Treatment of lower-risk MDS

[Birgitta-A]

Hi All,
Here is an article about lower-risk MDS - interesting but no real news.
http://bloodjournal.hematologylibrar...1/21/4280.full
Kind regards
Birgitta-A

[tytd]

Hello Birgitta,
Thank you so much for posting this article. I am indebted to you for all your postings of current research. I hope you are doing well. Did you say that you are having to get transfusions again? At what level of Hb do you transfuse? My Hb in low 9s to high 8s is beginning to get to me but am afraid to use ESAs due to hypertension and low platelets. Anyway thanks again for all you do for this forum. tytd

[Birgitta-A]

Hi tytd,
You know that I was txs dependent from dx 2006 with a HGB of 7.0. After 4 years of supportive therapy when I had to have txs once a week I accepted Thalidomide + Prednisone 2010.

After 3 months I didn´t need txs until Feb 2013 when my HGB had decreased to 8.7. I got 2 units of PRBC but my HGB decreased to 7.5 due to hemolysis.

Now my blood is genotyped and I always get very fresh blood - 6 to 9 days old.

I had been treated with a very low dose Thalidomide - 50 mg 4 days/week - due to low neutrophils. Now we try 50 mg Thalidomide/day + Prednisone. I have to take Zarzio (like Neupogen) once a week to prevent neutropenia. Then I get Desferal 4 days in my port in connection with txs for iron overload.

Since dx I have felt fine except when I had neutropenic fever 2007. I get txs when my HGB is about 8.5.

Hope your HGB will hold!
Kind regards
Birgitta-A

[Dida]

My father a male 72 years old was diagnosed with mds. He has a low platelet count 2.2 . He is on his fourth vidaza course where he has had every possible side effect. He has lost 16 kg from the start of the treatment, he has severe back pains and his platelets after round three went up to 2.6. He is tired nautious and quality of his life is not great. He is in jordan where there is very little experience with mds. I have many questions and would really appreciate any input:
1. Anyone knows about mini transplants best doc best centers prognosis..

2.Are my dad's side effects from vidaza normal, when should he stop

3.Any interesting new research or wacky herbs that anyone heard of thAt may be a miracle cure , i am so sad to see him like this and i will do anything for him to get better

4 any ideas of treatment that are out there that need a bit of cash injection

Thank you all so much for any answers in advance

[Birgitta-A]

Hi Dida,
1 Here are Centers of Excellens for MDS patients. Perhaps a clinic in the UK would be best for your father like King’s College London & King’s College Hospital London, United Kingdom.
http://www.mds-foundation.org/mds-ce...of-excellence/

2 Many patients get severe adverse reactions. I don't understand the platelet count - is it really 2.2? Many doctors try 6 cycles of Vidaza.

3 As far as I understand there are no herbs for MDS. The best treatment results I have seen is a combination of Vidaza and Revlimid with 72% of the patients responding. We have to know more about your father's disease for example if he has higher or lower risk disease to show results from clinical trials.

4 All treatments outside Jordan for example in the UK will be very expensive.
Kind regards
Birgitta-A