In a journal article published last year, a group of researchers wrote:
“Cytogenetic abnormalities have been recognized as the most important prognostic factors and as an effective approach for determining the stage of disease and providing guidance for therapeutic strategies in patients with multiple myeloma. However, current factors based on only del(17p), t(4;14) and t(14;16) cannot completely explain the heterogeneity in this disease. Recently, extensive use of high-throughput genetic analysis tools such as global gene expression profiling and single-nucleotide polymorphism-based mapping array combined with bioinformatics and biostatistics has uncovered a plethora of prognosis-related genetic abnormalities in multiple myeloma. Of these, chromosome 1p deletion (18-38% in multiple myeloma) is one of the most frequent genetic abnormalities and has attracted increasing clinical interest.”
“More importantly, patients with del(1P32.3) had the highest risk of death compared with patients with other risk factors. This increased mortality risk was even higher than that of patients with del (17P), and amp (1Q21). Thus our data supported 1P32.3 as the more important prognostic region ...”
Source: Li, F., et al, "Identification of characteristic and prognostic values of chromosome 1p abnormality by multi-gene fluorescence in situ hybridization in multiple myeloma," Leukemia, September 2015 (link to abstract)
My wife's FISH profile includes deletion 1p32.3 and I was wondering what sort of additional information or experiences people can point me to help us understand what to expect with that sort of abnormality. How will her myeloma with deletion 1p32 respond to treatment? What sort of treatments may work best for it, and which may not work so well?
My wife was diagnosed in March of this year and underwent initial treatment with Revlimid, Velcade, and dexamethasone (RVD) for 5 cycles. She will have an autologous stem cell transplant (ASCT) in September, 2016. Right now she has achieved a complete response (CR), but the deletion 1p32.3 chromosomal abnormality is still being detected.
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Deletion 1p32 (or 1p32.3) chromosomal abnormality
Hello Wayne:
I am not specifically knowledgeable regarding the deletion 1p or 1q abnormality, but my wife has t(4,14), and here are some general comments on the bad cytogenetic abnormalities.
I have heard that there has been good success using heavier maintenance after a stem cell transplant, specifically Revlimid, Velcade, and dexamethasone (RVD) maintenance, but at doses lower than usually used when the regimen is given as induction therapy.
Second, Kyprolis is generally good for the chromosomal abnormalities. My wife had Kyprolis, Revlimid, and dexamethasone consolidation (after RVD induction and a transplant), and got to stringent complete response (sCR), only in the consolidation phase.
Also data is early, but many myeloma specialists speculate that the monoclonal antibodies, particularly Darzalex (daratumumab), are good for the chromosomal abnormalities.
Lastly, many feel it is important to try and reach minimal residual disease (MRD) negative status if you have an adverse chromosomal abnormality, much more so than if you are at standard risk, which would suggest a consolidation phase, if you did not were not MRD negative after a stem cell transplant.
Good luck to you.
I am not specifically knowledgeable regarding the deletion 1p or 1q abnormality, but my wife has t(4,14), and here are some general comments on the bad cytogenetic abnormalities.
I have heard that there has been good success using heavier maintenance after a stem cell transplant, specifically Revlimid, Velcade, and dexamethasone (RVD) maintenance, but at doses lower than usually used when the regimen is given as induction therapy.
Second, Kyprolis is generally good for the chromosomal abnormalities. My wife had Kyprolis, Revlimid, and dexamethasone consolidation (after RVD induction and a transplant), and got to stringent complete response (sCR), only in the consolidation phase.
Also data is early, but many myeloma specialists speculate that the monoclonal antibodies, particularly Darzalex (daratumumab), are good for the chromosomal abnormalities.
Lastly, many feel it is important to try and reach minimal residual disease (MRD) negative status if you have an adverse chromosomal abnormality, much more so than if you are at standard risk, which would suggest a consolidation phase, if you did not were not MRD negative after a stem cell transplant.
Good luck to you.
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JPC - Name: JPC
Re: Deletion 1p32 (or 1p32.3) chromosomal abnormality
Hi there,
I have recently been diagnosed with Stage 2 multiple myeloma in October 2017, high IgA (43.9 g/L, or 4390 mg/dL), My plasma burden was 80% on diagnosis and I have the rare 1p32 deletion along with 14q32. I believe I face the same questions you asked regarding your wife over a year ago.
I have read as much as I can find on this, but information on this and how people really fared is sparse, I guess as it does not impact as many multiple myeloma sufferers as compared to t(4,14) or del(17p).
I believe that having this deleted element means that it is unlikely that I will go into a long remission (or even remission at all?) period following stem cell treatment?
In any case, I guess I just have the same questions as you do about what to expect and what sort of treatments might work well, and not so well, with deletion 1p32.
Any comments / advice welcome.
Thanks.
I have recently been diagnosed with Stage 2 multiple myeloma in October 2017, high IgA (43.9 g/L, or 4390 mg/dL), My plasma burden was 80% on diagnosis and I have the rare 1p32 deletion along with 14q32. I believe I face the same questions you asked regarding your wife over a year ago.
I have read as much as I can find on this, but information on this and how people really fared is sparse, I guess as it does not impact as many multiple myeloma sufferers as compared to t(4,14) or del(17p).
I believe that having this deleted element means that it is unlikely that I will go into a long remission (or even remission at all?) period following stem cell treatment?
In any case, I guess I just have the same questions as you do about what to expect and what sort of treatments might work well, and not so well, with deletion 1p32.
Any comments / advice welcome.
Thanks.
