Inquiring Minds Want to Know - MDS

[For_Emma]

Hello - I am very new to the MDS Forum this is my first post so my apologies if I do or say something incorrect. Feel free to correct me. First I want to thank all who take the time to read and respond to this post. My name is Cynthia my mother Emma who I am representing on this Forum page is 78 and recently diagnosed with what we believe to be High Risk MDS. Her Doctors are of varying opinion. When we started this about 5 months ago they put her on Procrit however there were no changes other than her counts went down. Then they tried Revlimid again without any positive changes in the counts. As a matter of fact over the past 5 months being on one then the other drug her counts dropped more than what they were prior to taking either of the drugs. The one Doctor is of the mindset that he can try keeping her on transfusions to see if this will bring up counts. About 3 weeks ago she had 3 bags of blood and 1 platelets and as of today (3 weeks later) her counts are (WBC 2.6, Platelets 27, Hemoglobin 6.6 and RBC 2.10). The one Doctor would like to put her on Vidaza but I am of the mindset that if we can bring her counts up via transfusions with medications to remove the excess iron and immunosuppressant’s to control the antigens then why should we jump to the Vidaza. This evening we received a call from one of her Doctors who would like her to be tested for Paroxysmal Noctumal Hemoglobinuria (PNH) of which I read could turn into Aplastic Anemia. In either case they all seem to fall into a similar “blood disorder” type concern. Anyway I guess I am just asking readers what they think? Thanks blessings to you all and thanks for helping me kick-of this amazing opportunity for knowledge share.

[DanL]

Cynthia,

As you have probably gathered, MDS is a complex disease, and it sounds like your mother's diagnosis may have several components to it. Typically, MDS is a separate diagnosis from AA, and PNH is sometimes associated with AA. The parts of the diagnosis that are missing from your description include marrow cellularity, cytogenetic changes to your mother's marrow, and blast percentages, which are all helpful when determining whether your mother has AA or MDS.

It is a little unusual to begin revlimid without first identifying that she has a 5q deletion as this is the primary indication for revlimid in MDS, but is sometimes also used in multiple myeloma and some forms of myelofibrosis. Procrit is used from time to time with MDS as a primary treatment, but only after testing for epo levels.

Lastly, Vidaza is considered the standard of treatment for MDS in the absence of the 5q deletion mentioned above, so it would seem like a normal choice moving forward, unless your mother had other health conditions that prevented use of Vidaza. Palliative treatment such as transfusions of platelets and red blood cells would be the other primary alternative, but there are limitations to this approach as well, since transfusions do not alter the course of the disease in any meaningful way.

Sorry for the long response. I think the primary take aways are to 1) confirm that MDS is her diagnosis 2) find out the blast count, 3) check for cytogenetic changes and see what they are, 4) find out what the remaining treatment options are and why.

Good luck and good health to your mother.
Dan

[For_Emma]

Dan - First thanks so much for your quick response to my entry level questions. I am in the process of collecting all of my mothers medical records from her doctors and the Hospitals. Once I have this we will either go to the Moffitt Cancer Center or Mayo Clinic to obtain a second opinion (which is long over due 1 year with MDS). During the secondi opinion evaluation I will ask them to education me on what you suggested in your response to my first post which was: (1) Marrow Cellularity (2) Cytogenetic changes to Marrow (3) Blast %, (4) 5q deletion & (5) EPO Levels.

My mother was admitted to the hospital last evening as she could not stop a nose bleed. Her counts were WBC: 2.6, Platelets 27, and HBG 6.6. I believe that her platelets dropped to 10 by time they gave her the transfusion. The Dr. told me that transfusions ever two weeks was not a good option. They are struggling with why her platelets are not going up. I know that all her tests show she has an enlarged spleen. A lot of the reading I did said that if the spleen is not functioning properly it could prevent the platelets from passing through the spleen. I also read that there are different types of treatments such as steroids that might aid in preventing the antibodies or autoimmune from stopping the platelets from passing through the spleen. What are your thoughts?

Question 1: Any suggestions on what can be done to increase platelet counts

Question 2: At what count levels would you consider moving away from transfusions and onto another treatment? Also what treatments have you seen as being effective.

Thanks everyone I am just trying to get my arms wrapped around all of this.