New to the forum..question about transfusions.

[Brian]

My father (72) was diagnosed with MDS REAB-2 in November, and up until this time has been in good health. Currently his WBC are low, particularly his neuts. The RBC also have fallen to 9.6. Blasts are at 14%

Because of his age, the doctors don’t recommend a mini-transplant. At this point they seem to be recommending supportive care, which I understand to be antibiotics and transfusions.

The doctors have described the downside of the transfusions; particularly the build up of iron and antibodies. It sounds like these problems will take some time to develop.

How many transfusions can you have and how long could it take for these problem to develop.

Any information is appreciated, and thank you for your help.

[Carrie]

Brian,

I can’t really help you because I’m also new and my dad’s situation is different but you’ll find a lot of great advice on this board.

Good luck to you and your dad!
Carrie

[Terri]

Brian, We contacted a Nutritionist in conjunction with our Local Hemo. Originally when we went to Center of Exc the doctor there said just supportive care which was like your dad. But our local doctor started Bob on the Vidaza (Prior to its approval by the FDA). Its a form of chemo. In conjunction with this the nurtrionist has BOb taking vitamins and supplements to boost the Immune system and help with the counts. I have to say bob is transfusion Free for a year, counts are stable considering. The WBC a little high, reds normal and Hgb hangs in between 10 and 11. This week 11.3. Plts low but no bleeding problems. Bobs blast were 14% this past Oct with the Latest Bone Marrow biopsy and now he will be starting his third round of Vidaza to help bring them down.
He is also on an antibiotic.

[eve]

hi brian

what about treatments with vidaza or some of the other drugs some of the people on this forum are on – i think they should try to get his blasts down, and i don’t think the txs are not going to do that

eve

[eve]

that should read i don’t think the txs are going to do that

[Suzanne]

As I have said before Look into Zarnestra for someone who cannot do the induction chemo. I understand that it is hard to find now because all the trials have been closed to collect statistics to submitt for approval. Or if he is healthy enough otherwise consider the induction and follow up round of heavy chemo. That has worked for me, Barbra’s Ron and another contact who is on her 70’s.We are all in remision and tx free. I don’t know that there is a specific # of tx’s to cause too much of a build-up. People are probably different even in how how a level they can tolerate.

[czaring]

Brian …. Neil has good info on this (and EVERY) topic. I’ve seen him recommend irradiated/filtered blood – called I/F or F/I (help here, Neil) and I have come to understand why that is important. Tylenol/Benadryl also reduces the body’s response to the “foreign stuff” that it perceives and can be given prior to the Tx (transfusion). Also – the iron thing – from what I’ve come to understand – takes quite a while before the build up becomes threatening to the body. I’m just reapeating some of what I’ve read here. Also seems as if the other issues … blast @ 14% and low WBC/neuts can be addressed. But that starts to cross some quality of life issues – as others have mentioned – it can involve chemotherapy which can be as hard on the body as some forms of this syndrome.

[paml]

Brian,
There is unfortunately disagreement amongst the professionals regarding what level above a normal ferritin, which is 10 – 291, (lab values may differ slightly), that are dangerous. Ferritin is the indicator of storage iron, and is not essential to maintain life. At one of the AA-MDS family and patient conferences one expert expressed that even a small amount of stored iron is a potential killer. Excess iron damages the heart, brain, spleen, and other storage sites in the body. Sorry I have no definitive answer on this question, and you’ll find an entire range of answers. Based on the advancing age of some patients, I do think that some drs just don’t deal with the issue.

Those of us with mds have a precarious relationship with iron. While we may be anemic, or having a low hgb, we may at the same time be iron loaded, thus the advice not to add additional iron through supplements. B vitamins, especially B12, B6 and folic acid, should be the choice treatment of anemia. This is true for healthy people as well; a low hgb does not suggest more iron!

The build up of red cell antibodies is in a lot of ways the luck of the draw. It certainly can make finding compatible donors in some cases difficult. It is suggested that if a transfusion, request filtered and irradiated blood. Leukoreduction is called for, appropriate, and recommended if the patient is a BMT candidate. Because we are patients with blood (marrow) disorders, most of us are potential BMT candidates. With BMT age limits rising and experimentation with mini transplants, I would not rule out BMT for any of us. You can see my post from 9/17/2004 on this subject as well as supplemental posts from other members.

Best Regards,
Pam L.

Quote:

Originally posted by Brian:
My father (72) was diagnosed with MDS REAB-2 in November, and up until this time has been in good health. Currently his WBC are low, particularly his neuts. The RBC also have fallen to 9.6. Blasts are at 14%

Because of his age, the doctors don’t recommend a mini-transplant. At this point they seem to be recommending supportive care, which I understand to be antibiotics and transfusions.

The doctors have described the downside of the transfusions; particularly the build up of iron and antibodies. It sounds like these problems will take some time to develop.

How many transfusions can you have and how long could it take for these problem to develop.

Any information is appreciated, and thank you for your help.

[stoli]

Hi Brian:
I will pass on my personal experiences for your information. I have MDS-RA and am transfusion dependent and have been for 3-1/2 years, with frequency every 2-3 weeks. My doctors have tried procrit, thalidomide and trisenox and none have worked. I am awaiting FDA approval of Remlivid (sp?). My iron counts have been driven to the 3000+ levels, and I am currently on a trial for iron overload treatment, and counts are at the 2000 level now. I have no idea what my antibody counts are (if there is a way to count them at all), but I am sure there are a lot! The ultimate long term effects of iron overload is kidney and/or liver failure; my understanding is this takes 10 years or more. But, you do what you have to do, and right now red blood cells are my prime concern. The good news is that my condition is “stable”; i.e., not getting better but not getting worse, and I am thankful for that! Hope this helps your situation; my best to you.

[Neil]

Hi Brian,
Very sorry about your dad. Hope we can provide some info that will help you and him getup to speed and understand MDS better. Sometimes a good understanding of what is going on helps.
Some Basics.
An experienced hematologist is an absolute must! A hemo with experience with RAEB-2 is even better. Most docs have never seen a case of RAEB-2 You dont want one that advocates on the job training!
Having him treated at a Center of Excellence is also a big advantage. They can explain the options available much better. The University of Toronto Hospital For Sick Children is on. Dr Yigal Dror is one frequently recommended.
Irradiated/filtered blood was mentioned in other messages as well as iron over load. Remember it usually takes about 25 transfusions(TX) before iron builds up. It then takes about 10-14 years before it will effect any organs. Would follow the docs advice on how to approach this with respect to downstream problems. They will monitor his ferritin count to make sure of his status. Not everyone fits the 25/10-14 mold.
A primary objective would be to keep his blasts from increasing. Better yet to lower them. There are drugs that might work.
Would glean all of the info possible from those posts from others who have RAEB-2. They have a wealth of info from actual experience.
Will send some additional info to your e-mail address. Much too long for The Forum.
Neil

[B. Greene]

Be sure you get irradiated and filtered blood and don’t worry about it right now would be my thought. You need to focus on getting the blasts down so they don’t transform. Depending on his health there are several options as Suzanne mentioned. The others have covered the expert in dealing with this etc. In some people the blasts accelerate quickly, in others they don’t, but it isn’t something you want to wait around on. In reading other posts you will see what some of the members are using. Barbra

[Brian]

Thank you for all this information and words of encouragement.

[Author]

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