I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist was there in minutes, lowered my dose and I was able to complete the course over 6 hours without further adverse effects. Subsequent treatments (the next 4 months) were bendamustine and rituximab intravenous drips. No problems at all. The prognosis for bendamustine isn't as good as fludarabine - the likely effective period being 4 or 5 years as opposed to 15 years for fludarabine, but thats life.
Overall, the post treatment fatigue and brain fog was a surprise and not a good one. But I wasn't in pain. I often slept 10 to 15 hours a day with no energy whatsoever. But the worst part was getting covid while immune supressed. This just about killed me. Fever, brain fog and no appetite. I lost 35 kg.
But I'm through it. Out the other side and able to play with my grandchildren. Overall I'm grateful.
KiwiCanuck
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kiwiCanuck
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Thank you for sharing. You are going to be great my friend. My father went through both. Keep an eye on your blood count. you will gain back all the weight that you have lost.
As a US patient I had some other options, but I almost went the FCR route and it's still an option I think if my trial does not work out, so it's good to hear how these things go. Thanks for posting it.
Kiwi, I was happy to read you are through the treatment tunnel and feeling better.
The first doctor I saw wanted to start me on Bendustamine Rituxin (BR) treatment right away. I did a lot of looking into treatments and to my understanding BR gets an average remission of about 4 years and FCR averages in the 6 year range for median time to disease progression. Im not sure where you got a 15 year average length of remission for FCR. It is true that if we look at a subset of people taking FCR that those with mutated ighv can get 15 yrs or more of a remission. But I think when you look at the larger group of folks doing FCR for their cll, the average remission is only slightly better than BR.
To my understanding BR is a bit gentler treatment than FCR and was preferred treatment for older cll patients. My first doctor told me he used BR and that FCR was obsolete. Thats one of the reasons I left him early as that simply wasnt true. At my diagnosis 7 years ago FCR was the gold standard treatment for most all folks with cll. Ibrutinib was still in a lot of clinical trials and soon got approval. I ended up starting on ibrutinib, another reason I was right to fire my doctor. Had I gone straight to treatment from diagnosis, my choices were much more limited.
FCR remains the frontline treatment choice for cll patients in countries where BTK drugs are not readily available and for people who can tolerate it. It sounds like you and your doctor made the smart move, opting for the gentler BR treatment. For a lot of people, particularly those with unmutated ighv cll, FCR only gets you an extra year or two remission, on average, as compared to BR. Your number of over 15 year remissions with FCR probably only applies to folks with very favorable genetics. Indeed for a large % of folks with mutated ighv cll doing FCR, they are still remission free at 15 years and probably cured of Cll according to many doctors.
Hello! I am another 67 year old "KiwiCanuck". I was diagnosed in Ontario during 2009, but treated with 4 cycles of FCR ten years ago in NZ. I'm still in remission, so it's likely I'm IGVH mutated, but I have never been tested for it.
It was a shame you came down with Covid while so immune suppressed. I hope you put the weight back on soon.
Thank you for sharing your experience. I am glad that you made it through both BR treatment and COVID. Hopefully it will be smooth sailing for you for a while now.
I did four months of FCR, but had to stop because it lowered my blood counts drastically. I have been in remission now for almost 6 years though. Who knows how long this will last for me now?
Sounds like you are on the mend. B+R worked for me but unsurprisingly only lasted about 4 year remission due to unmutated. I was asked if I would consider taking another run with B+R after bad start on V&O but decided to stay with V&O. I did not consider B+R all that bad. Blessings.
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