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packgb19 (@packgb19)

Does anyone have amyloidosis?

Blood Cancers & Disorders | Last Active: Nov 18, 2019 | Replies (13)

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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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Replies to "Hello @rhamrin. "This hasn't been an easy ride, but endurable," is a realistic and positive way..."

Hi Justin. I am doing well overall. I struggle with fatigue, brain fog, and other side effects of the maintenance chemo regimen I'm on. But I have a lot to be grateful for. I'm able to survive on long term disability, along with SSDI, and feel blessed to have the time to recover. I had an auto transplant, that is easier than the allo, since I used my own stem cells and avoid graft versus host. I did, however, have a very difficult time with my transplant and am glad to be past it. My half-sister has a friend whose husband has hemophilia. I've heard it can be quite difficult as well. As far as my way of looking at cancer, it's a long story! But I do write a blog called Incurable Blessings, which I started about two months after my transplant. Writing has been cathartic. It helps me process all that has happened and allows me to connect with others — one of the the biggest blessings of having cancer.

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.