Share Your MDS Story

My MDS Journey

Started in 2000 – when my family doctor noticed that my HGB was going down slightly during my yearly physical.  After this occurred three years in a row, he referred me to a local Hematologist in 2003 who told me he didn’t know what to make of it, so I would return to him yearly until he decided to do a bone marrow biopsy.  That was in 2006. I was 56.

Results showed that I had RARS.  Refractory anemia with ringed sideroblasts.  At that time my HGB was around 10-11.

The Hematologist didn’t give me any information, just told me not to look it up on the internet as I could have this for years without needing any treatment. It was only after surfing the web that I found out that what I had was considered a blood cancer.  Apparently, some Hematologists don’t know much about the disease! I eventually found the MDS foundation while searching the web and realized that I needed to go to an MDS Center of Excellence.

I consulted with Dr. Porter at University of Penn where I had my second bone marrow biopsy with pretty much the same result - RARS.  It was suggested that two of my four brothers  (two of them were over 70 and were considered too old) get tested to see if either of them might be a match for a bone marrow transplant.  Up until then I was reluctant to tell my daughter, family members and friends about my diagnosis because I didn’t have any idea what direction my MDS would take.

Neither of my brothers was a match but I was put in the bone marrow database just in case my MDS got worse.  It was suggested that I was not a good candidate for a bone marrow transplant at the time, since my MDS was in the low risk range.

I then saw a specialist at Jefferson, Dr. Emanuel Besa, whom I had met at an MDS Foundation seminar.  Dr. Besa was conducting his own trial with a drug called Accutane which is basically high doses of Vitamin E.  He had achieved some positive results that showed that Accutane could delay the need for transfusions.  And so I started Accutane, which I had to buy from Canada since it was not approved for the treatment of MDS in the US. I took that for about a year, but then began to need regular transfusions in September, 2009.  Dr. Besa then referred me to Dr. Erev Tubb at Crozer Hospital.

Under Dr. Tubb, I was tried on Procrit, then Aranesp then both together, which did not work.

I was then started on Revlimid.  As part of the protocol, it was required that I have bone marrow biopsies before treatment began and after it failed. (I’ve had 7 bmb’s and found that some doctors are much better at performing them than others)!  Last one I had was done under interventional radiology which was great, over before I knew it.

Revlimid – 3/25/2010 – 9/12/2010 – Was transfusion independent for 143 days, then stopped working.

Tried again 10/25/2010 – 12/14/2010 – No response.

Vidaza – 2/14/2011 – 7/19/2011 – Was TF independent 33 days and 42 days, then no response.

And so, after Vidaza failed, I thought for sure that I was a goner! 

e again.

11 years later I have many antibodies but the blood bank always comes through! Exjade (Now Jadenu or Desferasirox) since 8/13/2011 for iron overload.  Side effects diarrhea.

Since then I've been on Reblozyl, Dacogen and Rytelo.

Rytelo caused by platelets to go down and I wound up with Sepsis, in hospital 3 weeks,  Had to have my port removed due to infection.  Got a new port last December and have been on a long slow recovery.

Doing much better now, developed bad sciatica from being in hospital bed so long and i'm dealing with that.  

For the last couple months, going 3 weeks between transfusions instead of the usual 2 so maybe the Rytelo had some effect on that.

At present, I am 75 years old.  Although being transfusion dependent for the past 14 years has been inconvenient, I am thankful that the blood has been available.  At the beginning of Covid, when there was a blood shortage, I sometimes could only get one unit.  That was kind of scary for me – at times, my HGB went down to below 7 and when that happens, my quality of life suffers.  I need my husband to drive me to the hospital and it becomes difficult for me to walk the distance to the infusion room.

Things are a little better now with the blood shortage and as long as my HGB stays in the 8’s, I can take care of myself, although I do sleep a lot and nap a lot also.

Hope this is helpful to newly diagnosed MDS patients.  When first diagnosed I thought I would only survive 5 years.