Hi,
I have been diagnosed with CLL for some 12 years on a watch & wait and unfortunately that has now come to an end as the condition has started to progress, albeit slowly. I have been offered 2 treatment options - a 1 Year Course of Obinutuzumab Infusion plus Venetoclax tablets; or Acalabrutinib Tablets for ever. I would like to understand the comparative results of the two options including likely side effects so that I can make a choice.
Thanks
I am on my first line treatment. I am doing the O&V. My experience has been very good. I haven't had any side effects from either treatment. I finished the O infusions two weeks ago and just take the V pills each day with dinner. My blood counts have all been in normal range starting in month one. I am hoping to be off meds completely come. November. Everyone has to chose what is best for themselves, but this has been a very easy treatment for me. I work everyday and live a completely normal life.
Hi Top Gun,I will chime in since its early and no one else has yet. You can google search the particular drug your thinking about. The pharmaceutical company website will be one of the search results that populate your inquiry.
Once at the pharma company. You will be able to find all the minutia you could possibly want.
John
Hi TopGun1001,
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I answered a similar question a 11 days ago see: healthunlocked.com/cllsuppo...
I hope my analogy of a hard sprint vs. a long slow marathon is useful.
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And an international overview by a well respected German doctor here:
healthunlocked.com/cllsuppo...
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Len
Depends on if their specific CLL clone developed resistance. Someone recently wrote here about 9 years on ibrutinib. Others may get it within a few years. Still others have mentioned needing to pause for surgery after X years, and not restarting, and are stable years out.. It's a big unknown.
Are you interested in perhaps doing a study? IDK about a Phase 1, but a Phase 3 or 2 may interest you. There are some time limited Phase 3 trials involving acalabrutinib, plus other BTK inhibitors.
clinicaltrials.gov/ct2/resu...
With regards to these 2 treatment options only, if it were me, I would be looking at several things. First, how do I feel about taking a pill "forever" versus doing a shorter treatment. Also, how is my cardiovascular health, there have been some problems with the BTK's ranging from high blood pressure to arrhythmias. Some of the newer agents are available through a study. Plus, what is my overall "risk of infection" lifestyle. The O infusion will wipe out making antibodies for at least a year after the treatment ends. If you love to be out socially, have kids, grandkids, great grandkids you do a lot of stuff with and don't want to mask, are still working/volunteering around a large group of ever-changing people, you may not want the infusion. If you live remotely, an oral pill generally starts slower, and any effects generally aren't drastic. With the infusion, you ideally need to be near an infusion center, and there is a possibility of occasional extended stays if you have infusion reactions.
If you get a 2+ year remission on a treatment you liked, you could repeat the same treatment. One can always switch to the marathon drug, barring contraindications. As far as the outcomes, no one yet knows.
The targeted treatments arose this past decade. There is no long term experience with them, no data as to long term outcomes. There *is* some newish data CLL specialists are interested in testing, which was presented as ASH recently, we had a post about it. Time limited treatment with 2 agents appears to give remissions as deep as 3 agent regimens, or 2 year regimens. Without being on a forever drug. Venetoclax is a drug of interest as one of the agents to clear out the blood/marrow, a BTK or antiCD20 are being used to scour out the nodes.
RE:Quality Of Life issues, my personal experience has been, you may or may not have side effects. I've had zero, I've had awful, sometimes within the same "drug class" so I am a classic example of "no way to predict". If your first treatment gave you a decent remission but made you miserable, why bother to repeat it? See if something else gives fewer effects. If your first treatment was fine, repeat if if you like. No way to know ahead of time, *if* the clone will continue to respond, or *if* you get side effects (SE's). My personal plan is to rinse & repeat my last treatment if I can, I didn't have major SE's, and IMO if it ain't broke don't fix it. I'll keep repeating until I get a resistance, or if I develop SE's. Then I'll switch. Unless something even less toxic/more specific comes along!
Hi Jammin_Me,
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That would be a reasonable guess. But many CLL experts would suggest a 2nd try at a sprint to get a shorter but useful remission, and once that 2nd remission was over try a marathon.
