I feel really guilty posting a new question when I haven’t had time to catch up with everyone else’s news, but have an urgent query!
I saw my onc yesterday to talk about continuing my chemotherapy programme after completing ACx4. He has suggested that I continued with an accelerated schedule of ‘dose-dense’ Taxol - every 2 weeks rather than every 3…
Apparently it’s more effective at hammering cancer cells (1-2% increase on the 10-12% benefit) but is obviously a lot harder on the body. It would mean taking 8 daily doses of a drug to stimulate white blood cells which cause flu-like symptoms.
Does anyone have experience of an accelerated regimen? I haven’t read anything about 2-weekly cycles on the boards, I don’t think. I don’t know whether to go with it, get it over in 8 weeks, or give my body a slightly easier time and accept it’ll take 12 weeks.
HI Jane,
Yes i had accelerated chemo back in 2007/8 so 2 weekly cycles instead of 3 weekly, i had 4xEpi + 4x Xeloda so a bit different regime to yours. I was on the Tact2 trial which had 4 arms to it and we was randomly chosen by a computer at the Marsden and got arm 4 which was the accelerated regime.
There have been some studies to suggest that accelerated chemo works better so the trial was set up to compare different regimes. I also had the GCFS jabs but only a single jab the day after each Chemo ,the jabs are needed to get the white cells back up realy quickly in time for the next chemo as your body doesnt have so long to recover they are pretty expensive though ,i was told about a £1,000 each jab!.
The jabs were fine but did make me feel a bit fluey for a few days but was not too bad , like everything else though SEs can be different with everyone and some people find they are fine with them.
I found the 2 weekly regime ok , but because the chemo was every 2 weeks i didnt realy have a “good week” as by the time i was starting to feel better again it was time for the next chemo, but if the 2 weekly cycles do prove to work better than 3 weekly then its definately worth doing it.
Hope this helps a bit , i think there are a few ladies on BCC who have had accelerated chemo in the past so hopefully others will be along soon to share their expierence too.
Good luck with whatever you decide , i realy found it to be ok .
All the best
Linda x
I was on the same trial as Linda, the Tact 2 trial, and also had the accelerated regime.
I would second everything that she has already said. It was hard as you didn’t get a good week before it all started again but I found that the time flew and before I knew it I was done.
The GCFS jab didn’t bother me at all though. No side effects. Everyone’s different.
For what it’s worth I’m so glad that I was given the accelerated arm of the trial. I just wanted it over with as quickly as possible!
I guess, from the lack of response, and the fact you both had accelerated treatment as part of a trial, that it isn’t really standard in the UK. Seems more common in the US - no idea if that’s a good or bad thing.
I’m going to try the first two doses with a 2 week gap and the white-blood-cell stimulating drug. If it’s utterly utterly grim, I’ll ditch it and leave 3 weeks between 2 and 3!
I am on accelerated chemo too. Although I’m originally from the West Mids, I have been living in Cyprus for the last 3 and a half years and am having my treatment through the private medical system here.
I’m 44 and was diagnosed in late September and had a quadrantectomy and because of positive nodes had a axillary node clearance. My Oncologist suggested what he calls “dose dense” chemo firstly because of the positive nodes and secondly because I was relatively young and they do tend to throw everything they can at you.
My regime is 4 Adriamycin (the red stuff) and Cyclophosphamide, followed by 4 Tax, every two weeks. I am injecting the white cell booster every day from day 3 to day 9 and then having a blood test the following day to check my white cell count. I was a bit daunted about the self injecting initially but we live out in the sticks and it wasn’t practical to drive into Paphos every day. Not sure whether this is the practice in the UK but they do seem to be very tough here in Cyprus and just expect you get on with it!) The injections do cause some bone pain and I’ve had a lot of lower back and hip pain but it can be controlled with anti-inflammatories.
