Another new member

[Kathy Lynch]

Hi, Really glad I have found this group! Please bare with me as I am not “up” on all the terms…quite a learning curve. I turned 65 this year.. 12 years ago I was diagnosed with breast cancer. Treatment was dose dense chemo and radiation. I was also exposed to huge amounts of second hand smoke in my job for 20 years 3 of the biggies for MDS.
A blood test in April showed microcytic anemia. I had a PET scan to check for metises, it was clear. After 3 months of blood test showed my RBC between 2.72 and 3.07 with Hemoglobin running from a high of 11.5 and a low of 9.5 and a bone biopsy I was diagnosed with Myelodysplastic Anemia. My doctor has prescribed Aranesp every 2 weeks, which I will be starting at the end of the month. I have been very lucky to get in to have a second opinion from Dr. Greenberg who is on the MDS board next week. I also have been diagnosed with severe osteoporosis, so I will also be starting treatment for that, which are daily shots of Erythropietin. I am very lucky to be blessed with an amazing family and the support of amazing friends and to have found the MDS Foundation!

[Carol Wiley]

Welcome!

[Joseph Agustin]

Welcome. This place has helped calm my nerves, as well I found a person on here who has offered solitude when all else seem to have failed. It’s a learning curve that’s right, but it’s amazing how quickly we can learn when it’s pertinent. Sounds like your on the right path

[Donna]

Kathy,
Are you taking the Erythropietin for osteoporosis? I too have osteoporosis and pre-MDS. Does your doctor feel there is a connection in any way between MDS and osteoporosis? I have an okay bone density test in Oct. 2017, then in Jan. 2018 I got a compression fracture in thoracic spine from coughing. X-ray says diffuse osteoporosis. That was quick. Something seems weird. I had an MRI which showed invasive bone marrow process in spine which could be anemia or other form of blood disorder. I have held off on treatment for osteoporosis because of all the side effects from most of the meds. I had not heard of Erythropietin though. Can you tell me anything about it? Thanks.
Donna

[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!

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