Have not been on MDS Forums in awhile

[Mikey D]

Well then...where do i start. I was dx with MDS RARS Sideroblastic anemia in 1993 and was given 2-4 yrs to live with out a bone marrow transplant. At that time my hct was at 34. Platelet at 170 and white cell count normal. I have pure red cell dysplasia. I had my second opinion from one of the worlds foremost experts on this syndrome and he concurred with the dx. Many bone marrow test were taken and I (at least my Marrow) was sent around the world. My sisters and I were tested for a possible BMT and the results were not positive. So I declined the BMT and went traditional treatment. This meant procrit which had no effect. I then was entered into a phase 2 study for Amifostine in 1997-98. This to hard no effect on my counts and they started to slowly decline. I left my employment in 1999 as I was near transfusions levels and working was really tough on me and my family. That was a tough decision. After stopping work, my counts went up a bit though always under hct 30.

Fast forward to 2004 and I started on Aranesp. This worked just ok. My counts increased to 28-32 and I felt a little bit better. As time went on I needed to have an increase from 200 mcg every 2 weeks of Aranesp to 300 mcg every week and then an increase in 2010 to 500 mcg. weekly. The Doctor then stated that we could add Nupegen (sp) of the counts did not improve. My avg count had dropped to 28. Somewhere in the process i did oral chelation and my counts went up to around 33. I guess taking iron out of the equation made my Marrow work more efficiently.

I am currently running with a HCT consistently over 34 with counts over the last 3 years that have at time approached 40. Still doing the Aranesp at 500 mcg but have added Indian herbs such as Turmeric, Cumin black pepper and Boswellia in a single pill. This folks was because of a suggestion by my Hematologist to try it. He stated that people in India do not have the rate of MDS that other developed countries experience. So here i am. Still alive and kicking and feeling so much better than i was before. Long term survivor who had a horrible prognosis. I am not cured. I still have MDS and my platelet count has lowered a bit. I am here. Mike in upstate NY.
Thanks for all you do and your time. I am now 57 turning 58 in September. HCT 37 platelets 145 white cells good.

[Neil Cuadra]

Wow, Mike! You've been at this a long time! Not that you had a choice.

Have you had to deal with side effects (headaches, rashes, or anything else) from such regular use of Aranesp?

Are they keeping a watch out for matches for you in the international bone marrow registries? Things could have changed since you first looked. Would you still consider a transplant if you got an ideal match?

[Mikey D]

Hi Ruth
No problems with the Aranesp. Not going the BMT route at this point because of the risks involved and I am kind waiting and seeing where the state of the art goes for the future of treatment. Really cool stem cel things on the horizon. I am fairly fit and robust, for a mutant. Hope to keep it that way.

[bailie]

Mike, you know your situation better than anyone and we wish you well. I would suggest to keep in mind how important it is to have your transplant (if it is in the picture) while you are feeling well.

[Mikey D]

Thanks Ballie for responding. A transplant has always been on the table, it is just that my Doc. believes that there are more risks of undergoing a BMT than waiting and seeing. I am most likely going to be in reasonable shape for awhile so if I can hold out long enough, a targeted cell therapy may be an option. Hope that everyone can benefit from that.

[Mikey D]

Originally Posted by Neil Cuadra

Wow, Mike! You've been at this a long time! Not that you had a choice.

Have you had to deal with side effects (headaches, rashes, or anything else) from such regular use of Aranesp?

Are they keeping a watch out for matches for you in the international bone marrow registries? Things could have changed since you first looked. Would you still consider a transplant if you got an ideal match?

Hi Neil
I have had reaction to the Aranesp. At one time I was concerned because of minor pain in my kidneys though that has gone away after switching out one proton pump inhibitor Previcid (long time use) for another (ranitidine). I have been on the Aranesp for well over 10 yrs. So far so good. I have not had a BMB in over 6 yrs. and have no idea how my marrow looks at this time. I may consider this option in the future once the downward slide begins to occur. Right now my Doc, says I have no expiration date so I am living as normal a life as possible. Latest count was hct 34 pl. 180 White cells 9.2

[Greg H]

Mike,
I think you are smart to hold out as long as possible for transplant. There is excellent statistical research that shows transplant for MDS results in better overall survival when undertaken close to the point of transition to AML.

And, as you say, the transplanters get smarter every year. In my recent visit to NIH, when we discovered that I have transitioned from low risk to very high-risk MDS, it was clear that the doctors there respect that research. Dr. Townsley spoke about a "sweet spot" for transplant. And that is when you transition from low risk to high-risk.

As you know, every case of MDS is different, so that advice may not apply to every individual. But on average, it seems to be good advice.

Take care!

Greg

[Mikey D]

Hi Greg. Thanks for responding. I went to your website and spent some time there. Wow- you have really been through a lot. You are a pretty good writer. I am doing as well as I can be. Some days are harder than hell and other days the sun is out; birds are singing to me. Strange days indeed. I will keep on keeping on for as long as I can. Going through all of the stuff on your site, it appears you have some very competent doctors on your side. I wish you the best for your upcoming transplant. Please keep us posted on how you are doing.

Take good care
Mike

[Greg H]

Thanks, Mike!

Glad you found the blog helpful. I just try to understand some of the technical stuff and get it into plain language.

It's a crazy disease, and one that, in my mind, requires a lot of research, thought, and decision-making on the part of the patient.

Take care!

Greg