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MCL Update

Went to see my VA oncologist on Wednesday. I'm still not completely comfortable with him just yet. He seems conscientious enough, and is willing to spend time talking with me, going over the various options available, but at times he's difficult to understand (he has a strong accent), and he is pretty young. Of course my Kaiser oncologist is young as well, so I can't really hold that against him.

He's also convinced I have Splenic Marginal Zone lymphoma (SMZL), not MCL, but I did point out that with the t(11;14) translocation, SMZL is not a likely diagnosis. I'm not sure he was convinced though.

In any case the treatments would not be much different, and he expressed a willingness to use Rituxan, as a single agent therapy initially, as the prospects for beginning some sort of treatment draw nearer, which is what I was hoping to hear.

So I am adapting, and I do realize at my age change is difficult.

Anyways, my counts were basically stable, including my hemoglobin and platelet counts. Platelets were even up to 194 thou/cumm, but I have always found the VA lab to be slightly higher in all readings, even with the same reference ranges. Obviously it has a lot to do with the equipment and the techs interpreting the results.

There was also something new this time on the report, hypochromia. Briefly speaking, hyprochromia is an indication of a lighter than normal color of the red blood cells, obviously due to my anemia, and likely resulting from an iron deficiency.

I know I eat plenty of red meat and other foods with iron, so maybe it's time to break from my policy of not taking any vitamins or supplements, and start taking an iron and folic acid supplement. A few people, including my Kaiser oncologist, have suggested I take them, indicating they would only be of benefit (much like a flu shot I guess), but I have been stead fast in refusing.

But who knows, maybe it will help with the overwhelming fatigue I have been dealing with lately, and even delay the progression of my MCL and the necessity for more aggressive treatments.

Ok, I guess I've talked myself into it. I'll just call it the start treatment instead of the taking of vitamins or supplements.

Comments

Altaloman said…
Thanks for the update and the details on your diagnosis. The hint that you may not have MCL could be good news?

One of the realities for all of us in the post-60 age range is that our encounters with most care givers are with the younger generation. That's not a bad thing because they are most likely to be read and informed about the latest in medicine for their specialty. And your hesitation to jump head-first into any treatment plan is understandable in light of a certain skepticism about the medical establishment. Yet, when you see improvements in your health and well-being (including longevity with the diagnosis), you must have confidence in those with whom you have placed your trust. Keep up the fight!
Marc said…
Thanks Mike, and yeah I know all to well, everyone is younger than me, so that really isn't a complaint. It was more just an observation, and usually they are more receptive to learning and working with the patient.

And my reason for not jumping head first into treatment, has nothing to do with my skepticism with the US health care system. Treatment options are basically the same any where in the world, and there hasn't been much advancement in cancer treatment over the last several decades. And in the US you are more likely to have access to what ever advancements there are.

My reasons for wanting to delay conventional treatment as long as possible, has more to do with the statement "sometimes the cure can be worse than the disease." I've never really considered the infusion of deadly chemicals into the body as being medicine.
Marc said…
I should have said, that not jumping into treatment has less to do with my skepticism of the US health care system than it does with the fact there have been very few advancements in cancer treatments over the past several decades, and the treatments that are available can't really be considered medicine.
Alan Posner said…
Marc,

The number one cause of iron deficiency anemia in men (women menstruate so it's not that unusual) is occult GI bleeding, not inadequate intake.

If your anemia is indeed from iron deficiency (you should have a serum ferritin and/or Fe/Tibc to confirm this) you need a colonoscopy and EGD.

I'm surprised your oncologist didn't suggest this.

People with one type of cancer tend to be prone to others.

Not trying to scare you, but you should bring this up with your oncologist.

Alan
Marc said…
Well you didn't do a very good job of not scaring me, but I will do some additional research.

What you say is likely correct about iron deficiency, but how about when you factor in the fact I have a blood [technically lymphoid] cancer, and my bone marrow isn't functioning normally. It [the bone marrow] just may need a little extra help in the form of an iron and/or folic acid supplement.

And yes, people with one type of cancer are prone to others [secondary cancers], but that is usually the result of having had chemotherapy, which is the norm, almost immediately, after being diagnosed.

I am scheduled for a BMB on the 12th of May, so I'll ask you my doctor about scheduling a colonoscopy. It's been almost 8 years since my last one, so I am probably due.

Thanks,

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