Dear All,
As already described, my mom was diagnosed with IgG multiple myeloma in May last year. After cyclophosphamide, Velcade, and dexamethasone (CyBorD) induction therapy, in October she had an autologous stem cell transplant (SCT) and achieved stringent complete response (sCR).
Currently she is having 4 more cycles of Velcade + dex due to deletion of chromosome 13. No maintenance therapy is planned.
First, I would like to ask you regarding the deletion 13 (by FISH). I found also written in her labs "translocation IGH and IGH/FGFR3" and deletion of chromosome 13q34. I understand that this translocation is t4;14?
Second, oncologist that she met today told her that due to deletion 13 she is high risk multiple myeloma and no matter to good overall health, ISS 1, and good response, she will not live more than 7 years. He also told her some other negative factors (immunology drugs wont help her etc), and that she should find a donor as her remission will not last long.
I tried to find some studies on deletion 13 but everything seems to be old.. Maybe someone can help me find something more recent? Also, please share your experience with deletion 13.
Many thanks
Forums
5 posts
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Lavanda - Name: Lavanda
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 2015
- Age at diagnosis: 53
Re: Deletion 13 multiple myeloma
Hello Lavendra:
Just wanted to comment back to you on a couple of the things that you relayed. First off, I do not have a great deal of knowledge on del 13. And it is true that there is more concern regarding some of the historically "bad" cytogenetic abnormalities (CA's). However, I hope it was some type of miscommunication regarding the 7 year comment. If you have one or more CA, it generally is more important to reach the sCR, which your mother has. Many doctors also believe that they want to extend the period before first relapse, and use maintenance, also. This leads me to ask you to ask yourself, are you sure that you are using a myeloma specialist, that does myeloma full time or near full time?
The thing about some of the newer treatments, newer drugs and newer approaches, is that they have not been out there long enough to have solid overall survival data. We do know that they are achieving deeper responses and better progression free survival (PFS). Specifically, early reports are that Kyprolis, and the monoclonal antibodies do seem to overcome some of the historically bad prognostic factors of the CA's. It is important to understand if you have one or more bad CA. To me however, it is suggestive that somewhat more aggressive an approach might be warranted. With the treatments and the ones in the pipeline, I would think that it would be very hard to put a "hard cap" on the overall survival prognosis. Good luck to you.
Just wanted to comment back to you on a couple of the things that you relayed. First off, I do not have a great deal of knowledge on del 13. And it is true that there is more concern regarding some of the historically "bad" cytogenetic abnormalities (CA's). However, I hope it was some type of miscommunication regarding the 7 year comment. If you have one or more CA, it generally is more important to reach the sCR, which your mother has. Many doctors also believe that they want to extend the period before first relapse, and use maintenance, also. This leads me to ask you to ask yourself, are you sure that you are using a myeloma specialist, that does myeloma full time or near full time?
The thing about some of the newer treatments, newer drugs and newer approaches, is that they have not been out there long enough to have solid overall survival data. We do know that they are achieving deeper responses and better progression free survival (PFS). Specifically, early reports are that Kyprolis, and the monoclonal antibodies do seem to overcome some of the historically bad prognostic factors of the CA's. It is important to understand if you have one or more bad CA. To me however, it is suggestive that somewhat more aggressive an approach might be warranted. With the treatments and the ones in the pipeline, I would think that it would be very hard to put a "hard cap" on the overall survival prognosis. Good luck to you.
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JPC - Name: JPC
Re: Deletion 13 multiple myeloma
Hi Lavendra,
You may want to read through the article referenced in this thread:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
"....Secondary cytogenetic abnormalities
Numerous secondary cytogenetic abnormalities have been described in multiple myeloma. One or more of these can occur in any of the primary cytogenetic subtypes of multiple myeloma. One of the earliest described secondary cytogenetic abnormality is monosomy 13 or del(13q), initially detected in metaphase cytogenetic studies. Early studies showed that monosomy 13/del(13q) was a significant adverse prognostic marker in multiple myeloma, but later studies showed the prognostic effect was primarily seen when the abnormality was detected by conventional karyotypic (rather than FISH) studies, where the abnormality probably functions as a surrogate marker for hypodiploidy, IgH translocations or proliferation rather than being a true driver of risk. Monosomy 13/del(13q) is an early event in multiple myeloma pathogenesis and is seen in up to 50% of patients with MGUS. The frequent occurrence of monosomy 13/del(13q) in MGUS and SMM indicates the need for further study of this abnormality regardless of the lack of a true prognostic effect."
