MDS RAEBII new to the forum

[Donna T]

I'm new to the forum but I have been following it for the past year. I have a million questions but don't know where to start. There is not much good news on this disease. I am considered clinically stable because nothing has change for the better or the worse since my diagnosis. At the moment WBC <1; HgB never gets much above 8. Transfusions every 2-3 weeks. Neut rarely upbove .4 and platelets between 7-30. Mostly stays in the teens. I never feel good, I hate my loving family has to see me go through this, but I do have faith in God to see me through this, and I tell myself each day "at least it's me and not my child/grandchild or husband" I have a strong family support system and a ton of friends. I'm just scared. I don't know how to play this game. Thanks for letting me vent. Maybe I can think of a question next time! You all seem to be so knowledgable! Oh yeah......I have a wonderful team of supportive Drs here at home and I see Dr Rizerrie at Duke University in NC.

[Birgitta-A]

Hi Donna,
You really have wonderful doctors and have got very good treatments unfortunately without response. I wonder how old you are and if you have any other diseases.
kind regards
Birgitta-A
75 yo, dx MDS Interm-1 2006. All cell-lines low and transfusion dependent from dx. Supportive treatment until 2010 when I started to take Thalidomide with good response. Now responding to Revlimid. My HGB is 14,5 so I am starting to worry about deep vein thrombosis.

[Donna T]

Hey Bergitta,
I am 59 now. I have hypothyroidism that started out hyper. I received a 1 time radiation treatment for the hyper that turned it into hypo. That was 16 years ago. They think my mds came from that. I don't really have any other big time issues health wise. I have had a pacemaker for 7 years now but no other heart problems. When I was first diagnosed with MDS they found 3 donors within 2 months....one was a perfect match. But we could not get the blast count down enough. I don't understand the transplant thing. Some folks get transplants and they seem to still have circulating blast. And some get the mini transplant and again I don't think they are in complete remission. My Dr at Duke has said he might have something coming up in a couple of months that I may be able to participate in but I don't have any details yet. And he said several months ago that when it turns into AML they have lots of studies for that. But I know that MDS to AML is not very good. I just have a hard time deciphering everything on the internet. I know that MDS is so different in everyone and so unpredictable. Thanks for listening!

[Birgitta-A]

Hi Donna,
You know I don't know much about SCT because I was 67 yo at dx and in Sweden that is too old for SCT. Other members perhaps can tell you about different kinds of induction before a SCT.

The important issue in your case seems to get higher counts so you can tolerate effective induction. Perhaps Vidaza could be combined with another drug for example a so called histone deacetylase inhibitor (HDAC) like Zolinza that is approved for other diseases.
Kind regards
Birgitta-A

[Donna T]

I would like to know all the different criteria for SCT. I'm just not clear on it all. Like, if they are going to bring all your counts down to nothing with the chemo, why would it matter if you counts were already low?
You seem to have fought this illness very well Bergitta. Wish I could tune in to all of your successes! Keep fighting so I can keep observing!

[Cheryl C]

Hi Donna T

I think most of us on the forum can understand how you are feeling now. It's an overwhelming, life-changing experience to be diagnosed with MDS. I just want to encourage you to find out as much information as you can about the disease (if you haven't already). I don't know whether you've seen the following website already (I have posted it for a few others). I think it's quite useful for explaining about SCTs: http://www.sciencedaily.com/releases...0624173242.htm

To undertake chemo, etc as an older person is a big, big decision. May God guide you to make the right choice for you.

[Birgitta-A]

Hi Cheryl,
Very interesting article about SCT.

Hi Donna,
I don't think the red blood cells and platelets will decrease as much as the white blood cells when the patient gets induction therapy. normal red blood cells live 120 days and platelets 10 days while white blood cells live a few hours.

You know I have been lucky (not when I got MDS but afterwards). I have a good chromosome aberration 12- (and one not so good X-). Then I don't have any other diseases. I responed very well to Thalidomide and now to Revlimid. I have really not needed to fight like many other members.
Kind regards
Birgitta-A