Hi Everyone, I was diagnosed this October. My current WBC is around 15,000. I am Del 13q and mutated, so good markers. My 3 month blood draw actually showed a slight decrease in WBC, however for the third draw in a row my RBC and HGB have gone down. HGB is low end of normal and RBC is slightly below that. My platelets are fine and my oncologist said that since my blood cell size is normal this is not related to iron deficiency. So my concern is that my marrow is already having trouble keeping up with normal production. Could that be right even with my relatively low WBC numbers? Also my platelets seem unaffected. The other thing I was reading is that it could be auto-immune hemolytic anemia, but my LDH is low for that. Any ideas?
Recently diagnosed, WBC numbers stable but RBC... - CLL Support
Recently diagnosed, WBC numbers stable but RBC/HGB trending down
Did ur hematologist say he was concerned about AIHA? At ur next appt ask if they can test for it. Are you fatigued or get night sweats- how are u feeling? I was 13q mutated & was on
W&W 12 years before I needed treatment.
No Hematologist isn't too concerned, but I don't like the current trend. Everything says I should have a long W&W but if my hemoglobin starts tanking I might have to start earlier treatment.
Hi Nikitos, I would say that if your doctor isn't concerned, you don't have to be either...you won't know what your Hb will do in the next 3, 6, 9 months. It can stay at the current level for another few years before going down again. If it does go down again, there isn't anything you can do to change it...I know it's difficult and we feel like we want to be able to take control and do something but that's not the way CLL works. I would say be happy you are well and that your doctor feels happy with your results - that's the best position to be in when you are on w&w.
"Everything says I should have a long W&W"
You still may with your markers...or you may not. Your markers were a prediction of your cancer route, not a certainty. Some folks with your markers DO have to start treatment early - it happens b/c you see statistics and probabilities, but every disease path is unique.
Hi I had a similar experience with anaemia as my CLL progressed. I had B12 etc checked and all fine. I was told it was because my RBC had been crowded out. They didn't do anything about it but as time progressed, it made me very tired.
This is what I'm worried about it. Did they offer any kind of blood boosters to stimulate RBC production? If you've gotten treatment since then for CLL did that resolve your anemia symptoms?
It's not usual practice to offer Erythropoietin stimulating agents to counter anaemia caused by CLL bone marrow infiltration. Instead treatment for CLL is indicated when haemoglobin drops below 10 (or 100 - depends lab reference blood volume) and packed red blood cell transfusions are provided if haemoglobin drops below a lower threshold, (8.0 in Australia).
Neil
My story & numbers (WBC, platelets and HGB) are like yours with reduced HGB values over 2 years to 12.9 now from 14s during the 1st 3 years of W/W. My DAT and reticulocytes were normal so is not hemolytic anemia.
I have noticed fatigue with reduced endurance. Invested in fitness over past 25 years and have been able to keep up with most anyone previously, but it's different now.
As MisfitK notes the markers are imperfect predictors. Next CBC in 3 months.
Have you tried supplements to boost your HGB? Have you asked for a ProCrit shot?
Supplements will not boost your Hb if your bone marrow is failing/infiltrated. No matter what you "put" in, the factory is "broken" once it is full of CLL cells and won't produce enough healthy red blood cells (or any other cells as a matter of fact). The ProCrit shot would not help either, you can't produce more healthy blood cells if there is no space to make them. Your bone marrow might be able to function very well for a very long time though. Try to eat well and exercise, avoid stress, sleep enough...Once your blood numbers get bad enough to warrant treatment, the only way to get better will be through treatment. If there were other ways to get over this, none of us would need to be here discussing the various treatments. It really sucks, I agree...wish there was a quick and easy way out of this...you might be one of the people who never need treatment, you never know🙏🏻
Haven't tried supplements. Diet with adequate calories - not a lot of red meat but iron & folate levels OK. As AussieNeil notes below, my understanding is that anemia will resolve with CLL treatment. Did not ask about epoetin (ProCrit) since my HGB > 10 and there are associated risks.
Yes, the CLL can heavily infiltrate the bone marrow before lymphocytes spill into the blood, mine has.
