Houston forum
Home Demo › forums › Patient Message Board › Houston forum
- This topic has 9 replies, 5 voices, and was last updated 6 years ago by Donna.
-
AuthorPosts
-
April 19, 2018 at 12:36 am #36225Beth StanalandParticipant
Houston forum
Is anyone going to the form at M.D. Anderson Hospital in Houston Texas this Saturday, the 21st. I live in Houston so I think I’ll go. Just wondering if I might Get to meet any of the people that have been posting here.
April 19, 2018 at 9:17 am #36226Allan RomriellParticipantBeth, I am in Idaho so won’t be there but would be interested in what you learn there. I hope to make one someday but the closest I have found so far is 400 miles away.
Take care,
AllanApril 21, 2018 at 10:20 am #36236Lillian EvansParticipantBeth, If you go, please post what you learn. There is so much about MDS that I don’t know.
April 21, 2018 at 12:28 pm #36237staceyParticipantLillian,
You probably know this already, but just double checking– Did you see that you can access transcripts (and audio it seems) from previous patient forums? Both from past years and this year. You can find it on this https://www.mds-foundation.org website. Along the top, go under “For Visitors and Patients” and under there click on “Patient and Caregiver Forums”. I especially find the transcripts from 2017, etc., to be particularly interesting where you can read the question/answer sessions between doctors and patients.
Take care,
-Stacey (5q- MDS, diagnosed 2004, on Revlimid since 2004)April 21, 2018 at 6:11 pm #36238Lillian EvansParticipantStacey, New to the forum and did not know about this information. Will look all information is helpful. Thank you so much
April 25, 2018 at 9:15 pm #36299Beth StanalandParticipantAllan, did you see Stacy‘s post about accessing transcripts from the forums?
Let me know if you’re not able to access the transcripts and I will post here what I learned at the forum.
April 26, 2018 at 9:05 am #36307Allan RomriellParticipantBeth,
Yes I have read some of the past forum notes. They have been helpful. Thanks for thinking of me, appreciate your kindness. Take care.April 26, 2018 at 11:31 am #36316Lillian EvansParticipantStacy, What exactly is Revlimid ?
April 26, 2018 at 1:26 pm #36317staceyParticipantRevlimid is a white, lightweight capsule manufactured by Celgene company and a derivative of the thalidomide drug. Revlimid works especially well in 5q- MDS patients, but is also taken by other MDS patients and Multiple Myeloma patients (I believe in combination with Dexamethosone or something like that).
Over time, Revlimid can raise your hemoglobin level (and Red blood cell count) so that the patient can be transfusion free. It will fix the size of the red blood cells so the red blood cells are not abnormally large anymore and the hemoglobin carries oxygen better. It seems to fix the defect in the 5th chromosome.
I take it so that I don’t have to live on constant red blood cell transfusions, because after a high number of transfusions, you would need to watch out for iron overload because packed red blood cells in the transfusions are full of iron. I think there is a treatment (Exjade) to help with iron overload, but Revlimid daily is an easier route for me than living on transfusions.
There are side effects from Revlimid which include things like constipation, diarrhea, slightly suppressed white blood cell & platelet counts. Also, the red blood cell count will drop for the first 6-8 weeks until the
Revlimid starts working. The benefits are that I can be transfusion free and not out of breath.April 26, 2018 at 8:56 pm #36319DonnaParticipantYou can also get a lot of information on LLS.org (Leukemia and Lymphoma Society). Click on patients and caregivers on the top right. Then you will see a list and you will see MDS. They, like this organization, can send you material to read. Donna
-
AuthorPosts
Register for an account, or login to post to our message boards. Click here.
- You must be logged in to reply to this topic.