I recently posted on here that I had Cll/AIHA nearly 4 years ago. It was pretty serious before I got treatment of Prednisone and Rituxan by infusion. Now my CL it appears has come out of remission. I visited my Oncologist (who is not a CLL Specialist—more a Generalist and at the same time had blood tests. They showed somewhat active CLL, but what later tests indicated was that I have Auto Immune Hemolytic Anemia again…or do I? Or did I just never fully get rid of it? I don’t think my Oncologist is all that familiar with AIHA or recurrence. So, for those with much more experience and knowledge of AIHA, I could use some insight. Does one ever “get over” it only to get it again? Can someone tell me more about it, the prognosis and what is often done. My Oncologist first told me that I would not get the same treatment this time, but then after finding the AIHA, put me on 60 mg of Prednisone for three weeks and said that next would be Rituxan infusion based on how I did with the Prednisone. He first was going to give me Venetoclax. Thanks in advance for any help, thoughts, ideas, or information. This group is just excellent in helping think through the journey.
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Dodger47
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Please go see a hematologist-oncologist, they are familiar with various blood disorders in addition to blood cancers. It sounds to me like you are saying your current doc isn't reading up/ordering the appropriate monitoring tests. Some docs may not want to run tests outside their specialty, or perhaps an institution discourages things like this. A hematologist-oncologist is the best one to see if you can't see a CLL specialist, but a regular hematologist (who isn't choosing to treat cancer patients) can monitor AIHA in conjunction with your current oncologist.
I had a bout of AIHA last year. My DAT turned positive, and my specialist stated he rarely sees them return to negative once positive. Even if the AIHA clears up.
There are some other tests that can confirm a hemolytic process is still ongoing, even if it's minimal. In my case, my reticulocytes continue to be abnormal even though the anemia and RBC numbers and sizes/shapes are fine.
Thanks for your response. I had a great CLL Specialist, but he moved on to Princeton University. I will see what happens in the next few weeks with weekly blood tests and response from my Oncologist. If, things don't get resolved, I am thinking of looking to a second opinion and strategy.
My reticulocytes are also abnormal. My first bout with AIHA/CLL was in 2020, just as Covid was starting. The Prednisone and Rituxan infusions took my blood work back to basically normal. Slowly my numbers have been creeping up. WBC to 131,000 and RBC dropping. The DAT test was positive.
I just am thinking the Prednisone will not do anything for the CLL (WBC increases) and other subtle indicators that CLL is worsening. I don't have much lymph node involvement or not a significantly enlarged spleen, so that might be some positive news. Again, thanks for your response. There just doesn't seem to be a lot of good, current information about AIHA and how it works with and complicates CLL.
If you didn't have adverse reactions to the rituximab, there is a combo of venetoclax/rituximab that some specialists will consider. The rituximab now comes as a subcutaneous injection, too. After an initial infusion, if everything is OK, one possibly qualifies for getting it SC. You've had a long enough remission that it is generally considered OK to repeat the rituximab treatment.
There's a newer MAB used more often in CLL nowadays, obinituzumab, that's also used in combo with other drugs for CLL. Plus oral only agents.
It sounds like you are in the US. The CLL Society offers a free, one time, consult with a specialist if you haven't yet done one through them. They have lists of specialists (not all) by state. They also will have support groups for various regions, you can speak with other people in your area regarding who they like. I think all the meetings are Zoom now, or at least some of them.
Thank you SofieDEO! I have more information now to discuss with my doctor. Yes, I am in the U.S., midwest. I will pursue the CLL Society information and do more investigations. Best wishes to you.
Dodger, you might get a few more helpful answers if you could provide some more information about prior treatment.
Are you counting your prednisone and rituxan therapy as your one and only treatment for cll? I am not an expert for sure, but I would think prednisone and rituxan was prescribed primarily to treat your AHIA. While that drug combination might help treat your cll as well, prednisone and Rituxan alone, particularly the prednisone, would not be a typical frontline cll treatment.
I had Rituxan and prednisone to treat my AIHA. Once the AIHA got under control, I was then put on ibrutinib to treat my cll. Ibrutinib, a btk drug, is thought not just to help treat cll, but also to keep AIHA in remission. My doctor thought my AIHA was somehow triggered by my rapidly advancing lymphocytes.
I would 100% get a Cll specialist. A regular oncologist might only have a basic knowledge of how AIHA and Cll treatments can overlap, and which ones to use. If your AIHA is stubborn, like mine was, a specialist is more likely to know what other remedies can be tried, some not in books, but rather learned from years of clinical experience.
