Dear Behavior Queen,
My wife has 17p deletion as well as polyploidy (multiple copies of genes). She's gone through 4 cycles of cyclophosphamide, Velcade, and dexamethasone (CyBorD), monthly infusions of pamidronate (Aredia), and is scheduled for ASCT next week. Her numbers improved very well with the above. Due to her cytogenetics, she will have a tandem (2nd) transplant 3-6 months later.
Here's hoping your husband does very well!
Forums
-
SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Deletion 17p and stem cell transplants
Greetings
My husband had the ASCT on September 14, and we are participating in a trial in which MILS (marrow infiltrating lymphocytes) activated to recognize hundreds of proteins on his myeloma cells, were infused on days three and four. Even though we had hoped he could do this as an outpatient, on day 8 he was admitted to the transplant in patient unit and spent 8 days there due to fevers. The fevers were not due to sepsis, but were thought to be cytokine fevers.
After discharge, he occasionally had some elevated temperatures, shaking and then hives. The hives and fevers were thought to be a MILS response and considered to be a good side effect of the novel agent.
As of two weeks ago, the lab results indicate not enough plasma cells to run a FISH test. He had another bone marrow biopsy yesterday, they took blood for the myeloma labs, and we are hopeful that he will be in remission. Our oncologist at Hopkins, Ivan Borrello, indicated that patients who had a strong inflammatory response to the MILS tend to have longer remissions.
We an only hope that is the case. He is feeling pretty good now that we are almost at Day 60. There are no plans for a tandem transplant.
I hope things go well for your wife as well. Due to the MILS, my husband's numbers look good, and in about 4 months or so, he should be getting his childhood vacicinations again.
BQ
My husband had the ASCT on September 14, and we are participating in a trial in which MILS (marrow infiltrating lymphocytes) activated to recognize hundreds of proteins on his myeloma cells, were infused on days three and four. Even though we had hoped he could do this as an outpatient, on day 8 he was admitted to the transplant in patient unit and spent 8 days there due to fevers. The fevers were not due to sepsis, but were thought to be cytokine fevers.
After discharge, he occasionally had some elevated temperatures, shaking and then hives. The hives and fevers were thought to be a MILS response and considered to be a good side effect of the novel agent.
As of two weeks ago, the lab results indicate not enough plasma cells to run a FISH test. He had another bone marrow biopsy yesterday, they took blood for the myeloma labs, and we are hopeful that he will be in remission. Our oncologist at Hopkins, Ivan Borrello, indicated that patients who had a strong inflammatory response to the MILS tend to have longer remissions.
We an only hope that is the case. He is feeling pretty good now that we are almost at Day 60. There are no plans for a tandem transplant.
I hope things go well for your wife as well. Due to the MILS, my husband's numbers look good, and in about 4 months or so, he should be getting his childhood vacicinations again.
BQ
Re: Deletion 17p and stem cell transplants
BehaviorQueen,
I am also a patient at Hopkins, but I decided not to participate in the MILs trial. Nevertheless, I am very interested in what happens in the trial, and so I hope you will continue to write and share details about your husband's progress. I wish him the best.
I am also a patient at Hopkins, but I decided not to participate in the MILs trial. Nevertheless, I am very interested in what happens in the trial, and so I hope you will continue to write and share details about your husband's progress. I wish him the best.
Re: Deletion 17p and stem cell transplants
One thing ... and it came as a bit of a surprise to me last month.
I too have the del(17p) deletion, and had an autologous transplant two years ago. I'm in what my doc calls 'complete remission' still (no M spike, all the labs look great). My doc was really excited about it (think we had a short thread about it in here, come to think of it):
"Second autologous stem cell transplant at relapse" (started Oct 2, 2015)
I don't know if this will help you any, but from this I have figured that when a transplant works, it works very well indeed.
Here's hoping for the best for all of us!
