[Kathy Lynch]

Hi Donna, sorry for the delay in getting back to you….it’s been a crazy 6 months getting all the tests and opinions done so I could make some kind of informed decision.
A couple of questions.. Did you see a hematologist? Have you had a few months of blood tests? And what about a bone biopsy?
I went with Dr. Greenburg and his Fellow Dr. Spinner’s recommendations, to a wait and watch of the MDS and to go ahead with treatment for the osteoporosis. They agreed with my endocrinologist’s recommendation to treat it with Teriparatide, brand name Forteo. In fact I give myself my first injection tonight.
All three doctors who are involved in my MDS, actually called ICUS said that treating the osteoporosis should not cause any problems and that if I didn’t start treatment I was going to end up having the issues you have experienced. It is a little weird to have both….but as I have found you often have to get a number of tests to get to the bottom of a a diagnosis… and with many diseases we will never really know why or how we got them….. All my best to you!

[Kathy Lynch]

Just a note…. MDS is not curable without a Bone Marrow Transplant. Those of us who do not meet the Bone Marrow Transplant requirements…and there are many… have what is called treatable MDS and can live MANY years with it. It is important to get a second opinion from a doctor or medical center who has good knowledge of MDS. If your second opinion is still confusing do not hesitate to get a third. You can have your records sent to MD Andersen in Houston and they will do a review. Keep on fighting!

[Kathy Lynch]

Hi Ellen, While I am new to MDS, I agree your MDS does not sound like it is low grade. I would defiantly get a second opinion. Have your RBC numbers improved at all with treatment.

Big hugs and all the best

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