Hi guys, I have just finished FCR chemo 4 of 6. Every chemo has knocked me sideways on the 5 days i take "c+r" but the sickness has just got worse and worse. It was thought i would only have 4 sessions as treatment has gone so well but they now want me to complete the 6 as its hoped it will make me MRD negative. They have tried a few anti-sickness combinations of Metoclopramide, Ondandestron & Lorazepam but it doesnt really seem to do a lot. I just feel constantly sick and am sick most mornings the minute i get out of bed.I dont mind the fact that chemo floors me for 5 days i just wish i wasnt so sick.
Has anybody else had this or found a better combination?
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grizzlebear
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Hi sorry to hear how you feel, I know what you are going through as I too was very sick. Once I had a couple of nights in hospital to be stablised and once was stablised on the day ward. I had all of the above anti sickness tables but asked for something else as these were not combating the sickness. My CLL specialist at a London teaching hospital could not then prescribe the next set I was given because they were so expensive but requested and received permission to prescribe them. Sorry I do not know their name but you had to take one two hrs before chemo then another tablet for two days these really seemed to work. Also as well as tablets I was given suppositories which were helpful when I could not take anything orally. Good luck and best wishes
I finished my 6 FCR cycles in February and now feel absolutely great. However my reactions to the drugs got more and more unpleasant. I had the same anti sickness drugs but at #4 I changed metachlopromide for a drug called cyclizine and that made a big difference sickness wise. Ask to try it, and I would agree with doing the full 6 cycles, it put me in full remission.
Sorry to hear you are struggling. I have completed 5 cycles of FCR and not suffered sickness. I have only taken Ondansetron for the duration of the 5 days of each treatment. Prescibed Domperidon as well to take as and when but not needed to take it. This is yet another example of how the disease and treatment affect us on an individual basis with there not really being what might be termed usual experiences. Sorry I cannot help but hope you find a solution.
Your posts resonate so much with my recent experience, even though I'm (just) on the other side of the great chemo divide now...
I empathize so much with your nausea problems, and the indescribable misery they add to an otherwise generally manageable (if not entirely enjoyable) experience. I was on exactly the same combination of anti-emetics as you, with the same response really - i.e., they didn't keep the nausea at bay for me.
I posted a very similar question to yours at the beginning of my treatment, and got some incredibly useful and supportive responses. Cyclizine (already suggested by Sparkio) and nozinan were suggestions that I didn't try out myself. I suggested nozinan to my consultant, but there seemed to be an issue with getting it in tablet form in my HCT - maybe that won't be the case at your hospital. It tends to be used in palliative settings, but it seems as if it is being used as an extra weapon in the armory against nausea for chemo patients not responding to the usual drugs.
It contains so much excellent advice and support from those that have struggled with nausea and chemo. It could do with being re-titled and pinned really...
Keep on trucking - it's definitely worth aiming for MRD negativity. If you need motivation, have a read of this paper - Minimal Residual Disease Quantification Is an Independent Predictor of Progression-Free and Overall Survival in Chronic Lymphocytic Leukemia: A Multivariate Analysis From the Randomized GCLLSG CLL8 Trial (snappy title) especially the abstract and conclusion (Bottcher et al, 2012) jco.ascopubs.org/content/30...
Jules, you should be able to edit the title of any of your posts/questions. If not, I can update the title to what you want. Pinning is more problematic however in that we do want to keep the pinned posts in approximate order of interest to everyone and there is no way we can currently order pinned posts. Newly pinned posts bump all the rest down This topic of nausea control definitely deserves a pinned post and your old post evolved into good coverage of that so let's see what we can do...
Cheers Neil - not trying to promote my own postings, but I think the responses to this one provide a rich wealth of experience and advice on a subject that comes up over and over again for current members...just wondering if updating the title to something like 'FCR side effects: nausea control' and pinning it somehow/somewhere (without particular hierarchical preference but with acknowledgement of its ongoing relevance to members) might be useful?
Just thinking as I write ...The other option of course might be to pin Grizzlebear's more recent post as it has a more relevant title to the nausea/FCR issue, and also now contains my link to the previous thread anyway
I also could nt get on with the three anti-sickness drugs used for chemo 1-3. Then I was swapped to Domperidon ( sounds a bit like the champagne!) and it's definitely an improvement.
Also try Travel Bands from the chemist. They are wrist bands that press on the acupuncture point for nausea -travel sickness, pregnancy sickness, chemo and they give them out in the navy for sea sickness. I don't take them off for the entire 6 months of chemo. My GP says they don't work for 10% of people but that still leaves the other 90% that it does.
Sorry to hear about your sickness. I had FCR chemo and was given Granisetron (Kytril) to combat the sickness. In fact I never suffered any nausea at all during the whole six cycles.
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This topic of nausea control definitely deserves a pinned post and your old post evolved into good coverage of that so let's see what we can do...
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