[Nancy Bartholomew]

Thanks Kathy, Tom and Kevin for responding. I am hopeful that there will be another treatment for me if the Revlimid is losing it’s efficacy. I guess I was just shocked hearing about the possible progression to AML. When I was first diagnosed 4 years ago the doctor told me since I was considered low risk, that my chances of progression to that were very slight. My husband and I are at a point where we were going to make some changes, like moving to a Del Webb. Since I don’t know where my health is headed, I guess we will stay put. I don’t like the idea of putting my life on hold, but maybe we should stick with the known at this point. Have you had to put some of your dreams on hold? If so, how do you psychologically reckon with it? Also, do you have any secrets for dealing with the constant fatigue?

[Nancy Bartholomew]

Thanks for responding Kevin! Are you diagnosed with MDS 5q also? I will look into and ask about retuximab….

[Nancy Bartholomew]

Hi Jimmy,
I have been on Revlimid for 2 years. The first year I was on 10 mg, then due to extreme gastrointestinal issues, and fortunately my blood was showing an improved stability, I was lowered to 5mg. That helped my side effects somewhat, and my numbers have maintained until recently. The other side effects I have are sleep disturbances, extremely dry skin along with some discoloration. I would advise that you up your water intake to help counter the dehydrating affect of the drug. I have been able to maintain my exercise regimen, which is sometimes difficult, but my doctor highly encourages that. I have lived my life as close to normal as I can, and hopefully you will too.
The hardest part about being on Revlimid is paying for it! The drug runs $17,538 a month…. thank God that I have good insurance, and the Leukemia and Lymphoma Society has given me grants for these past two years to help pay my deductibles (you might want to look into that for yourself).
Good luck, and I hope to hear that you are tolerating the drug.

[Nancy Bartholomew]

I am happy to see that there are those that can remain asymptomatic MDS. I probably was for years and didn’t even know it! My bloodwork has been erratic for years, in fact I was constantly being questioned about possibly drinking too much since my red blood cells were always very enlarged. I was also always running borderline anemic. Not until I changed doctors did I get the real answer to my blood issues. Fortunately I was referred to a hematologist in 2016, after a couple of abnormal checkups. I was given a BMB at that time, and was shocked when the report came back with the diagnosis of MDS-del5q. I was put on a wait and see mode with blood work every 3 months. Fortunately I went 2 years before I fell off the cliff! I knew the disease was progressing because I always felt extremely exhausted, and just not normal. I’ll never forget the phone call from the hematologist telling me that my numbers had reached a point that I needed to be put on Revlimid.(Revlimid is the protocol for my type of MDS) Also, I had a camping trip planned to the mountains and he said I had to cancel because I did not have enough red blood cells to oxygenate my body properly at higher altitudes. What a shock it was! That was 2 years ago this September, and I have been on Revlimid ever since. The drug has worked very well for me, other than dealing with sometimes severe gastrointestinal issues and sleep disturbance. Although the past 3 blood tests have shown a downward trend, I am praying that it is due to the stress that I have been under in my personal life and not that the therapy is losing its affect.

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