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Old Fri Nov 21, 2014, 07:58 PM
Barbara K Barbara K is offline
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Join Date: Oct 2012
Location: USA
Posts: 38
I don't know of any blood cancer in his family, but my husband's main problem is neutropenia and hypogammaglobulenemia (his serum protein electrophoresis tests come back abnormal, as do specific tests for IGG, IGM, and IGA), and his own father has always gotten sick a lot w/ respiratory type infections, and he mentioned having problems w/ anemia as well. Meanwhile, his mother has a lot of digestive type problems--irritable bowel, etc. And she has arthritis, a mild case of which my husband has (and they both have some psoriasis). So maybe something inherited is going on.

The doctors here also didn't seem to think there was a connection between his pancytopenia and hypocellular (for age) marrow and his low iron stores (ferritin around 4 upon diagnosis) and other abnormal numbers on various iron-related tests. His copper was also right at the bottom of normal, btw. So they ended up saying he had nutritional anemia (we don't eat meat) exacerbated by blood donation (he never donated that much, though), and that he also had suspected mild AA. To my mind that seemed too much of a coincidence. Nutritional anemia plus AA? Unlike your son, though, my husband did see his RBC levels (and hematocrit, etc.) improve to near normal levels as a result of taking the supplements, but they still remain below normal. And it just doesn't make sense that someone who eats an extremely well-thought-out diet would've ended up so extremely iron-deficient if something wasn't wrong w/ his absorption. He doesn't imbibe caffeine, for example--none of the usual red flags that might result in low iron.

As for learning to live with watch and wait, first let me say directly that for our situation watch and wait is good news. It does mean that they don't know quite what the problem is, which I'll acknowledge can be worrisome on the level of wondering whether we should be doing something we aren't. So I definitely keep an eye on these forums and other sources of info, just to see if any clues might pop up worth pursuing. But my husband is over 50, not 15; he's my husband, not my child; and he doesn't have an older brother or father who had cancer. So the tremendous stress and anxiety you are feeling is more than understandable and certainly exceeds my own.

Your son's doctors may have reason to feel confident that something more is developing, but maybe they are also just less inclined to offer up an optimistic view than my husband's doctors have been? My husband's former hematologist told him that she had a patient with a profile similar to his who had been stable for over 10 years. I took a lot of comfort in that. All the same, I talked with my neighbor, a geneticist, about my proclivity for doing internet research (albeit from good sources such as this forum and actual medical journals that are available online), and he endorsed doing it, including my ongoing speculations about the possible role that nutrition/absorption issues might be playing in his bone marrow, blood production, and immune system. He said that even very good doctors still have their attention split among many, many, many patients, and that a diligent family member can often be the person who helps connect the dots.

Just as one example, I remember reading one time a medical journal article that speculated that maybe the human body naturally reduced its iron stores as a way of fighting off cell mutations, something like that. Since that time I've never managed to dig up more information that might clearly help me connect the dots in my husband's case, but it's clear there's just a lot they still don't know about the underlying causes of various bone marrow failure diseases. So that helps me stay reconciled to watch and wait, too. We're watching over our loved ones and waiting eagerly for new medical research to unfold.

Take care!
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