HER II and Taxol Trial

Hello everyone

Hair just started falling out a few days ago. It has increased a bit today so I'm not sure if it will all fall out or just thin out. I'm thinking it's the chemo doing it's job so just not going to let it bother me much. I have had a few little se's but not much, just one bad day so far. This week I only had 1/2 the dex so that has helped me relax and also not be so hungry. I did see my onc this week and got good news that "the tumah" has already shrunk quite a bit! Very good news. I could feel that is was smaller the first week! TH is good stuff.

Does anyone else get hot & cold on this. This is so annoying!

Hope everyone has an easy week.

Laura

Roso: I so agree that in the big picture hair is a small thing to endure. I want the chemo to kill the cancer so it will get the hair too, OH WELL. Take the bad with the good. We are allowed to feel it and be a little sad, nut we will move past it.

I'm beginning to have a little numbing in the fingers on my right hand & toes on right foot. I sent my onc team an email about it. They really stressed being on top of this should it happen. I am hoping it will not get worse or be a big deal. Does anyone know what is done for this? I really want to continue with this treatment since I know it's working so fast.

Vitamins are such a talking point here on the boards. Some Drs really stress them others do not. Mine wants to pre approve anything I take. She said definately no Vit C. Said take good multi, Vit D & calcium. There is much talk about testing your vit. D levels, my Dr never mentioned it. I asked her about the acytl lcarnatine and they said do not recommend, and sent me copies of studies that were not good enough for them to recommend. They did not say it was a no, just don't support using it.

I'm scheduled to start this regimen on March 17th (12 weeks Taxol/Herceptin combo, then Herceptin every 3 weeks for 9 months). Had a BMX (one side prophylactic, cancer side they got clear margins, no node involvement). A friend of mine with the same cancer type was recommended this protocol by both Stanford and Sloan, and is currently in the Herceptin-only phase of it. She said the only SE she had was fatigue, hair loss and insomnia for 3 nights from the pre-med Decadron.



My pre-meds will be Benadryl, Decadron, and Aloxi.



I'm going to use the frozen mitts & slippers to hopefully eliminate hand and foot issues (even though the studies were done with Taxotere, I figured they're both sister taxanes and therefore what worked so spectacularly with Taxotere should hopefully do the same with Taxol). Not sure if it will also help avoid neuropathy but it can't hurt and might even help; consider me a "clinical trial of one" in that respect!



My oncologist is anti-supplements, not even a multivitamin; her reasoning is that there have been no studies done regarding synergistic effects (either good or bad) and thus why take the chance of a supplement possibly reducing the desired effect of the chemo regimen?



I don't want to watch the hair-loss "process' occur and thus even though my doctor said the loss won't start till week 4, I'm going to get rid of it all the night before my first treatment and be done with it. Quick trauma and then move on....!



I don't eat meat but plan to increase my protein intake from other sources once I start. I've already increased my water intake to 3 quarts a day which my oncologist says is normally enough for a "chemo day" but I plan to drink even more during those times! The weird thing is that I'm not urinating any more from 3 quarts a day than I was when I was drinking only 1 quart a day ... so for some reason my body is holding onto it. I consume very little sodium so that's not it. You'd think that on 3 qts a day I'd be "swimming" around instead of walking!!

Hi ladies,

lovemygaarden- sounds like you are really well prepared! I just finsihed #7. I agree with Joansf that the fatigue is the hardest and unpredictable. My hair is kind of a mess now and I think your approach of shaving it off is a goond one ( a lot less messy than letting it shed everywhere). I have been experiencing some achiness but taking Advild for it which helps. So far, I have had no neuropathy.

Joansf- Great to see you last Thursday! I will look for you this week. It is a beautiful sunny day here and I am hoping to get out for a walk. 

