[Tereze Gluck]

Thanks so much. I have read up thoroughly on the risks and understand them very well. But the fact is, there ARE no alternative therapies For me. I have chemo-relatedMDS with a P53 mutation. Statistically, Vidaza works an average of 5 months for people in my situation. So in my mind it is CERTAIN death vs. POSSIBLE death. Also: 20% mortality = 80% success. Also: I am robust and vigorous, both physically and emotionally. I will not willingly agree to ‘two more years’ if there is even the SLIMMEST chance of a more life.

I live in NYC so if Sinai turns me down, I can still try MSK , Weill-Cornell, etc. but itt would be hugely helpful if I knew ahead of time which Centers might be more aggressive /less conservative in their willingness to give patients like myself a chance for life.

[Tereze Gluck]

May I ask, what kind of treatment are you receiving for the AML? I thought AML required transplant. I’d be interested to learn about your treatment.

Sorry I can’t be of use with your other questions! But thanks for any info you can provide.

[Tereze Gluck]

Today I met with transplant surgeon. I felt like Clarence Darrow Lawyer for the defense… I was advocating for myself, up against a reluctant doctor. He explained that they have a panel which decides these things, and that my case causes some concern. Now, I have advanced high-risk MDS and I will certainly die, and soon, without a transplant. I was literally fighting for my life.

If they turn me down, I will approach other centers. But it took so much out of me, this arguing my case – truly I felt like a lawyer pleading for my clients life – the client, in this case, me. The idea that I will have to do this repeatedly is deeply disheartening. So, if anyone knows of centers that might be more amenable to a borderline candidate, I would greatly appreciate hearing from you.

Many thanks for your help…

• This reply was modified 5 years, 9 months ago by Tereze Gluck.

[Tereze Gluck]

RAR: I was just told by Mt Sinai that I’d they turn me Dow, even if I came up with the money they would not perform the procedure. They have a transplant board that evaluates the case and if they won’t do it, that’s final. So if you DOmknow of a specific center – that caused you to answer ‘yes’ to my earlier question – can you tell me what that center is?

• This reply was modified 5 years, 9 months ago by Tereze Gluck.

[Tereze Gluck]

Cecile, I know two people my age who handled the BMT very well. But vidaza could never give me more than two years, and that’s not enough for me. I feel my only option is the BMT. It’s a brutal procedure, but on the other side lies , I hope, getting to see my granddaughter grow up!

[Tereze Gluck]

Whew! Thanks. I haven’t been turned down yet, but it could come to that..

[Tereze Gluck]

I am worried I will be told I am not a ‘candidate’ due to prior ovarian cancer. Since I will die without a SCT I am determined to have one and try to find a way to finance. But will the hospital perform it if I can come up with the money?

[Tereze Gluck]

Hi Cecile. I also have high-risk advanced MDS, chemo-related. I am 72years old so I don’t see any advantage in treating for a year or more when ultimately I will have to have a bone marrow transplant. I’ll just be that many years older and sicker.

You don’t mention your age, ut I think that plays a part in your approach. If you’re young or middle-aged you have time to run with a treatmentand still get a transplant if the treatment stops working. If you’re around my age, you might go for the transplant sooner rather than later.

[Tereze Gluck]

Betsy, you should absolutely get your dad to one of the MDS Centers if Excellence.. probably Dana Farber. I also have very advanced disease and from everything I’ve read only a transplant will help at a certain point, and your Dad is too old, I doubt they will give him that. But perhaps Vidaza or decetibine and transfusions May give him more time. But the only ‘cure’ is a transplant. It’s just awful. Brutal.

[Tereze Gluck]

I’m terrified… every day I seem to get worse. My hand is purple and swollen… I watch the discoloration creeping up my finger. My body is covered in black bruises. I get worse every day – that’s what’s most terrifying. I’m starting vidaza on Monday but I know that even if it works it takes a while to kick in… having a platelet transfusion tomorrow… but I’m really feeling discouraged. Is there any hope out there…? The dr wants to start with vidaza but I’m wondering if I should have a transplant right away, if a donor could be found. Can one live with this much bleeding?

[Tereze Gluck]

Hi ray. I don’t know if I have your exact situation but i sure have everything else. I have chemo-induced MDS – the highest risk, worst prognosis form of the disease. Multiple abnormalities. I’m pretty deveststed and spent the last two days just sitting on the couch trying to absorb this information. Will probably need a bone marrow transplant.

If you’re scared of the biopsy itself, that wasn’t too bad. Normally they just give s local but I insisted they give me drugs /twilight sleep. They gave me Ativan, Demario and Benadryl. I was awake but loopy and the procedure didn’t hurt. Two small twinges but really nothing bad. So don’t be frightened of the biopsy.

The disease itself / well I’m about as bad as it could be! They will start me on Vidaza and see how that works. Best of luck to both of us!

Best,
Tereze

[Tereze Gluck]

My mds is chemo-related, with extensive chromosomal damage. Its hard to envision how even the healthiest foods could improve this – given the chromosomal damage. Ive been esting papaya and pomegranate anyway, but none of my drs think it will help. Im pretty devestated – i just learned the full extent of my disease, highest risk, worst prognosis. I dont want to give up but the situation does appear very bleak.

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