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

@packgb19 Hello Patrick: We do have some members on Connect who are discussion Amyloidosis. Here is a link to one of those discussions. Take a look and feel free to click "Reply" to ask questions from any member or to get more information.
https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/?commentsorderby=DESC#chv4-comment-stream-header
Here is a link to a Mayo Clinic website that explains more about Amyloidosis,
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
Patrick, have you been recently diagnosed with this disorder?

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Hi Patrick! I was diagnosed with Amyloidosis in March of this year, however I do not have Multiple Myeloma. My symptoms and test results did not meet the criteria/metrics for a myeloma diagnosis.

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I have stage II multi myeloma now. With 3 cancer ( left shoulder blade, upper right rib cage and in the back of brain) tumors, going to Mayo in MN the whole week of Thanksgiving…. 🙁 all for more testing. I will know this Thursday if my dr., tells me if I have Amyloidosis as well. All my blood work last week came back highly elevated (not good for me)

v/r
Patrick

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All Prayers are needed. God Bless and God's Speed to all. The Lord is my Shepard, I believe in God will carry me through thru, even when I have my Stem-Cell Transplant in the next couple months, I start Chem tomorrow as well, injections once a week and other three more taken daily :(((

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@packgb19

I have stage II multi myeloma now. With 3 cancer ( left shoulder blade, upper right rib cage and in the back of brain) tumors, going to Mayo in MN the whole week of Thanksgiving…. 🙁 all for more testing. I will know this Thursday if my dr., tells me if I have Amyloidosis as well. All my blood work last week came back highly elevated (not good for me)

v/r
Patrick

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Hi Patrick. I was diagnosed with stage 2 mm last year. I had my transplant late October and left Mayo right before Thanksgiving. I hope chemo goes well for you with minimal side effects. This hasn’t been an easy ride but endurable. Prayers to you. And hugs.

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@rhamrin

Hi Patrick. I was diagnosed with stage 2 mm last year. I had my transplant late October and left Mayo right before Thanksgiving. I hope chemo goes well for you with minimal side effects. This hasn’t been an easy ride but endurable. Prayers to you. And hugs.

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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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Justin,

I start my first Chem treatment today 14 Nov 19. I will be going to Mayo Clinic the 25-29 Nov 19 for more testing, to see how soon I can begin with my Stem-Cell Transplant. I will keep you posted. Just started taking Dexamethasone today, 4 mg, the instructions say, "take 10 tablets by mouth once a week on treatment days. Have another appt., with my Dr., today to go over more blood work results, to if I have Stage 3 or not! Not looking forward at all to that today.

v/r
Patrick

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@nick0820

Hi Patrick! I was diagnosed with Amyloidosis in March of this year, however I do not have Multiple Myeloma. My symptoms and test results did not meet the criteria/metrics for a myeloma diagnosis.

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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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@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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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.

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@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…..

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@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

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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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