Living with MCL

Another person expressed some concern today, after my last post, that I may be starting treatment soon. Well, let me clear up any confusion. That isn’t the case.

It’s just I get into these moods every now and then, when I can’t help but question how much longer can I be so lucky? Especially when I look at Edie, and so many others in similar situations to me. Why have I been so fortunate to be so active, and not require any treatment for over 8 years, despite having a terminal illness?

It just boggles my mind, and I find it difficult to believe it can go on much longer, but ………….

Anyways, I had an appointment with my oncologist today to review my latest BMB and cytogenetic test results, and guess what? I have Mantle Cell Lymphoma.

Actually I knew that all along, but if you remember back in April, I posted how my new oncologist was convinced I had Splenic Marginal Zone Lymphoma. Well, he’s now convinced otherwise.

We also discussed my low hemoglobin/fatigue, and if it is the result of iron deficiency, or just a manifestation of my lymphoma. He’s convinced, based on the my ferritin levels in the blood, iron stores in the bone marrow, along with some other tests, that I am not iron deficient. [And I agree.] As further confirmation he also checked my haptoglobin levels which were actually higher than normal. It would have been low if I were iron deficient.

(We also discussed depression as a cause of fatigue, and suggested drugs, but I refused to go there!)

So I think it’s safe to assume I’m not iron deficient, but if I wanted, he suggested I continue taking an iron supplement (65 mg of elemental iron per day), for another two months, and see if my hemoglobin increases any, as even more confirmation of that fact.

I’m gonna have to think about that for a bit though.

Just got the results of my bone marrow biopsy, and while nothing seems to have changed MCL wise, the report did indicate “Stainable iron is present” in the marrow.

Despite the amount of stainable iron not being quantified, and my having started taking an iron supplement prior to the biopsy, there are other indicators (MCV having always been in the normal range for one, and no increase in my hemoglobin on my last blood test for another) which would lead even a layman, such as myself, to conclude I am not iron deficient.

So it’s back to the drawing board, and the realization that if I was stronger on the bike, as I originally thought, it was either because I was training more and with greater intensity, or the more likely scenario after considering today’s ride, it was all just the “placebo effect”, and I have not gotten any stronger at all.

Oh well, at least I can stop going through all the gyrations I concluded were necessary to insure I was absorbing the maximum amount of iron (I stopped taking the iron about a week ago), and I can put the colonoscopy on the back burner for now [which is also a great relief].

But to be sure there is still not some other underlying [maybe more sinister] reason for my low hemoglobin, other than my MCL, I have been told, by my resident expert, I should

check multiple stools for blood ……….. weekly for maybe 6 months or so

Now that sure sounds like a lot of fun.

That’s a bone marrow biopsy (BMB) for the layman out there, and it wasn’t nearly as horrific as I had expected. In fact, except for a little soreness right now (and getting worse with every passing moment), I would have to say it was uneventful. It helps to have a good strong doctor, and this was the first time I laid on my side, which may have helped.

Now it’s just a waiting game for the results expected by my next appointment at the beginning of June, but in the mean time results of my latest blood work were [somewhat] favorable. In addition to my hemoglobin increasing from 11.2 to 11.7 g/dL and my lymphocytes still showing a favorable trend (dropping to 76.6 thou/cumm), my iron has increased since starting to take an iron supplement.

Although my iron and % saturation were still below normal, they were slightly improved (note the different reference ranges from my last test), but my total iron binding capacity is now in the normal range (which I’ve since discovered isn’t as significant as I would have hoped). In addition, my ferritin, Vitamin B12, and folate were all normal. The folate was even above normal [I was taking an 800 mcg tablet about every 3 days on my oncologists recommendation], so I think I’ll eliminate that.

They are also going to stain my bone marrow for iron to confirm the extent of my iron deficiency, and if I am truly iron deficient.

Now all I have to do is wait to schedule my colonoscopy, which based on how I’m feeling right now after the BMB, I’m even more hesitant to do.  I think I’ll hold off on for awhile, and wait for the results of the BMB to come in, and I have another chance to talk to my oncologist again.

It’s been two weeks since I started taking an iron supplement, and one question people have been asking is

Do I notice any difference?

Well that’s a difficult question to answer. Even if I thought I felt better, I would be hesitant to say yes, because I find it hard to believe taking an iron supplement for only two weeks could really have any effect. Then there is the obvious potential for a placebo effect. I want to think the iron is helping, so I rationalize that I’m feeling better.

So I have been answering “no”.

In reality though, I do [sort of] feel better. I’ve already put in 300 miles on the bike this month, and while I feel tired, I don’t feel any more tired than I have been feeling, and I rode really strong this weekend. At least that’s my perception. Plus, I think I’ve been sleeping better, not getting up as often during the night as before, but then again, that could all just be a placebo effect.

Oh well, hopefully I’ll learn more shortly. I have blood work scheduled for tomorrow, and an appointment with my primary care physician on Tuesday. I’m anxious to see if my hemoglobin and iron have increased any. I also have an appointment with my oncologist on Wednesday for a bone marrow biopsy. I’ll be quizzing them both.