I can not be alone. My pals will help me out.
Hi Guys & Gals.....Not new.....I am 2 years out. 2 year screening was good, except they want to do the scans again in 3 months.?? Is it normal to feel like the chemo takes over , you have no control?? I have had better days where I felt I was progressing well. I was doing more and was ok with the progress....Now I can not get anything done, back to spinning in in circles I feel like I am getting worse,,,I can not get anything done....I feel sick everyday.. Has this happened to anyone??
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Everyone is different. Chemo almost killed me and we had to stop. I completed four sessions of six and also did radiation. Just celebrated the third anniversary of my diagnosis. May 1 is my surgery anniversary. I am NED thank goodness. I am chronically anemic and have good days and bad. Yesterday I did weekly grocery store trip. Took a toll. I could hardly put one foot in front of the other. Next week it might be fine. I take it one day at a time. Just grateful to be alive. Wishing you all the best.
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Hi:<br />
<br />
I am leaving the "smoldering" phase and have anemia (red blood cell counts at 2.6 or sometimes lower). Sometimes over the counter iron helps..>I'm going to an "integrated" doctor who's also giving me 30 mgs of "iron chelate" (Prothera).<br />
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Just wondering how you deal with anemia. I agree with you - it's awful.<br />
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I was told that maybe a bone marrow transplant might help end all these awful symptoms.<br />
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Bill<br />
Hi,<br />
My doctor took a wait and see option but checked my blood weekly until she finally decided we needed to do a bone marrow biopsy. Don't want that again but I survived. Results: no cancer. My red blood cells just don't produce. Slowly I have gone from 2.5 to 3.2 after two years of monthly B12 shots and good diet. I now have blood monitored monthly and shots for life. Some days I have enough energy to handle life buy not work. Other days just getting dressed is all I can do. I concentrate on being grateful. How do you cope?<br />
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Jane
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Hi Jane:<br />
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I'm jealous. I'd love to keep a 3.2.<br />
<br />
I had a couple of infusions, and that helped...for a while. Over the <br />
counter iron has helped.<br />
Did they say a reason for your RBC drop?<br />
<br />
Mine's blamed on either multiple myeloma or an inflammatory illness I <br />
have....They call it "anemia of a chronic illness." I could also have <br />
MDS (myelo displastic syndrome). It only gets worse.<br />
<br />
I may have to have a stem cell (bone marrow) transfer.<br />
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Do you work?<br />
<br />
But I do sometimes feel awful...Hopefully, I find a solution. <br />
Ironically, I think I have B-12 in some of the "supplements" I take -- <br />
I'll have to look.<br />
<br />
Bill<br />
Bill, No, I can not work.....I was self employed.....not working has me broke...
Hi, are you on any type of medication or supplement - either prescription or over-the-counter? And does your bloodwork show any abnormal results (low/high blood counts, electrolytes, etc.)
The multiple myeloma doc thinks the anemia is more a result of the inflammatory illness than the myeloma. I do take a ton of supplements (I go to an integrated doctor as well)..and they include B-12, Vit D and also iron chelate). Sometimes, I take an electrolyte drink...blood tests show I have a drop in red blood cells (plus, deformed blood cells...thus the thought I also have mylo-displastic syndrome (MDS). All this odd stuff hit me in the past three years...I'm in my late '50's. What a surprise (to put it mildly). Hope you're well. -- Bill
Hi Bill, Interesting thing about B12 deficiency. A close relative of mine - very healthy his whole life - started having severe neurological problems, which got so bad he could barely walk or stand. Primary doc was at a loss (suspected a brain tumor) so sent him to a neurologist who, lucky enough, run the specific test for B12 level. The neuro said he had never seen such a low level and started him on injections. He will likely have to get them forever but luckily, the neuro damage was reversible, so he's back to his old self. When I did some research on B12 deficiency, I was astounded at the damage it causes - people committed to mental institutions, permanently paralysis or other neurological deficits - even death. How could a simple vitamin deficiency be missed for so long that these folks had such disastrous symptoms? The neuro explained that a standard blood test used to reveal B12 deficiency b/c the RBCs got large - which is easily seen under a microscope. But then they started adding folic acid (B9) to grain products (to prevent spina bifida - a neural tube defect - in fetuses). Now, though you may be deficient in B12, your RBCs do not become enlarged b/c of the presence of B9. So when you get routine blood work these days, they will miss the B12 deficiency unless they run the specific test to measure the level. And yes, we all run out and had the test done 🙂 You seem to have covered all your bases, between the MM & integrated medicine docs. I really hope you find the magic combo that will relieve your symptoms - or better yet, solve the underlying issue. Kind regards, Faith