Not wanting any treatment

[Ravindra deshpande]

my sister who is 67 years old is did with MDS RAEB I about a month back. The doctor has given her a bout 4 to 6 months and has suggested vidaza course of 5 days to start with and says it may give her a few more months. My sister has gone through the internet to find out the side effects of this treatment. She has decided not to take any treatment except blood transfusions as required. She feels that rather than suffering from the ill effects of the vidaza treatment to extend her life by a few months she would rather spend her remaining time with a better quality life. She is very positive and does not suffer much from fatigue. Any opinions or advice please?

[Jill]

Has she been tested for mutations? Some of the mutations offer a better prognosis (SF3B1, for instance). I am RAEB-1, but have the SF3B1 mutation, so my hematologist/oncologist told me that I don’t need any treatment yet, just monitoring. I believe the 5q mutation is good, also.

[Sarah Leftow]

I can understand not wanting treatment. I also have SLE and a lot of other issues going on. The MDS caused ITP initially but it’s becoming more serious. I did try the Dexamethosone for 4 days – the 40 pills – hurt my stomach terribly. The platelets went to 126 and in 4 weeks, back down to the 40’s. I’ve had DVTS’s and on Coumadin for life. I’ve had 2 blood transfusions for anemia until my hematologist (finally) discovered I was B12 deficient. I can’t figure out which disease is worse – the MDS, the SLE, Raynaud’s, ITP, etc. I told my husband this morning that I feel like I’m in pergatory. I have no “end” and no beginning. Every day is a sick day at some point in time. When do we learn to cope? I was diagnosed at age 67. My Dad had Lupus and when it hit his kidneys and heart is was goodbye. He was 67. My kidneys are showing signs of being affected now. My doctor calls my labs “stable.” I hate the term!

[Joyce Armes]

My husband went thru the 6 months of treatments with Vidaza. The treatments were somewhat uncomfortable but I feel like the shots were well worth the effort. There is a slight possibility of going thru a second treatment of 6 months and He is confident that this would be a good thing to do. Please give this your prayerful consideration?

[mdsfound]

Hi Ravinda, Was she seen by one of our MDS Center of Excellence physicians? https://www.mds-foundation.org/mds-centeres-of-excellence/

[Hopehope w]

Hi,Sarah,
I have SLE too. and recently the bone marrow showed MDS.
The whole results are not ready yet(worrying). What was your treatment for lupus? Hope we can talk more.

[Author]

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