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chemo #5, no taxol today

Donswife48
Posts: 326
Joined: Nov 2015

I had good blood results yesterday, but doctor said no taxol today because of my feet.  He said he wanted to skip it today and see if the neuropathy gets better by next time.  I really begged him but he said it would not make a difference in my prognosis.  He also said the only other thing he would consider would be switching to taxatore  which I of course said NO.  When he asked why, I told him about the permanent hair loss, which he said he never heard of.  I trust my doctor, but I know you ladies are telling the truth about your side effects, fingernail loss (or almost) and permanent or spotty hair regrowth.  He also had me fill out an evaluation form for neuropathy with me listing all the problems and seveerity.  He said no cheating, and hopefully by next time I will have forgotten my answers I gave today and will answer them truthfully the next time.  He really stressed to tell the truth, so I guess he means business.  He said he didn't want to have to pull out the pins and big hammer!  So, it was a very short day in the infusion room, and I will hopefully not have any nerve pain?  this time.  Maybe wishful thinking.  I already told the chemo nurse I wanted the whole full dose of both next time.  Hugs Nancy

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

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

molimoli
Posts: 514
Joined: Aug 2014

Being able to voice your objections is key ingredient to making decisions which are your own.

In a lot of  cases ,the patient knows more about the disease and side effects of meds than the doctors.

vigilance is key, I hope  NED finds you soon.  stay strong .  Moli,

takingcontrol58
Posts: 261
Joined: Jan 2016

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

 

Donswife48
Posts: 326
Joined: Nov 2015

As far as I know, my hysterectomy and lymph node surgery removed all cancer.  I have not had any scans, my doctor said I will not be getting scans in the future either.  I have seem a small relief in my foot neuropathy since Wednesday, and today I could walk, instead of shuffling and hugging the walls.  And so far, I haven't had the nerve pain after chemo that I've had in the past.  I think I can attribute that to the taxol.  I will ask about Abraxne, however, the next time will be my final 6th treatment so if the neuropathy continues to get better, I'll probably go along with the flow with taxol.  I do plan on asking to go on metformin after chemo, because I'm border line high glucose, 101 non fasting on my last blood test, so I think I could qualify.  I appreciate your suggestions amd a,m so glad that you are doing well with your current health care.  Hugs Nancy

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

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

Donswife48
Posts: 326
Joined: Nov 2015

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

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

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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

bluehyacinth
Posts: 48
Joined: Feb 2016

I skipped taxol altogether because of the neuropathy mpotential and am on Carboplating and Liposomal Doxurubicin and have had very few side effect. Stage 3C grade 3 with a serous ovary.

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