5q- (deletion), when Revlimid stops working

[Bananamoore]

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

[Pearl]

Originally Posted by Bananamoore

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/

[Diane L]

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.

[Neil Cuadra]

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.

[Matthew42]

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!