Okay, so I posted the original question 3 days ago, with no replies. I've had 106 views. It kind of scares me that no one has responded. Is it because there just doesn't happen to be anyone who reads this forum, who has the same chromosome deletion? Or is there another reason??? Just wondering....
My husband was diagnosed with multiple myeloma in June 2010, at almost 56 yrs. of age. I would like input from anyone who was also diagnosed with multiple myeloma, with deletion 13q with p53 deletion. I'm curious as to your date of diagnosis, treatment, SCT, etc. The oncologist told us that we are probably looking at a 1 to 2 yr. remission. Any information would be most helpful.
Forums
Re: Looking for anyone with deletion 13q with p53 deletion..
Dear Husker Fan!
My father also was diagnosed in October 2010 .
His FISH test showed also a del 17p13 and the del13 q was also prominent.
There is one study named VISTA study who showed same OS for del17 patients as für the other patients, but most of the studies showed worse outcomes for this specia kind of aberration.
My father is 64 years old and went through PAD induction and auto-transplant.
Maybe you didn´t get any answers yet, because the del17 is very uncommon in myeloma patients (just about 5% of all the patients)
I know that having t4;14 in combination with del17p13 may predict the worst outcome.
In the last view month I´ve talked to so much doctors and most of them told me, that the situation with del17p13 patients is very difficult to manage because scientists do not concentrate as much on this uncommon gene defect.
My father didn´t reach a complete remission, he only reached a very good partial remission.
On how many % of the cells does your husband have the del17p13 ?
Do you think about an allogenic transplant?
Where are you from?
greetings
Katrin
My father also was diagnosed in October 2010 .
His FISH test showed also a del 17p13 and the del13 q was also prominent.
There is one study named VISTA study who showed same OS for del17 patients as für the other patients, but most of the studies showed worse outcomes for this specia kind of aberration.
My father is 64 years old and went through PAD induction and auto-transplant.
Maybe you didn´t get any answers yet, because the del17 is very uncommon in myeloma patients (just about 5% of all the patients)
I know that having t4;14 in combination with del17p13 may predict the worst outcome.
In the last view month I´ve talked to so much doctors and most of them told me, that the situation with del17p13 patients is very difficult to manage because scientists do not concentrate as much on this uncommon gene defect.
My father didn´t reach a complete remission, he only reached a very good partial remission.
On how many % of the cells does your husband have the del17p13 ?
Do you think about an allogenic transplant?
Where are you from?
greetings
Katrin
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Katrin
Re: Looking for anyone with deletion 13q with p53 deletion..
My husband was diagnosed in April of this year with the 17p53 and 13 deletion. He is 54. Next week he will start his 4th round of Rev., Dex., and Velcade. He will then take 4 weeks off, and will have a stem cell transplant (own cells) at Mayo in September. His side effects of the meds have not been too bad. The doctor's did not give us any guesses on how long he could stay in remission, and we did not ask. My husband does work with a lady who also has the 17p53 deletion. She had her transplant 7 years ago and is doing very well.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Looking for anyone with deletion 13q with p53 deletion..
Katrin & rumnting....thank you for your replies.
My husband is on a clinical study. He went through 6 cycles of RVD, having stem cell collection after 4 cycles. He collected in just one day. He is currently on maintenance with Rev. and Dex. The oncologist tells us that my husband is "doing as well as can be expected". What more could we ask? Actually, A LOT, but that is just wishful thinking.
At diagnosis, his IgG was over 10,000 and kappa light chain was over 2950.
The following is taken from the oncologist's notes from July 2010. "He had trisomy 3, 9, 11, and 15, by FISH probe testing. A plasma cell labeling index showed 0.4% which falls into the intermediate proliferative rate (standard risk). "Unilateral biopsy from the right side showed 37% plasma cells on aspirate; focal areas of the marrow core showed sheaths of plasma cells."
Katrin, I'm not sure if that answers your question regarding the % of cells having the del17p13. You also asked our location. We live in Nebraska, USA.
Thanks, again.
