Taking a break from treatment?

[Palmetto]

Our last specialist called CLL treatment a game of Whackamole. Treatment needed at times and at other times could go without until the next round of symptoms present. I have written here a lot about husband's rounds of treatment and it is now apparent that he cannot take the 6 rounds of Gazyva and 12 months of Venclexta at 400 mg. to hope to get to a UMRD after a year. Right now all is well except low neutrophils due to the treatment. All counts are great. Hemoglobin is 14.3, WBC 3.5, absolute lymphocyte counts lower limits of normal. He was off of Venclexta for 2 weeks and had to have rounds of G-CSF injections and after 2 weeks they wanted him to go back on Venclexta at 200 mg. and not continue with the last 2 Gazyva infusions. I asked if he could start back on 100 mg. for a week and see and the oncology nurse agreed, now a week on 100 mg. he needs G-CSF again. She suggested leaving on 100 mg. of Venclexta until we see our Oncologist on Tuesday. The discussion will be on further course of treatment. He has been treated probably 5 times now and at a certain point could go off treatment until counts started to change. Is it possible with Venclexta and Gazyva after 5 months that we could take a break from treatment, especially with Covid so he can begin to build antibodies in B cells after they recover? Bear in mind he is 82 years old and otherwise in good health other than A Fib chronic not a fast rate just irregular. I prefer that he have even 6 months or a year or more and wait to see how he does. The only reason he got treatment this time was because of AIHA which I caught. Doc felt this regimen of the 1 year of Venclexta and 6 infusions of Gazyva might give him UMRD. Now that does not seem possible. Any thoughts? Sorry to be so long.

[Justasheet1]

Palmetto,

You both deserve a break but that’s not how life works sadly as you know.

If you trust your CLL expert then make a plan and if you’re not sure, definitely get another opinion.

Be safe,

Jeff

[Palmetto in reply to Justasheet1]

If he was a CLL expert I would defer if it was my choice but sadly he is not. Dr. Davids last year did not see a need to treat and if it had not been for AIHA this treatment would not have started but after the bad round of AIHA last year he ended up back as our principal oncologist and husband is afraid to leave him. Sigh! Thanks for taking your time.

[thompsonellen]

Some of the people on the obinutuzumab, venetoclax, ibrutinib trial stopped treatment entirely after achieving remission. I never cleared the bone marrow, so I didn't. I am also 17p deleted, which complicates things and being off treatment was not an option. I have thought of treating CLL as a whack a mole experience, too, but one where I'd switch treatment every 5 years, not one where I'm on and off treatments for 6 months. In my case, if I were off, the CLL would come roaring back. Since you are not seeing a CLL specialist, I'd see if there was a CLL expert to ask this question. In my case, this would absolutely not be an option, but your Dad may not have my complications.

[beanlake14]

I do not see how going off after a few months would be effective. It just seems to me like he could do 100 or 200 mlg for a year? Another possible idea is to wait several months, and if his blood work changes, then reintroduce, but again, those of us on here aren't doctors and just speaking from our experience. I am on venetoclax as one of my 3 drugs, and it is 2 years for me. I run low on neutrophils and white count, BUT I am also 66, not 82. I am in the US and am also able to email my oncologist with questions. Could you reach out to a specialist via phone call or email for a further discussion? At this point if he is having constant infections that is more dangerous than the CLL in my mind, though. I take neulasta shots when my neutrophils are quite low, but they have leveled off at a 2.0 right now. Let us know.

[SofiaDeo]

The most recent study for Covid antibody data are showing no patients who had antiCD-20 treatment within the past 12 months were able to make antibodies. So any break would need to be extensive.

ashpublications.org/blood/a...

Covid was the main reason I chose Venclexta monotherapy. At that time, not only was the risk of catching an infection in the infusion center a factor, but the "big unknown" of "how long will B cell treatment impact antibody production." So if you are considering taking a break for him to make antibodies, it will need to be lengthy. Also, this study indicated people unable to make IgG and/or IgM were also making less antibodies, period. If those measurements for your husband aren't available, it is something to assess. If he is one of the few who can't make immune globulins/other serum proteins, it is unlikely that pausing treatment in the attempt to make some, won't be successful.

If your husband were me/my patient, and treatment had to continue, I would be pushing my docs to try ultra low dosing of Venclexta, as well as extending the period between attempts to increase dosage. Since your husband reacted to 100mg, perhaps 50mg would enable his marrow to stabilize. Or even 25mg. I had a longer induction than standard, other people will need a longer one also. Your instinct to try the 100mg dose instead of 200mg is smart; I often saw the docs on the treatment teams when I was doing oncology opt to "go lower" in patients who were having strong adverse reactions. Point out to your local hem-onc that the study used to determine Venclexta dosing had only 400 patients! And there are always patients who will be very sensitive to low doses (as well as those who would need extremely high/potentially toxicity to the point of it being unacceptable). It may be that a dose low enough to control his CLL without bottoming out his neutrophils can't be found; some people have really bad side effects to certain meds, even at really low doses. Another member here (hawkeagle) has written about how he reacted strongly to standard doses, but a low dose was successful.

If you are interested, please PM me if you want more detailed info as to how to approach his doc.

[Palmetto]

Thanks Sofia. I messaged you. Everyone bear in mind his CLL is very indolent. No high white counts, hemoglobin normal. No serious deletions other than 6 Q. and IGHV unmutated. No large lymph nodes or enlarged spleen. No infections at all, in fact has not been sick since over treatment in 2019 which crashed his immune system. Not even a cold. He does have really really low IGG levels in the 200 range, but our doctor never gives IVIG I guess due to the fact that he doesn't get infections. He has had several years of treatment free time after just a minimum of treatments in the past. His worst issue is autoimmune hemolytic anemia which prompted this last round of treatment thinking it would treat the AIHA plus try for the 1 year of 6 rounds of obinutuzumab with 400 mg. of Venclexta for a year which is not going to be possible and why I would like to suspend until there is progression. Thanks all for your input.

[tesoro5858 in reply to Palmetto]

I am so impressed with your advocacy for your husband. I wish my husband would even be interested in my CLL, but that's a different topic.

I am 19 years younger than your husband with "good" CLL prognostic markers. W&W since 2014, treatment naive, AIHA 2021 out of the blue. MDAnderson CLL specialist put me on 6 cycles of obinutuzumab monotherapy which worked. Of course, no B cells now, but neutrophils and other blood parameters fine. Maybe the V was too much for your hubby if his CLL is indolent? Just my 2 cents. Best wishes & stay safe!

Susan

[Palmetto in reply to tesoro5858]

Thanks for your kind words. About your husband, I think men are less likely to be involved with their wives illnesses, believe me, mine forgets I have any issues at all :)Hope you stay treatment free as long as possible. Always something new on the horizon when it comes to this crazy disease. Take care.

[Smakwater]

Palmetto,

From my point of view UMRD should be only one of the goals/measures. If I am accurate in reading your previous posts, you are experiencing some success in the quality of life measure which is very important in my own experience.

In working with his doctor, a reset may improve the outcome in all measures. I hope so.

For me the greatest frustration is still the unknown, however, I am still learning to work with it.

Keep us posted on the break from treatment improvement.

JM

[Palmetto in reply to Smakwater]

Thanks for your understanding JM as always. It is just that the

treatment is causing the problem, not the other way around. Stay well.

[Palmetto]

Great visit today! After review still extremely low neutrophils 86 but hemoglobin 15 platelets 192000 holding Venclexta indefinitely. Will do blood counts once a week followup One month. May restart on low dose Venclexta if progression but for now nothing. Thanks for input all especially Sofiadeo!