Mds/mpd-uc

[LynnI]

Hello;
I have recently been dx with MDS/MPD-Unclassifiable, does anyone have any experience with this?
Only my RBC's are effected at this point, no chromesome changes. The anemia is really starting to get to me, transfusion dependant with antibobies.
I am managing to go about 3 months between transfusions, but my RBCs is typically between 72 to 82 before this disease it was 135. I am going to rant now, I am sick of this.....do something for a few hours one day and pay for it for the next 2 two days with chills, fevers and sleeping non stop.
I have spent my life as a very fit and active person until now............

Sorry for ranting, I know so many are worse than I and have endure this much longer than I have........

[Birgitta-A]

Hi Lynn,
My dx has changed from MDS to myelofibrosis (a MPD) and back to MDS. I have been transfusion dependent from dx with HGB 70. My lower limit is 95 - I can´t understand how doctors let patients have HGB as low as 72 . Of cause you are tired! Tell your doctor that good supportive care includes having an acceptable HGB and that you have very low quality of life with this low HGB.

Have you tried Aranesp or similar drugs ? If your SerumEPO is less than 500 you could have good response to this kind of drugs that stimulate the bone marrow.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusions, Neupogen 2 injections/week, asymptomatic

[Dick S]

Originally Posted by LynnI

I am going to rant now, I am sick of this.....do something for a few hours one day and pay for it for the next 2 two days with chills, fevers and sleeping non stop.
I have spent my life as a very fit and active person until now............

Sorry for ranting, I know so many are worse than I and have endure this much longer than I have........

Rant all you want, I do sometimes and sometimes it even helps.

I have been feeling like you feel for 28 months now since dx and so far the docs have not given me anything for my MDS, at least you are getting transfusions. MDS moves more slowly in some people, I guess I am one of them in the "wait and see" catagory. Sometimes I just wish (stupidly) that the disease would just "get on with it" so I can start fighting back with some form of treatment. In the meantime I just drag, and I mean drag my butt around and hope for the best. Hope your day gets better.

[LynnI]

Hello;
I developed antibobies after my thrid transfusion, therefore they don't give me tx's unless I am getting well below 80. At this point I have not been started on any meds. I was to start Revlimid, but was refused by our insurance company, this only happened a couple of weeks ago. I also just had another BMB, they are looking at my C- Kit gene now, I go back to my Dr. next week for results and hopefully a new direction on treatment.
My EPO levels have not been low enough for the shots.

Thanks
Lynn

[Neil Cuadra]

If the insurance company is like those in the U.S., their denial may be rather automatic for a drug that hasn't been tested and approved for your diagnosis, but you and your doctor may convince them to change their minds by appealing and making the case for Revlimid treatment, although it sounds like you are still exploring other options.

For those who don't know what MDS/MPD-UC means, MDS stands for myelodysplastic syndrome, MPD for myeloproliferative disease, and UC for unclassifiable. It describes a disease with characteristics of both myelodysplastic disease (and its various subclassifications) and myeloproliferative disease that does not fall into particular known categories such as chronic myeloproliferative disorder (CMPD).

[Kitty]

I also started developing antibodies after a few transfussions so my doctor recommends I get the least amount of them because she said later on "it might be difficult to find blood for you." And since the medications are not helping that would be a big problem and would get me much closer to a transplant date.

I tried Revlimid and I had one of the worst side effects. I developed Hemolitic Anemia. That is when the body turns onto itself and it starts chomping down the good red cells. So, since last February I have been fighting both anemias. The Hemolitic caused by the Revlimid and the RA caused by the MDS. Feww!!

I know we need to concentrate on "quality of life" but some decisions are very difficult to make, and, at least in my case, my doctors leave many decisions up to me as in how low can I let the Hemo go down and still feel OK.

So, sometimes I get to the 8s and I feel I am dragging too much so I ask for a transfussion and other times, I don't know why, I feel OK at the high 7s.

Who knows how things work with this rare disease! I am doing my best at not driving myself nuts and living as normal life as possible.

Kitty

[Birgitta-A]

Hi Lynn,
I got antibodies very soon too and I get Solucortef 100 mg (like Prednisolone) i v every time I get a transfusion.

Too bad that Vidaza not seem to be approved i Canada ! Perhaps you could look for a clinical trial if your insurance company doesn´t change its mind about Revlimid? Avoid trials with AMG 531, that can increase your symptoms. http://clinicaltrials.gov/ct2/result...nada&recr=Open
Kind regards
Birgitta-A

[dee]

My dad has transfusions every 2 weeks not taking any drugs. He has had 40 transfusions and they will check for iron in 8 weeks. He tried vidaza and it didn't work. I don't like just wait and see. He says he doesn't feel sick. He gets short of breathe climing stairs but still maintains normal lifestyle gardening, mowing grass. I want to get a second opinion. He was diagnosed with MDS in December 2007. His Hemog is 8-9 and pltlets 25. White 1

[Birgitta-A]

Hi Dee,
You have probably already read about Aranesp and similar drugs for anemia (best effect for patients with SerumEPO less than 500) and Neupogen and similar drugs for patients with low white blood cells. Both these drugs belong to "good supportive care" and should be given to all patients that need them.

Good that your fathers doctor will check for iron - he/she should have done that after about 25 units of packed red blood cells. Then you have to follow the liver tests because if the liver can tolerate high ferritin (iron) value you can wait with iron chelating therapy (Desferal, Exjade and similar drugs).
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusions, Neupogen 2 injections/week, asymptomatic

[LynnI]

Originally Posted by Birgitta-A

Hi Lynn,
I got antibodies very soon too and I get Solucortef 100 mg (like Prednisolone) i v every time I get a transfusion.

Too bad that Vidaza not seem to be approved i Canada ! Perhaps you could look for a clinical trial if your insurance company doesn´t change its mind about Revlimid? Avoid trials with AMG 531, that can increase your symptoms. http://clinicaltrials.gov/ct2/result...nada&recr=Open
Kind regards
Birgitta-A

Thanks for the heads up on AMG 531. What is AMG 531?

Take care
Lynn

[Birgitta-A]

AMG 531/Romiplostim/Nplate is a new drug (perhaps approved by FDA July 23 2008), that increases platelets. There are several trials for MDS patients but one study showed that 22 of 44 MDS patients had increases symptoms with more blast cells or AML , so I think all patients with MDS should avoid this drug. There are better drugs for low platelets in the pipelines .
http://www.fda.gov/OHRMS/DOCKETS/ac/...FDA-Lemery.ppt
Kind regards
Birgitta-A

[LynnI]

Wow, that is a scary number. Thanks for the info, I'll keep that for my records. At this time only my RBC's are effected the other two are fine....

Thanks again and Take care
Lynn