Any experiences of the side effects of weekly taxol please? I’ve had taxotere during primary treatment and it really knocked me out with fatigue. Onc (who can be economical with truth) tells me weekly taxol is much better tolerated?? Any experiences?
I am nearly through 6 gemcarbo, though latest one delayed cause of neutrophils, despite neulasta, so whatever my next scan shows I’m taking a chemo break but weekly taxol looks like the next treatment.
Thanks…hope someone replies…when I asked about pegyylated doxuribycin no one did!"
Ive due my 2nd of weekly taxol today having 12 altogether, I also had taxotere 18 months ago, have to say last week suffered terrible aches and pains in my back (hubby had to dress me) so Im hoping that subsides, and fatigue aswell, been taking afternoon naps when needed! Thats all Ive got at the moment but will keep you posted!!!
Jane, I did four months of weekly taxol combined with carboplatin and it was not too bad really except for the last month when I was feeling really weak. But I tolerated it very well (I had done monthly taxol before and I did very well), I only had diarrhea sometimes, but I think it was due to the carboplatin mainly, and a bit of nausea. I worked most of the time and I didn’t have to get injections of G-CSF, my lymphocytes were OK.
By the way, I am triple negative too, with positive supraclavicular nodes at the moment, and I am taking an experimental drug (clinical trial phase 2) which is an inhibitor of a kinase (PI3K) which is often mutated in cancer, and, let’s say, always activated. I am in the third month, and at the moment two nodes are slightly reduced (2mm at the last scan) and the others are not growing. The drug is from Novartis, and they are doing this trial only here (Barcelona), in Huston (M.D. Anderson) and in Nevada. let me know if you like to have more information.
I am trying to remember in detail (not easy) but as far as I recall, I have to say that I found it extremely tiring, the effects being cumulative. I also had aching joints. These effects would happen for just a day or two per cycle and not necessarily every cycle. (I have always found chemo side-effects irregular and therefore not easy to plan around.) Hb levels regularly dropped and I had to postpone a few treatments. I did not reach the stage of needing a blood transfusion and being an NHS patient, Neulasta was not suggested. I was recommended to eat lots of iron-rich foods; liver, spinach, pulses etc. and to drink Guinness. As a long-term red-wine-drinking vegetarian, several of these options did not appeal! I also suffered some neuropathy in the soles/toes of my feet which still remains but really is not a problem. I lost a few toe nails as well. My little toe nails still fall off when they grow to any decent length. I did lose my hair (asked about cold cap, told - no point). Toward the end of the treatment I picked up the infamous Rhodococcus equii infection, which was the very worst thing that has happened to me in my three-year cancer ‘experience’. So be very careful to avoid infections.
I was on a trial (Will Weekly Win) to discern which option was best, 3-weekly or weekly. I don’t think the results are in yet.
Well, I hope you get a lovely summer break from chemo before this becomes anywhere near a need for you and hope you are surviving your current regime as well as can be expected.
Hi Jane
I did reply… posted this on March 11th, I assumed that you’d seen it!
“Pegylation” article on Wikipedia says:
“PEGylation is the a process of covalent attachment of poly(ethylene glycol) polymer chains to another molecule, normally a drug or therapeutic protein”.
Polyethylene glycol (it has its own WP article) has a low toxicity and is used in laxatives, skin creams (cetomacrogol), s*xual lubricants, toothpastes, eye drops and in the soft drink Dr Pepper.
Sorry Mrs Blue Yes I know you replied and I appreciated it but I didn’t really want to know the chemical process of pegylation (though it was interesting!). I wanted some people who had experience of having the drug!
Thanks Sue, sab and Jenny…your experiences don’t sound great to this chemo weary person! Until I have my CT scan I won’t know how much the taxol is needed…but right now I’m very ambivalent about taking any more at all…but thats because I feel reasonably well (ongoing chemo induced fatigue has become a real problem for me)
I had weekly Taxol last year for spread to supraclavicle nodes. I had 16 weekly treatments with Herceptin. i had EC x3 and Taxotere x6 when i was first diagnosed 4 years ago and found weekly Taxol much easier. Would have treatment Tuesday and worst day for fatigue was Thursday mainly spent lying in bed. Friday was a little better and by Saturday I was fine to enjoy the weekend. Missed one dose due to hand/foot syndrome but then had reduced dose and vit B6 and udder cream. Used the cold dap and hung onto my hair so by far my easiest chemotherapy. I am waiting to find out what my next chemotherapy will be as now have spread to the brain but think you should find Taxol easier especially weekly.
I had 18 weekly doses of Taxol (and 12 of Avastin) last year - 3 weeks on and 1 week off. I actually tolerated it very well until the last month or so. Carried on working throughout (reduced hours to about 16 a week half way through). Held my father in law’s 80th birthday at our house after the 3rd dose and coped with a party of 25 for the weekend (they didn’t all stay with us!!). Continued to walk 4-5 miles each weekend until the last month, and even climbed 2 Lakeland fells half way through (slowly). It really was only the last month or so that I felt very fatigued and (as I said) I still was able to keep on working.
Had nose bleeds but think these were due most probably to the Avastin, rather than the Taxol. Like Jenny I lost several toe nails and my finger nails also lifted (but didn’t fall off). Had some neuropathy in my fingers and toes as well (affected my balance slightly particularly when doing my yoga class!!) but now 5 months later, the fingers are fine and the toes are nearly better. Lost my hair but it started growing back about 2/3 of the way through, so now have quite a good head of hair again.
I found Taxol much easier to tolerate than the FEC I had 5 years ago - the fingernails were probably the worst thing for me and again they thought that might have been exascerbated by Avastin causing bleeding under the nail. Obviously we are all different but just wanted to say I found it very “do-able”.
