Well, I got some not so good news today. I had my CLL check today and I'm out of remission. My WBC is now 14K. My platelets are 152. My doctor wants to start me on Zanabrutinib now. I know it seems silly when just getting out of remission and I'm not even close to a WBC of 30K yet, and I have no other symptoms relating to my CLL. But, I got encephalitis in May of 2021 that was caused by my CLL. My white blood cells (I was at WBC of 173K) went past the blood brain barrier causing meningo-encephalitis. He is concerned that if I let my WBC get high again, I could get encephalitis again. I definitely dont want that to happen! I dont know if my Dr knows that's a fact or not. I know this maybe a difficult question to answer, but do you think I should start treatment like he suggests? I could see a specialist at the mayo, but that will likely be several months before I would be able to see someone. I could also send a message to my doctor asking if he knows whether there is a higher risk of getting CLL-related encephalitis again. Thoughts?
P.S. I'm 13q14, negative for trisomy 12 and deletions of 6q, ATM and TP53. I am mutated.
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MyCLLJourney
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I’m sorry to hear you’re out of remission MyCLLJourney and appreciate your dilemma. Normally re-treatment wouldn’t even be considered at this very early juncture but you have the added concern of the CLL encephalitis risk. It’s a question probably beyond the members on here due to the individual medical complexity and in your situation, I’d be wanting a second specialist opinion (at the highest level) before making a decision. I’m from the U.K. so don’t know your system for achieving this but others may.
Best wishes for the decision and you have the advantage of very good markers.
Well, other organ involvement in CLL is rare. And with us having a rare cancer to begin with, there aren't going to be a large amount of people experiencing what you have, like we talk about common side effects.
If it was me, knowing I had a history of previous CNS infiltration/encephalitis, I would treat. Look at how Dr. Koffman is treating his CLL early; he is unwilling to risk another severe episode of the ITP he had previously. Unusual things that some of us experience, are probably better to treat sooner (in my case, extensive marrow infiltration before lymphocytes begin showing up in the blood tests).
Remember the CLL Guidelines are a consensus as to when the majority of patients should treat. There are always exceptions on both sides, in the bell curve of life. If it's been longer than 2 years since your last treatment, and you didn't have awful side effects from that one, consider re-doing it. My specialist told me that for people in a long-ish remission, it may be an option.
Thanks for your reply. My doctor did say that if cost was an issue and I couldn't get any assistance he would opt for chemo treatment again. I never had any side effects the first time (back in 2012) and the second time was pretty good too. It's just hard to tell what issues were caused from my encephalitis vs the chemo the second time. I would definitely do chemo again, but if I can get assistance with my copays then I think I'll proceed with taking the zanabrutinib because the time between treatment the second time around was much quicker.
Your profile only states 1 treatment for CLL, so I am unsure of what you are referring to. It seems like you think the infiltration is/was somehow due to/linked to treatment?
No, I originally had chemo treatment in 2012. I was in remission until the beginning of 2017. My WBC kept getting higher. Then, in 2021, I was diagnosed with a rare, aggressive form of bladder cancer which the pathologist said was likely due to the vincristin chemo I had in 2012. Then, before I even started treatment for the bladder cancer, I got encephalitis. I was tested for every form if encephalitis under the sun and everything was negative. But they did find some cll cells so that's why they said it was CLL induced. They didn't know how to treat it, so they treated my CLL. Little did they know, the same chemo is used to help rid the encephalitis. That was my 2nd treatment of chemo. So, i went 4 1/2 years after the first time I was treated before my WBC started rising, and 2 years after the second time I was treated.
Like SofiaDeo I started my second treatment due to night sweats and massive bulky abdomen lymph nodes and scare over possible Richter's Transformation. My WBC was only 42K at the time I started treatment.
I hope your second treatment provides you a long and lasting remission. I decided it is best to start Zanabrutinib and received grant money to help with costs. I just want to make sure I'm doing whatever I can to prevent another occurrance of meningo-encephalitis!
The only caveat is whether you are already seeing a CLL expert doctor- that is usually checked by looking at this list- and inserting the state where your doctor practices:
Like Dr. Koffman, my CLL expert (Dr. Richard Furman at Weill Cornell NYPresbyterian) and I have gone for early treatment when a targeted therapy was failing.
We really don't know if I would have a longer lifespan if I waited for progression, but the few times I did wait, it was months and not years.
Since yours and my cases are extremely rare- there is likely no data or any expert that can predict the outcome- so we choose one and keep moving.
If it's a question of cost/benefit - ie, waiting for Medicare to pick up much more of the cost b/c you will struggle to pay it - I might try to wait til 2024, and at least go to 6 week checkups to see if that wait were possible.
If it's not that question, and cost is not an issue - I'd get a 2nd opinion, but be open to restarting treatment.
If it were me, myself, I would not start treatment while I felt perfectly fine. But I haven't lived your path, and this is why we all make different choices for treatment.
Is your doctor a CLL specialist? If not I think I would try to find one. I wouldn't assume you can't get in to Mayo, it may be different now but it was fairly easy when I called for an appointment 5 or so years ago.
