Transfusion Dependent

[kjraimondi]

Hello all,

I have been transfusion dependent since my diagnosis is September. I have had 10 Red blood transfusions and more platelets than I can can keep track of. At least one a week on average since my VSAA diagnosis.

I started with Horse ATG in September and have been on cylcosporin since. We are at about 80 days since treatment began. My WBC count is holding strong but my I am still getting Red Blood every 2-4 weeks and plates every 1-2 weeks.

It seems like I am trending less though as my Reds have hung on for 3 weeks (though trending down now) and plates have lasted almost 2 weeks. But my numbers are still in the gutter. 8.6 RBC and 18k plates.

I don't have a related donor but have lots of early non-related matches for BMT. All of these transfusions are making me concerned about my chances with BMT. My doctor will not even consider BMT and is not recommending any next steps right now. He seems like a good doctor but refuses to give me any timeline preferring to say "we just need to see how you are responding to the first treatment".

What do you think? Should I be pressing harder for Rabbit ATG or BMT or am I being premature? It looks like most cases wait for around 6 mos before moving to the next treatment but all these transfusions make me concerned.

I appreciate your input to my case.

Ken R.

[Neil Cuadra]

Ken,

You are correct that a large number of transfusions can be a disadvantage for a subsequent transplant. I think it interferes with the engraftment process. All blood products you get should be irradiated and leukocyte-reduced. That's a good idea for anyone getting regular transfusions, but especially for those who may get a transplant.

Have you considered going to the MD Anderson Cancer Center, at the University of Texas in Houston, for a second opinion? They can assess the risk of getting these transfusions when a transplant is a possibility. Even if they confirm that your doctor's approach is the best choice for now, you'll have more confidence in your treatment plan having heard from another expert.

[kjraimondi]

Originally Posted by Neil Cuadra

Have you considered going to the MD Anderson Cancer Center, at the University of Texas in Houston, for a second opinion? They can assess the risk of getting these transfusions when a transplant is a possibility. Even if they confirm that your doctor's approach is the best choice for now, you'll have more confidence in your treatment plan having heard from another expert.

Neil,

Thanks for the reply! I have considered it and now that you mention it, I will pursue it. I have been hesitant because I didn't want to go to early. I want to give the first round its due course but I also don't want to wait to long to get a true perspective on a possible BMT. I'll discuss it with my doctor and see where that goes.

Thanks again!!

Ken

[Greg H]

Originally Posted by Neil Cuadra

You are correct that a large number of transfusions can be a disadvantage for a subsequent transplant. I think it interferes with the engraftment process.

Neil,

I have begun to do a little digging for data on this point, and would be interested in any studies you can point out.

I too have heard, anecdotally, that the number of red cell transfusions can interfere with engraftment, as well as that the acquisition of antibodies in the transfusion process can be a problem for transplant. But I haven't seen studies on those points yet.

I did find this 2010 study, from the well-known Italian group GITMO (maybe an acronym they might consider changing, at this point). Big caveat: this thread is in the AA section of Marrowforums; the study deals with MDS patients. It is not at all clear to me that what is true about transplant in the MDS world is also true in the AA world.

The key findings of the study are these:

- Red cell transfusion dependence and iron overload have a negative impact on non-relapse mortality (in the neighborhood of 1.5 hazard ratio) but no impact on relapse. (In other words, transfusion dependence and iron overload make it more likely that the transplant will kill you, but not that you'll relapse if you make it past that hurdle).

- The authors believe -- with some decent evidence -- that iron overload may be the ultimate cause of this higher risk among a transfusion dependent patients.

- Transfusion dependent patients with less than 20 lifetime units transfused showed no difference in terms of risk when compared to non-transfusion dependent patients. After that, more units meant (more or less) proportionately more risk.

- After 20 units, the increased risk of non-relapse mortality does increase with the overall number of lifetime units as well as the severity of iron overload measured by increased serum ferritin levels.

- The increased risk of non-relapse mortality among transfusion dependent and iron overloaded patients held only for patients who had myeloablative (big, full, maxi) transplants. Patients who undergo reduced intensity transplants had no increased risk linked to number of transfusions or iron.

- The authors suggested one clinical implication of the study is that folks with a long history of transfusion or high ferritin levels might be advised to go for a reduced intensity, rather than a fully myeloablative transplant.

In plainer English, this study found that MDS patients receiving standard transplants who had more than 20 units of packed red blood cells or ferritin levels above 1,000 were about half again as likely as non-transfusion dependent, non-high ferritin MDS transplant patients to die from the transplant procedure or other causes in the early days after transplant. Folks who fit these descriptions might want to consider reduced intensity transplants.

I'd be interested in other studies that Neil or anyone else has run across on this point. I have located a couple of others I have on my reading list, and I'll report back on them here.

Take care!

Greg

[amberb]

Hi Ken. Your situation sounds very similar to mine. I had horse ATG in July and am still transfusion dependent. I get platelets every 7-10 days and blood about every 3 weeks. My ANC has slowly come up from as low as 0.2 to just recently as high as 1.3 (but back down this week to 0.8). Same with my WBC which averages around 1.5.
I also do not have a matched donor and am considering repeating the ATG with rabbit this time. My Dr also mentioned possibly adding a growth factor this time around, he saw it had success in a clinical study. I'm planning on re-treating after the holidays, and if after 6 months or so if that doesn't work I'm considering going to NIH (in Maryland) to be a part of a clinical trial. I'm chosing that over an unrelated donor because research shows that while a BMT is the only cure, it shortens a patients' life span. I decided I would rather aim for "remission" than a cure. There is a good website, clinicaltrials.gov.
I hope you find this somewhat helpful, at least to know some one is going through the same struggle.

[kjraimondi]

Thank you all for the insight. Amberb- I will be following your progress and pray for a speedy remission! My ANC has stayed above 2.2 and hovers around 2.5. My doc says he is concerned that he is not seeing as many "baby" red blood cells as he would like. I had plates and red blood last week. It was about 16 days between plates and around 30 for red blood. The time in between is growing. I'm still not sure what is next but the info shared here is a big help!