At my last appointment with my consultant I was told that I was nearing the need for treatment for my relapsed CLL.
Quick History
Diagnosed 2009
W&W till 2017 then FCR for 6 months - achieved MRD Negative
Came out of remission March 2021, but now TP53 Variation (I assume that means mutation). Currently on 6 week W&W and Lymphocite count about 80-90 (by now).
Spleen enlarged (about 2 fingers below my rib cage ) and several palpable LN under my arms, neck and groin - still fairly small.
This is all still fairly low compared to my first W&W, but my doctor was/is concerned about doubling time.
IVIG < 2 and fighting long term recurring sinus/throat infections.
Bit of a complication in Aug 2021, when I had a MI Heart attack (and two stents fitted) and now have an echo result of 42 - all being controlled by a host of drugs.
My consultant gave me the two treatment options of Venetoclax and Rituximab (2 years) or Acalabutrinib (long term) with printed out information on both. However, she wouldn't commit to which one I should be on, but did hint toward V+R considering the affect the treatments may have on my heart. I have had experience of Rituximab (with the FCR).
I was wondering if anybody with experience of these therapies could comment on what would be the best second line treatment with the most positive outcome for a remission and probable/possible side effects.
Thank you
Richard
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Rich316
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Hello.I don’t know if this helps, but my husband had FCR in 2013 and when it was decided that he needed treatment again at the end of last year, we were more in favour of Venetoclax and Rituximab.
He has not had huge heart problems, but is on a very low dose beta blocker for SVT and we decided that this was less likely to cause any cardiac problems.
(He also had prostate cancer diagnosed last year and has had radiotherapy for that, along with ongoing hormone treatment.)
At the beginning of Venetoclax there is the gradual ramping up of the dose, but he was closely monitored and he has one more Rituximab infusion next month and has to have Venetoclax for two years. Obviously, covid has not made things as easy as they might have been! We know that his antibodies for covid are unlikely to be good, whilst he’s on treatment, but I believe that would be the same for any treatment. We have shielded solidly for two years.
Generally speaking the side effects seem to be fairly minimal, for him, and his blood numbers are doing well so far. We hope he will have a long remission.
Would you mind telling me the age of your husband. I am 76 and was diagnosed at stage 4, four years ago. After initial infusion with obinotuzimab and chemo I was only in remission for 6 months but ibrutinib worked very quickly but did cause some heart issues, so after a 6 month vacation from the drug during which time I remained in remission i started acalabrutinib which i have been on for 10 months, taking only half doses. I feel fatigue and various non threatening symptoms, like coughing which might be from my betablocker. I am hoping to go off acalabrutinib as I want to be free of the fatigue and various off and on body aches. I have heard of people achieving complete cures using acalabrutinib. But if I do not achieve that i am interested in venetoclax combo but wonder if it is safe for my age.
Hi there, I am now 57, so was in my mid 40’s when diagnosed with CLL. The Heart attack was a real bolt out of the blue as I was still fairly active with running, walking, occasional kayaking etc, although I was about 2 stone heavier than I should have been - having shifted my rugby playing bulk from arms and legs to around my mid drift - 🙄Going off the CLL subject for a moment, Beta blockers can also cause fatigue so may be worth checking.
Just out of interest (as you mentioned your cough). Would you happen to be on Ramipril or another ACE inhibitor? I was given Ramipril after my HA - along with a cocktail of other drugs - and developed a horrific cough after 4 weeks, which lasted 3 months. It was so debilitating 24/7 and caused a host of other problems, including a inguinal hernia. It took another 6 weeks for the cough to clear after changing to Losartan. If you are on Ramipril or another ACE inhibitor, then you may be one of the unlucky 20-25% who develop a chronic cough. It can be sorted!
With our bloods being tinkered with, you may also want to get checked out for Vit B12 deficiency. This can cause fatigue and body aches - as well as other symptoms. Quite common, but often overlooked.
