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@khnielsen

Your information is waaayyyy over my head. I was dx in 2000 and so much has changed. I remember they said something about light chains and that's about it. I have had thyroid cancer since then but I was warned that the total body irradation I received as part of the experimental protocol would increase my risk of seconday cancers (also have skin cancer, but doesn't everyone from my 50s generation?)
I hate to hear that your number are increasing. It must be terrifying for you. If you need a friend to vent to, I'm both a survivor and a therapist. Reply to me and we'll switch contact information. It was essential and soooo helpful for me to have someone who truly understood when I was going through this. Not just the cancer part, but the family/friends part, the job, the finances, etc. Sending you love and positive energy,
Karen

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Replies to "Your information is waaayyyy over my head. I was dx in 2000 and so much has..."

There are antibodies that the body makes to fight diseases. There are five kinds IgD & IgE are very rare. The other three in descending order of rarity is IgG, IgA & IgM. IgM is rare compared to G & A and sadly that’s the one I have. Another classification is Kappa or Lambda. The last classification is light chain or heavy, which part it was formed from. Think of it this way, see the letter “y” the two upper parts and the bottom part. The shorter ones would be light chain and bottom part would be heavy, if I remember correctly.

Now in the immune system, you have two cells that are the fighters of the body, they’re “B” cells, they’re the first line of defense. Then theirs “T” cells, these cells are killers cells. They were made from having other diseases and remember how to kill the invader’s. With me so far? Now my problem is I have Kappa light chain IgM MGUS. Google MGUS because I forget how to spell its meaning. My MGUS was most likely caused by a weed killer I used near my garden and ate the tainted vegetables for over 30 years. I also believe that’s why I have these precancerous cells roaming around my body. My brother got Multiple Myeloma from being exposed to Agent Orange and died from it in the 90’s.

Understand so far? My bloodwork shows my “B” cells are being reproduced mutated and crowding out healthy ones in my bone marrow. Which is also showing my lymphocytes are being produced below normal in numbers, (not good), while my neutrophils are being produced with above normal numbers (not good). What does this all mean, my immune system is compromised and is fighting a losing battle against a strong and dangerous opponent such as cancer. What type, the two I’ve already mentioned Non Hodgkin’s Lymphoma or Waldenstrom Macroglobulemia, NHL & WM for short.

Now, depending on how my MGUS progresses, which my last bloodwork in May, shows it’s going the wrong way, it could progress into a more dangerous form of NHL or WM. Right now, my blood is in the 1 in a million range that others have the same condition, meaning only roughly 335 other people in the entire country has it like mine. If my MGUS progresses yet a very rare, my statistics changes to 1 in 3.5 million or roughly just under 100 other poor souls in the United States will have it like me this year. Ya know what’s crazy, from all the new symptoms I’m presenting, it feels like it’s heading for the worst possible scenario. I even wrote on my medical calendar on June 4th, just 7 letters the makes 3 words “I GIVE UP!”

It’s a good thing you’re a therapist because I’m crying right now after writing all that because my heart is so fragile, its read to stop any second. Seriously, I was born with a 1 in a million heart birth defect known as WPW or Wolff, Parkinson, White Syndrome and my doctor warned me I could die between the first half and the second half of a heartbeat. Fantastic huh? I always tell a new doctor that I’m a “Freak of Nature” and to throw away your textbook knowledge because I’m not in it. Sorry for taking up so much of your time. I wrote a poem a few years ago that ends like this, “If this is how I have to live, I think I’d rather die!” Seems very appropriate because of the way my life has turned out, health wise.

Disclaimer: This is NOT a suicide admission.