I too have the del(17p) deletion, and had an autologous transplant two years ago. I'm in what my doc calls 'complete remission' still (no M spike, all the labs look great). My doc was really excited about it (think we had a short thread about it in here, come to think of it):
"Second autologous stem cell transplant at relapse" (started Oct 2, 2015)
I don't know if this will help you any, but from this I have figured that when a transplant works, it works very well indeed.
Here's hoping for the best for all of us!
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Deletion 17p and stem cell transplants
Dianaiad,
That's wonderful news, as deletion 17p seems to be the worst of the cytogenetics.
Hoping for the best for all!
That's wonderful news, as deletion 17p seems to be the worst of the cytogenetics.
Hoping for the best for all!
-
SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Deletion 17p and stem cell transplants
My husband was recently diagnosed SMM and has a gain of TP53 (I guess this means mutated TP53 genes) which usually is exclusively involved with DEL 17P.
In doing research I found the following and was wondering if anyone has a comment or opinion on the following research that suggests that patients with DEL17P fare better when they also have trisomy genes:
https://myelomabeacon.org/news/2012/02/15/trisomy-high-risk-multiple-myeloma-survival/
The researchers then divided the high-risk patients into two groups based on whether or not they had a trisomy. They found that high-risk patients with a trisomy had significantly longer median overall survival times (not yet reached) compared to high-risk patients without a trisomy (three years).
Moreover, they found that none of the trisomies were associated with better outcomes than the others.
The researchers then created a new high-risk patient group that only included high-risk patients without a trisomy. High-risk patients with a trisomy were reclassified as standard-risk patients, along with the original standard-risk patients.
They found that the new high-risk group had a median overall survival of three years. The median overall survival of the new standard-risk group was not reached at the time of follow-up.
According to the researchers, it is unclear why trisomies improve the survival outcomes of high-risk myeloma patients, or why they appear frequently in myeloma cells.
They speculated that additional copies of odd-numbered chromosomes may increase the number of genes involved in the suppression of tumors or in the sensitivity of myeloma cells to anti-myeloma drugs.
In doing research I found the following and was wondering if anyone has a comment or opinion on the following research that suggests that patients with DEL17P fare better when they also have trisomy genes:
https://myelomabeacon.org/news/2012/02/15/trisomy-high-risk-multiple-myeloma-survival/
The researchers then divided the high-risk patients into two groups based on whether or not they had a trisomy. They found that high-risk patients with a trisomy had significantly longer median overall survival times (not yet reached) compared to high-risk patients without a trisomy (three years).
Moreover, they found that none of the trisomies were associated with better outcomes than the others.
The researchers then created a new high-risk patient group that only included high-risk patients without a trisomy. High-risk patients with a trisomy were reclassified as standard-risk patients, along with the original standard-risk patients.
They found that the new high-risk group had a median overall survival of three years. The median overall survival of the new standard-risk group was not reached at the time of follow-up.
According to the researchers, it is unclear why trisomies improve the survival outcomes of high-risk myeloma patients, or why they appear frequently in myeloma cells.
They speculated that additional copies of odd-numbered chromosomes may increase the number of genes involved in the suppression of tumors or in the sensitivity of myeloma cells to anti-myeloma drugs.
-
brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Deletion 17p and stem cell transplants
Hello Bandyjoco
I want to point you to a paper which perhaps is relevant (to me too):
Coexistent hyperdiploidy does not abrogate poor prognosis in myeloma with adverse cytogenetics and may precede IGH translocations
Charlotte Pawlyn1, Lorenzo Melchor1, Alex Murison1, Christopher P. Wardell1, Annamaria Brioli1,2, Eileen M. Boyle1,3, Martin F. Kaiser1, Brian A. Walker1, Dil B. Begum1, Nasrin B. Dahir1, Paula Proszek1, Walter M. Gregory4, Mark T. Drayson5, Graham H. Jackson6, Fiona M. Ross7, Faith E. Davies1, and Gareth J. Morgan
January 29, 2015; Blood: 125 (5)
This came from out from Dr Gareth Morgan's Group in the UK. As Beacon readers will know he has written for the Beacon on Clonal heterogeneity of clones and subclones in myeloma since he took up heading myeloma treatment and science at UAMS in USA.
