CLL Support Association
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Update after 3rd FCR!

After 3 rounds of FCR, my doctor said we can go ahead with plan to get BMB in September and hopefully stop treatment! Had no problems during chemo. Port was great to have. Nodes gone, blood work continues to go in right direction. Slightly tired few days after treatments, few days of loss of appetite. Neulasta was uneventful. Just going to enjoy the next month and hope for good news on 20th. I know I have been very lucky during my chemo. 💕

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You've done well with the FCR. Let's hope for good news on the BMB in September, fingers crossed for you!

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Thanx!

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I never thought, when I was scheduled for my first BMB and panicked, that I would ever see people posting about looking forward to one. My three have been basically non events, other than the fact that the word biopsy of any kind does me in, but it has been so exciting to see how many go in for one mid treatment or during a trial and report MRD- or close to it. It gives hope for everyone. Sending lots of positive thoughts for a great report!

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I don't have much choice! LOL it seems they need it to be sure. But I am so fortunate that my previous 2 were uneventful. So hoping my 3rd will be as easy. I just want the treatment to be over and back to just blood tests a few times a year! I was truly spoiled for 12 years.

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Good news , just curious on your age and what stage level you were treated ? Thanks

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I am 63. They said after 65 they would not have recommended. I was stage 0 for 12 years. In April, they staged me at 3. Nodes, marrow crowded and anemic.

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There is a 90yo getting FCR at Cancer care , lots has to do with personal health. The Age restriction for FCR is no longer 65.

All the best though hope everything works.

Did you change your diet ? To more veggies , no gluten and less processed foods ?

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Interesting but my CLL experts would probably disagree. I will ask one of them next time I communicate with him. I think it's great that she is getting it and hope it works! My uncle lived to 101. He was healthier than me!

As far as diet ...so opposite. I have gastroparesis! No fiber, no salads, no grains....no sugar substitute....I have to eat 2500 calories a day!! Took me 14 months to gain 4 lbs and keep it on. I eat, meat, chicken, pork, ribs, potatoes, white bread, rolls, Chinese food, pizza, limited veggies...I eat every 2-3 hrs. It's insane. So i definitely do not believe diet makes a difference for me with CLL. I eat so much sugar and sodium a day! Only good thing is I barely can eat anything fried! LOL

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Diet sure does make a difference as sugar and other things feed CLL and cause inflammation

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It probably does...and would never advocate following my strict diet but it does make ya wonder. My dad ate crap for all 30 years of his CLL. He felt wonderful. I think some people are very sensitive and should follow a healthy diet. I am forced to follow a definitely challenging diet.

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So your father has CLL and lived to 101? What Age was he diagnosed ? Did he have FCR?

Food 30 years ago isn’t comparable to today’s food as markets are global and sourced different.

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Without going into all the medical details, my situation seems very similar to yours as noted above and FCR is now just around the corner me.

"Thank you" for the encouraging comments and wish you all the best with your BMB.

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Good luck! We can do this!!

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Great news GMa27, FCR though challenged by the newer drugs is still a proven treatment. Great news

UK Sparky

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Wishing you good news in September.

Well done.

Sue

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You are an inspiration my love and thank you for sharing ! Stay strong and positive xoxox

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Great news. Fingers crossed for September.

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Very good news! Let's hope that the BMB points to no more FCR for you. That would be great!

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I saw this and took a look back at your earlier posts. I have almost all of the same markers and am scheduled to begin my first course of CLL treatment week after next. My path will be a little different -- I am participating it a trial combining FC with Gazyva instead of rituximab (both are monoclonal antibodies targeting CD20 - so it's the same concept).

The schedule for the first 3 courses is the same as FCR so I've been reading about patient experiences like yours. I can't tell you how comforting it is to hear how well things are going for you! Thank you for that!!

I hope you receive the results you are wishing for after your BMB! Keep us posted.

Pam

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Pam....Awesome you can do the trial!

Are you getting a port?

Hope you sail right thru it!!

Alice

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Thanks Alice! I forgot to ask my doctor about the port when I saw her on Monday, but I do know the drugs will be administered via IV over 4 days so a port seems reasonable. I have giant veins so they could almost put in a spigot, lol.

I've been really lucky so far with my progression. Aside from some puffy glands and the occasional day here and there where I'm dragging a little, I've been symptom free. Hard to say how much of the tiredness is caused by CLL and how much is just the normal result of a busy life and just good old-fashion aging.

But my glands keep growing and my RBCs and platelets are dropping, so it's time to pull the trigger. I'm going in strong with a positive attitude, so I hope I can match your great results!

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So similar to my story!

Over 4 days? I wonder why so many since you aren't having Rituxin. I did mine over 3 days. I got a port to save my veins. I wanted my arms free while getting chemo. My skin bruises easily. Can discuss pros and cons with your oncologist.

Good luck! Update when you can. 💕

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Well the Gazyva is replacing the Rituxin and I'll have to look back at the schedule, but I believe it's split between day 1 and day 4 for the first cycle with the FC in the middle -- all to be administered intravenously. I'll also be taking Ibrutinib orally starting on day 1 and will continue on that drug for 1 year. Cycles 2 and 3 are similar with FCG administered over 3 days.

If all goes according to plan, the chemo part (the FC) is only administered for the first 3 cycles, which reduces the toxicity. The Gazyva and Ibrutinib go on for cycles 4-6, and then there's just the Ibrutinib to finish out one year. If MRD negativity is reached, all drugs are stopped at the end of 1 year.

So far all participants who were able to complete the trial have reached MRD neg. If I'm lucky enough to have the same results, they'll follow me indefinitely afterwards to see how long I can go progression free. I'm shooting for forever!!

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Yay to forever!! :)

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