Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Need input

This topic has 2 replies, 2 voices, and was last updated 5 years, 3 months ago by Kathy Lynch.

Viewing 3 posts - 1 through 3 (of 3 total)

Author

Posts
January 13, 2019 at 8:30 pm #44927

Kathy Lynch
Participant

I have only been dealing with my “possible” MDS diagnosis for 10 months. After 5 blood panels which my hemoglobin showed 1 9.00 3 have showed in the 10s and one at 11.00. My RBC has been below 3.00 in every test. MY hematocrit has been below 30.0 in every test. my MCV has been above 105 with my MCH has been above 35. in every test. My bone marrow test showed atypical anemia but there was not enough to render the test fully viable. I had chemo and radiation 12 years ago for breast cancer and was exposed to VERY HEAVY second hand smoke for 20 years all contributors to MDS.
My “good-well known” local oncologist diagnosed me with MDS 5 months ago and recommended I start Aranesp. In September I was able to get a second opinion from a well known “expert” in the MDS field. He said I did have atypical anemia but said I should wait for another 3-6 months and have another BM biopsy before starting any treatment. I can not find any info on if it makes any difference if treatment is delayed. I know it is not curable without a transplant but it is treatable…. It has left me feeling uneasy.. Thanks for any input or “opinions” Thank you!

January 14, 2019 at 2:15 pm #44929
mdsfound
Moderator
Dear Kathy, Thank you for posting. I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion, if you haven’t done so already. In your post, you mention that you have seen a few experts. Some MDS patients go so far to even have third and fourth opinions all from our MDS experts. It might be a good time to have another expert weigh in on this for you. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact me at patientliaison@mds-foundation.org.
- This reply was modified 5 years, 3 months ago by mdsfound.
January 14, 2019 at 3:00 pm #44932

Kathy Lynch
Participant

Thank you for time and answer. I am to have another BM biopsy in the next month. I just want to know if there is much “issues” with holding off on starting the Aransp? I was seen at Stanford. They are the ones who said wait. My local doctor who has a number of MDS says start now.
I am tired and achy most of the time but I am contributing most of that to having to take daily shots of Forteo for serious osteoporosis.
I want to be proactive and do what needs to -can be done. If the next BMB is not conclusive guess I’ll reach out to one of the other centers.

Thanks again.
Author

Posts