I’m due my second chemo dose tomorrow and although I’m still a bit unsure about what to expect, I don’t think I will really ever get a good week prior to the next dose. I started feeling more with it during the second half of the second week and have been reasonably OK over the weekend. The Oncologist said that side effects woulodn’t be any more severe whether they were given every 2 or 3 weeks. We shall have to see what tomorrow brings!
I think the idea behind the dose dense regime is that two weeks is really the optimum time to give another almighty chemo blast to any possible stray cancer cells that are knocking around before they have the third week where they can pick themselves up and start playing havoc again. It’s only since the white cell injections have been available that the two week pattern has been possible.
Good luck with whatever you decide. Personally I’m glad I’m doing this as I feel it’s giving me the optimum chance. I think it’s going to be tough but definitely worth it. Plus it will all be finished much quicker!
Karen, thank you so much for your reply. You’re the first person I’ve found on the same regime as me! Only I didn’t have the AC at two weekly intervals as I was pregnant, so couldn’t have the white-cell booster. But now I’m starting the Tax and no longer pregnant, it does seem like a good option to attempt to hammer those b*****d cells as effectively as possible.
Sorry to hear about the bone pain. I’d be interested to hear how you feel after the second treatment - is that AC you’re having at the moment? The only good thing is that I might lose some baby-weight if my ulcers never recover between doses… ok, clutching at straws to find a positive here!
Stay in touch, I’ll let you know how it goes for me. Oh and I’ve been told I’ll be injecting myself too, so seems it’s not just Cyprus.
xx Jane
Just wondered whether you had started your Tax and whether you’d decided on the two week thing or not. There is also another post on here from Sarah (Sazzie 217) (Starting chemo on 30th October) who is also seems to be doing a similar thing in the UK but privately, so hopefully she will read this.
Well the second AC was last Tuesday and I seem to have had worse side effects this time with more nausea and vomiting although the antisicknessness tablets did help and I also ended up spending a couple of days in bed as I felt so awful which I didn’t do after the first. Perhaps this would have happened anyway even if it was every 3 weeks and has nothing to do with it being every 2 weeks?? Feeling much better today though.
My injections worked well and as the white cell count was so good I’ve only had to do 6 injections this time instead of 7 (last one today!) Still got lots of back, hip and leg pain though but should improve by tomorrow.
Hair has now mainly disappeared although I do still have a bit of fluff hanging around so not sure if it’s all going to go. You wouldn’t believe the trouble I’m having getting scarves and hats over here. Cyprus shopping leaves a lot to be desired and as it’s 25 degrees with blue skies and sunshine at the moment we don’t really have a great deal of choice. There really isn’t the support for us over here, I have a surgeon and an oncologist and that’s about it and although they’ve been fantastic it would be nice to have a breast care or chemo nurse to talk to. I’ve yet to find anyone who supplies wigs for hair loss here and have had to resort to buying hats and scarves over the internet from the UK but they take about 3 weeks to get here.
You don’t realise how brown your face gets living in the sunshine when living out here until your hair falls out. I do look a bit strange with a ghostly white head and a very brown face!!!
On the whole I think we’re lucky to be offered this treatment and this isn’t something that you’d routinely get offered on the NHS. I think a lot of the problems is the cost. Over here the white cell injections are around £100.00 per shot so over all it’s an expensive business. Thank goodness we got private medical insurance!
Anyway I hope you’ve decided on what’s right for you and that everything goes well for you. Keep in touch and let me know how you get on.
I know what you mean about the white head!! Even in the UK the same applies - I’m fair and freckly but my god did those freckles stand out once I was bald! I looked as though I was wearing a mask. Unfortunately my hair has grown back really quickly and is now a thick covering (10 weeks without a treatment) so I’m having to prepare myself to lose it again.
