In Part One, we met Raheem, a 33 year old gentleman that recently completed the stem cell transplant in NIH with a generous gift of life from his brother. On the Sickle Cell Warriors Facebook page, we grilled him to find out everything we could and Raheem was gracious enough to respond. Part Two talked about the Stem Cell collection and donation process. This section goes into the nitty gritty details of his experiences with the transplant phase. In Part Four, we will talk about Life After the transplant.
PART TWO: Raheem talks about the stem cell transplant eligibility requirements, donation process and how he was able to undergo the ‘cure’.
Are patients with sickle cell SC also eligible for the transplant?
I have a two close friends and a cousin with SC. They do it based on severity SS or SC. If you are going through severe episodes with sickle cell then you are a candidate, whether your SC or SS.
Is there a certain age that you have to be?
I believe the oldest person was 45 so far, and it worked. I think the more successful they become the higher the age they will be willing to accept. As long as they are healthy enough to undergo the rigors of a transplant, they will take them. [According to the NIH, they will take adult patients older than 18 only].
Can the cells sickle again?
Only if the transplant fails. Doctors don’t want to refer to it as a cure because they still do not have long-term numbers. However, I was told: Chances of it returning is slim to none. Please keep in mind the procedure is relatively new and the only transplant they can compare this too are the ones done on cancer patients. THIS IS DIFFERENT. The body is an amazing thing as long as you do not mess with the white blood cells. Our disorder affects our red blood cells, everything else is fine. All of our marrow isn’t obliterated so if the body doesn’t like the new cells it usually gets rid of it within 3 weeks following the transplant. This happened to a patient I was there with.
I have asked my doctors about the procedure was told I should not consider it because it’s a long process and at the end it may not work and has to be redone every 10 years, is this true?
I think your doctors don’t know what they are talking about and are basing it off of cancer transplant procedures and results. The study has been going on for more than 15 years and is relatively new for adults around 6 years. However, it’s been so successful that they have started doing half-match at the NIH. That means now parents can donate to their children. This procedure is still fresh and they have not been as successful 50/50 success rate.
If what your doctors said was true, then the children who had it done in the 90’s should all have sickle cell again but that just isn’t the case. They would also stop recommending the procedure as a permanent fix to patients, young and old, because this will lead to a massive malpractice law suit. Believe me I would not had signed up if it had a 10 year limit. I would instead stick to pills and transfusion. The only thing your doctors are right about is the fact it might not work.
I will ask the doctors at NIH about this when I return on February 20th, but unfortunately I think those doctors are wrong, especially about the 10 year thing, JUST DEAD WRONG.
How do they know it won’t come back? Is that possible?
They don’t know and they can’t guarantee that it won’t. This is why they don’t call it a “cure.” The good thing is no one had it return. Not even the children. If it fails it’s usually going to occur within a year. If it doesn’t than after 2 years you’re basically considered sickle free.
How can you qualify?
Since this is still considered experimental they only want to take the people with the most issues. Painful episodes can be managed. But having repeat episodes of acute chest, stroke, necrosis, and more than 4 crisis a year, is an indication that things aren’t going to well and your sickle cell is becoming hard to manage. The stem-cell transplant at that point is the only option left.
Did they know you were going to be cured?
They knew I had an 85% chance. The other 15% it didn’t work. The transplant essentially didn’t take and the body rejected the cells.
How many blood transfusions had you had prior to the transplant?
Not many. I had four exchange transfusions so 24 bags of blood in 33 years. The people who built antibodies because of blood transfusions had some issues after their transplants, but they actually have a blood doctor at the NIH all he studies are red blood cells and find ways to get the right blood products for the patient. I have an anti-body and I didn’t have any issues.
Who can be donors?
For Allogeneic transplants, only perfect matches (100%, 6 out of 6), siblings or strangers can be donors. The preference is sibling. Gender does not matter. Here’s an interesting fact though: If you receive the transplant from a female and you are male, your blood will show up as female and vice versa. I found that hilarious. Because one of my fellow transplant recipients received his stem-cells from his sister. Another interesting fact, I took on some of my brothers traits (no pun intended). I like video games now and slacking off. I had to train myself to be me again.
Did any of your other siblings match? No. Just my youngest brother. There is only a 25% chance your siblings would be a match. However, the NIH has been working on Haplo-match, which is a half match transplant. So hopefully soon more people will be sickle free through stem-cells donated by parents or siblings who match 5 out of 6, 4 out of 6, and 3 out of 6.
What was the % of your match and how close did they want the % to be? They only accept 100% match donor for Allogeneic transplants.
How painful was the donation process for your brother?
They gave him an injection of a growth factor called G-CSF (Granulocyte Colony Stimulating Factor) twice for 3 days. Then on day six they withdrew the excess stem-cells from his bloodstream. He’s an athlete so he was in pain for just one day because the stem-cells are produced in the long bones (femur) and hip. So he had pain there for a day and took two Tylenols for it. On the sixth day, he went in at 6am and they inserted one needle in each arm, one to take blood out send it through the filter, extract the stem cells from the blood, then the blood goes back into him through the needle in the other arm. It was a 7 hour procedure and they had more than enough stem-cells. He slept the whole 7 hours.
Is it true that you have to be in isolation for several weeks? And you can’t see your family and such?
That was when the transplant was still new. Now because they realize sickle cell is not an immune-disorder like cancer, they changed the regimen. This procedure is called “a mini-transplant,” non-myeloablative, or reduced-intensity transplant. They use lower, less toxic doses of chemotherapy and radiation to prepare the patient for an allogeneic transplant. This eliminates some, but not all, of your bone marrow.
Read Part 3 HERE.