[Louise71]

Hi Neil, hope you are feeling better soon, and enjoy the game and lots of rest this weekend! (That Peterson sure is something!)

All the best,
Louise/NYC

[Louise71]

Hi Pam and thank you so much for your response and for sharing your experience. It’s really hopeful to know that there’s the possibility of living with this and not letting it define your life. I’m hoping that I might get to that stage, and it’s good to know that presently feeling knee-deep in the worry and anxiety of it all may not last forever!

I have about a dozen other questions I’d like to ask you if you don’t mind, but for now I just wanted to say thanks for your supportive words and for taking the time to write. Your perspective on both the physical and emotional aspects of dealing with MDS are much appreciated!

All the Best,
Louise

[Louise71]

Hi there Jules. I have also been recently diagnosed with MDS-RA. I am 36 years old, and haven’t experienced any infections prior to my diagnosis. I am also on watch and wait, but am planning to push my hematologist and an MDS specialist to see if there’s anything else I might do–diet, exercise, clinical trials, etc.

I have heard lots of conflicting information about MDS-RA. The 3-5 years is definitely the worst, and on the other side of the spectrum is this information on the leukemia website. (see below)
http://www.leukemia-lymphoma.org/all_page?item_id=55445
The information here seems rather optimistic compared to other official stats I have read. Does anyone have thoughts on this?

Thanks again, and best to you Jules. It’s terribly hard to receive this info, but on the brighter side, it feels better (for me at least) to know as much as I can and to be prepared.

Louise

[Louise71]

Hi Jim and thank you so much for your thoughtful and informative reply!  Your description of blasts especially RBC production and abnormal cell proliferation is very helpful.  I love the ipod descriptions–cell phones would also be an appropriate metaphor!

I am really looking forward to meeting Dr. Silverman and hearing more about the vorinistat trial.  Ira has been extremely kind in sharing his experiences, and in looking briefly at the information posted on the NCI website, I’m definitely interested to know more.  If I find anything more about results of the trial, I will post this information to the group (will be seeing Dr. Silverman in about two weeks).

Thanks very much for sharing your experience with your disease progression, and I hope your plans for transplant proceed smoothly.  I look forward to hearing more about your experiences with RBC transfusions, and I hope you experience a high HGB in the coming weeks.

This board has been so helpful in helping me understand MDS and also to learn from and be heard by others coping with it.  I admit, it’s been pretty challenging to share this experience with my loved ones, even if their intentions are to be supportive.  Some of their responses range from “You’ll be fine–this may not even affect you for a long long time” to “Stop reading or you’ll just worry more.”  I haven’t told my parents yet as they will want to stick me in a bubble (my mom in particular) as well as consume themselves with endless worry.  Finding this forum and reading the different threads and your responses to my post are helping me a lot, so thank you!   

All the best,
Louise

[Louise71]

Hi Neil and thank you so much for your thoughtful reply! I will definitely ask my hematologist and MDS specialists those questions. And that’s promising news re:SCT.

It’s great to have another perspective besides “watch and wait”–it feels like just delaying the inevitable, but, if I can do anything to not progress that is far far better!

Best to you,and thanks for your reply and other helpful posts!

Rebecca

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