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-   -   Herceptin More Than 12 Months Out (https://her2support.org/vbulletin/showthread.php?t=20524)

*_Cynthia_* 07-06-2005 11:35 AM

Friends,

I really do welcome the information and advice this group has to offer.

I just got home from seeing an oncologist about receiving Herceptin. I was diagnosed 9/03, 4 nodes +, Her2 +++. I received CAF x6 (finished 4/04) plus the Walter Reed vaccine. The onc. is willing to give me the Herceptin, but he strongly suggests also getting Taxol with it. He said that studies show that the best results are when both are used in combination. Since I never had Taxol before, he thinks I would get the biggest bang for the buck by doing 12 weeks of Taxol (once per week) + weekly Herceptin. When the Taxol is done, we would then go to Herceptin once every three weeks. He said that he would give me Herceptin alone if I don't want to do chemo again and that could be just fine, though it is probably less good than the Taxol + Herceptin combo. Of course, I could also do nothing.

Ugh. The thought of doing Taxol when I am NED is pretty repugnant. I have worked so hard getting my hair back -- well I guess I don't have to tell you all about hair issues. Does anyone know if Taxol gives you the same bowling ball look as Adriamycin (sp?). I would greatly appreciate any input/advise you may wish to offer up.

Alaska Angel, I know that this is a scenario you have been asking about and I have now found one oncologist who agrees with you.

Thanks to you all and be well.

Cynthia

jojo 07-06-2005 12:09 PM

About the "bowling ball" issue: (hey, I like that nickname!)

I have taken Taxol before (neo-adjuvant), and found that I got mild side effects from weekly Taxol. But it did not cause any hair loss, in fact it was already starting to grow while I was on it, along with weekly Herceptin.

You are right, I have never heard of a combo of Herceptin & conventional chemo being administered for NED patients, unless in a trial. Your question is a good one!

Lisa 07-06-2005 04:57 PM

It IS true that Taxol combined with Herceptin is better than Herceptin alone if you have mets. But do you know whether you do or not? Perhaps the Bayer serum test should be done first to determine the Her2 level currently in your blood. (See topic on that).

As far as the hair thing, I've been on Taxol at two different times. I remember losing all my hair the first time including eyebrows, eyelashes, etc. and this time I was already bald from WBRadiation. The other body hair fell out, though. Not sure what you mean about bowling ball...completely bald? Since I had already lost it from A/C prior to Taxol in round one, and WBR prior to TAxol this time, I'm not the one to ask.

AHH, don't you just love these "nothing is black and white" decisions?

Love and light,

Lisa

Laurie S 07-06-2005 07:25 PM

I am doing 12 weekly taxol /herceptin, after finishing 4 dose dense AC. I was dx stage 2, 2 nodes pos - 3/21/05. My hair became extremly thin from the AC and I lost it all on my legs and arms, but kept my eyebrows and eyelashes. After 4 doses of the taxol/herceptin, I have not lost anymore of my hair on my head, and the hair on my legs and arms has grown back. I have had very few side effects. Some heart burn and fatigue, but nothing serious. The onc nurses told me about 50 % of patients lose their hair with the weekly taxol.
Good Luck!
Laurie

Christine-Oz 07-07-2005 02:35 AM

Very interesting Cynthia. It is all a guessing game at this stage. Chemo when you are NED seems to be drastic but there may be micro mets that you might knock on the head. I am in same boat but my onco said no chemo but i still am to investigate further. I don't even know if i will get offered Herceptin. I will be interested to hear your decision.
Christine

*_anne_* 07-07-2005 07:02 AM

Cynthia,

I am glad you are getting the Taxol + Herceptin. My mom had Taxol after AC and the little hair on her eyebrows + lashes fell off. She hated Taxol's muscle cramps but everyone is different. Go for it!
Anne

*_Judith_* 07-07-2005 07:51 PM

I had adjuvant Taxol this spring (no Herceptin; that will hopefully begin shortly). I did dose-dense (every two weeks) and did lose what hair I had left after AC (eyebrows, lashes, the works) but the other side effects were not bad. Regular Tylenol sufficed for the bone pain.

For whatever it's worth, to add to the chorus of people who are positive about doing Taxol, my onc has also said that all evidence points to a powerful synergy among all these drugs.


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