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Anyone with Plasma Cell Leukemia or family?
Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (48)Comment receiving replies
Thank you for your response. I feel much better after reading.
I live in Miami. The hospital is about 30 minutes away. My oncologist is at Mount Sinai Hospital (20 minutes drive). My transplant will be done at University of Miami.
I contacted Mayo for a second opinion and possible transfer for treatment. The closest one to me is in Jacksonville (@3.5 hours drive). I would have to move. However, Mayo assured me that I was in good hands at University of Miami. He said they are also up there and one of the best for Blood Cancers.
Please, any information you have on ASCT you can share is greatly appreciated. The plan is to do auto transplant, and I have my second appointment next week with doctor to discuss further.
Thank you for your response.
Michelle
Replies to "@loribmt Thank you for your response. I feel much better after reading. I live in Miami...."
@mother2109
Hi Michelle
I’m 77 and Stem cells haven’t been brought up yet, since I really haven’t finished my Induction Therapy . ( although we have spoke about it). My condition now is Stablized. This is rare so I’m being watched closely.
My wife is my caregiver. It’s nice almost feeling normal again, although neuropathy is still around as well as fatigue.
My diet is from Day 1 returning home , little to no processed food, no restaurants or fast food. No one prepares my food!
No fruit or vegetables other than those we grow.
Strict . I do buy my eggs , and lots of local beef and salmon .
I’ll read the books . Thank you. Oh and I get lots of excercise . Im not looking forward to the darker Winters , but I have therapy lights .
The other site is the one I started. No replies, you and I are 1 in 1 to 10 million! Never give up !
I’m here for you !
More later, All The Best!
Jim
@mother2109
Hi Michelle
Do you have Primary Plasma Cell Leukemia or Secondary Plasma Cell Leukemia?
There is a huge difference .Mine is not affecting my bones .
Thank you
Jim
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@mother2109
Hi Michelle, While you’re having your ASCT for PCL, the protocol are generally similar for this type of stem cell transplant. Obviously some elements will vary from clinic to clinic but the basic cell harvesting, transplant, recovery are similar.
So to start you off here is an older but relevant ASCT journey by @jstpeachy a few years ago. Other members have joined in with her discussion.
My Autologous Stem Cell Transplant Journey - Mayo, Phoenix https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
This Caregiver’s Guide published by Mayo is filled with info for both patients and caregivers. It covers a lot of area so make sure you look at all the tabs and menu items.
It opens with the autologous stem cell transplant which is what you’ll be having. So you can skip over the allogeneic section.
Caregiver’s guide:
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
More discussions can be found regarding ASCT (autologous stem cell transplants) by styling in ASCT or the full term in the top search bar. Feel free to drop into any conversation and ask questions of members! ☺️
Here is what I found on my search for you: https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
This can feel overwhelming, of course. But just as with your treatment, once you get underway, you get through it day by day! Living as close as you do to the transplant center you may be offered an earlier recovery at home which would be great!
Let me know if I can help with anything else!