Transfusion frequency

[Coach6533]

Although I have had MDS for many years I just found this site today. How did I miss it? I am transfusion dependent and last June I had my spleen removed because my transfusions were getting more and more frequent. The splenectomy has not seemed to help and I am now getting 3 units every three weeks. Although, after 2 1/2 weeks I feel like I am in need of blood. If I have to have transfusions more and more frequently, aside from increased iron which is pretty well under control, what are the dangers of frequent transfusions.

Is this transfusion frequency a sinister development?

What have others experienced?

Many thanks.

[celebrations]

Hi,
I am from Germany. I have been suffering from MDS for 5,5 years and I am transfusion dependant every 18 days in average.

I do not understand, why your spleen had been removed? Was it too large and did not work well anymore because of the malfunctioning red cells? Never heard the spleen being taken out thinking the transfusion frequency would diminuish ?

If your iron-overload is under control – as you wrote – you can spend many more years that way.
Unfortunately many blood-transfusions makes a BMT more risky, that’s what you read and the physicians say.

Last week I got my 101st tx. How many have you had so far?
Curious to know.
Bye, Bergit

[Coach6533]

Hi Bergit

Thanks so much for your reply. It is comforting to know that your intervals are 18 days and that you have no adverse affects from that.

My splenectomy was due to the combination of CLL and MDS. Instead of going after the bad cells, my spleen was destroying the red blood cells, thus adding to my need for transfusions. Also, it was the main organ contributing to the CLL.

My first transfusion was 13 September 2005. I kept track of the number of transfusions until 2009 and then decided it wasn’t useful or effective to keep it up. In 2009 I was at 60 so I am guessing I am over 100 by now as they are more frequent since then.

So far my doc has ruled out a BMT. I am 62 yeqars old and in his assessment the risks are too great for the expected benefit. So, transfusions it is. But, I can live with that.

Thanks again for your reply.

Sally

[bobweinberg]

Welcome to the MDS Foundation. I too am surprised it took you awhile to find this resource. I have devoted a lot of time to the Foundation and have found it very gratifying. I have had red cell transfusions since 1998, first monthly, then every 14 days, then 10 days and now every 8 days. I am told that the increase in frequency is due to my building up more and more antibodies to the foreign blood as more and more of it is pumped into my body. I have had over 740 units of blood since the diagnosis. Yet, with chelation for iron daily, I keep chugging along, and I hope you do as well.

[Coach6533]

Hi Bob

Every 8 days, my goodness. But fantastic that this intervention is available. Your story is very comforting. Thanks so much for sharing this with me.

Sally

[Mary4Mike]

Coach,
My husband had over 140 units prior to transplant. Why have they ruled out BMT? Age? Physical health (other than MDS)?

My husband had his transplant at age 64, almost 2 years ago. He is doing great.

We consider it a beautiful blessing.

Mary

[celebrations]

I am so grateful for your answer and for the story of your husband, Mary ! Very encouraging!

My doctors have always pointed out that I am a rather perfect candidate for an SCT and – as soon as there will be blasts…
-or my whites would decline dramatically…
– or there would be an additional chromosomical aberration…
they would transplant right away.
I am so lucky to have my brother as a perfect match.

As long as it is "ONLY TRANSFUSIONS" (although 15-18 days) they think (this includes first, second and even third opinion)the risk of a transplant is higher than living on transfusions.

I wish you well, Sally,
Bergit

HI to Bob Weinberg !!
I am not sure, but I think to have read that blood banks can prevent your organism from building antibodies against the donor’s blood by further tests etc. So that you get blood only from donors who are better matches for you.
Takes more time staying in hospital until all the investigation and work are done. But finally you’ll be fine and the transfusion frequency may become less often.
I hope so much that there will be a solution for your serious problem. Cya, Bergit

[Coach6533]

Hi Mary

I am intrigued and comforted by the fact that your husband had a transplant at age 64 after 140 transfusions. Did something happen to make a transplant the preferred course of action as opposed to continuing the transfusions?

Sally

[Coach6533]

I think the transfusions are less of a risk – at this point – than BMT. I will ask my doc what markers would indicate the opposite.

The day before my transfusions I have a blood test which, in the UK, is called a cross match. It is to teat for antibodies so that the transfused blood doesn’t carry any risk. Thus far I have not developed any antibodies but the cross match is always mandatory, which is a good thing. The only problem is that it means going to the hospital two days in a row, which is kind of a pain.

[bobweinberg]

Bergit, in the US, I have always had the blood I receive "leukocyte-reduced." Is this what you are referring to? However, since I have been in France (about 16 transfusions), I don’t believe this is being done and that may be why I am not maintaining the 10 days any longer. I will ask about that. Thank you for the tip.

Bob

[Mary4Mike]

Sally,
His cytogenetics were changing. He still had no blasts. He wasn’t being helped by transfusion anymore. His HGB went up a bit, but didn’t stay long and it never helped him to feel better. He was tired of feeling bad and our doctors had always been open to SCT so he decided to go for it. He had low dose pre-chemo and no radiation. He breezed through it and went home on Day 12. His HGB is over 18 now and he is doing monthly phlebotomy for the excess iron. All of his counts are normal. It is the best he has felt in years.

Mary

[Coach6533]

Hi Mary

Thanks for sharing your husband’s story. It is so encouraging. I am concerned that the transfusions are becoming less and less effective as time goes on. I used to be able to cope with an HB of 8.0 but I find my body is struggling to do that now. Maybe a transplant is an option for me in the future.

Thanks again

Sally

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