Based upon my personal experience and success (so far) controlling my AIHA, I would think the first step for you might be to get the AIHA under control, perhaps rechallenging with steroids and rituximab. If you are 76 yrs old and have never had a btk drug, I would consider discussing that option with your doc.
A btk drug like acalabrutinib would almost certainly work for you, and might be the only drug you ever need for your cll. And it’s a relatively easy drug, known to also control AIHA.
Good luck. I personally think your prognosis for getting your AIHA and cll under control is good. There are other treatments to try for stubborn AIHA if steroids dont work. It was an IVIG infusion that finally worked for me.
Thanks so much for your response. In an earlier post, before I found out I had AIHA, I posted more of my history, so apologies for not making it clear this time. I was found to have CLL in 2010 and it was quiet until 2020 when all my blood work (it seemed) went crazy. I was diagnosed with active CLL and AIHA, and was in the hospital for 9 days being treated with Prednisone and Rituxan. Things improved and treatment continued for 6 more rounds of infusion over about 4 months (3 days each time). That seemed to stabilize everything until about 6 months ago when my WBC started up and RBC and Hemoglobin started down. Reticulate also went up. Last test my WBC was 131,000 up from 96,000.
I don't know how much my Oncologist knows about CLL/AIHA and it seems there is not a lot out there about the what?, the why? and particularly the How of treatment. He did order the AIHA test (probably as a result of my past) but I have a feeling I that he will lean toward Rituxan and Prednisone again. I really appreciate your background information and experience and will discuss this with him after my blood tests Wednesday. I am in the midwest U.S. and am now also investigating who I might consult with additionally. Again, thanks so much. This forum and group is amazing, helpful and kind,.
Treating the CLL itself may resolve the AIHA, without the need for steroids. Depending on other lab values, prednisone is not something used as a first line treatment, and oral steroids in general aren't a great idea in anyone immune compromised.
There actually is a decent amount of information about treating AIHA in the context of also having active CLL, but again, a hem-onc is the person to see. Ideally one that is considered a "specialist" in rare CLL, or at least willing to read up on the current treatments.
My first hem-onc wasn't a CLL specialist but read up on CLL, and explained things to me. If he were still there, I would be seeing him, but he's since retired and I finally found a well regarded specialist not too far away. Mine is also willing to work with local hematologists, so know that you can still see your local doc if they are willing to work with each other. A number of people have a specialist they see only occasionally overseeing/commenting on treatment, with bloodwork and routine visits at the local docs.
Thanks for the additional info. Keeping in mind that I am no expert, it seems to me that your doctor was primarily treating your AIHA with the prednisone and rituximab, not your cll. The rituximab did probably help control your cll as well, but rituximab alone is not a typical first time treatment for cll.
This means that you might be considered as mostly treatment naive as to your cll, certainly treatment naive as to the main two agents used to start cll treatment these days, a btk drug or venetoclax. Treatment naive people typically get the longest response to their first treatment.
At age 76, I would consider a btk drug over venetoclax, or at least have that discussion with your doctor. The newer btk drugs like acalabrutinib work for most everyone as a first treatment. As a stand alone first treatment, some people have been on btk drugs for ten years without progressing. So at age 76, you are looking at a relatively easy and effective oral drug that might get you to 86 or beyond.
Venetoclax is a great option too, perhaps a more powerful cll killer than any btk drug. While many, if not most, people tolerate Venetoclax, it was a hard drug for me, hence my bias towards a btk alternative. Venetoclax can be more complicated to start taking as well as there can be a lot of monitoring and bloodwork the first few weeks. Starting on a btk drug is usually a simpler process.
I cant emphasize enough the importance of getting an opinion of a specialist to help you choose the best option. I have it set up now where I see my specialist once every six months or so and I have someone local for everyday questions. You have great options with venetoclax and a btk drug. When you take one, the other becomes your fallback. So if you guess wrong and take the least best drug first, it will still probably work and then you have your best choice now as your backup.
That's a great summary of your specific journey with CLL/AIHA and you've had some very helpful replies, which I hope you found reassuring. If you could copy that first paragraph into your bio via this short cut ( healthunlocked.com/profile/... ), you'll help future respondents to your posts more accurately reply with helpful suggestions without you having to repeat your history.
Having a high reticulocyte count (that is, lots of immature red blood cells), shows that your bone marrow is trying hard to replace those lost to your immune system attack.
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Looking for the post on the stage 2 trial of treatment of AIHA (anemia)
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