What should doctor look for when testing my blood to be CMML donor?

Hi @don1stborn. You could be a lifesaver for your brother if you qualify as a donor match. I’m a stem cell transplant surviver of almost 5 years. It is truly a gift of a second chance so I hope you’re a match for your brother!

The process of matching is complicated and from what I understand, about 70% of patients won’t have a family member who matches. So don’t feel bad if this does happen. However, getting tested is the first step!

Blood type doesn’t really matter. The doctor will be checking proteins or markers found in most cells of the body called, Human leukocyte antigen (HLA) . They will also run a full DNA panel to match your proteins to your brother.

The closer the match to your brother the more the better. Most stem cell centers try to match 10/10 or 12/12 to help avoid any graft vs host disease issues which can develop if the match isn’t very close.

Mayo Clinic uses Be The Match foundation for procurement of bone marrow stem cells and have an international registry for/of donors. They are also helpful in having potential donors tested.
Here is a good article to help you understand the process. https://bethematch.org/support-the-cause/donate-blood-stem-cells/how-matching-works/

Has your brother’s transplant team already taken your blood sample?

Lori, thanks for responding. My brother (Ron age 75) learned that he has CMML on Dec. 18. He has a local doctor and is connected at the Mayo Clinic in Jacksonville, FL.

At this time, my goal is to educate myself and am willing to have my blood tested when requested by Mayo.

I wish you brother well with this ‘adventure’. At 75 he’s in the older range for a SCT but I’ve personally mentored people who were 75 at the time of transplant and are doing fabulously several years later. I’m not sure if there is an actual cutoff date, that is left to your brother and the transplant team to decide together.

He would have to go through a rigorous testing program, which takes about a week, to make sure he is healthy enough to endure the impact of the preconditioning chemo and the transplant itself. At this time an Allogenic stem cell transplant is the only potential cure for CMML. But there are treatments which may help slow the progression of the disease if your brother doesn’t qualify.

This may be putting the cart before the horse because you don’t know if your brother will have the transplant. But if you do become a donor, there many steps that will be taken. Being a donor does require a time commitment over a few weeks from screening to stem cell harvesting. Once accepted, you will most likely receive injections which help promote the growth of more stem cells so that you have an adequate amount to donate at the time of harvest. Harvesting itself is much easier than it sounds. It’s basically done similar to donating blood. However the blood is run through a machine that separates cells and then returns your blood back to you. The cells are then collected and your part is over.

I found a really nice article in Medical News Today if you’re interested, about a donor’s first hand accounting of how his donation day went. https://www.medicalnewstoday.com/articles/through-my-eyes-stem-cell-donation

Obviously your experience may differ a little but it gives a good overall experience of the procedure.

Best wishes to both of you if you can be his donor. If you or your brother have any questions about the transplant itself, please don’t hesitate. There are several of us in the forum who have had allogenic stem cell transplants (using donor cells). We’re all here to help others along their way. It’s not easy but it is worth the second chance with life.

There are also several discussion in the blood cancer support group with people have been diagnosed with CMML. You may want to peruse those conversations so you know what your brother may be experiencing. Not everything will apply to his condition but the conversations are educational.

CMML vs CMUS
https://connect.mayoclinic.org/discussion/cmml-vs-cmus/
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Looking for recommendations of doctors with expertise in CMML

How’s your brother coping with the diagnosis?

Thank you for continued, helpful comments.

Best regards,

Don Foreman
Waukee, IA

The information is very informative. I would like to connect with individuals or families dealing with CLL. My husband is suffering from a horrible, itchy rash, that bleeds and covers his entire body. Nothing has worked. Has anyone had that experience?

Thank you!

Hi @markgventnor, it’s not unusual for people to experience itching when they have a blood cancer or condition. I went through periods of that myself and I swear, having an itch is worse than pain! It can be relentless.

I found a great discussion for you to join so you can meet others with CLL. This comment with
@susie1340, particularly caught my eye. She has CLL and has terribly itching as well. You can read her comment here:
https://connect.mayoclinic.org/comment/865236/

There are other members in the same discussion and you can start reading all of those here:
MGUS & Rash
https://connect.mayoclinic.org/discussion/mgus-rash/

Another way to meet more members with CLL is to type CLL into the search bar at the top of this page or, Click on Blood cancer and Disorders to go directly to that group where you’ll see another search window exclusively in the blood cancer group so it searches relevant discussions for you.

Has your husband started any treatments for CLL?

Thanks for the info. My husband has been in treatment for over ten yers.

August of 2023 the unforgiving rash started and is still going on as I write. It is maddening and we are unable to get help from all doctors we have seen. He has tried all medications, steroids and nothing helped. Plus always using Sarna cream for the rash. Now doing light therapy three times weekly. It night time is the worst for him.

Sending our hugs back!