Hello. No, not at all… he was 55 at diagnosis, 57 when he had FCR ( started due to kidney problems driven by CLL and immediately rectified by the FCR) and 64 now, almost 65.As for the safety of Venetoclax for your age, I believe it is, but it is something I am not qualified to advise on.
I developed severe AFib while on Ibrutinib (hospitalized twice) so I was switched to Acalabrutinib and within weeks was hospitalized again - this time with PVCs (premature ventricular contractions) which they said was unrelated to the AFib. It's hard to say if this was because of the Acalabrutinib but it's not unheard of and the timing was suspicious. I've since stopped the Acalabrutinib and the heart condition is improving (with the help of lots of drugs) and I may be getting an ablation and possibly a pacemaker. When I go back on treatment, my specialist suggested V+R.
Thanks TimI am veering toward V+R tbh. I will be doing some more reading over the next few days, but it does seem to be the best option. I was also wondering about outcomes and remission rates.
Tim, sorry to hear about your Afib. I had a similar experience and it was pretty rough at the time. Glad to hear your heart condition is improving. Wish you all the best.
Here are links to two different postings of Videos from USA CLL expert doctors that may answer your questions. They are intended for medical professionals and the speech may be difficult to interpret, so you may need to use the transcripts and look up some of the terms using these CLL Society reference page. cllsociety.org/toolbox/abbr...
I did have cardiac side effect on Acalabrutinib and ended with permanent Atrial Fibrillation and a heart failure.Cardiac toxicity is less with Acalabrutinib, but it does happen. Since you already had a mild MI maybe Venetoclax &Rituximab would be safer choice than BTK inhibitors.
Definitely something to discuss with your doctor and think about.
I am on Venetoclax only for one more year now. Rituximab with some problems behind me and except occasional nausea and being tired (my age doesn’t help)
Thank you Dana. Very helpful. Having had Rituximab as part of my first line treatment I sort of know what to expect, but without the side effects of the FC part of that regimen. I think that the feedback is stacking in favour of Venetoclax now. Will discuss all of this with my Haematologist in the next fortnight.
I hope you continue to do well and wish you a long, long remission.
Ive just been in a similar position to you, 2nd treatment and having to decide between acalabrutinib and V &R. I'm unmutated and my latest FISH has shown that I now have 11q deletion.
My personal choice, originally, was V&R - my thoughts being after 2 years treatment would be over and hopefully a good remission.
But FCR back in 2013 has had the lasting side effect on my immune system - my IGG has continued on a downward trend and at the moment stands at 2.3.
After discussing it thoroughly with my consultant we decided that having R again would be too much for my immune system to cope with and another big drop in my IGG would be an issue going forward.
So I started alcalabrutinib on Saturday. My bloods were checked on Monday and it shows it's started working - my WBC has jumped up.
So far I'm experiencing the headaches - which are horrible - but I'm drinking extra coffee which is helping. Thanks to all the other posts that advised this.
It's not an easy decision as to which treatment, I'm lucky as I have a consultant I trust 100% and we've spent time discussing my options.
Good luck with whichever treatment you decide on and I hope you get a long remission.
Hi. My story is similar to yours and Francis husband.- FCR in 2017, relapsed 2021.
During the FCR program I had a mild heart attack (ie I thought indigestion) and a first bout of AFib. My haematologist recommended V + R for the lower likelihood of more heart issues.
I’m eight months in, had one more AFib episode, almost certainly triggered by a fever at the start of V , and today had a couple of faints which are being investigated right now , on a monitor in hospital. Among the possible side effects of V is low BP, so that may be the cause of the faints, or they are maybe a legacy of the FCR surprising my heart 5 years ago.
Otherwise, apart from a bit of nausea, it’s gone smoothly and I’m maintaining ok on the 400mg full dose, with bloods in the “normal” except neutrophils which area bit low but not currently needing boosted.
Very best wishes to you on whichever path you go on.
Thanks for the response. That is very encouraging. I have decided to go down the V+R route and should be starting in a month or so. I hope you stay stable, keep responding well and have a good long remission after treatment ends.
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