Topic: Trial Study XRP9881B-3001
Trial Study XRP9881B-3001
posted Thu, 31 Mar 2005 10:01AM
PamLockett
I have secondary breast cancer in my liver diagnosed last October. My original cancer was diagnosed in January 2003 when i had a mastectomy followed by ECMF and radiotherapy then Tamoxifen. Since October i had been on Taxotere weekly and 3 weekly Herceptin this had made good improvements and my quality of life was ok minimal side effects from chemo. End of January after a routine CT scan ny onc discovered the cancer had spread into my lungs, therefore a change of treatment he offered me this phase 3 trial which is a taxane analogue drug and i was randomised the trial drug. I had my first dose 3 weeks ago and had very bad side effects severe muscle and bone pains along with painful neuropathy. I need to make a decision by next Wednesday whether to attempt another dose at reduced level or come out the trial and try Capecitabine. Is anyone else in this trial or has any advice what to do? Trial nurse and onc very helpful but ultimately my decision, i had a terrible quality of life for 2 and1/2 weeks only now starting to feel normal again its tough for my daughter (11years) and husband and family looking on as well as me any help greatfully received.
(No Subject)
posted Fri, 01 Apr 2005 04:17PM
tonispice
Dear Pam,
I have not heard of the trial you have mentioned but I was diagnosed with secondaries on my lungs last september, I had six lots of taxotere over three weekly intervals. I have also been on herceptin since April 04 on three weekly intervals. I experienced severe aches and pains in my legs when taking the taxotere. I went to a registered herbalist after the 2nd infusion. She gave me a concoction of herbs to help me with all of the symptoms, they worked really well for me. Perhaps it might be worth thinking about some complementary therapy to help you through. I obtained details of complementary therapys from the Bristol cancer care helpline. I don't have the number but you can get it from their website. If I can be of any help do get in touch.
all the best Toni
Trial Study
posted Sun, 03 Apr 2005 12:36AM
Jemima
Poor you! I have no knowledge of the trial - I am about to try taxotere and I have had capecitabine - but I do know that with some drugs the body reacts badly at first and then seems to adjust. I have to take a bone strengthening drug by infusion every 4 weeks. The first time I took this I had fevers of 104 degrees arms and leg pain and breathing difficulties but the next time was much improved and now have no side effects at all!!! I just wonder if it might be worth giving it one more go! Tell you daughter maybe that you are going to give the drug one more try and you may not feel well for a week or so but thatit really isn't any better you might try something else. Remeber that she will benefit if it does work. Capecitabine did work for me with initially few side effects but eventually my hands and feet became so sore it was impossible to continue - but not everybody has this problem. You might be lucky. Good luck!!
Trial Study XRP9881B-3001
posted Wed, 06 Apr 2005 04:42PM
biker1
Hi Pam
I agree with Jemima. When I first had Taxotere 2 years ago, I felt as if I'd been booted around Anfield for the full 90 minutes and me as the ball. However, my second and third doses were much easily tolerated and not half as bad. When I started Herceptin similar side effects, but now 6 doses down the line its not half as bad.
If you can bite the bullet and take some good pain killers (Kapake are very good) give it a try, you've really got nothing to loose.
I would try anything personally.
Regards
Julie
thanks Toni Jemima and Julie
posted Thu, 07 Apr 2005 01:43AM
PamLockett
Had reduced dose of chemo yesterday we were at the hospital for 8 hours (QE in Birmingham) Found out at the moment only 2 other people in UK on trial they are in Nottingham 1 had very bad results blood wise and so is off the trail the other ok. Had bad reaction while adminitstering drug bright red shortness breath spinning room so had extra Dexamethasone so i'm now spinning off the ceiling and can't sleep also ended up on drip for 3 hours instead of 1! Come home with painkillers Voltarol 75 slow release and co dydramol amd oramorph i alreaydy had what's Kapake Julie? definitely thinking of contacting Bristol i have radiotherapy at local hospice which is wonderful. Fingers crossed and lots of prayers the pain won't be so bad this time.
thanks again Pam
P.S. there are other centres in the country registered for trial but no one on it yet.
Out of the trial!!
posted Wed, 18 May 2005 04:52PM
PamLockett
Well after 10 weeks of hell my consultant and I have decided that the trial has been too toxic and not produced any results at best the tumours are stable.
So I've got a couple of weeks off and i start on Capecitabine on 6th June along with Zometa infusions for the bone mets which were discovered in my baseline scan for the trial!
Any tips re capeciabine gratefully received.
I'm finding the reflexology at the hospice great they are all so wonderful there.
Keep on the battle my onc has just come back from ASCO today his comment not found anything new for me yet but he doesn't give up, but he's up to finding funding for all HER+ patients to have Herceptin with adjuvant treatment. He's a good guy.
Pam
(No Subject)
posted Tue, 12 Jul 2005 12:46PM
joke
Hi Pam,
I am new here and only just read these messages. I probably was 1 of the trial persones in Nottingham. Have liver mets. (biggest of 3 had grown from 1.5 to 4.4cm after 2 month stopping a 6 treatment taxotere regime) I choose for the trial as I hoped it would give me an extra treatment option for my obviously rapid growing mets. Unfortunately I got the cap.tablets, although reading the experiences here of the trial drug I am not so sure anymore since taxotere was a bit of a nightmare aswell.
However having said that the tablets didn't do anything for me. The result of the Ctscan after the 2nd cycle was the biggest nodule had grown to 6.2 cm and 4 more nodules had appeared. Tumor marker I found out later risen from 110 to 1600. Do't let this put you of the tablets. As you are a regular poster on this website you now that everyone is different. Good luck with your treatment.
(No Subject)
posted Tue, 12 Jul 2005 05:20PM
PamLockett
Hi
thanks for posting sorry Capecitabine didn't work for you I'll have scan after the 3rd cycle on 2nd week of second cycle at mo. i have a lot of mets in liver but they have managed to stay reasonably stable since beginning of year having shrunk on taxotere. hope new treatment works for you i think it's probably next port of call for me if we can't get these blasted mets shrunk.
nottingham is dear to my heart my grandma was born in the meadowsand I went to Trent Poly our best friends live in West Bridgford and we're all off to France in August don't think I'll be consuming the amount of wine i did last summer!! hurts my liver too much.
All the best to you
Pam