Severe Anemia and Imbruvica

[MCarter1954]

I have been on 400mm Imbruvica for 6 years fighting CLL/SLL. I understand most patients consider them the same, I do not as I am tested every 4 months for both during Labs. So, please know this is not a debate for me, I simply have symptoms of both in post Labs with my Oncology expert. Most recently ( last 3 Labs Hemoglobin was 13 g/dL, then 11 g/dL and most recent 01/25/2023 was 7 g/dL. Started Infusions of Iron 01/30 for 5 sessions.

Just wanted to give some background. I have felt so tired for last last year I did not want to get out of bed to do anything. No indication what is causing this Iron loss.

Has anyone experienced an issue like this?

My doctors cannot explain with no blood being found exiting body functions.

Any feedback would be appreciated.

[cajunjeff]

Hemoglobin that low is very suspicious for autoimmune hemolytic anemia (AIHA), a condition where a person is having their own body attack their own red blood cells. I am no expert, but 7 seems very low and in the range where a blood transfusion might be considered.

The one thing that argues against AIHA is that I think most any cll doctor would immediately suspect AIHA with hemoglobin that low and run tests to rule in or rule out AIHA. one such test is known as a coombs test. I cant imagine your doctor would not have run one.

It cant hurt to ask your doctor if you have been tested for AIHA. Ibrutinib can be used to treat AIHA, but it can also cause it, if I understand such things correctly. But there are other treatments for AIHA like steroids and rituxin.

I certainly dont want to play doctor here, but I do think as a general rule that AIHA is a complication of cll that should be suspected and tested for in the face of rapidly falling hemoglobin.

And while I am not an expert, I did have a bout of AIHA with hemoglobin at 7, so I know a bit more than the average bear about AIHA. I had to have transfusions when I reached 7.

[Dahlia7]

I think they need to look for a reason for your low iron. Blood loss is the most common. Have you been checked for occult blood in your stool and have they considered colonoscopy? Have you stopped eating meat or possibly reduced your iron intake? Are the rest of your blood counts normal ?Tony

[db601]

You are having frequent testing. That’s a good thing.

Your personal profile does not mention if you are in the UK and the basic information on your CLL/SLL . It is difficult to comment without these details.

CajunJeff’s reply sounds reasonable to me. He has had the experience of hemolytic anemia and (as usua!) offered detailed suggestions.

Have you had a recent Bone Marrow Biopsy with a genetic profile and follow up of Next Generation Sequencing?

Do you know the specifics of your basic mutations from 6 years back when ibrutinib was started?

11q,17p ? Are you mutated or unmutated?

There are some transformations which can occur over the course of CLL/SLL. I suspect you may be an 11q (ATM) .

If your 6 years on 420 mg? Ibrutinib is becoming an issue, your providers may want to consider newer drugs with less adverse effects.

Please keep us updated.

I hope this resolves for you. The fatigue must be so frustrating.

~Diana

[MCarter1954 in reply to db601]

Diana, thank you for your response. I had a septic infection in my left hip ( no known reason ) caused a 3 week hospital stay to get it under control. At that time my oncologist stopped my Imbruvica completely due to the treatment I was given for the septic infection. After she felt do to the infection and heart issues we should give the Imbruvica a rest. All this occurred in Feburary of 2023. Well blood test were good until October. My oncologist had me go through a PET and Bone Marrow Biopsy. All this pointed to a CLL mutation. This is my third relapse since Chemo in 2015 (July). Turns out I am Pre-Mutation stage. Just started Brukinsa which just received approval from FDA.

I am deletion 11q22-23, I am in the USA and currently live in Arkansas.

Still doing Labs every 2-3 months (normally). Right now because I just started Brukinsa, every two weeks.

It is really hard to explain to someone what living with CLL/SLL is like. You may have two or three good days then three or four days where you so tired you don't want to get out of bed. Friends and family joke about days where all you do is sleep. And get angry when you cannot do things with them. Another thing that few understand is that you must plan any outing with doing only a few things then get back home. It is so frustrating but it is your new Reality. Well I am an 8 year survivor and with the new treatment, maybe another 8 is possible. Have a blessed life and never give up.