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So, yesterday I saw the hematologist. He was very kind and full of questions and also seemed to be knowledgeable, however a bit dismissive about some things which I am so sick and tired of with doctors as I'm sure most people here can relate to.
So, as for my previous blood results, he said he highly doubts it is MDS. He is saying that the low wbc, anc and alc counts have been hovering for a while and that because of my chemotherapy that may just be where they are going to stay. The chemo could have diminished those counts but he is not concerned and can show me countless numbers of prior chemotherapy patients who have similar counts. Ok, however I showed him blood results from about two years ago, after chemo but before the counts were lowered where those same counts were normal. My ferritin level from a yr and a half ago was 17 which he seemed concerned about. havent had it checked since then.
He thinks I have an iron absorption problem, and is doing a complete iron work up, and Greg I did ask for Copper, Vit D, etc which he agreed to test. He kept referring to my red counts as normal, but clearly they are not. Maybe because I am seen at a cancer hospital they are used to looking at lower counts, but my counts are not normal, they are low and have gotten lower over the past year or so.
Oh, and when I mentioned the cytokines being responsible for fatigue as opposed to just hgb, he was emphatic when he told me that absolutely not, the hgb in MDS is the only factor which would cause the fatigue. Hmmmmm.....
AND, he was telling me that my Neutrophils and Lymphocytes were fine, however he was quoting the relative %'s and I was trying to ask him if the absolute counts meant more and he literally talked over me and told me the relative % was most important. Again, Hmmmmm, kind of not what I've been reading here.
He was up in the air about doing a BMB, but I kind of insisted about that one! I mean, I dont WANT to go through it, but hellooooo, doesnt it make sense to just do it? So yes, I am having one next Monday. he told me he is primarily looking for cellularity. Question: does that mean that is all they will look for as to the MDS? Or do they have to look at all factors? Mutations, blasts, etc??
As an aside, based on the amount of medications I have become allergic to and the rashes that seem to be appearing randomly, he is checking for Mast cell activation Syndrome. Interesting...... Never heard of it, researching now, could make some sense.
Please any input you have is extremely appreciated. I told him about these forums and he kind of eye rolled, (me thinks) and explained that many people here started with these counts. He didnt seem to think so. According to him, nothing in my CBC's makes him suspect MDS. This would be great news for me, however, I don't want to miss anything!! Last time a doc blew me off for symptoms, 8 months later I was on the floor in severe pain and lo and behold, a fist sized tumor was squeezing a bunch of blood vessels..... so, I'm a little sensitive to being taken seriously I guess.
Thanks, sorry so long, anyone have any advice on what to ask before the BMB?? Anyone here start with counts like mine? ( above)
Vicki
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