Kimbers

I love the corollary, and I love your attitude!  It'll be great!  You go girl!!  xo Joan

Hi Cathy--Kim and I actually met on this message board (I don't know if that's clear from the posts). I had asked them if I could be in touch with other women in the study and they said no for confidentiality reasons, but then they told me someone had started the same day.  We figured it out from our posts that we were both at the same hospital...cool, huh.  As for age, it's really painful for me to say that I am 56, so yes, old enough to be your mother!  My actual daughters are 24, 21, and 17.  Good luck tomorrow--congratulations being one-third done!!  Joan

Dear Melinda--I posted about this before, but I had a problem with my legs during the infusion.  They were more restless than crampy--They felt almost like rubber bands--I'd stretch them out and then they'd 'snap back'...stretch, contract, over and over--very uncomfortable but not painful like a 'charley horse'-type cramp.  They said it was from the IV Benadryl and switched it to oral, which worked.  But maybe you've already had benadryl with the AC, so that would rule that out entirely.  I could see how you'd want to walk around the nurses station--they've probably seem it all, so why not go for it.  Best, Joan  

Hi ladies,

Going in for infusion #8 tomorrow. 

Roso88- I had to laugh..I still have some hair but it is shedding a lot and I am always swiffering my hard wood floors (good exercise).

I was diagnosed just before my 40th b-day. In fact, I was still in the hospital for my b-day. Not the way I pictured celebrating my 40th. I have 3 kids...9, 7 and 4. 

I had been feeling pretty good up till #7. Now I am getting the achiness, joint pain after the taxol. 

Kimbers

Melinda--another benadryl note--they put the benadryl in with my IV premeds by mistake yesterday.  I had no leg cramps or other discomfort, and I felt better today than I've ever felt day-after-treatment.  Go figure.  Honestly, I felt so good, I think I'm going to ask them to leave it that way.  Best, Joan

Oh My Goodness, lovemygarden!!  Our TX is virtually identical except that I was diagnosed a year ago and I'm nearly done with Herceptin.  I have 3 more infusions to go. 

DO NOT SHAVE YOUR HEAD BEFORE YOU BEGIN TREATMENT!!  I did 12 weeks of Taxol & Herceptin with Carboplatin added in every 3 weeks and I never lost all my hair.  I did thin out considerably but I never needed a wig.  I finished Chemo at the very end of July and now my hair has completely filled in.  I am the exception to the rule but I do know of another poster here (unfortunately, I can't recall her name at the moment) who had a similar situation.  It happens, its just rare.  You might be lucky like I was!! 

As far as side effects of the chemo, I was also fortunate in that I didn't have very much neuropathy.  Just slight tingling.  Your premeds are very similar to mine, by the way.  My fatigue was progressive.  By the end of treatment I was a lump.  I slept 16 hours a day during the last 2 weeks.  I also had mouth and nose sores no matter what I did or what medications they gave me.  I would occasionally get a bit queasy but only had one day where I really felt sick to my stomach.  I took Compazine and I felt better.  Come to think of it, I took anti nausea drugs after every infusion whether I needed them or not (per my Onc).  I did have muscle and bone pain that was also progressive but I found if I was still I was OK.  By the time the bone and muscle pain got bad my fatigue was also bad so I wasn't moving around all that much.  I had other SE's but it was doable.  Within a month of completing Chemo I felt quite a bit better.  Rads was a piece of cake by comparison.  Herceptin is no big deal.  I have a constant runny nose and occasionally I'm a little fatigued, but other than that, it's OK

I think everyone's experience is a little different with some being worse than others BUT attitude helps.  It goes quickly although I'm sure it doesn't feel that way right now!!  You can do this and it'll be over before you know it. 

I'm still not back to "normal" (its more like a new normal) but I'm doing just fine. I have aches and pains mostly from my surgeries and rads but nothing I can't handle.   I'm doing yoga and walking and trying to build back up to where I was physically before I was diagnosed.  You can do this.

 If I can be of any help, let me know!! 

 Love and Best Regards to ALL!!

