Bone Marrow/Stem Cell Transplant informational websites

Posted by Lori, Volunteer Mentor @loribmt, Jan 30 9:35am

Having an allogeneic bone marrow/stem cell transplant (using donor cells) gives many of us an amazing gift of a second chance at life. There are often questions surrounding this process so we’re always looking for credible resources to help us cope with this new life we’ve been given.
There are several useful sources, besides our awesome support group here at Mayo Connect of course. I felt this would be a good discussion where members who have had a bone marrow transplant can share some of the sites that they feel have been most valuable. I’ll start in the first comment and we’ll take it from there!
Please share your favorite sites below and how did they help you?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Lori, Volunteer Mentor | @loribmt | May 28 10:35am

In reply to @rob21974 "Hi Lori, I was wondering what the current options are right now for someone with AML..." + (show)

@rob21974 I just replied to your original post here. I think some of the questions will be answered reagarding meds.
https://connect.mayoclinic.org/comment/1585288/
As far as survival times, this is something to be discussed with the family member’s doctor. Factors such as MRD (minimal residual disease) if positive will have a different prognosis than if it is negative. Mutations which caused the AML can also be a factor. Some mutations are more challenging to longterm survival. There are no finite answers because each person is unique.
But the important thing is that your family member (in your other posting) has reached remission and now it’s a matter of helping to keep them disease free.
So the hematologist oncologist will most likely offer a follow-up maintenance regime.
Since this is the 2nd time your family member has reached remission, were they on any followup treatment after the first go-around with AML? Has there been a suggestion of follow-up maintenance?

robertk | @robertk | Jun 16 3:49pm

I have Walden storm when is it time to start looking for treatment options my dr saids when my level reaches 4000 is this correct

Lori, Volunteer Mentor | @loribmt | Jun 17 7:43am

In reply to @robertk "I have Walden storm when is it time to start looking for treatment options my dr..." + (show)

Hi @robertk Waldenstrom macroglobulinemia (WM) is a type of cancer in the bone marrow. The heart of the blood manufacturing in the body. This particular type of cancer produces cells which make a protein called immunoglobulin M (IgM) that can build up in the blood. Too much IgM can reduce blood flow in the body, which can damage the organs and cause other problems.

Early in the a diagnosis many people can forego treatment until the IgM level reaches a higher reading. As your doctor mentioned, 4000 mg/dL.3 seems to be the magic number where treatment considered.

I found several good articles for you. The first one from Cancer Therapy Advisors talks about WM in greater detail where you can learn about WM, treatments and when to begin.

>From Cancer Therapy Advisors:
https://www.cancertherapyadvisor.com/ddi/waldenstrom-macroglobulinemia-pharmacologic-treatment/
>The IWMF (International WM Foundation is a key source of information for WM patients.
International WM Foundaion:
https://iwmf.com/when-is-treatment-needed-for-wm/
>And the informational article on WM from Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967
Robert, there are many more discussions with WM members you might like to look through. Here are the results of the WM search.
https://connect.mayoclinic.org/search/
What was your most recent IgM reading?

davi0937 | @davi0937 | 2 days ago

New discovery assisting allogenic bone marrow transplant: Orca-T (commercially approved as Tregzi) is a newly approved, precision-engineered cellular therapy. It is designed to replace traditional, unmanipulated stem cell transplants for adults with high-risk blood cancers and hematological malignancies.

davi0937 | @davi0937 | 2 days ago

In reply to @davi0937 "New discovery assisting allogenic bone marrow transplant: Orca-T (commercially approved as Tregzi) is a newly approved,..." + (show)

@davi0937 https://orcabio.com/orca-bios-tregzi-receives-u-s-fda-approval-as-first-and-only-precision-engineered-cell-therapy-for-allogeneic-transplant-in-adults-with-hematological-malignanciesorca-bio-adds-east/

Lori, Volunteer Mentor | @loribmt | 2 days ago

In reply to @davi0937 "New discovery assisting allogenic bone marrow transplant: Orca-T (commercially approved as Tregzi) is a newly approved,..." + (show)

@davi0937
Thank you for posting this article! Orca-T (Tregzi) is a major breakthrough for allogeneic bone marrow transplants (BMT) in helping to reduce complications with Graft Vs Host Disease (GVHD) in BMT patients. The studies and results were impressive.
https://connect.mayoclinic.org/comment/1612110/
My 7 yr followup with my transplant doctor at Mayo is coming up in September. We always chat about the newest discoveries in the BMT world. (He’s a big supporter of Connect, so Tregzi will be the first item on my list to inquire about). I wonder how long it takes for a procedure change to be implemented into a clinic’s protocol? (Any clinic, not just Mayo)

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