So I'm new to all of this, but my dad found out a few years ago he had multiple myeloma and went through treatment with chemo and a stem cell transplant [SCT] with his own stem cells. After a few check ups, he found out that he now has myelodysplastic syndromes (MDS), so they decided to go with a donor stem cell transplant. This was a very good match considering he has no direct siblings.
His platelet count went up quite a bit and on day 14 his chimerism test came back at 22% (his donor's stem cells took over well). Then on day 30 the chimerism test came back 92% (it usually doesn't go up to the 90s until day 90 or so), which was amazing.
Now, at day 60, the test came back at 42% and his platelets dropped even more. He went with a bone marrow biopsy to find out if he still has MDS, which the doctor said yes and that the bone marrow transplant did not work.
Has anyone else experienced this? If so, what were your other options? Any suggestions?
He is a very healthy 51 year old and he meets with the doctor tomorrow to find out what he has to say. This doctor is a specialist for multiple myeloma but has been speaking with the MDS specialist at Penn State's Hershey Medical Center to verify what he is doing is all good. We don't know if he will need to go find a doctor with more experience or not.
I'm just curious as to what my family is in for.
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Dadsdaughter - Name: Rachel
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 51
Re: Failure - donor transplant for MDS after myeloma
Hi Rachel,
I don't have any suggestions because I've not gone through this, but I want to wish you, your dad and your family the best. It's very good that you have specialists on board. Here's hoping they will have a good plan for your dad.
I don't have any suggestions because I've not gone through this, but I want to wish you, your dad and your family the best. It's very good that you have specialists on board. Here's hoping they will have a good plan for your dad.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Failure - donor transplant for MDS after myeloma
Hello Joy,
I am very sorry to hear that your father's allogeneic stem cell transplant is failing. This is a well known problem with allogeneic stem cell transplants, but it is uncommon. One option is to repeat the allo transplant procedure with either the same donor or to repeat it using a different donor. Your father is relatively young and healthy, so this is a real consideration. I suspect that he was treated with the standard agents for MDS like azacitidine (Vidaza) etc., but if a second allo transplant is not possible, then treating the MDS with different chemotherapy regimens is also a possibility.
I would explore any research studies available to him for his MDS as well. Generally, any center that is performing allogeneic stem cell transplantation is large and experienced, so I am not sure that going to other expert centers will benefit him. I would never discourage you, though, from seeking other opinions, and there are many excellent cancer centers in that region of the east coast.
Myelodysplastic syndrome manifests as bone marrow failure. This means that the bone marrow no longer produces adequate amounts of blood cells (white blood cells, red blood cells, and platelets). Patients need frequent blood and platelet transfusions. Patients require injections to help stimulate production of blood by the bone marrow, but the injections are often ineffective. The need for transfusions increases over time. The white blood cells (infection fighting cells) are often chronically low, and this leaves patients at risk for infection. In addition, many patients with MDS eventually progress to full blown acute leukemia. MDS is a very challenging disease.
This is a difficult clinical situation for your father. His hematologist / oncologist(s) will have to analyze this complex clinical story to help you and your father make the best decision. I wish your dad and your family all the best.
I am very sorry to hear that your father's allogeneic stem cell transplant is failing. This is a well known problem with allogeneic stem cell transplants, but it is uncommon. One option is to repeat the allo transplant procedure with either the same donor or to repeat it using a different donor. Your father is relatively young and healthy, so this is a real consideration. I suspect that he was treated with the standard agents for MDS like azacitidine (Vidaza) etc., but if a second allo transplant is not possible, then treating the MDS with different chemotherapy regimens is also a possibility.
I would explore any research studies available to him for his MDS as well. Generally, any center that is performing allogeneic stem cell transplantation is large and experienced, so I am not sure that going to other expert centers will benefit him. I would never discourage you, though, from seeking other opinions, and there are many excellent cancer centers in that region of the east coast.
