Hello to all you fellow sufferers . I send love to you all.
I was first disgnosed in Sep 2010. I am just back from the oncologist , where after a three month break from chemo. (Gemcitibine and treosulfan) and being only on avastin, my CA125 has gone up slowly. It is now 77 and my Oncologist feels the cancer is trying to start again, and the avastin isnt doing the trick. So back on the chemo. This time weekly taxol for 12weeks. feel absolutely gutted , I only got a three month break the first time and I was so hopeful with the Avastin. Can anyone tell me the same has happened to them and then they got a long remission after 3rd line treatment and any advice on the Taxol would be greatly appreciated. Will I loose my hair or does it just thin as the nurse has told me. Thankyou so much x
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Coco
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Hi Coco,Really sorry to hear that Avistan didn't work for you. I too have just had a reoccurance after 3 months and am just about to start on Taxol plus a trial drug. I had Taxol/carboplatin on my first line and did loose my hair, I did start to use the cooling cap initially but because my hair was thin anyway it didn't really help so I decided to just let it go, have got a couple of fantastic wigs So sorry to say but in all likelyhood you will loose you hair. As for other side effects, I was quite lucky and didn't really suffer very many, only fatigue really but everyone is different. Good luck and let me know how you get on with weekly Taxol, am not sure when I will start the trial but will blog about it when I do.
So sorry to hear that things are not going as you would hope at the moment. I have no words of advice, just to say it may help you to ring the nurse helpline on 0845 371 0554. They have so much experience of treatment outcomes and options and should be able to let you know what you might expect to find. They have had so much experience, some of it personally.
Just come back on here and let us know how things are going with you. Have a rant, share a triumph, ask a question, you will always get brilliant support from the women on here.
I did read recently about weekly taxol. The idea is that cancer cells are at their most prolific in the very early stages so by having weekly taxol the idea is that they will be stopped in their tracks whilst they're just buds and this is thought to lead to a longer remission. It seems a reasonable theory. I really hope this works for you. There's also the Rotterdam Regime which involves weekly Taxol with one other. That seems to have had good responses too.
I'm really sorry Avastin didn't work for you. Was this part of a trial? There seem to be very different reactions to this drug.
I'm afraid with taxol you will lose your hair. I should have had it last year and was given the pamphlet on it. Carbo-platin doesn't affect the hair at all. It's good to hear that Tess didn't suffer too much with side-effects from Taxol. I think each one of us is different. I do think it's worth trying the weekly Taxol to see how that works for you.
I'm sending my best wishes and hope the new regime is the one for you.
Thankyou for your reply. I was not on a trial for Avastin , but I only got to have it twice before my oncologist made the decision it wasnt doing what it can be capable of. He too is of very mixed opinions of this drug and says it works for some but not others.
Guess by reading all the replies, further hair loss is inevitable so another wig I will have to buy!! Nover mind its worth it, if it works .
Love to you and thankyou xx
Hi Coco
I had weekly taxol last August for 18 weks. It was my 5th line chemo! The first 3 treatment lines got me into remission for a while but still came back 4th line was oral and no remission. In August my ca125 was 4000 and came down to 380 by December.I will never bein remission now so was very pleased with result.
Side effectsTaxol does cause hair loss.
Used cool cap, hair did thin but only slightly and soon thickend up
No nausea or appetite loss
Tiredness was minimal
Some peripheral neuropathy but not enough to reduce or stop chemo. And it is almost back to normal now. I know some on taxol have bad pain but I didn't.
Felt that I was always at the hospital which was hard at timesBut that was minor and what we wont do to get ourselves better!
It ws worth it I think and recovered quite well with energy
Sadly ca 125 rose again after 5 months but only to 1000 used to throw a wobbly once when it went from11 to 16!!! Starting on my 6th line shortly. Carboplatin and Gemcitabine this time.
Good luck with the weekly taxol
Love
Suex
Just to say I'm sorry you're having to face this and hoping things go well with the new treatment.
I'm so sorry to hear your news. I just wanted to add I find this all very confusing: my CA125 also has risen over the last few blood tests (from 26 to 41 to 47) but following a scan which shows no changes since last November when I had the first check up after my chemo treatment was completed, my oncologist refuses to put me through further chemo and has put me back on a 3 monthly check up cycle. She says if the cancer shows signs of returning I may be a candidate for the hormone therapy (I'm strongly oestrogen receptive) but otherwise I'm to listen to my body and come back if I feel things aren't right. I know we all have different types of OC and also are at varying stages, (I'm stage 4) but I do find the different approaches difficult to follow - how do I know they are doing all they can for me?
So sorry you have had such a short period of remission! I thought I was unlucky when I only got 9 months last time! I am worried that, when mine comes back, they will be stuck for treatment. They won't give me taxol because of the nerve damage, I am allergic to carboplatin and cisplatin did not work! Avastin is only available for newly diagnosed in this area so will need to check up on Gemcitabine!
Good luck!
Margaret!
Dear Coco
Sorry to hear your news. I think the other ladies have said it all, but wanted to send love and hugs and hope everything goes well.
Sorry to hear you are needing further treatment so soon after your last chemo. We do know of some women who don't always loose their hair when they are having weekly Taxol so it is not always as inevitable as if you are having the bigger dose every three weeks. Do give us a ring at Ovacome if you want to discuss things
I have been receiving treatment since Oct 2008, like you i am 3c high i have finished 18 weeks of taxol 4th line of treatment in march.
I didn't lose my hair it just thinned a bit not to bad it was a lot easier than any of the other chemo, no nausea and energy was good but it didn't shrink my tumours or it hadn't spread i guess everyone is different (a picc line is great not getting used like a pin cushion twice a week)
My oc has now put me on letrozole hormone treatment i feel great on it plenty of energy i hope it works i also have a colostomy (which plays up a lot) i bought a Tommie tippee nappy disposal bin for the bathroom no more trips outside at night to the bin it is a god send.
Thank you for your reply and all you other wonderful ladies, your response and support is overwhelming.
Sounds like youve had a rough ride. I loved reading about your Tommie Tippee nappy disposal! Bless you. Reading most replies it looks like some hair thinning is inevitable, but I'm going to give the cold cap a go again. I have a port a cath so no need to worry about my veins.
Good luck with the letrozole and my thoughts are with you all.
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So sorry to say but in all likelyhood you will loose you hair. As for other side effects, I was quite lucky and didn't really suffer very many, only fatigue really but everyone is different. Good luck and let me know how you get on with weekly Taxol, am not sure when I will start the trial but will blog about it when I do. 
Chemo 5 put off and Taxol stopped 
Being positive
Wish I had put a whole lot of money on it!! Still, knew it was coming. Hey ho and here we go - again.
Chemo Advice Please
Finish weekly taxol on 20 th Dec
