Help needed

[Imshal Farooq]

Hi. My father is 48 years old. Last year in October, he complained of shortness of breath. His Hb and platelet count was low. He went to the medical institution affiliated with Coloumbia University and his final reports read :”Chances of mild MDS cannot be excluded.”
His general diagnosis is MDS. He has been taking steroids amd vitamin supplements for the 4 months now.
I wanted to know about the possible treatments of this disease and whether he can get rid of it permanently.
This disease has shaken up our lives pretty bad. The prognosis and survival rate, success rate stuff on the internet is horrifying and it makes me so worried and terrified.
Please suggest what out next step should be and how to get rid of this disease once and for all.
Regards.

[Anonymous]

Thank you for your post with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Some patients even seek third and fourth opinions. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to ahassan@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

[LeAnn Duke]

Hi Imshal, my name is LeAnn and I have MDS. I am 59. I was diagnosed in June of 2015. It is kind of rare that younger people get this disease. Usually as I’m sure you have already heard it happens to men over 65 and into their 70’s and 80’s. I’m sorry that you all are going through this and hope for the very best outcome for your father. I know that all this is scary and I encourage you all to see other Dr’s and get other opinions and make sure of the diagnosis. It never hurts to make sure of what you are dealing with!!

From everything I have experienced with this disease I can say that it is very unpredictable and inconsistent. One physicians assistant labeled MDS as a chameleon disease! It is changeable! There are different types and different stages. My type has changed since I was first diagnosed from refractory anemia with ringed sderoblasts and low risk (which basically means that only my red blood cells were involved and those cells are abnormal and have rings of iron around them. The red blood cells are also enlarged and abnormally shaped and die before they have a chance to mature which causes me to be severely anemic. This brings with it the shortness of breath and heart palpitations and just general fatigue. Over the past year my platelets began to drop slowly and my WBCs as well, so they have decided that I am at intermediate 1 stage (still considered low risk) but I am blood transfusion dependent and recently have begun having an occasional platelets transfusion. I started out getting blood once a month to bring my hemoglobin up and now receive blood alternately every two to three weeks.

We have sought three opinions. My local oncologist, Cancer Treatment Centers of America in Zion, Illinois, and MD Anderson in Houston Texas. We settled with MD Anderson in Houston because they offered for me to be in a 6 month research study using either Vidaza (azacitidine) or Dacogen (Decitibine), two drugs that are FDA approved for the treatment of MDS. MD Anderson is one of the top hospitals that deal with MDS so we wanted to see what they had that perhaps the other hospitals didn’t. The research study involved a study of each of the drugs and instead of the patient taking the drug by infusion for 5 or 7 days a month, they would give the same dose of the drug in three days by infusion. I was given the Dacogen (Decitibine) and I have finished my 5th cycle or 5th month. We will go back to Houston in a couple of weeks and I will have a bone marrow biopsy to look at the cells and see where we stand. Now, let me say, we did not have to go to Houston each month. My local oncologist was willing to work with the Dr at MD Anderson and give me the infusions at his office for the three days. We only have to go to Houston every three months which makes it much easier on us.

We don’t know if the treatments are working yet and this is the type of disease that we have to wait and see about.

I certainly don’t mean to scare you, but only help you realize there are people out there who are dealing with this disease and many who are doing well balancing their life and this disease. So if you have any questions and would like to email me, please feel free to do so! My email address is brileighsmia@yahoo.com.

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