1. < Blood Cancers & Disorders

Does anyone have amyloidosis?

Posted by packgb19 @packgb19, Nov 12, 2019

Does anyone know a person that has Amyloidosis? I believe it's directly related to Multi Myeloma? Please advise.

v/r
Patrick

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nick0820 | @nick0820 | Nov 14, 2019
In reply to @JustinMcClanahan "Hi @nick0820. You mentioned you have amyloidosis but your tests results and symptoms don't meet the..." + (show)
@JustinMcClanahan

Hi @nick0820. You mentioned you have amyloidosis but your tests results and symptoms don't meet the criteria yet for multiple myeloma. Are you in a waiting & watching protocol right now with your amyloidosis?

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Good Evening Justin! At this time no additional protocols are in place relative to Multiple Myeloma. I have been diagnosed with only Amyloidosis and have just completed the Auto Stem Cell Transplant on August 12th. I tolerated the procedure fairly well and have been home recuperating since my discharge at the end of August. The most difficult time for me was from the effects the high dose chemo necessary for the transplant. I continue my follow up with my nephrologist ( Amyloidosis was affecting kidneys only) for labs and PET Scans etc. Overall, I’m truly blessed.....

REPLY
packgb19 | @packgb19 | Nov 18, 2019
In reply to @JustinMcClanahan "Hello @rhamrin. "This hasn't been an easy ride, but endurable," is a realistic and positive way..." + (show)
@JustinMcClanahan

Hello @rhamrin. "This hasn't been an easy ride, but endurable," is a realistic and positive way of talking about dealing with a rare disorder or cancer. While I don't have a blood cancer, I do have a rare blood disorder (hemophilia) that can cause issues that are difficult to deal with. I'll remember those words, not easy, but endurable. If you don't mind me asking, how are you doing post-transplant? Was it autologous or allogeneic? I have heard one is more difficult than the other.

@packgb19, you mentioned you were starting chemo. If you are comfortable sharing, how did your first treatment go?

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My first 2 Chem treatments are going ok! I found out on my blood tests from last Friday 14th of Nov 19 that my:
Kappa Light Chain, Free Serum is now 8.00 (normal is .33-1.94)
Lambda Light Chain, Free Serum is 1.32 (normal is .57-2.63)
Kappa/Lambda Free Light Chain Radio is 6.06 (normal is 0.26-1.65)

Should I worry about this now, or wait until I'm seen at Mayo next Monday the 25th of Nov 19?
Please advise very worried.

v/r
Patrick

REPLY
seanw | @seanw | Nov 18, 2019

Mayo will get those numbers and review, But it might be early on the treatment to get to concerned on the numbers

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