Del 13q isn't considered to be a high risk mutation by the Mayo based on their latest mSMART criteria.
https://www.msmart.org/about.html
You may want to read through the article referenced in this thread:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
"....Secondary cytogenetic abnormalities
Numerous secondary cytogenetic abnormalities have been described in multiple myeloma. One or more of these can occur in any of the primary cytogenetic subtypes of multiple myeloma. One of the earliest described secondary cytogenetic abnormality is monosomy 13 or del(13q), initially detected in metaphase cytogenetic studies. Early studies showed that monosomy 13/del(13q) was a significant adverse prognostic marker in multiple myeloma, but later studies showed the prognostic effect was primarily seen when the abnormality was detected by conventional karyotypic (rather than FISH) studies, where the abnormality probably functions as a surrogate marker for hypodiploidy, IgH translocations or proliferation rather than being a true driver of risk. Monosomy 13/del(13q) is an early event in multiple myeloma pathogenesis and is seen in up to 50% of patients with MGUS. The frequent occurrence of monosomy 13/del(13q) in MGUS and SMM indicates the need for further study of this abnormality regardless of the lack of a true prognostic effect."
Del 13q isn't considered to be a high risk mutation by the Mayo based on their latest mSMART criteria.
https://www.msmart.org/about.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Deletion 13 multiple myeloma
I was also diagnosed with del(17p) risk factor and it plays a part in all the decisions we make regarding treatment. It is certainly a factor that makes my doctor and family more aware of the risks of multiple myeloma and the increased chances I face of quicker relapse, resistance to treatment, and ultimately maybe shorter overall survival.
That said, nothing is certain, and that is something you and your mom must remember. It is better to focus on the treatment she receives today and the response. It is right to know of this higher risk and take it into account when she is deciding how to proceed, but she should not be marking the calendar for 7 years out and figure that is the expiration date no matter what.
I would wholeheartedly second the recommendation that she see a myeloma specialist if she isn't already. JPC mentions the success being seen with treatments with Kyprolis (carfilzomib) as an example of novel agents being used that probably aren't calculated in some of the older data. I'm currently being treated with Kyprolis and I'm having a great response. Some of the literature on this drug specifically mentions the possible impact it may have on people carrying the del(17p) risk. I don't mention this as a miracle drug or suggest it is right for your mom, but only to point out how quickly the science is moving and how even those of us with "high risk" factors have reason to be hopeful.
That said, nothing is certain, and that is something you and your mom must remember. It is better to focus on the treatment she receives today and the response. It is right to know of this higher risk and take it into account when she is deciding how to proceed, but she should not be marking the calendar for 7 years out and figure that is the expiration date no matter what.
I would wholeheartedly second the recommendation that she see a myeloma specialist if she isn't already. JPC mentions the success being seen with treatments with Kyprolis (carfilzomib) as an example of novel agents being used that probably aren't calculated in some of the older data. I'm currently being treated with Kyprolis and I'm having a great response. Some of the literature on this drug specifically mentions the possible impact it may have on people carrying the del(17p) risk. I don't mention this as a miracle drug or suggest it is right for your mom, but only to point out how quickly the science is moving and how even those of us with "high risk" factors have reason to be hopeful.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Deletion 13 multiple myeloma
Thank you all for your comments, they help a lot.
We were actually starting to feel better with the improvement she had, however I guess with this disease there are always some bad days.
I truly do believe that new treatments will help my mom, and I refuse to accept anything else. This is the way I plan to go through this.
Regarding the doctor, I'm sure he just wanted to help my mom not to get over-relaxed with the disease. However, in my opinion, people who are doing well on treatment should not be "pushed down" with negative aspects of disease from time to time. Luckily, he is not her primary specialist, but a doctor that administrates this "prolonged therapy".
We were actually starting to feel better with the improvement she had, however I guess with this disease there are always some bad days.
I truly do believe that new treatments will help my mom, and I refuse to accept anything else. This is the way I plan to go through this.
Regarding the doctor, I'm sure he just wanted to help my mom not to get over-relaxed with the disease. However, in my opinion, people who are doing well on treatment should not be "pushed down" with negative aspects of disease from time to time. Luckily, he is not her primary specialist, but a doctor that administrates this "prolonged therapy".
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Lavanda - Name: Lavanda
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 2015
- Age at diagnosis: 53
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