MDS and operations

[andrew]

Operations

Greetings from England
My mother has MDS 5q- / she’s 67 . She was diagnosed June 2003. She has been on thalidomide (25 mgs) and has responded very well. In fact hasn’t had a txs since Feb and her haemoglobin is 13.6. However she has been told that she has to have a hip replacemnt (it is about to collapse). I am a bit worried as I thought people with MDS should avoid operations as there is always a possibility that infections can be introduced not matter how careful people are. Is this operation very risky?
I would really appreciate any comments/similar experiences.

[Suzanne]

I believe others here have had surgery when absolutely necessary.. Hope you hear from them on specifics. Her counts would determine the danger and they can do things to help-transfuse platelets and put her on antibiotics. Would think that they would be looking at risk vrs benefit on this. A hip in trouble can be very painful..& debilitating. Hope things work out OK.

[lindajo]

Dear Andrew, I know how frigntening it can be when surgery comes up. My feeling is that if a doctor is willing to do it it must be necessary.

I had surgery to have septum removed last fall. I was better instantly because the septum was blocking my airway when I slept and my sleeping improved immediately. It enabled me to have more energy to fight MDS. I think I should have had the surgery years ago, but couldn’t find a doctor willing to take the risk. It also eliminated sinus infections that wouldn’t go away.

I had another friend who had her gall-bladder removed and surgery for carpal tunnel and she saw an improvement in MDS symptoms during the recovery process also. She was 5q- and in a trial for Revlimid at the time.

I will pray that your Mother has good results too. Lindajo

[Kathryn]

Hey Andrew,

before my father’s surgery (colonostomy) they loaded him up w/ blood, platelets, antibiotics and another medicine to boost his immune system. He came through the surgery beautifully. It sounds like your mother’s counts are stable, which is very good, but I am sure the doctor will monitor them closely before, during & after just to be sure.

Best wishes and prayers for your mother & you.

Kathryn

[andrew]

Thanks for your prayers and thoughts – as always very much appreciated.

[Monica]

Hello Andrew

My name is Monica, I am from Mexico, I just suscribe to this page today. My mother has the MDS syndrome and I am about to take her to USA because I don’t trust treatments here in Mexico that much. Please tell me, how this thalidomide worked for your mother. The doctor wants to practice her the ATG treatment, but I don’t trust this procedure very much. Have your mother tried it?

Hope she’s recovered from her surgery. Mónica

[Author]

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