chemo #5, no taxol today

I'm sorry, Nancy, but at least your doctor cares about you!!  Mine didn't give two hoots in hell about me.  Taxotere is SUPPOSED to produce less neuropathy but I'd hate to see what taxol would have done to me.  As of December 2015, the FDA ordered the maker of Taxotere to put the warning about permanent hair loss on their label.  When I was at the doctor yesterday, my PA told me she has another woman who also lost all her fingernails on Taxotere (like me), so I'm not the only one.

http://trofire.com/2016/03/08/taxotere-medical-lawsuit-issues-current-facts-assistance/

I'm thinking once women see that warning, that will be the end of Taxotere especially if Taxol is just as effective.

I'm hoping for the best for you!!!  (((Nancy)))

Love,

Eldri

Nancy,

If you have neuropathy issues, you should try a supplement called Alpha Lipoic Acid (Jarrow is the brand I use). It was
prescribed by my integrative oncologist.  It helps repair your nerves which chemodestroys. I have only very minor neuropathy
in my left toes every now and then, and consider myself very fortunate when I read about all the women suffering from serious
neuropathy.  My  husband started taking the supplement for his neuropathy and he says it has done wonders for him.

I don't understand why these doctors don't try to help you solve the problem.  Perhaps you should meet with a naturopath
or integrative oncologist (who practices regular oncology plus uses complementary medicine), who understands what supplements
you can take along with chemo.

You might also ask you doctor about Abraxane. It is a newer version of Taxol that is given weekly. It is ususally given to
people who are allergic to Taxol.  Perhaps you wouldn't have such bad side effects if you got lower doses weekly.

Please listen to your body- it is trying to tell you something- perhaps you should take a chemo break. Do you actually
have a tumor/tumors left?  I stopped chemo and still had 2cm of tumors. Then I was NED 3 months later. I'm the
woman on metformin.

Maybe you want to stop chemo until your next CT scan then decide if you need to continue the chemo.
You have lots of options.

Regards,
Takingcontrol58

Nancy I completely understand your reluctance to use taxotere, but what does your doctor think you should do? By the way, I believe your doctor may be a little disingenuous when he says he never heard of the hair loss problem! I see references going back ten years to that very possibility. Too bad I didn't research this way back when.

I did switch to taxotare for my final 3 treatments due to progressing peripheral neuropathy. The neuropathy diminished slowly, very slowly, when I made the switch. But, once I completed treatment and my hair started to grow back it was much thinner than it was previously. It's been almost 2 years since I completed chemo and my hair is still very thin. I had planned to leave it white but decided to dye it brown again as it looks less thin. I guess vanity overcame my reluctance to use chemical products on my head!

Am I happy about my hair? Of course not! Am I happy that I am still NED? You bet. If I had known about the possibility then, I think I would still have taken the chance, although I would have liked to have been informed of the possibility as well as the pros and cons of available alternatives.Why Did I switch? Because that is what my doctor said would give me the best chance of beating UPSC and, so far, I have done so. Also, from what I've read, most people do not suffer the thinning or permanent hair loss.

So, I would suggest talking to your doctor about all the alternatives- staying on Taxol, switching to Taxotere, maybe some other treatment. Metformin sounds exciting and who knows what else maybe in the future. But, you need treatment now and your doctor should be able to let you know what he recommends and the pros and cons of the alternatives. We are all so frightened by our cancer diagnosis and tend to say yes to whatever the doctor recommends. Now you have a chance to make a more informed decision.