Myelodysplastic syndrome manifests as bone marrow failure. This means that the bone marrow no longer produces adequate amounts of blood cells (white blood cells, red blood cells, and platelets). Patients need frequent blood and platelet transfusions. Patients require injections to help stimulate production of blood by the bone marrow, but the injections are often ineffective. The need for transfusions increases over time. The white blood cells (infection fighting cells) are often chronically low, and this leaves patients at risk for infection. In addition, many patients with MDS eventually progress to full blown acute leukemia. MDS is a very challenging disease.
This is a difficult clinical situation for your father. His hematologist / oncologist(s) will have to analyze this complex clinical story to help you and your father make the best decision. I wish your dad and your family all the best.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Failure - donor transplant for MDS after myeloma
Thank you both for wishing him well, it really means a lot to us.
I do know that his doctor was coming up with other ways to handle this. I know that one of the ways would be to give him a "booster shot" of the donor's stem cells in hope that he would get graft vs host and that his body would fight it off with the help from these extra stem cells. Although, this does sound good, I also heard that it could be a hit or miss situation. I was told that if his body fights and make it, then that is great. But if his body tries and fails, then that could be the end of him. I hate even saying that, but it's a big worry.
Someone else on an MDS-related forum said he eventually was diagnosed with leukemia after MDS and his blast cells went to almost 80%. He went through the same treatment, but he also went through it using a sibling as a donor and now he is doing great. Do they treat this leukemia the same way? By stem cell transplant? Or are there more options?
I do know that his doctor was coming up with other ways to handle this. I know that one of the ways would be to give him a "booster shot" of the donor's stem cells in hope that he would get graft vs host and that his body would fight it off with the help from these extra stem cells. Although, this does sound good, I also heard that it could be a hit or miss situation. I was told that if his body fights and make it, then that is great. But if his body tries and fails, then that could be the end of him. I hate even saying that, but it's a big worry.
Someone else on an MDS-related forum said he eventually was diagnosed with leukemia after MDS and his blast cells went to almost 80%. He went through the same treatment, but he also went through it using a sibling as a donor and now he is doing great. Do they treat this leukemia the same way? By stem cell transplant? Or are there more options?
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Dadsdaughter - Name: Rachel
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 51
Re: Failure - donor transplant for MDS after myeloma
Hi Rachel,
Allogeneic (donor) stem cell transplants like the one your father received are often used to treat MDS and the form of leukemia to which MDS can progress, which is known as acute myeloid leukemia (AML)
Most transplant centers will look first to see if a patient has any siblings who can act as a stem cell donor for a transplant. If there are no sibling matches, they will then look to see if they can find any unrelated donors.
Aside from donor stem cell transplantation, there are several treatments available for MDS and AML. However, a donor transplant has the greatest likelihood of providing a sustained remission if the patient is able avoid any complications during the procedure.
(As you may have heard, morning show host Robin Roberts had MDS and underwent a donor stem cell transplant in 2012 with stem cells donated by her sister.)
We wish your father all the best
Allogeneic (donor) stem cell transplants like the one your father received are often used to treat MDS and the form of leukemia to which MDS can progress, which is known as acute myeloid leukemia (AML)
Most transplant centers will look first to see if a patient has any siblings who can act as a stem cell donor for a transplant. If there are no sibling matches, they will then look to see if they can find any unrelated donors.
Aside from donor stem cell transplantation, there are several treatments available for MDS and AML. However, a donor transplant has the greatest likelihood of providing a sustained remission if the patient is able avoid any complications during the procedure.
(As you may have heard, morning show host Robin Roberts had MDS and underwent a donor stem cell transplant in 2012 with stem cells donated by her sister.)
We wish your father all the best
Re: Failure - donor transplant for MDS after myeloma
Is it too early to say the transplant was a failure?
It's probably totally different with your father and his allo transplant, but with the autos, they don't like to evaluate until day 90. My numbers kept getting better until about day 120. But could be totally different.
Take care, Stann
It's probably totally different with your father and his allo transplant, but with the autos, they don't like to evaluate until day 90. My numbers kept getting better until about day 120. But could be totally different.
Take care, Stann
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stann
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