[Katrin]

del 17p13

by Katrin on Tue Feb 08, 2011 2:44 pm

Hi there outside,

my father suffers from multiple myeloma since oct. 2010,
the inducation therapy startet with Velcade, now they´ll do a transplant.

is my father a "high risk patient" by having this deletation 17 only on 11% ?

(there were no other aberrations found by FISH)

in our hospital, the doctors do not have as much experience with this special kind of myeloma?
What´s the best treatment for my father?

Does he have the chance to get a long remission ?

Please help us,
yours,
Katrin

[Katrin]

Re: del 17p13

by Katrin on Wed Feb 09, 2011 1:20 am

Katrin wrote :

> the inducation therapy"

mean:

induction therapy;)

[Laura]

Re: del 17p13

by Laura on Wed Feb 09, 2011 3:18 pm

I would get a second opinion regarding which regimen to use for induction, or preparing for stem cell transplant. I have multiple myeloma as well and underwent "induction" last year. My regret is that although very effective, the Velcade, if given more than once a week and at high dose, can cause severe neuropathy. Velcade/Dexamethasone/Revlimid is a very effectivie regeiimen, but must be dosed properly. There are also new drugs available for newly diagnosed multiple myeloma pts. A new "Velcade" is in clinical trail and perhaps your father would qualify. It is called "Carfilzomib". It is worth looking into. Good luck,

[JimOmel]

Re: del 17p13

by JimOmel on Tue Feb 15, 2011 5:07 pm

Dear Katrin, Most likely your father has a chromosomal alteration called 17 p53 deletion (not 17 p13). What that means is the p arm (the short arm) of chromosome 17 is absent or not functional. This is a very serious partial deletion, not only for myeloma, but for a large number of cancers. At the p53 locus on chromosome 17 is genetic information that encodes for a very, very important tumor suppressor gene. If the short arm of chromosome 17 is not functional and your father lacks this potent tumor suppressor, he is at the HIGHEST risk category for poor outcome for his myeloma. (There is no natural "suppression" of pre-cancerous changes that happen in all of us all the time). While there just isn't a good treatment for this particularly nasty condition, Velcade is the best available drug right now. Very seldom would I ever suggest allogeneic transplant for ANYONE with myeloma, but patients lacking p53 suppressor gene are the one exception. If (and only if) he is physiologically able to stand the rigors of the awful procedures, he is most likely a candidate for an autologous transplant folllowed by a planned mini-allo.....also called a RIC Allo (for reduced intensity conditioning). Myeloma patients do poorly in general with allogeneic transplants, but those with your father's high risk genetics need very aggressive treatment to have a chance at significant progression free survival. This answers the question you specifically asked, and don't be lulled by the 11% figure. He has very serious disease! I know this isn't what you want to hear, but his doctor, or someone, needs to be perfectly honest with you. Good luck, Jim Omel

[katrin]

Re: del 17p13

by katrin on Wed Feb 16, 2011 1:41 pm

Dear JimOmel


First of all, I´m sorry for my English, I´m from Germany and learning English at school is long time ago.


"He has very serious disease! I know this isn't what you want to hear"
Of course, we have been informed by the doc yet, that he is a "high risk" patient,
but the doc also told us, that having only this one abnormality the risk is not that bad.
I asked the doctor if they´ll do a ric allo and the first answer was NO, he would´nt recommend it,
but know they are searching for an allogenic transplant?!
sometimes i really do not understand what the doctors are planning.
Next week the auto. transplant with Melphalan starts,
i hope he can reach a good remission.

Are ALL the del17 patients high risk patients?
I just can´t believe, that my father has such a high risk disease.

greetings form Germany,
Katrin