Or as others have said get a second opinion. I had meningitis last year also. I know I won't wait nearly as long to treat this time if I fall out of remission. But whether it's right now at 14k is a big question. That's a long way from 173k. Just my thoughts for what its worth.
I am 13q mutated and so are you. That is the best markers. I am not sure ur CLL is connected to any of your other issues. Where in USA are you? Why would it be months to get into Mayo? Do u see a CLL specialist? Definitely get second opinion. How are u feeling - any symptoms? 🙏💕
The doctor I have has treated other CLL patients and also other leukemia patients but is not considered a CLL specialist. But he is a very good doctor. I did get approved by my UK insurance for zanabrutinib and also hot a grant to cover the copays costs for awhile.
My comment about the Mayo was based on my previous attempt to see a CLL specialist there (I'm from Minnesota). It was 2 months out before I could get an appt back in 2011 when I was first diagnosed.
Sometimes getting a "new patient slot" is difficult! There are fewer of them in any month than "regular patient" appointments. Perhaps if your current hem-onc initiates the request/calls the office, it can happen faster. A few years ago I needed a Pulmonologist; mine had retired, I hadn't yet seen a new one, and a lung issue arose. My calling for an appointment got a response "it will be 6-8 weeks" but got seen within 3 weeks after my specialist advocated for sooner.
I just started Zanubrutinib august 1st. I am seeing good results and I feel better. I can get more than 1 task done. Without having fatigue. No side effects from the medication. 🙏for you and your journey.
I’m in remissions and Zanabrutinib is my plan as soon as my blood counts increase. Maybe talk to the Socorro about intermittent treatment. Say on Zanabrutinib for a couple of years until remission again.
After getting CLL-caused meningo-encephalitis in 2021, I've had to have the Gammagard infusions every 6 months because my IGG drops too low. Each time I get the infusion it's down to about 350. My last infusion was last Tuesday.
Well, I'm all setup to start Zanabtutinib next week. I was able to get a grant that will cover copays until next year.
I did a lot of reading on meningo-encephalitis related to CLL. I found out it can relapse too. My husband is confident that I need to start the zanabrutinib now.
I've been fortunate, I haven't had any infections or pain or anything. But, we do take a lot of precautions.
You might want to read Dr. Koffman's reasoning for starting his next treatment as he relapses from CAR T after 5 1/2 years remission. Check his recent posts this week. He is starting his next treatment with ALC lower than yours reasoning that he wants to chase the progression back down now rather than wait. His case is different than yours but the concept is worthy of thought.
MyCLLJourney, thanks for sharing your situation and your thinking. I, too, am no longer in remission after three years. I had been on ibrutinib and venetoclax for a total of seven years. My MRD number is quite low so i'm barely out of remission, too, but i'm facing the same decision--restart treatment.
My hemoc recommended getting another lab panel in three months to see if any deterioration in my ALC, WBC, etc. numbers before making the retreatment decision. A couple of reasons to wait until another blood panel is done:
make sure the new blood work isn't an anomaly, ak.a. errors
make it easier to prove to the insurance company that you need treatment
Of course, your infiltration issue should make retreatment a slam dunk, just like Dr. Koffman's threat of ITP returning is why he's going for the new treatment.
Methinks waiting for some new blood work may make your decision easier. Have you discussed the relative risk of waiting a few months, given your low WBC, etc.?
I thought about asking about waiting, but I know my husband doesn't want that. This whole thing scares him to death! I feel a lot more comfortable starting Zanabrutinib now than a few days ago. I just really want to make sure I have no re-occurrence of meningo-encephalitis!
I am not an expert but I have taken it for granted that I would be put on another drug when Ibrutinib fails. I am taking a low dose and so far my numbers are ok. My platelets are 125 and have got lower. The consultants are concerned. I would do the same as you. I had chemo in 2010/2011 FCR and have been lucky that the drugs have worked. I have been really relaxed about cll but Im not now.
I wont wait mainly because I have had cll for 22 years. This is the 2nd treatment and I hope to swop to a different one.
Good luck and I hope you soon get remission, Anne uk
Hi I took Ibrutinib for 5 years without side effects. Upon relapse 3 years ago I was ob venetoclax for less than a year vRemission lasted 2 years.
I am now with the City of Hope, very different approach. The doctor recommended low dosage venclexta, I am at 50 mg.
He started treatment at lymphocytes 8000, my doubling rate was every six weeks.
His reasoning is that a low dose is effective for many of his patients and without the side effects a higher dosage entails, he is trying to achieve a balance between quality of life and disease control.
It seems to be working, lymphocytes dropped from 7k to less than 3 now. Neutrophils after initial drop back up to 2500.
By starting early I avoided the painful ramp-up to prevent TLS.
The CLL was starting to affect my kidneys, all normal now.
I have researched and this low dose approach has a following especially for older patients.
I am happy with the early treatment start, and have perhaps avoided complications like yours that come when the leukemia is allowed to progress.
Perhaps an early start would work for you especially given your past experiences.
Whatever you choose I wish you well, this is a great community and would love to hear how you progress.
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