My husband is on a clinical study. He went through 6 cycles of RVD, having stem cell collection after 4 cycles. He collected in just one day. He is currently on maintenance with Rev. and Dex. The oncologist tells us that my husband is "doing as well as can be expected". What more could we ask? Actually, A LOT, but that is just wishful thinking.
At diagnosis, his IgG was over 10,000 and kappa light chain was over 2950.
The following is taken from the oncologist's notes from July 2010. "He had trisomy 3, 9, 11, and 15, by FISH probe testing. A plasma cell labeling index showed 0.4% which falls into the intermediate proliferative rate (standard risk). "Unilateral biopsy from the right side showed 37% plasma cells on aspirate; focal areas of the marrow core showed sheaths of plasma cells."
Katrin, I'm not sure if that answers your question regarding the % of cells having the del17p13. You also asked our location. We live in Nebraska, USA.
Thanks, again.
Re: Looking for anyone with deletion 13q with p53 deletion..
I may be wrong, and I hope one of the Beacon docs step in on this one, but I think chromosomal abnormalities are on ALL of the patient's myeloma cells. The defective genes are only on their cancer cell, not the other healthy cells in their body.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Looking for anyone with deletion 13q with p53 deletion..
Hallo!
I think that´s right-all in all chromosomal abnomalities are i the reason why people get cancer-
but there are different abnormalities- Deletations-Abberations-Amplifications-.....etc
some of them are more dangerous than others.......
?!!?!??!?!?!?
but why is it possible, that some people live as long as rumting said, even if they have del17?
I think that´s right-all in all chromosomal abnomalities are i the reason why people get cancer-
but there are different abnormalities- Deletations-Abberations-Amplifications-.....etc
some of them are more dangerous than others.......
?!!?!??!?!?!?
but why is it possible, that some people live as long as rumting said, even if they have del17?
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katrin
Re: Looking for anyone with deletion 13q with p53 deletion..
My mother has deletion of 13q and P53. She was diagnosed 3 years ago at 67. She had a bone marrow transplant, using her own bone marrow about 2 years ago and did not go into a full remission, but she did feel better and was able to control her multiple myeloma for several months on just Velcade. We were able to go on several family trips. She has since been on many different chemos and has had trouble tolerating them.
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windfair
Re: Looking for anyone with deletion 13q with p53 deletion..
Hello windfair!
my father also didn´t reach a CR, but at least a VGPR
how many month did your mum get in a remission?
how many chemos did he have yet?
greetings from germany,
Katrin
my father also didn´t reach a CR, but at least a VGPR
how many month did your mum get in a remission?
how many chemos did he have yet?
greetings from germany,
Katrin
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Katrin
Re: Looking for anyone with deletion 13q with p53 deletion..
She was off chemo from the bone marrow transplant in July (two years ago) until right after Christmas (2 years ago), so not very long at all. SInce then, she has done new chemos (Velcade, Revlimide) and some of the old (Thalidimide, Decadron, Meliphan) (Sorry about the spelling...) and she is still getting worse. She went back into the hospital tonight. It has been very difficult for her. I hope things are going better for you in Germany.
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windfair
Re: Looking for anyone with deletion 13q with p53 deletion..
hallo windfair,
I´m very sorry for you and your family, that your mum is not doing very well at the moment?
Is there already another therapy planned for her at the moment?
What do the doctors say?
Next week,the doctors of our hospital are going to control the blood markers of my father.
I hope everything is still fine, but I´m really afraid of the future.
It´s not easy to cope with the disease-but I think it is a little bit more harder to know, that he is a "high risk patient."
Do you now any especial detail about the del17?
What do your docs say about it?
It´s so rare to find any informations about it.
All the best for your mum,
Katrin
I´m very sorry for you and your family, that your mum is not doing very well at the moment?
Is there already another therapy planned for her at the moment?
What do the doctors say?
Next week,the doctors of our hospital are going to control the blood markers of my father.
I hope everything is still fine, but I´m really afraid of the future.
It´s not easy to cope with the disease-but I think it is a little bit more harder to know, that he is a "high risk patient."
Do you now any especial detail about the del17?
What do your docs say about it?
It´s so rare to find any informations about it.
All the best for your mum,
Katrin
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Katrin
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