ETA.  Just wanted to mention that although I never lost all the hair on my head, I did lose my hair everywhere else.  As a matter of fact, it's still thin and sparse especially on my legs.  I have no hair under the arm where I had chemo.  I lost my eyebrows and eyelashes late in my Chemo treatment and they fell out and came back several times before they finally hung around.  Took forever for them to grow back and look somewhat normal. 

 Hi Weezie!  

It is a difficult decision, because it's hard to find a consensus.  Part of the problem I had was that two Northern California medical centers each gave me different estimates of my risk.  The doc at hospital A estimated the risk of recurrence for me--with a .5 cm tumor--to be around 6%..His notes say.'addition of chemotherapy would reduce this by 1/3 to about 4%, and further addition of herceptin would reduce this by 50% to 2%.'  But then he said the toxicity risks of chemo and herceptin would negate some of this benefit.  His bottom line was that the decision whether to have chemo should be up to me.  But, if I did do chemo there it would be TCH followed by TH.  This Hospital is not participating in the Dana Farber study.

Hospital B is participating in the study.  The doc there put my risk of recurrence at 10-15%, and said that taxol and herceptin would cut it in half, to 5-7% or lower.  

I went with the Dana Farber protocol for several reasons, not all that rational or scientific...I felt I had to do something,so opting out of chemo as the first doc suggested was out of the question.  On the other hand, I wasn't about to sign up for a longer, more toxic regimen, especially with a doc who wasn't committed to giving me any chemo necessarily.  

 The doctor  at Hospital B was very committed to the Dana Farber study. Plus, the hospital's a mile away vs. an hour away for Hospital A.  I also found this doctor to be much more accessible, ie, via email.  To reach the other doctor, I had to call a central number with an interminable wait, then leave a message for his nurse, etc.

 Maybe this helps. I wish you all the best deciding....Joan

BTW, once you sign up for chemo, you won't see much of the onc at all--just the nurse practioner and the infusion nurses, also probably a study coordinator.  

hi weezie,

i'm at dana farber doing the trial. not sure who you saw but my onc is excellent and well regarded (let me know if you want her name).  she reports to eric winer who is the top breast cancer guy in MA.

since our diagnoses are very similar, pls check out my previous post on risk assessment -- hopefully it will help you out.  if you want anymore info, feel free to IM me.  best of luck with everything.  this is the toughest part.  once you get going with the treatment, it's not as bad.

joan, kimbers, lbreedl, melinda and everyone else going through treatment - hope all is well.  you're all in my thoughts. sending you lots of good energy.

btw, i cracked down and shaved my head even though i had only lost about 1/3 of my hair.  all the shedding was driving me crazy!!  not sure if being bald and having to constantly worry about my wig/covering my head is any better....

Hi ladies,

I hope everyone is doing well!

Joansf- It is always nice to see you on Thursdays! Just 2 more to go!

Roso88- I also shaved my head...i got tired of the shedding too but I agree that having to deal with wigs and scarves is not easy!

Wheezie- I know how hard it can be to make a decision about chemo. I'm happy I'm doing the trial. It is a pretty well tolerate regimen and I definately feel like I"m getting the benefit of chemo without all the really bad side effects. Not to say this trial is a piece of cake but it is doable. I also like all of the follow up after the chemo is done. You are followed very closely in a trial.  Good luck with your decision!

Kimbers

Hi everyone, just logging in with an update the day after my TH #3!

I had a bad reaction to the first-treatment Benadryl -- my BP suddenly dropped off a cliff about 3/4 of the way through the standard 50mg infusion! Luckily I was able to keep conscious but it took almost an hour for my BP to climb back up to a safe-normal (for me) of 115-120/70. So they did the first Herceptin drip super-slow, 2.5 hours instead of 90 mins. No reactions at all to the Decadron, Aloxi, or Taxol infusions. (I'd never even taken oral Benadryl before in my life, so now that is added to my mile-long "med no-no list" for sure.)

