Taxol survey

mjdp2 · May 2001

Am wondering how many of you ladies still have tingling in your hands and feet (peripheral neuropathy) or pain 18 months after your last infusion? Most of you are newly diagnosed and Taxol preceeded by 4 doses of Adriamycin and Cytoxan wasn't standardized treatment for early stage breast cancer until 5/98. I was one of the earlier recipients in 1998. My onco didn't suggest Taxotere as an alternative since it was a cousin drug. I believe it is the synthetic version of Taxol. Margaret

jeancmici · May 2001

Margaret - Taxol and Taxotere are both taxanes but Taxotere is a French drug - similar with some different side effects. I think it came into existence in 1999.

You can get the dates of each from google.com. I am exhausted today going back and forth in my mind - do I take it or not? - before I see the oncologist tom'w morning.

I won't have time to let responses to your survey affect my decision. :-(

Jean

jeancmici · May 2001

Taxol (paclitaxel) injection, from Bristol-Myers Squibb, received additional approval on October 25, 1999 for adjuvant treatment of node-positive breast cancer administered sequentially to standard doxorubicin-containing combination chemotherapy. In the clinical trial, there was an overall favorable effect on disease-free and overall survival in the total population of patients with receptor-positive and receptor-negative tumors, but the BENEFIT has been specifically demonstrated by available data (median follow up 30 months) ONLY in the patients with estrogen and progesterone receptor NEGATIVE tumors.

Taxotere (docetaxel) injection concentrate (20 mg and 80 mg) by Rhone-Poulenc Rorer received additional approval on June 22, 1998 for the treatment of patients with locally advanced or metastatic breast cancer after failure of prior chemotherapy.

Taxotere (docetaxel) from Rhone-Poulenc Rorer, received approval on May 14, 1996 for the treatment of locally advanced or metastatic breast cancer which has progressed during anthracycline-based treatment or relapsed during anthracycline-based adjuvant therapy.

Xeloda (capecitabine) tablets by Hoffman-La Roche received accelerated approval on April 30, 1998 for treatment of patients with metastatic breast cancer resistant to both paclitaxel and an anthracycline containing chemotherapy regimen or resistant to paclitaxel and for whom further anthracycline therapy may be contraindicated, e.g., patients who have received cumulative doses of 400 mg/m2 of doxorubicin or doxorubicin equivalents.

Quoted (cut and pasted) from the website www.fda.gov
The few words in capitals are mine for emphasis.

Jean

jeancmici · May 2001

One more item -
Margaret,
You must have been in a clinical trial.
Jean

cherdaetwyler · May 2001

(both taxol and taxotere are naturally derived from natural source. the difference lies in the method of extraction.

The problems that come from taxol come as much from the camphor used in processing which stays in the final product as with the essentially poisonous nature of the taxus plant from which they derive it.

Unfortunately I will not reach your 18 month post infusion until 10/2002.

What really worries me is the way it comes and goes. yesterday I only had pain in one forefinger at the radi oncologists but this morning all toes and heels are in extreme state of feiry pain and the tingle has spread back to all my fingers. I haven't tried to do buttons but last friday I couldn't get my button tight to neckline nightie off until my husband came to the rescue when he got home...I ran around doing errands in a long sleeved turtleneck and jeans with nightie tucked inside until then.

good luck with your search. There don't seem to be many people who come to this site who are longer term survivors...it is as if they don't want to deal with us.

luve, hugs and prayers for the success of your survey, cher

mjdp2 · May 2001

jeancmici said:
One more item -
Margaret,
You must have been in a clinical trial.
Jean

I wasn't in the clinical trial (which had 3,000 early stage patients in it) but the findings were discussed at the Am. Soc. of Clinical Oncologists in May 1998 so since I was diagnosed soon after the conference I was put on the A/C Taxol regimen. Since 5% had pain and neuropathy that means there were about 150 who might have had to cut their treatment short. Just wondering if those 150 ever got back to "normal". Thanks for the FDA info on Taxol. I wasn't aware that it showed a higher benefit for estrogen negative people as I am estrogen receptor positive. Margaret

jeancmici · May 2001

Well, I should have gone with my gut feeling. After acknowledging that I would probably be all right with just the four AC, I posted that the onco convinced me that I owed it to myself to give the taxol a try.

Well, it's too late to undo !! The pain began in my lower legs - knees to feet but quickly concentrated in my ankles to heels/soles. I can barely walk and wonder what next. I know I won't try the second treatment and am so sorry I let him persuade me to do 'just one' to find out my reaction.

When one lives alone, painful nights are really long!

Jean

nancys · May 2001

jeancmici said:
Well, I should have gone with my gut feeling. After acknowledging that I would probably be all right with just the four AC, I posted that the onco convinced me that I owed it to myself to give the taxol a try.

Well, it's too late to undo !! The pain began in my lower legs - knees to feet but quickly concentrated in my ankles to heels/soles. I can barely walk and wonder what next. I know I won't try the second treatment and am so sorry I let him persuade me to do 'just one' to find out my reaction.

When one lives alone, painful nights are really long!

