I have meant to post something I learned a number of months ago, but I forgot to do so. On a visit to my Endocrinologist, who I only go to because almost ten years ago I decided I wanted Testosterone shots, he reviewed my three month blood work. Testosterone can cause problems with some men who take it, but not with most men. Every three months he sees me after I've had blood work, and every two weeks I get a shot from one of his Medical Assistants in the office.
When looking at my blood work her mumbles to himself this is good, that is good, etc. I heard during those mumbles "and your red count is good". I asked him what does my red blood cell count have to do with this? He said one of the side effects of taking Testosterone is that it can raise your RBC, and if it gets too high we would have to stop treatment.
That immediately set off a Red Light and Blaring Beeps as if from a loud speaker. Those of us on Watch and Wait should know that it isnt the WBC count the Hematologist worries about. It is the RBC and Platelets instead. CLL will ultimately lower your RBC too much, or the Platelets too much. Too low RBC can cause a failure to have enough Oxygen in your body, and too few Platelets can cause internal bleeding (how my Father died). I'm not forgetting of course the lowering of the Immuoglobulin levels, which then cause too many infections, but I'm focusing here on RBC.
So if Testosterone can raise my RBC, and CLL lowers my RBC, Bingo!! I immediately said this to my Endo, and he answered that I was correct. When I just saw my Hematologist I brought the subject up, and She laughed and said "That's True". So unless I'm missing something here, wouldnt it make sense for most men with CLL to be taking Testosterone supplements? While it is true that you can say that Testosterone can have harmful side effects, they monitor you carefully looking for an early clue to those things. If necessary they stop the supplement. Since one of the major problems appears to be raising the RBC, and we have a built in prevention for that, maybe it could help keep the RBC level throughout our entire Watch and Wait. My RBC has been the same exact number (variation on three month readings of about 0.05) of 5.06. I think I'm right on this one, and some of you might want to ask your Hematologist about it.
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wizzard166
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The problem with your suggestion is that CLL removes bone marrow capacity. Anything that boosts red blood cell production, e.g. Erythropoietin (EPO), just forces the remaining functional bone marrow to work harder. It doesn't address the underlying cause, which is the CLL.
Neil I understand that the reason RBC count drops is because the abnormal white cells don't die; instead they stay in the marrow and bloodstream. This crowds out RBC and Platelets. If Testosterone increases RBC production, and granted no one fully understands why, it should therefore keep the RBC number higher than if Testosterone wasnt being used. That is just common sense. What you did say that i hadnt thought of, is that the process is forcing the Bone Marrow to overwork. I do know that overwoking the Bone Marrow might ultimately cause it to "burn out", and I wish i understoond what that really means.
My Daughter unfortunately suffers from Polycythemia Vera, which is overproduction of RBC. Aside from deadly issues such as blood clots, I've understood that ultimately the over working of the bone marrow will cause it to "Burn Out" I've never researched what that really means, what actually happens, but i guess overall means it stops functioning. There is no treatment or cure for Polycythemia Vera, other than blood letting every so often to decrease the RBC count.
How ironic and sad is that. A Daughter who produces too many RBC, and her Father who produces too many WBC. If one believed in Fate, then who or whatever controlls that fate must have a sadistic sense of humor.
I think the RBC and platelets go down In CLL because the overproduction of lymphocytes crowds out production of other blood cells in the bone marrow. What is you lymphocyte count?
My WBC is 35000 with the Absolute Lymphocyte Count being 26,300. You are correct that the RBC count does go down because of the crowding out of them by increased WBC. Lymphocytes are part of the total WBC, but we cannot forget the numbers of Neutrophils, Basophils, etc. The overabundance of overall WBC in the bone marrow decreases the space for the production of RBC and Platelets. That is true, and I'm not sure how the Testosterone hormone increases RBC, and frankly the medical profession doesnt fully understand it either (I've looked), but it is a fact.
CLL is an interesting disease, and affects each of us differently. I had to start treatment because it was crowding out my Neutrophils, exposing me to numerous infections. My lymph nodes were unaffected, and my RBC count was trending down but in the normal range.
I know it's not exactly the same thing, but HRT treatment for men exists, but it's not widely issued on the NHS... I think that is rather sexist...
The comment about CLL lowering the RBC should contain the usual CLL caution that that statement is NOT true for all of us.
Since my diagnosis over 20 years ago my RBCs have stayed consistently at around 4.30 (Range 3.8 - 5.3). And my BMB showed hypercellular marrow with heavy (90%) infiltration
(before Ibrutinib)
My haematologist focuses more on my ALC counts ,not the RBC.
Of course the fact that CLL lowers the RBC count might not end up being true for everyone; that is simply common sense. Maybe that person went into treatment before the RBC count got too low. With respect to yourself, and thinking that your RBC has never been lowered by CLL, you provided your range throughout your years with CLL and it was 3.8 - 5.3. Normal is 4.2 - 6.3, so your range was from Low to Middle. I wouldnt be too thrilled if mine got down to 3.8. Then too the doctors would be considering other factors regarding Hemoglobin and Oxygen saturation.
The ALC is one of the primary factors they look for; however, I've been told by two highly respected Hematologists and CLL Specialists that their bigger concern is how much your body is affected as the White Count increases. When I was concerned that my WBC had escalated alot in a short period of time, my Hematologist said they don't care as much about the Absolute count; instead, they look for signs that the body is being harmed by the increased Absolute counts. They wait for treatment until the RBC goes down too much, or the Platelets go down too much, or the body is getting too many increased infections do to the lowered immune system. They of course are also looking for spread to the Spleen, Liver, or Lymph Nodes. To think that Specialists are not concerned about the RBC lowering, might be a misunderstanding of what your own doctor told you.
hi Wizard, thanks for the clear explanation. Looking back, this is also my experience, though it only became clear after reading your comments. It is difficult to look at treatment options from a doctors appraisal, when concern is for what is happening to me. Thanks, Gary
Low hemoglobin is certainly one of the many factors for which a hematologist / oncologist may recommend treatment, and there are many others. Low neutrophils, low thrombocytes (platelets), Lymphocyte doubling time, very large lymph nodes and or spleen, frequent infections, and so on. Some members here have not had alarming blood characteristics, but started treatment because of debilitating fatigue. The recommendation to treat is such a complex one, that it is best advised by a hematologist oncologist who specializes in CLL, not just a general hematologist oncologist. I think if you have a legitimate reason for testosterone treatments, it's nice that the side effects might help with CLL causing low hemoglobin. But I think the hematologist would need to be aware of this, as the endocrinologist should be aware of CLL. I am sure though that a hematologist oncologist who is good with CLL must be aware of testosterone and other ways to raise red blood levels like EPO. Since low hemoglobin is just one factor in many potential issues that we may have there must be a reason why testosterone is not prescribed for all male CLL patients. Certainly overworking the possibly already taxed bone marrow may be a reason. Perhaps if what little working bone marrow we have is forced to increase hemoglobin production, then other vital blood components also produced in the marrow may suffer, like neutrophils and platelets for example. I think it's good that you mentioned it to your CLL specialist. But I would be cautious about recommending testosterone treatments to everyone, and especially to the female members here!
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