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[paula A]

HI IM paula,.. ive been dealing with MDS for ten months now,.. I have been disgnosed with RA and there are changes on all three of my blood lines. I am being seen in nyc,.. live in nj,.. recently this “great Hopsital” messed up my HLA testing ,.. lied to me…. and after being retested have 9 out of ten match with my sister.. my brother died at 33 from A.L.L>, im dealing with a disease and now disillusionment with my doctor. Ill go anywhere to live… not up to bmt yet but preparing,… im only 40! I dont know what else to say except help

[eve]

paula

where in nyc are you being seen

eve

[Terri]

Hi Paula, sorry you are at this forum, but know you will find a lot of friends here. I hope you find a doctor you are comfortable with it is so important. Will keep you in our prayers

[paula A]

I hope i dont get in trouble for being specific,.. im being seen at sloane kettering, also i am very open to alternative health care and been doing research on my own but its quite overwhelming if anyone has any specifiics they are willing to send me i would really appreciate it

[Suzanne]

Paula, we all exchange specific information about the treatment, test results,places and doctors we are in contact with for or about treatment. drugs and alternative treatments we have experience with so don’t worry about that. If you put ‘alternative or natural in the search at the top of the page you will come up with specific alternatives people have had success with, names of a nutritionist that works with MDS patients etc.

[eve]

paula

my dad is being treated by dr silverman @ mt sinai – if you want any other information let me know

eve

[diner]

Paul, I’m so sorry to hear of your problems. I know it all so overwhelming and sometimes we don’t know where to turn.Hopefully you will have a good doctor you can trust in. I have secondary MDS and am trying the new drug Vidaza but haven’t been on it long. God bless you.

[rabbit]

Paula,

Hi there, I was treated and still am being treated at MSKCC- Memorial Sloan Kettering. I thought they were great, and my docs were wonderful. I had MDS, RAEB, blasts were about a 12%-progressing into AML if not treated. I was going for tx about 2 times a week for plats and red blood. I eventually had chemo and then a stem cell transplant all done at MSKCC. I’m just shy of 17 months post-transplant.

Let me know what you decide and where you end up going.

Rabbit

[paula A]

thank you everyone for the support it means the world to me,… I was seeing Dr. frattini at sloane..will see dr castro on mon … what happened (in a nut shell) he emailed me my hla test results and told me no match to my sister.. i wrote back and asked on any antigens?? he wrote back no! … surprised cuz my sister and i were told we were matched 8 yrs ago when by brother had a transplant for ALL,… three weeks go by i go to my appt to find out biopsy results he tells me need to do it again cuz red cross cant find my hla results.. my husband and i are like WHAT?? you told me no match then told me no antigen match second time… he covered blamed red cross i went home called red cross… after speaking to his boss and several others found out red cross NEVER GOT MY BLOOD SAMPLE… how such a thing happend?? how a doctor lied to me and tried to cover up no clue… does this mean sloane is awful no! does it mean i have no faith in this dr yes and do i believe hospitals cover up alot of mistakes yes im sorry I do keep you guys posted

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