Just got home yesterday from doing my scan in time for my oncologist to call telling me he was going to bring forward my scan to which I informed him I had just had it. Well apart from the disorganization, he wanted to know if I had heard from London - to which I had to reply no (will be calling them this morning). So his reply was at this point that he doesn't want me wandering the corridors feeling ill on Avastin waiting for news from London - so guess where I am off to this afternoon with a list of questions! I believe however at this point he will put me on weekly taxol - any of you out there on this regime and how is it going? From very apprehensive?
Love to you all.
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Shorty864
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But, if you remember, weekly Taxol is the basis of the DICE Trial.
I am on my sixth cycle of 3 weekly Taxol, followed by a rest week.
I had to have my dosage lowered by 25%, because I could not function after one week on it. Could not walk or eat.
After lowering the dosage, I fell into a pretty good rhythm, of taxol infusion days good, after the steroids, I could function really well for almost three days after.
I could shop, drive my car, meet people in cafe’s, etc.
Then came three days of extreme fatigue and breathlessness, but I could not tell if that was caused by the trial drug or the taxol having a late hitting effect.
I basically stay in bed on those days as the effort if walking around makes me feel like I might faint.
After three days of bed rest, I feel stronger for one day and try to get work done before the next infusion.
And I start over.
The rest week offers a chance to live almost normally.
You lose your hair again!
It’s worth it if it works, and it will to some extent.
So worth a try, especially as it might stop the ascites.
Thank you for your support and giving me the courage to fight on.
In fact part of journey is working out a good timetable around this horrible disease, so that it is not just a succession of hospital visits, infusions etc. and realizing there is also another life out there of enjoyment, which I have a feeling you have mastered to a point.
It is incredible how - what most people take for granted - much joy and independence my dear car gives me and when I consider myself not well enough to drive, how I really feel like an invalid.
I've had weekly taxol and tolerated it well. I had been worried because I have neuropathy in my feet caused by taxol during my initial treatment. Although the neuropathy increased slightly towards the end of treatment it wasn't a real problem. I've probably got used to numb feet.
My finger and toe nails did suffer though. Some went black and others discoloured. This took more than a year to heal. I understand wearing nail polish helps or using Evaux nail care. Evaux is expensive and I had some but not having any nail problems during Carbo / Taxol I stupidly decided not to use it. Complete hair loss.
Hope you get some news when you call London; these things sometimes take time but it's always possible there's been an administrative hiccough.
Thanks a lot Helen for some very useful information. I will no doubt use it as I will be on the weekly taxol unless the Avastin is still working. In order to be sure of this my oncologist wants to see if my thyroid is still working ok and also to see were my CA is to.
Still not heard from London and neither has my oncologist. Will give them another call tomorrow.
After I was turned down for a trial in London I waited 5 weeks - then , out of the blue, came the phone call that I was on a trial. Fingers crossed fir news soon.
Thank you very much. The trouble is that I am now off chemo and will not be having Avastin again so it is, as you know, a good time to start a trial, but our oncologist does not want me to wait too long without taking something. Maybe should contact the Royal Marsden again on the off chance they have something. My insurance offers me a chance to talk to an international team working together on ovarian cancer so I will see what they have to say - as we say "leave no stone unturned ". Love Anne XXX
Good Luck with your appointment, I have not had weekly Taxol but have read on here before that it is very tolerable. x
You are having a horrible time not knowing what’s going to you next.
I hope this helps, I have had two sessions of weekly taxol, each for 8 weeks. I was given half the dose of the first introduction to the drug. I have used the cold cap and kept my hair. I have had a few side effects like dropping blood levels and having to inject myself for a few days before the next chemo. I have found it easy to tolerate. We are all different but give it a try would be my suggestion.
As you say we are all so completely different, but I am hoping this will keep the wolf from the door and give me some quality time, as well as good weather to enjoy just going for a walk searching for wild flowers poking their heads out of the hedgerows looking for the sun - it has been such a horrible winter.
It would be lovely to keep my hair, you have tempted me.
Here's to next new battle for you, me and everyone else.
I am on weekly Taxol after nothing else would work--two trials and two cycles of two different chemos--kept progressing. Then started Taxol alone for one cycle (three weeks on, one week off)--tolerated it well, then they added Avastin and still tolerating it well. Some tingling in my fingers and toes on occasion, and some palpitations when I swim, but otherwise, I feel well and doing all activities I want to do. Wishing you luck and hoping minimal, if any, side effects for you!
I am hoping that taxol is going to do its stuff and hopefully my quality of life becomes better so that I can start exercising on a regular basis and also visit a few beautiful gardens now that spring is around the corner.
Wishing you all the very best with your combination of drugs. Love Anne XXX
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Celebrating 
Check out the article yesterday in the Daily Mail. This is very interesting and might be of help to some of us.
ON THE 9TH / SEPT I HAVE MY CT SCAN.
anyone become platinum resistant and on weekly taxol? 
