Forum New Comer

[Frank Winn]

I am new here although dx Sep 2006. This area helps me realize that there is no really set approach to treating MDS. Everyone seems to have a different Therapy and different results. Also helps me realize how lucky I am compared to some of the situations described herein. For 2 years I had transfusions, 2 units every week or two. Developed crud in my lungs Dec. 2007. Started prednizone to treat that and immediately went 21 weeks without transfusion. Hospitalized twice during July and August with 1 unit each time before being released to go home. Now working on 7th week without blood. Hg 11.5, WBC 2.4.

[Birgitta-A]

Hi Frank,
Yes, it will be difficult to find two patients with MDS that have the same symptoms - thats why the disease is called Myelodysplastic syndromes. Syndrome means the association of several clinically recognizable features, signs, symptoms, phenomena or characteristics that often occur together, so that the presence of one feature alerts the physician to the presence of the others.

We have different HGB, white blood cell counts, platelet counts, % of blast cells, chromosome aberrations, transfusion needs, performance status, other diseases etc.

That is why there are so many drugs in trials for MDS - more than 800 trials. Everybody is hoping that the researchers will find something that is effective in their case.

You are really very lucky when you had such a wonderful result with Prednisone ! It did nothing for me when I tried it 2006 (at that time my diagnosis was myelofibrosis).
Kind regards
Birgitta-A
69 yo, dx MDS May 2006, transfusion dependent, Desferal 4 days with transfusions, Neupogen 2 injections/week, asymptomatic

[Frank Winn]

Thanks for coming back to me. I can see that you very active in this forum and that is good. Had blood draw and Dr. visit yesterday--No Aranesp or Neupogen or Transfusion (now 7 weeks). Hg 10.5, WBC 1.5, Platelets 169.

[Birgitta-A]

Hi Frank,
You probably know that when your WBC count is 1.5 your neutrophils are about 0.75 and you have to avoid infections.

http://www.uihealthcare.com/topics/m...infection.html

I had tonsillitis 2007 that decreased my WBC:s (they had been low but normal) so I got three other infections within two months. Since then I have to take Neupogen 2 injections/week because my bone marrow never recovered.
Kind regards
Birgitta-A

[Frank Winn]

Birgitta, time for an update. Hg 9.8 WBC 3.0 Platelets 141. No transfusions for 21 weeks. This ties my previous record. My treatment facility is the National Cancer Institue/National Naval Medical Center Hematology/Oncology Clinic. I am still doing the prednisone 10mg/day. Everyone there seems mystified by my stabilization but I have to believe it is the prednizone. Oh Yes get Aranesp shot once/week when Hg below 10.

Thanks for listening

[DianeD]

Your info was very interesting. Glad you joined. The more info we have the better.

[Birgitta-A]

Hi Frank,
Congratulations to your good counts - even the WBC:s have increased now !
Kind regards
Birgitta-A

[Frank Winn]

24 weeks without tranfusion. Hg yesterday 10.2, WBC 3.5, Platelets 183. No Aranesp for two weeks.

[Birgitta-A]

Hi Frank,
Your counts are almost normal - only Hgb a little low. Really very good !
Kind regards
Birgitta-A