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Take a look at my profile: healthunlocked.com/user/lan...
I've done Rituxan, Idelalisib, Ibrutinib, Venetoclax and now on Acalabrutinib. Each time I needed treatment, Dr. Furman and I looked at the available options and chose the best (every time the "available" were different)
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Len
Hi Jammin_Me:
No one knows the answer to your questions as the novel agents are relatively new and the complexity of this disease is staggering. It is going to take some time for the research community to figure out what is the optimal treatment for each patient.
My advice to you is to take it as it comes. I recall SofiaDeo telling me not to become too invested in any particular treatment as today there are often no right or wrong answers, just educated guesses.
Good luck with your decision making and remember to take the information you receive here in the positive manner in which it is given. Often, the folks giving the advice are facing their own health challenges and they are doing their best to help others learn from their often difficult experiences.
Best,
Mark
Hmm I think I have read about this with other cancers, and it *may* apply to at least some people with ours. But being early in the era of the "new treatments" may not see this pattern play out the next few decades. Traditionally, it has been the experience that *solid cancers* definitely do this. But ours is one that has lymphocytes growing from a defect elsewhere, right? Sometimes multiple defects. Other cell lines may also be affected (RBC, platelet, neutrophil, let alone production of immune globulins). It's not a case of "we didn't kill all the cancer cells and the few that were left are multiplying again, and now have some resistance to the drug." I think it might end up being more complicated. Look at me, even in a "remission" my bone marrow still puts out only around 100K platelets. I still don't get a temperature, even with documented infection, since this diagnosis. There's some kind of fundamental change going on in the bone marrow. Keeping the lymphocytes down is one part of it, but IMO it's not all of it.
P.S. SE's are Side Effects, sorry, I forget and use medical jargon. I'll edit the original post.
I can only comment on my personal situation. I was diagnosed in 2018, had three years watch and wait before starting treatment with Acalabrutinib. I am tolerating it very well, no noticeable side effects. I had my latest bloods last week and spoke with my consultant yesterday. My bloods are all within normal ranges, no anemia, liver and kidney levels as they should be for my age (70). I am told that I have good partial remission.
Hello TopGun1001
Would you like to borrow my flipping coin? 
I am doing V&O with 6 months to go and have periodic bouts of nausea and diarrhea about once a week. I do feel better than after my treatment with B+R, more energy. Other than side effects which occurred during B+R treatment, all side effects stopped when treatment ended. Hopfully same thing will happen when I finish V&O. I know as long as I take the V pill, I will have side effects, but is worth it to not have to live with side effects for lifetime of Acalabrutinib.
there are various things that might influence your choices. I have had a few small arrythmias in the past so I didn’t want to go on a BTK for a lifetime as I thought, for me, the risk of arrythmias would be higher.
I’ve put on weight with my illness and it was the middle of covid when I was starting treatment.
I decided I didn’t want to be on treatment indefinitely or be very immunosuppressed long term, as my risk of infection was already higher.
So I chose V &O and started in September.
I’m very close to my hospital so it didn’t bother me travelling there twice a week at first, then once a week, then once a month for infusions. I actually ended up enjoying them because I was surrounded by such fantastic nurses, and other people. To be honest I’ve made some really close friends, and weirdly I miss it now my infusions have stopped!
I had a bit of a reaction and infection at the beginning, but it was never frightening as the staff are incredible. No problems since, and my spleen symptoms disappeared very quickly.
I was told there wasn’t much to choose between the treatments in terms of outcomes - both good!
I was offered the same choice in March 2021.... go with the Obinutuzumab and Venclexta for one year. Who wants to take a pill every day for the rest of your life when you can have a one-and-done option.
12 years! You lucky one! I started with Acalabrutinib 3 weeks ago, nearly 6 years after diagnosis. I had to choose betwen Acalabrutinib mono an Venetoclax/Obinutuzumab. I decided for Acalabrutinib becsuse i am working and could it better integrate in my everyday life. The outcome should be similar…
Thanks for all the helpful comments. Much appreciated. Now decision time!
TREATMENT OPTION FOR TRISOMY 12
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