Mom has MDS and her doctor has given up

[Patty Kilyanek]

My mom has had this for years. Tried Revlimid, Chemo and one other drug to no avail. She has been getting transfusions all along. The chemo as of recent through a port was not working. They took her off that and put her on medicine to help with the affects of too much iron from the transfusions she is continually getting which now are about every 2 weeks. She just had a visit with her oncologist who pretty much wrote her off and has nothing else to offer her other than for her to keep getting transfusions. She is 81 years old. I cannot believe that this is all there is and am frustrated and sad as she is very depressed with this latest news. Anyone have any insight as to what, if anything, can help her?

[rar]

did she consider a transplant?

[Patty Kilyanek]

That was suggested very much on the fly when she first had her bone marrow tested( she has had it done twice now) and never spoken of again. In all the reading I have done on this site, I see that is an option that could work. The other caveat of this is she just had back surgery on fractures that occurred in her sleep a few weeks ago. (possibly doe to chemo? or osteoporosis?) So, we are taking this slow. I will do the research and broach the topic once I have all my facts straight. The kicker is the doctor told her that there was nothing left to do yesterday, the day before her surgery which was this morning. Great timing in my opinion. Man!! My mom is very loyal to her doctor since he “saved her life” almost 20 years ago from colon cancer, the root of all the evil, so it is going to take some coaxing to get her to get a second opinion. The fact is that we tried to have her get a second opinion almost 2 years ago and she would not hear of it. I am wondering if now that her doctor has nothing left for her, she would consider the second opinion now.
Thank you so much for your input!

[Anonymous]

I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

[Heidi Resnick]

Hi, I’m so sorry to hear about your mom. It sounds just like what I’ve been going through with my father, who is 87. He was getting treatments of Vidaza along with monthly blood transfusions for the last 3 years. Last month his doctor said the treatments weren’t working and stopped every thing and told him he only has a few months left to live. He’s now on hospice care, having resigned himself that the end is near. I can’t believe that there is nothing that can be done. He’s saying goodbye to his friends and family and I’m looking for something — anything that will prolong his life.

[Patty Kilyanek]

Thank you for your response. My mom is open to a visit to your center in New Jersey. She was wondering if any of this is covered by her insurance, Aetna Medicare. I further found out tonight that the last bone marrow biopsy zeroed in on her more precisely and found it to be “5 Q minus syndrome”. I have yet to look this up but can you advise on this? I am going to click the link you provided. My mom was very intrigued that there is a center, your, that specializes in MD. I told her that I received a packet that I am in the process of beginning to read. She was also entertaining trials in Philly but I think a visit to one of your centers might be more beneficial. Thoughts?
THANK YOU!

[bobderek]

Hi

The center in NJ is just the headquarters for the Foundation, not a Center of Excellence.

If you are near Philadelphia there are two centers near you. Typically there is a big difference when you go to a hospital that specializes in MDS.

I recommend you contact one or both of the centers right away. I posted the contact link for the head of each center.

Fox Chase Cancer Center
Philadelphia, Pennsylvania
Patricia Kropf, MD
https://www.foxchase.org/patricia-kropf

University of Pennsylvania Cancer Center
Philadelphia, Pennsylvania
Selina Luger, MD
https://www.pennmedicine.org/providers/profile/selina-luger?fadf=PennMedicine

• This reply was modified 7 years, 2 months ago by bobderek.

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