Second chemo had no Benadryl, just Herceptin followed by Aloxi/Decadron/Taxol. They wanted to push the Herceptin drip to 30 mins but I wasn't comfortable with that and wanted a 60 min drip; we compromised at 45 mins and had no problem. Taxol down to a 60 min drip with no problems.

 I developed a rash on the back of my neck between #2 and #3 but put OTC Cortaid ointment on it and it cleared up. I suspect it was due to switching to (again never before used) Johnsons Baby Shampoo on my buzzed scalp that week and not rinsing it off the back of my neck completely. I stopped using that and now just use the same Aloe Glycerin soap that I use on the rest of my body. A couple of zits on my chin but I think that's because I stopped using my nightly Finacea there (for rosacea) when I started the chemo.

 I experienced a little dizziness during the first 2 Herceptin drips and on the ride home afterward, and suspected it may be due to a blood-sugar drop during that drip; so for this #3 I changed my pre-infusion morning food intake a little: 8 oz of Pedialyte (for electrolytes), 8 oz of apple juice (for sugar), a banana muffin before leaving for the onc's, and a mini-cup of diced pears during the infusion. No dizziness at all this time, despite the Herceptin drip being brought up to only 30 mins.

I have not had any hair loss yet but am sure it is coming! My buzzed head has already grown 1/2" of new hair since March 16th which is more than I want to have when it does start coming out in a week or two for sure; so am going to have it buzzed again the day before chemo #4 which is next Wednesday.

 My WBC dropped a bit before yesterday's chemo, to 3.5 which is 1.0 below 'normal" levels. I'm hoping that it was because my chemo had to be done a day early because the onc was double-booked on my normal Wednesday this week, and thus I had one day less of "bounce-back" time. From now on it will always be on Wednesdays until my last one on June 2nd. So I will have an extra WBC-recovery day this week which I hope will help with next week's count.

Other than that I have had no side effects yet, for which I am profoundly grateful every day so far! In fact I feel better and have more energy than I had before entering on this "journey" at the end of December. I know that with time and ongoing treatments this will change but I am taking it one day/week at a time and happy for each good day! I'm also on the March 2010 Chemo board and when I read about how awful the ladies who are getting the more standard regimens (TC, etc) are already feeling, I feel guilty about posting that I'm not going through the same stuff (yet)! So now I tend to read instead of post there. 

The only meds I get are the infusion Decadron and the Aloxi IV "shot". No insomnia, jitters or anything else from the Decadron, and a half-dose of Miralax takes care of the second-day slight constipation from the Aloxi. After that everything "moves" fine daily. I may have mentioned before that my onc is adamantly against taking any kind of vitamin or herbal supplements while on chemo.. not even fish oil with Vitamin E ... so I don't. 

I don't regret buzzing my hair off at the beginning though; it's nice not having to deal with hair maintenance (not that I ever did anything other than shampoo and dry anyway!) and I love all my soft Anoki scarves. Around the house I don't even bother wearing anything on my head, just when I go out anywhere. 

Hi Ladies,  just found this board and hope it is the right place for me.  I finished A/C in September and Taxol in January.  The A/C affected my heart.  When it was over, heart issues was controlled.  Then Herceptin was added to the Taxol, but could only handle about 7 Herceptin treatments because it had the same impact on my heart.   I finished 33 weeks rads in early March and just started Tamoxcifen. Now onc wants me to restart Herceptin every 3 wks to complete the 1 yr tx. protocol.    Cardiology just did an ECHO and will do another on 4/29 and get results before he gives his okay.   My taxol/Herceptin was not part of a trial.  My journey through it was nothing to speak of except for the joint pain and neuropathy in feet and hands.  The degree of discomfort and pain varies quite a bit. 

I just started Tamoxifen on March 25.   This early on, what symptoms (side effects) might I watch out for.  I've read that several of you have extreme mood swings.  What is this like?  Did the ms begin with   the Tamoxifen or not?  How do you handle them?