That is one reason why this board is so helpful. We can actually talk to others in the same situation and learn from each other. We have the benefit of the knowledge of all the other women on our site. Good luck, Sandy

unknown said:

I agree with this board

Yes, we all learn from each other.  I want to do the best I can do to keep this cancer from coming back or at least be stable.  And yes, I'd rather be NED with no hair, fingernails or even painful or numb feet than the other alternative.  At my chemo visit on Thursday, I was surprised when the chemo nurse came back after questioning me about how I was feeling, and said the doctor said we were going to skip the taxol this time to allow the neuropathy to not get worse.  We talked for a while about things, then she dropped her pen and it bounched on my foot.  She appologized then said I probably didn't feel it.  I told her YES, I can feel things, the feet aren't completely numb and asked her to plead my case to the doctor to continue taxol this time.  She went out and got him and we talked.  He said he recommended skipping taxol, but if I insisted he would try taxotore for this time.  We talked about that and then I said I would do whatever he decided would be the best.  With that he said to skip taxol, and if the neuropathy got better by next time, we would either continue the last chemo with taxol, or with taxotore.  And he stressed that skipping one treatment of taxol would not make a difference in my prognosis.  I can sometimes imagine reading things into what people say, and I hope he didn't mean that he expects the cancer to recur in the future and I will need more chemo then.  I only hope that he thinks that this adjuvant chemo will work.  I can't believe the difference no taxol has been.  This is day three, usually I can't eat, drink, have nerve pain.  Nothing so far.  I am walking better, I can tell that my feet feel more stable, I don't have as much balance issues.  So I'm planning on getting through #5 and on to #6 with both chemos in 3 weeks.  Hugs Nancy

Nancy, so glad this modified round was kinder to you. And, it sure sounds like that was the right thing to do. I can't imagine the doctor meant that you would have a recurrence either way. There are many women on this board that went through their therapy and are still NED today! I choose to believe that will be us too.

Enjoy the next three weeks and build your strength for the LAST ONE! How exciting for you. :-)

Love and Hugs,

Cindi

unknown said:

I agree with this board

Yes, we all learn from each other.  I want to do the best I can do to keep this cancer from coming back or at least be stable.  And yes, I'd rather be NED with no hair, fingernails or even painful or numb feet than the other alternative.  At my chemo visit on Thursday, I was surprised when the chemo nurse came back after questioning me about how I was feeling, and said the doctor said we were going to skip the taxol this time to allow the neuropathy to not get worse.  We talked for a while about things, then she dropped her pen and it bounched on my foot.  She appologized then said I probably didn't feel it.  I told her YES, I can feel things, the feet aren't completely numb and asked her to plead my case to the doctor to continue taxol this time.  She went out and got him and we talked.  He said he recommended skipping taxol, but if I insisted he would try taxotore for this time.  We talked about that and then I said I would do whatever he decided would be the best.  With that he said to skip taxol, and if the neuropathy got better by next time, we would either continue the last chemo with taxol, or with taxotore.  And he stressed that skipping one treatment of taxol would not make a difference in my prognosis.  I can sometimes imagine reading things into what people say, and I hope he didn't mean that he expects the cancer to recur in the future and I will need more chemo then.  I only hope that he thinks that this adjuvant chemo will work.  I can't believe the difference no taxol has been.  This is day three, usually I can't eat, drink, have nerve pain.  Nothing so far.  I am walking better, I can tell that my feet feel more stable, I don't have as much balance issues.  So I'm planning on getting through #5 and on to #6 with both chemos in 3 weeks.  Hugs Nancy

i find it so interesting how each of us has a different type of treatment, how there are so many differnt reactions and side effects to the same things.  It certainly does prove that we are a statistic of one.  Even though I had many rounds of Taxol and we had to lower the does several times because of the nuerpathy, it was the one that I was able to tolerate the best.  I had reactions to Carbo on treatments 13 and 15.  Taxol by itself on treatments 16 and 17 didn't work.  Tried Doxilrubicin liposome for 7 treatments.  It caused hand and foot syndrome that was worse than the nueropathy.  Fategue and stomach issues were also worse.  A tumor intwined itself in my small intestines resulting in a open bowel resection.  Tried a desentizing program for the Carbo and had another reaction to it.  Now trying Topotecan.  Hugs and prayers that we all get what works best for each of us.  Lou Ann