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Is anyone utilising Aranesp and filigrastim for long term use, in order to stabilise their red and white blood counts. Now completed one years treatment and have reasonable fitness and blood counts still holding good.

Type of MDS is RCMD Int low 1

Would like to hear from others if had similar treatment

Graham

Hi Graham

I haven't heard of either of those treatments and would like to know more if you are willing to share.

I'm RCMD low, was diagnosed in Feb but it seems I am just about to start treatment and always good to know options!

Thank you
Jayne

Hi Jayne,

I note that you are in Risk group low with RCMD. You have had no treatment since Feb. I too went a few months without treatment. If white blood count is low you could be on a Neutropenic Diet. I went down with a Neutropenic Sepsis and had to have emergency treatment. I responded with antibiotics, transfusions and have since injected with filigrastim (twice weekly) to improve white blood count and Aranesp (once 4 weekly) to improve Red blood count.

A year later on same treatment my WBC is 8.0 (4.0-11.0)and Hb (haemoglobin) is118 (130-180)). Platelets 96 (140-400) The Consultant only sees me every four months and it would appear that this treatment could continue for many more years? I am no longer on this Neutropenic diet but still careful as to diet.

These injections stimulate the Bone Marrow to produce more blood cells and would seem to be the answer with next to no side effects.

I do not know why I was not put on this treatment at start as I probable would not have developed a sepsis.

your situation would depend on blood counts but you would seem as well or better placed than me to receive this treatment. I take it that MDS is progressive and there will come a moment in time when other treatments will have to come into play.

I seem to be an unusual case as the only one in my Haematology Day centre to receive this treatment on a long term basis. As to why it is not used more often perhaps others may know. I can walk up to 15 miles but do get tired at times, so otherwise in reasonable health.

I wish you best for your treatment and perhaps at least you could mention some aspects of above when deciding your treatment.

Graham

Dear users - just want to alert you that this is the CMML specific chat folder.
If your comments are not CMML specific - they should be posted in the general "Comments and issues about MDS" folder.

Sorry for this bit of tidying up message - just trying to keep the forum in clear folders - so that information is easy to find.

Thanks all
ps - great work with the new signatures - fantastically helpful!