Hi folks, I've been reading your posts for some time, but due to a lack of experience, I haven't been able to provide a response myself. but now I would like to ask your advice. briefly about the background: my husband was diagnosed in 2015 and has been on w & w since then. Due to a slowly but steadily falling hemoglobin and low platelets, therapy is due soon. He is 55 years and ighv mutated, no risk markers. He can choose between fcr and v + o, which has only recently been approved as an initial therapy in Germany. we clearly tend towards the latter, but I would still like to ask if fcr should be considered?
The doctor, one of Hallek's team, says v + o would be preferable because of the Covid19. any opinions? Thank you very much!
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Germanguest
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Based on long term FCR data, your husband has around a 55% chance of an enduring remission. IVGH mutated folk that achieve 7 years remission, find that their remissions last 12+ years. Your husband also has age on his side.
The potential downsides of FCR are around a 10% risk of eventually developing AML (Acute Myeloid Leukaemia), MDS (Myelodysplastic Syndrome or preleukaemia), plus possibly a degree a long lasting slight impact on bone marrow production.
We don't have more than a couple of years of data of how those treated with V+O go, so we can only guess at long term impacts. Hopefully we will see the same long term remissions seen in FCR without impacting bone marrow function. The uncertainty of COVID does somewhat complicate the choice, but both involve infusions. The F and C can be given by tablet or infusion, the choice seemingly varies by country.
Thank you so much! Because of the known risks of AML or MDS and the bone marrow function that may deteriorate forever, we tend to v + o. But we have not yet had the in-depth consultation and do not know whether there are the same risks or similarly serious risks with v + o .
I don't have anything more to add to Neil's reply other than to say that your husband's CLL markers mean that he will likely do very well whatever treatment he has, as long as he completes the full course. That makes the decision more nuanced of course and discussions with your doctor will be important in helping you to decide.
Hello Germanguest , I agree with the doctor and would (personally) not consider FCR due to what AussieNeil mentioned about the downside risk.
We all benefit so much from the German CLL Study Group, they produce some of the best data. Did they offer you the chance to participate in the upcoming CLL17 (I vs I+V vs V+O) trial? I think the worldwide CLL experts are excited to see the eventual data from this study.
Your post also reminds me of the video/summary CLLerinOz posted recently:
The other thing to keep in mind about the V+O data is that most of it comes from the CLL14 study, which was for patients with previously untreated CLL and coexisting conditions (CIRS score > 6.) So maybe the data would be even better for younger, healthier patients? I wonder.
I am 13q mutated and was 63 (2018) after 12 years on W&W I chose FCR IV chemo. I breezed thru it. No major issues. Only needed 3 rounds. Removed my port 6 months after treatment. Hopefully I am done for a long time.
Feeling great. No issues so far 2 years later. It was my last chance for FCR due to my age.
I was fortunate that all 3 of my doctors (my hematologist and 2 CLL specialists) all agreed to do FCR over Ibrutinib.
Covid would not stop me from getting treatment. Facilities are even safer than ever and take great precautions. He should probably take extra precautions to stay safe at home in between treatments because of covid. I didn't go out much when I was being treated anyway.
Good luck with everything- he has good markers. 🙏💕
It is interesting that GMa27 above says they only needed 3 rounds of FCR. I wish my consultant at the time had stopped mine at that point, or at least after round 4. In the end I had 5 complete rounds and a 6th of just Rituxamab on its own. It has taken over 3 years for my HB to get back to a decent level as well as neutrophils and platelets. However, my lymphocytes and T cells are very deficient so I am extremely vulnerable to viruses. If I had only known I would have strongly questioned the need to keep having round after round even though blood tests showed 0.3 lymphocytes. Obviously not everyone has this outcome but it is worth bearing in mind in regard to FCR. Some consultants just follow the guidelines for 6 rounds regardless of the impact it is having on the patient it seems!
So if you go for FCR, depending on the blood results you get, do keep questioning if you really need the next round after 3 or 4!
Participation in the study has not yet been addressed, but we can ask that again.
the therapy will definitely be carried out on an outpatient basis in the clinic, but that is no reason for us to wait. there are very strict corona regulations there and my husband always wears FFP2 masks.
Another issue is our small children who go to school ... so far everything has gone well and the school has strict protective measures. But even against this background, a therapy that does not attack the immune system so strongly would be preferable. and so far I've only heard of chemo as an extra risk for Covid19, other Cll therapies are not mentioned as an extra risk.
many greetings to all of you all over the world. I am very grateful for this forum and its world wide range
I'll be interested to see what you decide on, Germanguest, being in a very similar situation: German, husband in his fifties with CLL (currently W&W) and a small child at school! Sending good wishes your way.
I was also diagnosed with CLL when I was 51. I have been treated with FCR, BR, Ibrutinib and lastly with Venetoclax and Gazyva. For me, the FCR and BR made me very sick. FCR, BR and Ibrutinib did not work for me as I had too be treated again less than 2 years after the treatment. With the Venetoclax I had no side affects, other than common issues during the ramp up (and some serious ones that were complications resulting from my years of previous treatments). After a year of V&G treatment I am and remain MRD Negative (which means it worked, and I never attained this with any of the previous treatments). If I had a choice I would run away from FCR. Best wishes for you and your hubby!
A few other things to keep in mind, and to ask your docs, before choosing FCR vs. V+O:
1) FCR side effect known as chemo brain? How often does it occur? How long does it last? How bad can it get? How much experience does your doc have with chemo brain after FCR treatment? should your husband have cognitive testing before FCR treatment so there's a baseline?
2) the financial impact on you of each approach? Will the government or whatever is providing financial support for your family cover V+O the same way that it covers FCR? In the U.S. it is typical for the cost of FCR to be almost always covered by insurance, since it is administered in a hospital. V is a bunch of pills you take each day and in the U.S. the cost can be scary even if partially covered by insurance. Find out the financial implications before beginning treatment--you don't want a nasty surprise.
thank you very much larrymarion. I've never heard of the chemo brain and will research it. My husband has statutory health insurance, which means in germany that the health insurance company has to pay for every approved therapy. V + O has been approved for those with statutory health insurance since March of this year. so thank god we don't have to worry at this point.
You're welcome. lots of info on chemo brain out there. it doesn't affect everyone who receives chemo and affects people in different ways. for some people who report cognitive impairment from chemo, it is a minor issue for a short period of time. For others it is bothersome forever. an important topic to discuss with your docs as well as do independent research.
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First appointment since ending V+O treatment 
Any suggestions prior to starting V&O?
Zanubrutinib or O&V
