No treatment required

 Diagnosis, My MCL  No Responses »
Jun 162010
 

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.

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 Posted by Marc at 7:40 pm  Tagged with: , ,

It was the placebo effect

 My MCL  No Responses »
Jun 022010
 

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.

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 Posted by Marc at 3:08 pm  Tagged with: , ,

My 3rd BMB

 My MCL  No Responses »
May 122010
 

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.

Test Result Ref Range
IRON 31 35-140 mcg/dL
TOTAL IRON BINDING CAPACITY 270.2 245-400 mcg/dL
IRON SAT 12 15-50 %

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.

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 Posted by Marc at 11:17 am  Tagged with: ,

At least I’m sleeping better [I think]

 My MCL  5 Responses »
May 092010
 

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.

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 Posted by Marc at 8:18 pm  Tagged with: , ,

Why is everything so complicated?

 My MCL  4 Responses »
May 042010
 

Once upon a time, I was going along fine resigned in the knowledge my time on this earth is some what limited.  Even knowing I was anemic didn’t seem to phase me. Except for some fatigue [possibly more depression related], I was still feeling reasonably well. At least as well as an anemic, 61 (soon to be 62) year old with a terminal illness could feel.

So why in the world did I have to notice the word “hypochromia” on my latest blood test? It was on the two previous tests, and I didn’t notice it. So why now?

If I hadn’t noticed it, I would still be merrily rolling along [pun intended] riding my bike 150 to 200 miles a week, drinking 4 to 5 cups of green tea a day, working 2 days a week, even planning some vacation or what not, with the sole intention of trying not to focus on anything negative.

But now that I have, it’s hard not to focus on the negative. Especially the colonoscopy, and likely endoscopy, needed to help determine the cause of the iron deficiency. I’ve had both procedures before, and neither were the most pleasant to endure, and which will be made even more problematic due to my enlarged spleen. (For all you doctors out there, it extends 4 fingers below my rib cage.)

So while I wait for my colonoscopy consultation (for which I’m not in any hurry), I’ve started taking an iron supplement, in the hope I can reverse the deficiency, knowing full well that any improvement may only be masking the real problem, and that a colonoscopy will still be required. But even that is presenting some issues.

I’ve learned, after doing much reserach, that taking an iron supplement is not such a simple a task. For one thing, the body only absorbs about 10% of the iron it consumes, and that many things can interfere with the absorption, including green tea, chocolate, and even wine, 3 things I partake in quite often, just to name a few. And then there’s vitamin C, something I have avoided (at least in supplement form) since my diagnosis with MCL, which aids in the absorption of iron.

Consequently, I now keep track of when I eat (and drink green tea), so I know when to take the iron (determined to be 1 hour before and 2 hours after eating) to maximize absorption.

Unfortunately that has caused another issue. Like the fact, it’s 10 AM and having just finished a cup of tea, means I can’t take an iron tablet until noon, and can’t eat lunch until 1 PM, but I’m hungry now.

This is when will power really comes in to play. I just hope I can hold out till noon, when I can at least eat the orange I brought with me (remember Vitamin C aids in the absorption of iron) when I take the iron.

Oh well, if nothing else this should at least aid in my quest to lose some more weight.

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 Posted by Marc at 10:15 am  Tagged with: , , , , ,

The results are in

 My MCL  5 Responses »
Apr 282010
 

And I am iron deficient, big time. [Which would account for my low hemoglobin]

Test Result Ref Range
IRON 30 59-158 mcg/dL
TOTAL IRON BINDING CAPACITY 231 250-420 mcg/dL
IRON SAT 13 20-50 %

My Ferritin levels were good, but that could be because Ferritin is also an “acute phase reactant”, that is sometimes increased with acute or chronic disease. Folate and B12 levels were also within the normal range.

The only problem now is determining what is causing the iron deficiency, which in the case of men, is [very] rare.

My oncologist has given me a Globin Fecal test to perform, and has scheduled me for a consultation with a colorectal surgeon to discuss performing a colonoscopy, which could be problematic because of my large spleen.

In the mean time, I’ve decided to start taking an iron supplement, it’s only the quantity that is causing me some consternation.

I’ve been told by a very knowledgeable person that to overcome an iron deficiency, I need to be taking 300 mg of iron sulfate, 3 times a day. Using the atomic weight calculation that would be equivalent to over 300 mg of elemental iron a day [36.7%]. That’s a lot of iron, and it does not come without side effects.

Fortunately additional research has led me to learn that most ferrous sulfate supplements only contain about 20% elemental iron, which would be equivalent to 180 mg of elemental iron per day. Still a lot of iron.

I discussed that with my oncologist, and while she did agree, she also felt it could be problematic, and suggested 64 mg of elemental iron would be a good quantity to start with, and see what happens.

Obviously I preferred that suggestion, but instead have decided to start with 54 mg [that's 3 - 18 mg capsules a day]. It just so happens I had already purchased a bottle of iron fumerate capsules containing 18 mg of elemental iron.  I will build from there, and see what side effects occur, and if there is any improvement after next months blood test.

And who knows, maybe I’ll even see an improvement in my cycling ability, if I can get my hemoglobin into the normal range, or at least close.

Gerry beware!

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 Posted by Marc at 7:23 am  Tagged with: , ,

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