About a month ago, I posted that I was considering stopping FCR treatment after 4 cycles pending a Bone Marrow Biopsy and PET scan. The results are in and the BMB showed "NO residual CLL detected" and the Normocellular at 40% cellular, Normal for my age. The March BMB, when I was diagnosed, showed 95% overall cellularity (hypercellular) with CLL involving 95% of the marrow cellularity. The PET scan was also clean. Therefore, I am ending my treatment at 4 cycles.
Along with the recommendation of my oncologist, I found this article very useful in my decision to end treatment at 4.
My results shows how effective FCR can be and why it is considered the first line of treatment for those that can tolerate it. However, I was glad I could stop at 4 sessions. The fourth was the hardest and took the longest to recover. Even 4 weeks after the last treatment my blood work shows I have been slow to recover.
I am very thankful for everything my Oncology team a has done and their concern and care for me. And very thankful that I responded this well to treatment and hope for a long remission period to enjoy life. I know many people have not responded as well to treatment or unable to get proper treatment and wish them well and realise how fortunate I am.
The plan going forward is to monitor my blood work until I show full recovery from treatment. Then continue to monitor for the return of CLL. It is somewhat uncomforting to think that there is nothing to do to prevent the return of CLL other than live a healthy lifestyle and pray. The thought is; there is nothing out there that that does not have any side effects, so why subject your body to that until you need treatment. Any thoughts on this? Should I be seeing a CLL specialist, would they advise me different?
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severdon
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That's a hugely encouraging result after 4 cycles, so it's great that you could be spared the impact of additional treatment cycles.
With regard to your final question, CLL is still considered an incurable cancer, which means our options are restricted to short term treatment, followed by returning to watch and wait until remission ends, then repeat the cycle, or have maintenance therapy such as Ibrutinib and put up with any side effects, possibly indefinitely and hope that CLL won't become resistant to the maintenance drug. I expect what's more likely in your case is a mix of the two approaches - enjoy your time without needing treatment as long as you can, then go onto a maintenance treatment and see how long that keeps CLL under control. (That's assuming a cure or better short term treatment doesn't become available in the mean time.)
Would a CLL specialist advise you different? Only one way to find out - seek a second opinion!
I would say definitely see a CLL specialist. What can you lose? I have completed three sessions of FCR and am handling it well. My bloods are normal.
We are all different, but my CLL specialist has advised continuing to the end of the programme (six) while I am young and well enough, on the grounds that this may deepen and lengthen the remission.
We had exactly this debate with my husband's consultant after 3 rounds of FCR. At that time he recommended 'FCR lite' - ie rounds 4-6 had 3 days F&C rather than 5 days.
It seemed to work - MRD- and still in remission 3 years later
Enjoy your life post FCR - we certainly do grab opportunities more following the 'wake up call'
Thanks for your reply. Glad to hear of remission of 3 years and wish you folks many more. I will definitely take your advice and enjoy post FCR life and grab opportunities as they come along.
Your story is very similar to mine. I really struggled with round 4 and decided i was broken by FCR and any more would just dsmage me.
I took months to really get over it both physically and mentaly.
Yesterday i went for my 4yr post FCR check up.
Bloods spot on the button and 100% clean bill of health. I think if caught early enough 4 is the best treatment. IMO i wouldnt have got through 6 sessions.
Now go live your life and dont let CLL rule you. This is YOUR time
Thanks for your reply and it is great to hear you have made it 4 years post FCR, I wish you many more. Yes your story sounds very much like mine. The 4th FCR was the hardest, 4 weeks after, my blood work has not yet rebounded. My oncologist is sure it will come back due to what he saw in the BMB. However, both him and myself were very thrilled to see no residual CLL in the BMB. Not sure I could have tolerated any more FCR. Looking forward to post FCR life, however long it is.
So excited to hear this! I just finished round 2. Doing great. No side effects. One more and I get BMB. I hope I can stop. Blood work has been great. Nodes just about gone! I am trying not to get my hopes up but I hear stories like yours and it's encouraging!
What frustrates me is many on FCR are not given the option to test after 3 or 4. Maybe they could have stopped too! Won't help our statistics...but it is what it is. Happy for you!! Celebrate!!
Good luck on your treatments, I read some of your last posts, sounds like you are in good hands and getting good recommendations on treatment. I was not excited about FCR, however, the results in some cases are very good if you can tolerate it. I had "Trisomy 12" mutation, so some of the milder Chemotherapies were not an option. I am 63, but my oncologist thought I should be able to tolerate it fine. I tolerated the first 3 treatments very well. I did have some issues with rituxan on the first treatment, but i guess that is not uncommon. We did a Flow Cytometry test on my blood after 3 treatments, and it showed no CLL in my blood, therefore I had responded to FCR very well. However he did caution me that CLL could still be in my bone marrow or hiding out in my lymph nodes. Since I had tolerated 3 treatments very well, he recommended a 4th, then do a BMB and PET scan. As I posted, the results were no CLL residue. The 4th was the hardest, but I survived and feel almost fully recovered 4 weeks later.
Again, Good luck on your treatments, and I wish you the best. I hope you can quit early also. It is a good feeling.
I made it through 4 treatment cycles, but the fourth one put me in the hospital for a week. My blood counts were very, very low. They gave me blood, plateley and IVIG transfusions almost every day that I was there. Now my doctor said that I can never have FCR again because it almost killed me. He said that kind of reaction is rare. The good news was that a BMB showed that the FCR worked and there were no CLL cells left. I'm still getting monthly IVIG's to boost my imune system. My blood counts were up a little and then down a little hovering around 50 platelets and 8 hemoglobin. For a few months after getting out of the hospital they monitored me every three days and gave me transfusions when I needed them. Now my platelets are finally up to 70, but my hemoglobin is still hovering around 8. Hopefully they continue to rise to near normal.
I guess that a lot depends on the individual person and how their body reacts.
Wow, sorry to hear about your immune system, hopefully it will come back. Make sure you are eating good and getting plenty of rest. On the good side, I am glad to hear that the CLL was knocked out. I am sure it makes you wonder if you could have gotten by with 3 treatments. I am glad I did 4, even though the 4th was the hardest on me. It is good to know the CLL residue in my bone marrow is zero. Everyone is different, but I appear to have recovered from it now. I am just glad I did not have to do 5 and 6.
I do eat pretty well and have started drinking lemmon water (lots of it). My son drinks that and I googled it and it does appear to have good benefits so I started. As for rest, htat is a little tough. I have to get up at 5 AM to go to work and don't usually go to bed until around 9:30. I guess 7.5 hours insn't too bad.
The funny thing was that as soon as my doctor said it was safe to stop wearing my mask everywhere I contracted bronchitis and a sinus infection. That was a month and a half ago and I am just getting over it. Now if I hear someone coughing or they appear to be sick I put it back on.
Super news. I have just posted myself regarding the possibility of not doing 6 rounds. Its brilliant to hear that it is more than possible to achieve great results without the horror of more chemo.
Good luck with your treatments, hope all goes well. I am sure it is comforting to you to know that your health care provider can monitor your progress and knows that you may not need all 6 treatments. Everyone is different, and the goal is to be MRD negative in the bone marrow. I feel very fortunate to have been able to stop at 4 treatments. Wish you well.
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