I will be in a similar position to Jane later this year (hopefully after the summer) and will have weekly taxol. My onc told me it would be much easier to tolerate but having read the initial posts my heart sank. Now there’s been some more hopeful stories, it makes the thought of it a bit more bearable.
I was so bad on 3 weekly taxotere that I began to wonder if I would even go for the weekly taxol but knowing me and my determination to keep going I’m sure I will give it a go.
Thanks for the info
Kate
JUst to mention my oncologist said that weekly Taxol is just as effective as 3 weekly Taxotere which I found much harder so I think you will be fine with weekly Taxol.
Hi Jane RA and dippykate,
Just to add another positive story about weekly taxol. I had number 8 yesterday and have tolerated the last 8 weeks so much better than when on 6 cycles of 3 weekly FEC 5 years ago.
I have been able to keep working during the last 3 weeks (just 14 hours a week),playing badminton at least twice a week including the day after chemo each week(!).yoga classes and all my normal activities. The hardest thing is the short time between treatments - but that’s more psychological than anything else. I’ve been very well throughout on the whole. The tiredness does accumulate but nothing like I found on FEC and I still feel well enough today (day after week 8) to play badminton this evening. I’ve also kept my hair with the cold cap. I have daily nosebleeds but this is more like to be due to the Avastin I’m also on. Have had no nausea to speak of,have had a few aches and pains but this was only bad after the first dose and I still managed to drive into work and back,have had some ulcers and a little numbness and tingling in fingers but this has disappeared again. I don’t particularly enjoy feeling doped up on the pre-med and yet unable to sleep completely due to the steroids while having treatment but it does go pretty quickly (my taxol takes an hour)once you get into the flow!
I’ve just been so grateful to feel pretty “normal” throughout when it used to take me so long to even manage to get dressed for up to a week after FEC.
We’re all different of course and I have had weeks when I just can’t face it but it’s amazing how you feel so much better when it’s over and the weeks do pass quicker than you think. I’ve now got at least 3 weeks off for a PET scan and holiday - I suspect I may have to do another 8 weeks of the same but I’m just looking forward to the break right now!!
I hope this may help.
Hi Girls,
I had weekly Taxol last summer too, and didn’t find it too bad at all. I’d started on FEC which was awful for sickness, in my case, and knocked out my blood count. I had the Taxol on mondays, and on about thurs/friday i felt a bit like I was wading through treacle. I didn’t have to go to bed though - just kept going with the odd nap in an armchair! I also had some aches and pains in my bones, some weeks, but i was on mega doses of neulasta so it may have been that. It gave me a bit of neuropathy in my feet, which just feels fuzzy esp when i get into a warm bath. I kept going, swimming and walking including climbing most of the way up Helvellyn! (What is it with taxol and the Lakes?). My hair began to grow back, but I lost it again when they put me back on a three-wekly dose.
I agree with others, it is quite hard psychologically going every week - you feel like you’re attached to the hospital with elastic.
Don’t worry - it’s really not that bad
all the best to you both, Jane and Kate
love Jacquie
just thought Id check in agian, the weekly taxols arent so bad now, week 4 this week, the worst thing is the muscle aches which are now not as bad as the first week I can dress myself again now!! walking the dogs is a bit of a struggle,I suppose its annoying more than anything else. No sickness and fatigue is pretty minimal, no afternoon naps for the past 2 weeks!! And cold cap is working a treat!
Anne - are you being given avastin along side taxol, Ive asked my onc about this combo and was told avastin isnt available, am I a victim of the dreaded post code lottery??? Any info would be great, so I can tackle him about it again.
Good to hear from you Sue…and that side effects manageable. I’m having a CT scan this week and hoping they will be OK enough to stay off chemo for a bit. Was knocked out be gemcarbo for 2 days again so pretty chemo weary.
I’ve also asked my onc about avastin (have private med insurance but not sure theyd pay anyway). Onc not that keen…and I’m not either cause I think the trial results aren’t impressive, but I mull over it as possibility.
Hi to all,
I have been on taxol with avastin since Feb had a scan 1st April and it showed 50 per cent shrinkagethat was after 6 tax and 4 avastin. I am due another scan 21st May. So will let you know if it is still working.
I had been pestering for avastin for over a year my onc backed me because my liver was in such a state and in his words it was sh t or bust time.
It is due before NICE again this July so fingers crossed they pass it. The drug company have capped the price so I hope this will help others to be treated. Some of us on this site are getting through NHS others are on trials and others throgh private health cover. My PCT would rather I shut up about it but I believe it should be available to all who will benefit. I wouldnt be here now if it wasnt for shouting about it and having a wonderful onc.
Sorry the typing is bad but I spent yesterday in chemo coma, if I can help any of you with avastin please get in touch.
I think its shocking that there are postcode lotteries and around any drugs…and hence that we can never be sure whether access to a particular drug is the rigth thing for us.
Really pleased you’ve had a good response and great the campaigning you’ve done.
My ambivalence is around the trail results in the US which don’t show overall survival advantage for avastin. One of the patoent campaigning groups in US which I really respect is also sceptical.
May change view when its shit or bust time for me.
Hi,
I have just had my 3rd weekly Taxol/Avastin. So far not too bad. It is definitely way better than the Taxotere and AC that I had together 6 years ago. There are times when I feel almost normal! I am no more tired than before I started the treatment - as all the pain was extremely tiring. Plus the pain is already a bit less, and the numbness/tingling in my left leg and foot that I was feeling due to the tumour in my spine, has also improved in the last week.
I have been swimming a couple of times in the last week, and to some parties ( outdoor to lessen the risk of infection!) and am definitely moving more normally.
So here’s hoping that it is doing the trick.
Penny