRCA2 which is associated with other cancers).  We're checking to be sure that the chemopause is real, I was pre-menopausal to start, but even if post we're thinking of tamoxifen to start then switching to AI, for the same reason you mentioned, years of experience showing a low SE profile. 

Kathy - I hope you are having a good day.  I happen to be looking on-line for information about Tamoxifen today, although I am pre-menopausal.  Also, I have prescriptions for both Compazine and Zofran but have not needed them or taken them while having Taxol.  I took them as prescribed when I was having AC treatments and really needed them then for nausea.  With the Adria in my system, nothing else I was taking seemed significant, and I was taking so many different drugs it was hard to figure out which were causing which SEs.  I was happy to stop taking both the Compazine and Zofran though just to have a better handle on what I was doing to my body, and my constipation is almost gone.  I am only mildly blocked the morning after treatment, so far.  I wonder how much my SEs will intensify over the course of the next 8 weeks. 

Five years of Tamoxifen has been recommended for me. I have read so many negative things about it in general.  Most alarmingly, it increases the risk of uterine cancer.  In pre-menopausal women the abrupt change in hormones causes intense mood swings and weight gain.  It's known to increase LDL cholesterol.  The drug commonly causes cataracts too.  I do not see that any of this is denied at all, but the percentage of women reported who suffer these effects seems to me to be manipulated perhaps.  I have been looking on-line a little to see if there are alternatives.  I want to be willing to do what is best even if it's a difficult road, but I am not feeling good about taking this drug.

I did stay home today and have napped about 6 hours so far.  I am amazed I needed that much rest because I slept well last night.  I finally read some old posts and realize my gorging is likely from having Decadron in my IV each time.  In general, I am functioning better and able to take in information better than I was while on AC.  My appetite is a little more normal today than it was in the days just after my treatment.  I am achy but not alrmingly so. 

ddlatt - I read a little about Abraxane IV after reading your post.  None of the allergy risk we have now is necessary at all and by most accounts the Abraxane is more effective.  I am amazed.  It would be good to clamour for this.  I ate an avocado yesterday and my throat swelled some.  I have never had that problem before.         

ddlatt- I posted here early on as I started chemo in Jan. Sorta drifted over to the TCH thread as that is the chemo closest to mine. But instead of Taxotere, I have been on Abraxane from the start (c-carboplatin, H-herceptin). It is $$$ and most insurance will only pay for late stagers. My Onc. was able to get it for me due to my bilateral carpal and the fact that it is less likely to cause neuropathy. That holds true due to it's composition and the fact that no pre meds (which also cause nueropathy) are required. Keep in mind that I go weekly x 3 instead of every three. But my hands have held out wonderfully! I'll get the tingling in both hands and feet but not often and it is very manageable. I have one more cycle to go and thus far have had no nail problems either. I hope to say the same at the end of treatment! If you can get it, you may find it much more tolerable. I do have Emend after starting of with Zofran as the nausea got worse. But that could be more from the carbo.

Best of luck to you.

Ellen

Hi all:

LadyJane: So glad you're home. Bury that guilt...I'll grab a shovel and try to bury mine too (the "why didn't I catch this sooner, why did I trust the mammogram guilt").

KT57--I'm wondering about the AL vs. Tamox. I am 53 and went through menopause at 49. I've read you can only take Tamox for 5 yrs, then AL for 5 years, but that maybe ALs are more effective? I need to talk with my onc. I've been reading a bit on the hormone thread here. SEs seem like chemo--some of us have them and other don't or not as much. I don't know if I'll start during or after radiation.

Renrel--I had vit D checked when I was diagnosed. It was just 25. Then 1 month ago my onc tested again and it dropped to 20. I am taking D2, 1.25 mg softgel once/week for 9 weeks, then I'll have my blood tested again. I'm glad my onc is on top of this, as there is more and more research showing the importance of Vit D, and It's also important in helping us absorb the calcium we need for our bones (which take a beating during chemo and also if we take the anti-homonals).