I had the first Paclitaxel today And yes, I’m going for the 2-week cycle to see if I can cope! The nurse today said it’s quite recent, the 2-week thing, they’ve only been doing it for a matter of months. I have a supply of syringes in the fridge and if I can’t manage to stab myself with a needle, I have a vet-friend who will gladly do it for me! I just have to pretend to be a labrador
I hope you find enough scarves and hats to see you through the chemotherapy. Sorry to hear you’ve been so sick. I wonder if it would have been as bad with a 3-week gap…? If you’re on ly a week in and feeling better, that’s a good sign? Not looking forward to the bone ache. I have indigestion already - the nurse said that 20mg of steroids is a big dose and can iritate the stomach, so I guess that’s it. I only had 8mg with the AC.
Sorry to hear you don’t get much support in Cyprus. I do have a BCnurse but, to be honest, I never use her. I’ve rung her for results of pathology but other than that, I always feel the nurses are too busy to give any individual time. I suppose I get all my support from OH and here, ont he boards.
My hospital experience today was rather grim - there’s a big dose of Piriton and steroids wtih the Tax and when they were going in, I thought I’d be sick. Ugh, it was as though I’d been hit over the head with a large bat. The the Tax took 3.5hrs!
Good luck next Tuesday. I’ll let you know how the jabs go. that needle looks very long!
xxx Jane
don’t know if you’re around and reading but thought i’d let you know that i’m no longer having the accelerated regimen. unfortunately i’ve got neuropathy in fingers and toes and onc said we could either stop and they would almost certainly get better, or we could continue on reduced dose 3-weekly and hope they recover after treatment has finished. i want to continue.
i’m really disappointed as i’d got used to the idea of finishing mid-jan and i’d been visualising those cancer cells trying to get back up after 2 weeks only to be knocked down by another dose of evil drugs before they had the chance to recover…
hope you make it through to the end without too many problems.
Really sorry to hear that you’ve had problems with Taxol. I was talking to my Onc at my AC session and when I asked him how long the infusion would take he said about 3 and a half hours because if it goes through more quickly you can develop neuropathy. But yours was 3 and and a half and you’ve still had problems! He did say though that it can be put through over an even longer period, up to 24 hours apparently. Not sure if this is practical really but is it worth a thought? Is there any other drug that can be given in the same way?
I do think that the 2 week cycle is tough though and I’ve gradually got worse over each AC session and taking longer to recover, feeling nauseous for longer and much more tired. Perhaps it could be something to do with there being more chemo left in your body by the time of your next session whereas with 3 weeks you’ve had that extra week - who knows?? I’ve got my last AC next Tuesday.
I’m definitely not looking forward to the Taxol especially as I seem to be taking longer to recover and faced with the same symptoms I think I would do the same as you. It was something that you needed to try and it didn’t work and you can’t beat yourself up about it but I can understand how disappointed you must feel. Why is that these Oncologists try to half kill us just because we’re “young, tough and strong” I feel and look like I’ve aged 20 years in the last 2 months!
Really hope you can continue in whatever way you can Are you having any more treatment after radiotherapy. I’ve been told I’ll be on monthly Zoladex injections for 3 years after the rads. I think the Onc told me that at the beginning but I wasn’t listening!
Let me know how you get on and I’ll keep you posted with my Taxol experience in the New Year.
Hope you have a Happy Christmas with your lovely new baby.
Hi I have just joined this forum and noticed your post re accelerated treatment. I was scheduled for accelerated acx4 and taxol x4. I have had my first treatment and had to inject the day after treatment with Pegfilgrastim to raise my white cell count. I had no side effects from the injection at all. Unfortunately I did catch a very nasty cold and landed up in hospital running a temperature which has meant my next 2 chemo sessions will be 3 weeks appart instead of 2 weeks appart. I have spoken with my Onc and both he and I are very keen to get back to the accelerated treatment after that.
And yes, I’m going for the 2-week cycle to see if I can cope! The nurse today said it’s quite recent, the 2-week thing, they’ve only been doing it for a matter of months. I have a supply of syringes in the fridge and if I can’t manage to stab myself with a needle, I have a vet-friend who will gladly do it for me! I just have to pretend to be a labrador 