Hi everyone,
I have made the decision to accept FCR arm of trial even though I'd hoped for Ibrutinib. I'm 46 , mutated and have been w and w for five years. I've 5 days till my treatment starts and to be honest I'm up the walls even though I know I know I could get a good long remission.
Anyone got any advice or reassuring comments about the whole FCR thing? My haematologist about frightened me to death yesterday about all the things that could go wrong. HELP!
All the best for your treatment, I've had some pants moments during treatment and I've been pants at handling some of it. Nothing life threatening, just a bit hard going at times. Between those moments I did feel better and wouldn't have made a different decision. I'm very grateful to be treated.
Lots of lovely people to help you if you need it.
Nic
Thank you Nic.
Hi Kenn.
Been 4 years since my FCR and you left a kind comment on my post. The good news is you will be rejuvenated by the treatment. The bad news is that I guess you are a victim of the government's cuts to blood cancer funding if you are in the UK?
My remission I think is coming to an end unfortunately. Next month's bloods will confirm. I hope to push for a stem cell transplant if this is the case.
Stay calm, it's a painless exercise. Be positive. Nobody can tell you you will be fine because you have been told and read that may not be the case. In my time at the Marsden I watched hundreds of people have various blood cancer treatments without any problems at all, apart from my own minor mishap. I can assure you that FCR although not the gold standard anymore, should give you a massive kick start to your life again.
Very best of luck mate.
Thanks Marc. Hope all goes well with you. I'm being treated up in Scotland and yes it is so upsetting to think people in other countries have better access to drugs but actually after reading the Anderson Centre FCR update I feel I probably am doing the right thing. I just hate the thought of putting all that stuff in my poor body. Thanks for your post. Found it comforting and really hope you do well on whatever new treatment you start.
Lorna
I was treated with FCR in 2nd half of 2012. Pretty uneventful and definite improvements in quality of life even after first / second cycles. Looks like remission slipping away now based on last two results. Serious discussion coming in December checkup. I have been really pleased with the FCR results, whilst obviously not your preferred option it is still a good option and some get many years out of it. I did not find the regime hard and the only mishap was a panic and night in hospital, caused by my electronic thermometer reading 1C high (that is a false alarm).
Hoping for the best for you, rob
Thank you for that.
Hi! Keep positive! Just finished round 4 and , like everyone else, chemo can be yucky BUT for 3 weeks of the month or can be ok. Make sure you rest. . Make sure you get out for plenty of walks... see friends. . Hsve some goals. ..I've been painting furniture. .. and look to a bright future! Read the books you've always wanted to and watch the films... Come on! We can do this!!!!!
Here with you. I've 2 more to go... Let's do it!!! Xxxx
Best of luck to you and please share your experience as my husband is 41 and likely about to do the same. We nearly started FCR once already and decided (and convinced our dr) we wanted to wait a bit longer.
Like Bethan49, I was ok for 3 weeks of each cycle. Drink lots of water, my experience would have been better if I had. I did find each cycle more difficult than the previous - not sure if it was psychological though and just wanting to get the week over and done with. i have been in remission for 6 and a half years and FCR was the treatment of choice at that time. At 41 yrs when I had the treatment, hopefully it will do the trick for a while yet and give me some options when the time comes for further treatment.
That's great news. I hope you'll get many more years in remission. Will drink lots of water.
Hi I too ended up on the FCR arm of Flair. Initially disappointed but hopeful for results. I finished in July, had a couple of hospital admissions but nothing to serious. Wasn't great from day 3 of treatment into the following week.
Sickness was my main problem and it took a while to get the right med for that. My advice would be to contact your unit earlier than I did to say it is a problem. However I get the impression that not everybody gets this.
I did have low times during treatment but to be expected I think. My local Maggies centre helped with the emotional stuff
I am now 12 weeks past treatment and my CT scan of lymph nodes was good news. Now holding out for a good remission.
Thinking of you as you start. Looking back it seems to have been a quick 9 months.
Advice - use the phone numbers you are given if you have any worries or concerns. I was never made to feel like I was overreacting or a nuisance
Mags
Thanks Mags for the advice and good wishes.
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