Jean

Good Morning Jean and I hope it is a good morning for you. Your Taxol treatment was last Friday and I think you will feel better starting tomorrow. Today should be a little better than yesterday. So sorry that it hit you so hard, I prayed that you would tolerate it well. I read the article about Suzanne Summers in People mag yesterday while waiting for my radiation treatment. It is a little vague about lymph node involvement. It sounds like maybe she had the sentinel node check, and there was no spread to the sentinel node. The article calls cancer a criminal...a good description of this beast. Hope for a more comfortable day for you my friend. Love, Nancy

jeancmici · May 2001

nancys said:
Good Morning Jean and I hope it is a good morning for you. Your Taxol treatment was last Friday and I think you will feel better starting tomorrow. Today should be a little better than yesterday. So sorry that it hit you so hard, I prayed that you would tolerate it well. I read the article about Suzanne Summers in People mag yesterday while waiting for my radiation treatment. It is a little vague about lymph node involvement. It sounds like maybe she had the sentinel node check, and there was no spread to the sentinel node. The article calls cancer a criminal...a good description of this beast. Hope for a more comfortable day for you my friend. Love, Nancy

Hi Nancy,

"Hope springs eternal" as the saying goes! My feet are a little better today - enough better that- you guessed it, I'm sure- I'm weighing another treatment. Yesterday was a really tough day. Thanks for your words of encouragement.

Love, Jean

nhornb · April 2002

jeancmici said:
Well, I should have gone with my gut feeling. After acknowledging that I would probably be all right with just the four AC, I posted that the onco convinced me that I owed it to myself to give the taxol a try.

Well, it's too late to undo !! The pain began in my lower legs - knees to feet but quickly concentrated in my ankles to heels/soles. I can barely walk and wonder what next. I know I won't try the second treatment and am so sorry I let him persuade me to do 'just one' to find out my reaction.

When one lives alone, painful nights are really long!

Jean

I am sorry I did not find this site sooner, I see this was posted in may of last year. so I am sure you have your answers to taxol. I have been off it for 14 months and the pain is servere. I live off of percocet. and nerve medications. I hope you are well.

IvyP · February 2003

nhornb said:
I am sorry I did not find this site sooner, I see this was posted in may of last year. so I am sure you have your answers to taxol. I have been off it for 14 months and the pain is servere. I live off of percocet. and nerve medications. I hope you are well.

My cancer was Fallopian Tube, but I also had four treatments of Taxol before the neuropathy got so bad and was switched to Taxotere. My last Taxol treatment was November 4, 2002. I still have numbness, tingling and pain, which is worse at times. I take Tylenol #3 for the pain. I am allergic to most pain meds. I keep praying that someone will come up with a solution. Best wishes to every one fighting this "beast". Ivy

DianaF · March 2003

IvyP said:
My cancer was Fallopian Tube, but I also had four treatments of Taxol before the neuropathy got so bad and was switched to Taxotere. My last Taxol treatment was November 4, 2002. I still have numbness, tingling and pain, which is worse at times. I take Tylenol #3 for the pain. I am allergic to most pain meds. I keep praying that someone will come up with a solution. Best wishes to every one fighting this "beast". Ivy

I have been searching for someone who has also had fallopian tube cancer, and happened on the "Taxol survey" discussion. I had six cycles of paclitaxil and carboplatin, last treatment in August, 2002, and haven't had any problems with neuropathy; no pain, numbness, tingling. I think I recall having a bit of that during treatment though. Now I feel very lucky that I didn't have any neuropathy and I hope everyone who has had that is getting better as you get farther away from the last treatment! Best wishes to all!

charlotteftca · March 2003

IvyP said:
My cancer was Fallopian Tube, but I also had four treatments of Taxol before the neuropathy got so bad and was switched to Taxotere. My last Taxol treatment was November 4, 2002. I still have numbness, tingling and pain, which is worse at times. I take Tylenol #3 for the pain. I am allergic to most pain meds. I keep praying that someone will come up with a solution. Best wishes to every one fighting this "beast". Ivy

My cancer was Fallopian tube and I had Taxol/ Carboplatin with the side effect of neuropathy. I am now 15 months past chemo and my neuropathy is almost completely gone. It took about 9 months before I could see signs that the pain in my feet and legs began to lessen. Unfortunately, today I found out I have a metastatic leison on my liver. Any other Fallopian Tube survivors out there? We're few and far between. Charlotteftca

DianaF · July 2003

charlotteftca said:
My cancer was Fallopian tube and I had Taxol/ Carboplatin with the side effect of neuropathy. I am now 15 months past chemo and my neuropathy is almost completely gone. It took about 9 months before I could see signs that the pain in my feet and legs began to lessen. Unfortunately, today I found out I have a metastatic leison on my liver. Any other Fallopian Tube survivors out there? We're few and far between. Charlotteftca

Hi Charlotte,
I hope you are still checking back to this site (I do every now and then), because I noticed your post was from way back in March.
I also had fallopian tube cancer, stage II, and am 11 months past chemo. I was very happy to find your post, because, yes, we fallopian tube cancer survivors are very rare indeed.
You said you had a lesion on your liver. How are you doing? I hope things are alright.
I will be thinking of you...and hope you will reply and let me know how you are.
Best wishes,
Diana

IvyP · September 2003

charlotteftca said:
My cancer was Fallopian tube and I had Taxol/ Carboplatin with the side effect of neuropathy. I am now 15 months past chemo and my neuropathy is almost completely gone. It took about 9 months before I could see signs that the pain in my feet and legs began to lessen. Unfortunately, today I found out I have a metastatic leison on my liver. Any other Fallopian Tube survivors out there? We're few and far between. Charlotteftca

Hi Charlotte, I just noticed your message and am wondering how you are doing. I am 10 months out from last taxol treatment, but had last Taxotere treatment in January. I still have some problems with weakness in my lower legs, tingling, tenderness and pain in my feet, also numbness and loss of fine motor dexterity in finger tips. Would like to know how you are doing.
Ivy

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