My Dad

[Randall]

My Dad has just been diagnoised with MDS RAEB-II (do not know chromosome information yet). He will be 85 in a few days. He has rheumatoid arthritis. He also is suffering from a skin condition known as pyoderma gangrenosum that the drs. think was brought on by the MDS. His hematologist has recommended supportive treatment due to his age and health and has mentioned arranging for hospice care. I wanted to get the thoughts of people who have been dealing with MDS on our situation. I am meeting with my Dad tonight to discuss options. I am concerned that in my Dad’s context supportive care means send him home to die, without really providing any follow-up treatment. What type of care and follow-up visits should I expect or arrange if we go the supportive care route? Any ideas or suggestions of other treatments for someone my father’s age and health condition? How bad are the side effects of Vidaza? Any thoughts would be welcome. Thanks.

[Suzanne]

Did you get a second opinion? And was your father seen at a Center of Excellence so someone with experience in treating the disease other then supportive care? Revlimid is due for final approval in the next few months as well. You might look into Zarnestra that is a treatment in lui of the heavy chemo for older patients.It should stll be in phase 3 trials and usually has few side effects. Many patients have done very well on supportive care. Guess what it is would depend on your doctor butI think it usually is transfusions as needed, treatment of infections and complications as they come up,etcjust not aggressive treatment to try to stop the disease. However once you call hospice I believe things change to just keeping the patient comfortable until death. Others here might have more experience with supportive care. I believe some have been going that route for an extended time and had some good quality time. It used to be that statistically people who chose that route did as well as those that tried the experimental drugsas far as survival time.. With all the new developments recently I don’t know if that is still true

[Sandy M]

Yes Suzanne,
supportive care for my Joe included regular cbc’s to check levels and he was given tx’s as needed, and antibiotics if infections arose due to extremely low wbc. procrit every week (even though it wasn’t helping)when it was evident that the tx’s weren’t doing him any good anymore it went to “comfort care” meaning only red cell tx. or plts.

Randall,
please don’t throw in the towel just yet, sounds like a second opinion is needed with someone who is specialized in this illness, then go from there, we were told to “get our affairs in order” and that my fiance had only 6 mos. but with supportive care and knowledge about this illness he lived 2 yrs. longer than expected, he also was dx with raeb_2 right from the onset. and was able to maintain a decent quality of life, and got to see our baby son learn to walk.

[lindajo]

At 85 supportive care, stills means transfusions and antibiotics as needed, plus pain medication. A nutritionist is extremely helpful for diet changes and a supplements can be recommended by a homopathic or naturalist. These can also help with the skin condition and his overall feeling of well being.

Whatever you decide to do, make sure that you listen to what your Dad wants. So many times the family listens to all the experts, other patients and they forget to ask the patient what he/she may want. Put your Dad’s wishes first.

[patti]

Randall,

My MIL was diagnosed a year ago with RAEB-t bordering very close to AML (she’s still borderline AML). The doctor told me she had 4-6 months to live. Well, lots of supplements, diet changes, and frequent transfusions (5 wks or so apart) and she is still with us and really feeling quite well most of the time. Although she doesn’t have any other health problems. Don’t let the doctors write your dad off yet. If he takes good care of himself he can live more years and still feel relatively well.

I can’t answer much about the Vidaza other then there have been some folks on the list who’ve had good success with it.

Best Wishes,

patti

[eve]

randall

my dad has been on vidaza for almost 2 years – his need for txs has greatly improved and his blood counts (except for when he is on treatment)have been fairly stable – his platelets remain low and he tires easily – but i do believe that for him vidaza has help slow the progression of the disease

feel free to ask any specific questions you have

eve

[Randall]

Thank you all for your input. I plan to follow up with more information once I have spoken with the Dr. more in depth and I am investigating the second opinion option. Thanks again. /Randall

[Sandy L]

Good luck Randall

We will be pulling for you.

[Author]

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