MDS 5Q- with mutations

[lukacspat]

I was disganosied with 5Q- in August 2013. I was put on revlimid in November of that year and within a few months my HGB, white count and platelets all returned to normal levels. However, I had severe side effects from the revlimid and was taken off revlimid after about 18 months. I was told to expect my counts to drop … but they stayed normal for quite a while. I just didn’t feel well and have been suffering from extreme fatigue ever since then. My doctor did dome additional testing in March of 2019 and found that I had the TET2 and TP53 mutations. I have been concerned about the mutations but doctors are not. I had another BMB in November of 2019, and they found the same mutations, except that now I have 2 different TP53 mutations. My BMB showed blast of 2-3%. My Hgb is holding steady at 11 – 11.4 and WBC is around 3.4. However, I still have feel terrible. My oncologist says that she hasn’t seen a case like mine, but I am very low risk and tells me not to worry about the mutations. She’ll just monitor my blood counts every 3 months or so. Anyone else in this situation?

[Sherry Pratt]

I would go for a second opinion at a center of excellence. Somewhere we’re they have a track record for handling blood cancers.

[Dr. Lin]

Definitely go for a second opinion. Emerging TP53 mutations are suggestive of changing disease biology.

[Marge Begley]

The best thing you can do for yourself is to go to a Center of Excellence – even if you have to travel. It is worth seeing a specialist because not all oncologist are up to date on current MDS treatment. Also I wonder if you ever received Procrit injections before starting on the Revlimid. It is your body and your health and you owe it to yourself to get a second opinion. Feeling poorly, weak, no energy goes with this disease but there are treatments that may help you.

[Bob]

Post your location and someone at the Foundation will give you the names of the closest Centers of Excellence. Include contact information and the MDS Center staff can be even more helpful.

[Author]

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