Myeloma is very complex.
Edna
I want to point you to a paper which perhaps is relevant (to me too):
Coexistent hyperdiploidy does not abrogate poor prognosis in myeloma with adverse cytogenetics and may precede IGH translocations
Charlotte Pawlyn1, Lorenzo Melchor1, Alex Murison1, Christopher P. Wardell1, Annamaria Brioli1,2, Eileen M. Boyle1,3, Martin F. Kaiser1, Brian A. Walker1, Dil B. Begum1, Nasrin B. Dahir1, Paula Proszek1, Walter M. Gregory4, Mark T. Drayson5, Graham H. Jackson6, Fiona M. Ross7, Faith E. Davies1, and Gareth J. Morgan
January 29, 2015; Blood: 125 (5)
This came from out from Dr Gareth Morgan's Group in the UK. As Beacon readers will know he has written for the Beacon on Clonal heterogeneity of clones and subclones in myeloma since he took up heading myeloma treatment and science at UAMS in USA.
Myeloma is very complex.
Edna
Re: Deletion 17p and stem cell transplants
Brandyjoco,
Again, I'm not a doc. But let me re-state what I said earlier:
"....You are right that that the TP53 gene that is found on the short arm of chromosome 17 (TP53/17p) is associated with high risk multiple myeloma. But it is a 17p DELETION and the associated LOSS of the TP53 gene, not a 17p GAIN that is a high risk mutation. So, don't fret about this."
You shouldn't confuse a gain with a deletion. They are opposites of one another and have different implications. So, I wouldn't try to extend your situation with a TP53 gain to studies associated with del 17p.
As always, you should confirm all this with your doc.
Again, I'm not a doc. But let me re-state what I said earlier:
"....You are right that that the TP53 gene that is found on the short arm of chromosome 17 (TP53/17p) is associated with high risk multiple myeloma. But it is a 17p DELETION and the associated LOSS of the TP53 gene, not a 17p GAIN that is a high risk mutation. So, don't fret about this."
You shouldn't confuse a gain with a deletion. They are opposites of one another and have different implications. So, I wouldn't try to extend your situation with a TP53 gain to studies associated with del 17p.
As always, you should confirm all this with your doc.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Deletion 17p and stem cell transplants
Multibilly and Edna,
Thank you for your responses and the information that you have posted. This is all so new to me and I am quite concerned for my husbands health. Yes - it is a gain of TP53 (not a delete and that is quite odd). I didn't know if that means it is a TP53 gene 'mutation' (3 copies) which seems to have the same adverse prognosis as a DEL17P. After he has the PET CT scan tomorrow and results next Friday we are hoping to pursue a second opinion with Dr Berenson in N. Hollywood.
You are quite kind in following through and sharing the research that you have found. I am very grateful that we can come to the Myeloma Beacon forum and learn about this quite complicated disease.
Thank you....
Thank you for your responses and the information that you have posted. This is all so new to me and I am quite concerned for my husbands health. Yes - it is a gain of TP53 (not a delete and that is quite odd). I didn't know if that means it is a TP53 gene 'mutation' (3 copies) which seems to have the same adverse prognosis as a DEL17P. After he has the PET CT scan tomorrow and results next Friday we are hoping to pursue a second opinion with Dr Berenson in N. Hollywood.
You are quite kind in following through and sharing the research that you have found. I am very grateful that we can come to the Myeloma Beacon forum and learn about this quite complicated disease.
Thank you....
-
brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Deletion 17p and stem cell transplants
Let us know what Dr. B says. I'm always curious what his opinion is on different situations.
I just ordered his wife's new book "I Have What?" and I'm looking forward to reading it.
I just ordered his wife's new book "I Have What?" and I'm looking forward to reading it.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
22 posts
• Page 2 of 3 • 1, 2, 3
Return to Treatments & Side Effects