Hi everyone! I’m a longtime reader, first time poster. I was diagnosed with CLL at 45, waited and watched for one year, then started treatment due to splenomegally and super high wbc. Joined a trial of obinituzimab, ibrutinib, and venetoclax. I’m on cycle 13 and numbers in general have been doing well.
HOWEVER, my LDH has steadily increased month after month linearly and now is at 400. My doc was thinking transformation and ordered a PET scan - no tumors. Doc doesn’t know what to think.
Has anyone else experienced steadily increasing LDH? Any insights?
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As JigFettler commented, a rise in LDH might be expected as the IVO (Ibrutinib, Venetoclax, Obinutuzumab) combination reduces the size of your nodes and spleen and kills off CLL cells.
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But since you are on a clinical trial in the USA, we would expect that a CLL expert doctor is running the trial and your LDH is outside the range your doctor has experienced. Also since you are in cycle 13, you likely have been getting the triple treatment for over one year and your ALC, nodes and spleen should be close to normal, so the LDH should have peaked long ago and declined.
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You can read several past discussions on LDH in the box on this page labeled: " Related Posts
Please treat this as if your life depends on having the best possible advice and answer- it may. So don't be docile, be firm but respectful. They owe you better information.
Elevated LDH causes are best ascertained by a CLL specialist and I am Not one, I was a pharmacist. However, my own experience with elevated LDH is when my cancer is active, my LDH rises, especially during treatment as the treatment kills off cancer cells. Right now I am experiencing a hemolytic anemia & my LDH has gone even higher. If your other organs are getting some damage from chemo, LDH can rise too. The only time mine has ever gone back near normal was in remission. And if you exercise hard a lot, that will most likely contribute somewhat to LDH elevation. Remember, LDH is released as cells are injured, whether from exercise, disease, or the lab tech accidentally drops your blood specimen tube on the floor!
If you haven't had an LDH isoenzyme test done, see if your insurance will cover it. It can help pinpoint where the damage is. But Jig is correct in saying that a CLL specialist is more likely to be able to suss out the reason for a constant linear rise. Has yours discussed second or third opinions with other CLL specialists?
If it helps, my current treatment isn't regressing my CLL anymore, my spleen is> 20, I have recently developed a hemolytic anemia, and my last LDH (Nov 10) was 384. On 10/28, it was 369. 10/13 it was 367. June 18, at the start of treatment, was 294. And my CLL specialists haven't been particularly concerned with the rise over the past months.
I agree with others that the trial owes you better monitoring in this situation. Have you looked up the trial number at clinicaltrials.gov to see who is overseeing the trial? Knowing that might be a starting place for insisting that one of the specialists involved looks into your case and orders any appropriate extra testing. Don't let anyone just write you off!
One cause of a raised LDH is anaemia (ie you are destroying your red blood cells too quickly): this would also explain you enlarged spleen. If you have anaemia, other signs (in your bloods) will be increases in bilirubin levels and (if measured) an increase in Reticulocytes (baby red blood cells). Other non-blood signs could be a greyer complexion, yellow eye-whites and yellower-than usual urine.
Auto-Immune Haemolytic Anaemia (AIHA) can be caused by CLL (between 5% and 10% of CLLers get it too) and I got this even though my CLL is nowhere near treatment levels. AIHA can be treated separately from CLL. From above, I am not sure if you have a CLL specialist leading your treatment - if you don't you should get one!!
Ask your clinical trial doctor. I was on the VIPOR trial for the full duration for my relapsed Follicular NHL. I used to email my VIPOR trial Dr in charge a lot. I did not have high LDH but I had only a very small tumor burden to get rid of as my previous CAR T did clean out a LOT of my cancer but still two small tumors left near my spine and aorta. I did have massive diarrhea with the VIPOR trial (the P was prednisone). the Prednisone was the worst for me as it increased my B/P from normal to way high. I had some A FIB and had to have a chemical cardiac revision but it went fine and no more AFIB after trial was finished. I also had massive diarrhea with the trial and the dehydration did a number on my creatinine and kidneys. I am slowly recovering from the trial and did get a CR. Best wishes to you. this is the trial info:
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