If you haven't had a full iron panel, please ask for one. While the red cell size generally correlates with other things going on, it's not a guarantee. I am having some problems recovering from an AIHA, my reticulocytes are still low even though my cell size has normalized. So just looking at my cell size doesn't show there is still a destructive process ongoing, which the reticulocytes/my feeling exhausted does.
If you haven't considered a bone marrow biopsy, this is the definitive test to determining how compromised your ability to make cells appears. My cell counts outside of lymphocytes hadn't changed outside normal when I went to the doc feeling sick. A BMB showed almost complete infiltration. I started looking for treatments, and by the time I selected one & got started (clinical study out of state, so took some coordination) my counts started to be affected.
My Doctor said men my age (44) almost never have iron deficiency. I also just assumed the platelets would be affected as well as the RBC if the marrow is being taxed by CLL and my platelets actually went up a little. The Doc has me doing another CBC in a month and if the numbers keep dropping she'll order more testing.
CLL is extremely heterogenous; even people with the exact same markers we know to test can have very different experiences.
There's a concept called "regression to the mean" which refers to the fact it takes a number of blood tests, over time, to determine if something is actually rising or falling significantly. Minor fluctuations of various cell types are the norm. And in CLL, one cell type can be affected, or many. You just can't make any assumptions, especially early into the diagnosis.
The only thing one can usually say, is that this diagnosis is rarely urgently life threatening. It's hard to watch things unfold over time, but unless some unusual freak thing occurs, you just Watch and Wait. Or as a number of us say, Watch and Worry lolol!
What did your doctor mean? Do you have an iron deficiency or you don't? Is your doctor a CLL specialist or an oncologist or a regular haematologist? You will need a CLL specialist. A regular haematologist seemed shocked about "where did all the iron from your iron infusion go" 4 weeks after I had it...my CLL specialist wasn't...if your bone marrow isn't heavily infiltrated, taking iron supplements or having an iron infusion if your ferritin levels are low might appear to help a bit for a while but the problem is usually not the iron deficiency but the cause of it all which is CLL ...as Sofia pointed out - CLL is such a heterogeneous disease. You might be obsessing about your increasing lymphocytes and that might not be the reason to start treatment at all. Your numbers might be all good and you might still have to start treatment because of e.g. enlarged spleen, massive lymphnodes, reoccurring infections or night sweats. Some people start because the fatigue can be so delibitating that they decide it effects their quality of life too much...or it might be a low Hb or low platelets or a combination of all...there are so many options...I think it would help you if you had a CLL specialist on board if you do not have one already and once you do, trust them as they usually know what they do/don't need to worry about...they would also put your mind at ease as I'm sure they would be able to answer all your questions and explain everything properly.
My Doctor is a Hematology Oncologist. She seems very capable, but I did already speak with Dr Lamanna through the CLL Society free expert consult program. That was before my RBCs started going down. If and when it gets closer to treatment time I will seek out a local CLL Specialist for a second opinion.
That is great to know. You should feel reassured by that. You have a great plan in place.I know how hard it is when we are first diagnosed, I so remember the time and what I was going through...I was so worried about everything. I would slowly become depressed about my Hb going down and my lymphocytes going up...and do you know what - I felt good at the time. I so wish I didn't focus on the numbers and what ifs then. I should have enjoyed the few years I had left on w&w while I was feeling good. Instead, I cried a lot and felt miserable all the time...the lymphocytes continued going up and my Hb continued going down. It's the nature of the disease. There was no way to stop it. It was only when I started to feel unwell as a result of my CLL that I realised I should have not put myself through all of the stress and feeling low during the time I was well. If there was one thing to advise someone who is newly diagnosed it would be this...focus on the positives during each visit and most importantly on the fact you feel well and healthy. There will be negatives and numbers will most likely get worse but for now, enjoy life...put all your energy into into that. I hope you have many many years of a long and boring w&w ahead of you.
Hello Nikitos1979
The issues you raise are concerns, however you are young for a CLL patient. How are your exercise and eating habits? I have very aggressive CLL but was much older when diagnosed. I had declining RBC and Hemoglobin before treatment. Due to shortness of breath, I started fast walking 3+ miles a day and making sure I was taking in enough protein and iron in my diet. I felt that the walking stimulated my body to create more RBC. It did not stop me from have treatment but did help the breathless. Your body cells are made of protein and some red meat is best source of protein and iron.
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