Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Jan 24, 2019, 05:44 PM
Bananamoore Bananamoore is offline
Member
 
Join Date: Jun 2016
Location: Chicago
Posts: 15
5q- (deletion), when Revlimid stops working

Hi,
Mom was diagnosed with 5q- in 2013, had transfusions then went on Revlimid in early 2017. It worked for a while, now her counts are trending down every month. Her doctor is an old bag who is fine letting her Hg drop to 6 and then transfuse. I know we need to find a new one, but in the meantime I am feeling lost about the next step. I know that my mom had some percentage of p53 found, but at that time it was low. She is otherwise in healthy condition, all things considered.
We are in Chicagoland area, we met with University of Chicago doctors about transplant a few years ago, but not sure about the team. I am looking for anyone who has information or experience about what happens to 5q- patients after Revlimid.
Thanks very much
__________________
Anna, daughter of Raisa age 63; dx MDS 5q- Jan 2013; receiving transfusions, no other treatment, white and platelets stable but Hg dropping; p53 mutation; started taking Revlimid Jan 2017 5mg every other day, Hg went up but since June 2018 has been steadily decreasing
Reply With Quote
  #2  
Old Fri Jan 25, 2019, 05:46 AM
Pearl Pearl is offline
Member
 
Join Date: Feb 2016
Location: New Jersey
Posts: 18
Quote:
Originally Posted by Bananamoore View Post
Hi,
Mom was diagnosed with 5q- in 2013, had transfusions then went on Revlimid in early 2017. It worked for a while, now her counts are trending down every month. Her doctor is an old bag who is fine letting her Hg drop to 6 and then transfuse. I know we need to find a new one, but in the meantime I am feeling lost about the next step. I know that my mom had some percentage of p53 found, but at that time it was low. She is otherwise in healthy condition, all things considered.
We are in Chicagoland area, we met with University of Chicago doctors about transplant a few years ago, but not sure about the team. I am looking for anyone who has information or experience about what happens to 5q- patients after Revlimid.
Thanks very much
I believe the University of Chicago is an MDS Center of Excellence. You may want to head right there for an opinion.

https://www.uchicagomedicine.org/
Reply With Quote
  #3  
Old Sat Aug 27, 2022, 04:06 PM
Diane L Diane L is offline
Member
 
Join Date: Jul 2022
Location: Toronto, Ontario, Canada
Posts: 1
When Revlimid fails, what next.

When Revlimid fails, what next, I was diagnosed with MDS del 5q in November 2018 at the age of 80 years. I was given Eprex injections and that failed about 18 months then started on Revlimid and have continued on that for over 2 years now. I see a doctor at Odette Cancer Centre at the Sunnybrook Health Sciences, which is a centre of excellence in Toronto, Canada. The doctor says when Revlimid fails there is only blood transfusions. Is this doctor correct, are there any studies one could join.
__________________
DX mds del5q 2018 AFTER 4 YEARS OF WAIT/SEE. PUT ON EPREX FOR 18 MTHS THEN revlimid over 2 yrs. blood counts down so think it may fail.
Reply With Quote
  #4  
Old Sat Aug 27, 2022, 07:41 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Diane,

Make sure that your physician knows that you are interested in clinical trials. Think about whether you?d consider only trials in Toronto or if you would be willing to travel if you?re eligible for a trial elsewhere.

You can search for open MDS trials at clinicaltrials.gov. For each trial they show inclusion and exclusion criteria and contact information.

The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) has identified Antidote as a useful source of information about clinical trials. If you fill out basic information about yourself, they will show you trials for which you might qualify or notify you when they learn of one.

And you can contact AAMAC and the U.S. AAMDSIF organizations directly for advice.

Transfusions have minimal side effects compared with MDS drug treatments, so don?t rule out that treatment choice.

Even when you?ve received care at a center of excellence, it?s still reasonable to seek a second opinion elsewhere, especially if you have any doubts about your doctor?s advice, or if you want to confirm what you?ve been told.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #5  
Old Sat Aug 27, 2022, 09:24 PM
Matthew42 Matthew42 is offline
Member
 
Join Date: Jul 2021
Location: USA
Posts: 130
I know of people with MDS and other blood diseases who've been transfused for two decades or more, all still going strong. The only thing is that they have to manage iron overload after so many years. Iron usually has to fester in the body at very high levels for many years before it begins to cause liver or heart problems; and even then, it doesn't always, as it depends on the person's body chemistry.

No reason to worry about the transfusion route. It's all good.

Peace, health and happiness to you!
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
What to do When the Vidaza Stops Working? mitch Drugs and Drug Treatments 4 Wed Mar 9, 2016 02:48 PM
When a BMT stops working. aprilgrape72 Tell Your Story 3 Fri Dec 2, 2011 10:21 PM
when vidaza stops working rose mcmillin MDS 4 Mon Mar 29, 2010 05:30 AM
New Oral Medication Gives Hope to Patients with Blood Cancer Doug Mylie Canada 0 Sat Mar 8, 2008 12:27 PM


All times are GMT -4. The time now is 01:24 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org