Ddlatt--HAIR HAIR HAIR. Since you mentioned your pink hair I've been looking for some with a magnifying glass. I have 1/16 (or shorter) stubbies---white (I'll call it blond for now). I had brown with some grey before. I'm so excited, but I guess I should knock on wood. My eyelashes and brows seem to continue to fall out (I'd rather keep them than the head hair).

PrincessKauai--Sea Ranch--love that place! I'm glad you were able to go and do some healing.

Holtbolt--I missed oprah-darn. He's been such a strong person for so long. Those nervous system degenerative diseases like Parkinson's and Huntington's are tough ones.

Good luck to everyone considering stopping chemo. I think for node neg. it's just insurance, and if your body is saying stop you've probably had enough to do the trick. With my nodes involved I feel like I need to plug along no matter what because I know cells went beyond the tumor.

I'm doing the weekly Taxol, and so far not too bad, although I can tell I'm getting  a bit more tired with each one. My accupuncture helped hugely yesterday My weeks seem to go fast with it. Treatment on Fridays, Good day on Sat with steroids, bad day on Sun with steroid crash and body aches, Monday start to feel better, work T, Wed Thur, and then tx on Friday again. I think I can do it but I AM READY TO BE DONE!!! (And it sounds like we're all really feeling that). Also, my blood counts have been going up slowly. Don't know why--Chinese herbs or all the beef .

Thinking of you Jewels. Hoping you're having some nice spring weather. I have spring break next week, and so does dd from high school. Hope to get to the mountains, but not sure if the altitude would be good since I'm a bit short of breath sometimes.

Berkeleykim: loved your supportive words, thanks

Ladyjane: how are you feeling today?  the weakness takes a long time, but hoping you can wean off that oxygen fast and your breathing is better, that must be very hard.  Thinking of you.  (kicking myself right now because I bit off more then I can chew and have way too much work to do from home today)

Hi all, its been awhile since i have been able to write, have been pretty sick, white count has been down, fevers of 102, chills, abx. still feel terrible and i am dreading starting AC next week.

hope you all are doing well. hugs to all

KT57....I have had genteic test and am BRCA1 positive.  Hence I removed ovaries at same time of mastectomy.  I was not in menopause at the time....I am 45.  I imagine I am in menopause now...allthogh I can't really tell.  No periods is the obvious clue.  I finished the chemo last Wednesday (4X TC) and will see the onc in 2 weeks about starting AI.  We have chosen Arimadex.  I asked him why..has said tamoxafin is for generally for prempause...and arimadex has been out longer than aromasin so there is more data.....which he likes.  In the event that I don't due well on the Arimadex we will try something else. IMHO....I don't think I'll have trouble with the Arimadex. 

I will also be starting a clinical trial for an IV doseof a  bisphosphinate.....which is a bone strenthener.  (I think it's zometa..I could be wrong).....they are trying to determine if these meds help prevent future bone mets in women with non-mets stage 1,2,3 cancer. 

I hope everyone starts feeling better and get's through these next few treatments......

I can wait to see a roll call for The "ALL DONE: January Jewels" .....that's going to be great!!!!

 I am with all of you who are trying to get their strength back to start exercising or going for a walk. I love walks but I just have no energy. I make it to my mailbox and feel like I walked a mile. I'm doing a little at a time. I still can't believe I've been out of the hospital for a week and still am weak and tired. I do feel like I'm getting better. I took my 14yr old daughter shopping yesterday, but had to find a chair. I got tired real fast just walking around. My girls will be on spring break staring Fri. and I plan on doing things with them, even if I have to rest. I miss doing normal things. I'm tired of taking naps. I just want to get out in the nice weather and enjoy myself. My 1st taxotere is next Fri. and I hope it goes well. I got my prescription filled for Decadron. What exactly are the s/e with this drug. I hear different things. Also, I have lost most of my lower lashes, but i still have some on top and I still have my eyebrows. Probably cuz their thick and I'm not messing with them. Hope everyone having treatments this week goes well.

Hi January Jewels.  I am feeling a bit blue.  Woke up with a feeling of dred.  I have been waking up like this now and then and so i go back to my path report and read what type of cancer I have.  I am descrbed as multifocal because not only do I have/had cancer throughout my breast I also have  the sub types of IDC.   What I read about multifocal cancer is that most women with it had a huge chance of getting the cancer in the other breast.  To me it is a no brainer, take off the other breast.  Yet, the breast surgeon and the oncologist say I should have lots and lots of mris.  My god , I feel a bit pissy about that point.  The mammograms missed  it, the ultrasounds missed it and the digital mammos missed it.....so much so I have a lymph node that is positive and I keep waking up feeling a horrible feeling of dred.  I guess what I am asking is, what will it do for me to insist on having the other breast taken off?  Will it help?  Or will I wake up some day with the cancer lurking in my bones, in my liver, in my brain?  I suppose I could say it is day 13 since treatment and I am feeling the blues., I want to be proactive.  do you have anything for me to chew on?????

Jess: Joining you in pissiness.

I really know what you mean. Mammograms saw NONE of my 3 tumors (multifocal IDC and extensive DCIS). Neither were 2 tumors felt by onc, surgeon, or NP, including the biggest one.  MRI showed a suspicious node, and 2 others were positive. I did have a biopsy on my "good" breast 4 years ago for calcifications (benign), and recent MRI showed nothing there. Surgeon convinced me to keep it.

Since my mx was my 1st surgery ever and I was so scared of being put under I went along with his advice. Now I don't know. I'm going to revisit having it off. I am C cup, so very lopsided if I don't wear a fooby. I don't want to have surgery again, but I want recurrence even less of course. I never did ask my onc. but will ask him. My surgeon asks about if I want recon. but I could care less at this point. Now I'm wondering if my insurance would cover it. Of course husband prefers I keep the "good" girl, but not at the expense of my life.

I want the worry monkey off my back. I hear time is what does it.  Sorry now good advice--I feel in the same boat.

kim

re: taxol versus abraxane

Dr. Mark Moasser at UCSF just called me (he was my fourth opinion doctor) and I asked him about Taxol vs. Abraxane. He said Abraxane is twice as effective as Taxol and he trusts it completely. He said he recommends I switch to it since I had an allergic reaction to Taxol. It's a 30-minute infusion with no pre-meds (compared to pre-meds and a 3-hr Taxol infusion).  He said I will still have neuropathy just like with Taxol. It's given once a week for three weeks, one week off, then once a week for there more weeks - smaller doses.  It's expensive, and some insurance companies will only pay for it if a patient has had an allergic reaction to Taxol.  Here's all the info on Abraxane: http://www.abraxane.com/

re: zometa 

I told Moasser that I don't want to take Zometa after my treatment. He recommended it initially because it has been proven to reduce breast cancer recurrence by 35%. I am afraid of the osteonecrosis (discussed earlier today on this board). He said my chances of recurrence are already very low because of my bilateral mastectomy, chemo, and radiation, and that not taking Zometa is fine.  Thank goodness!  My Nevada onc has three cases os osteonecrosis due to Zometa. 

Hi Jewels,

Sadly I have to join the ending-up-in-hospital party. Was admitted yesterday with a fever which they believe is due to an infection. My neutraphil count was 0.2 when they admitted me and dropped down to 0 today so they have me in protective isolation and are pumping me full of antibiotics. If the count doesn't rise by Saturday they will give me a shot of something to stimulate the cells which I think is what many of you have. Knowing how awful that isfor you guys I asked about the side effects and he said "body aches". I've been aching since last Friday from the taxotere so that is not great news. Still, as my husband said, it's better than a life-threatening infection.

So they think I'll be here until Sat, but the doc warned me it could be longer -- maybe a week depending on how long it take my neutraphils to get above .5 again.

Typically this has all happened while my husband is overseas. Luckily I have some great friends who are very supportive - one of whom who went and got my laptop for me tonight so I can be connected to the outside world.

Anyway, hope you are all doing better.

K.