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KiwiDownUnder - Name: KiwiDownUnder
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 53
Re: Deletion 1p32 (or 1p32.3) chromosomal abnormality
Hi KiwiDownUnder,
My wife was diagnosed in March 2016 with 60% plasma cells, del(13q), t(4;14), gain 1q21, and del 1p32.3. From everything I've read, not a good cytogenetic profile. As you can tell from the response to my post, also a rare profile.
There's good news so far regarding my wife's response to drug therapy and a stem cell transplant. She started induction treatment with Revlimid, Velcade, and dexamethasone (RVD), and had a complete response after four cycles. One problem during her induction treatment was itchy rash related to Revlimid (25 mg). The myeloma specialist said he had never seen a rash that bad. He reduced the Revlimid dose in half. The rash subsided, although never went completely away.
She underwent a stem cell transplant in September 2016 with a stringent complete response (sCR) at her 100-day biopsy. Her myeloma specialist recommended low-dose triplet maintenance (RVD again) because of her high risk profile. She began with Revlimid 10 mg, but was unable to make it through one cycle due to itchy rash (as above). She tried everything recommended by her doctor and in the Myeloma Beacon for rash, with no success. She then tried Ninlaro, again itchy rash and had to discontinue Ninlaro. She is now on Pomalyst (pomalidomide) 1 mg for maintenance with milder itchy rash. She is using everything for the rash to get thru the cycles. Now on cycle two. The myeloma specialist has stated he doesn't know what's causing the itchy rash. She had a biopsy with negative results.
The good news is her multiple myeloma is and has been in sCR for 14 months. It did take her one year to completely recover from the stem cell transplant. We believe that is because of her age, 67, at transplant. She is now walking 5 miles per day and enjoying life when she can tolerate the itch / rash.
Hope you do well with your treatment plan. Best wishes for you and yours during the Holiday Season.
Regards,
wemery
My wife was diagnosed in March 2016 with 60% plasma cells, del(13q), t(4;14), gain 1q21, and del 1p32.3. From everything I've read, not a good cytogenetic profile. As you can tell from the response to my post, also a rare profile.
There's good news so far regarding my wife's response to drug therapy and a stem cell transplant. She started induction treatment with Revlimid, Velcade, and dexamethasone (RVD), and had a complete response after four cycles. One problem during her induction treatment was itchy rash related to Revlimid (25 mg). The myeloma specialist said he had never seen a rash that bad. He reduced the Revlimid dose in half. The rash subsided, although never went completely away.
She underwent a stem cell transplant in September 2016 with a stringent complete response (sCR) at her 100-day biopsy. Her myeloma specialist recommended low-dose triplet maintenance (RVD again) because of her high risk profile. She began with Revlimid 10 mg, but was unable to make it through one cycle due to itchy rash (as above). She tried everything recommended by her doctor and in the Myeloma Beacon for rash, with no success. She then tried Ninlaro, again itchy rash and had to discontinue Ninlaro. She is now on Pomalyst (pomalidomide) 1 mg for maintenance with milder itchy rash. She is using everything for the rash to get thru the cycles. Now on cycle two. The myeloma specialist has stated he doesn't know what's causing the itchy rash. She had a biopsy with negative results.
The good news is her multiple myeloma is and has been in sCR for 14 months. It did take her one year to completely recover from the stem cell transplant. We believe that is because of her age, 67, at transplant. She is now walking 5 miles per day and enjoying life when she can tolerate the itch / rash.
Hope you do well with your treatment plan. Best wishes for you and yours during the Holiday Season.
Regards,
wemery
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Deletion 1p32 (or 1p32.3) chromosomal abnormality
Hello,
This is of interest to me, although I am not as knowledgeable as you both seem to be. I know i have deletion of tp53, and I believe 13 and 14. After completing Revlimid, Velcade, and dexamethasone with a complete response, I went on Revlimid 25 mg 3 weeks on 1 off, followed by an autologous stem cell transplant in August 2017 stringent response. I am still recovering, but overall all is well. I am scheduled for my second (tandem) transplant December 26. According to my oncologist at my transplant center, the tandem transplant is the best treatment for high risk of relapse to provide long- term remission. I am told following the second transplant I will be on Revlimid for maintenance.
Thank you for sharing your knowledge. God bless and happy holidays.
This is of interest to me, although I am not as knowledgeable as you both seem to be. I know i have deletion of tp53, and I believe 13 and 14. After completing Revlimid, Velcade, and dexamethasone with a complete response, I went on Revlimid 25 mg 3 weeks on 1 off, followed by an autologous stem cell transplant in August 2017 stringent response. I am still recovering, but overall all is well. I am scheduled for my second (tandem) transplant December 26. According to my oncologist at my transplant center, the tandem transplant is the best treatment for high risk of relapse to provide long- term remission. I am told following the second transplant I will be on Revlimid for maintenance.
Thank you for sharing your knowledge. God bless and happy holidays.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Deletion 1p32 (or 1p32.3) chromosomal abnormality
Hi Wemery,
It is really pleasing to know that someone else with this deletion has managed to get through some remission stage. I know that we are all different, but it is really pleasing to hear this from you. I will keep an eye out for the issues regarding Revlimid as I'm sure that I will need it as a maintenance product in the future after my stem cell transplant, which is scheduled for around April 2018.
Hi also to Hopeful1,
I understand that tp53 maybe directly associated to that of del(17p) in Myeloma and I found this recent article, listed below, which you might have not seen which therefore could be relevant to your situation. I know some of it might not make great reading but from my perspective I'd rather be prepared regarding worst case scenario.
I am still trying to get around the logic behind the 'hazard ratio' values that are given to various chromosomal anomalies and do not understand why each one is assigned its particular values. The French report on del(1p32) that was published a couple of years ago really appears to lead the way in this regard and I might need to seek further answers there, so watch this space...
Best wishes to you both and trust 2018 is a good year for you and your loved ones undergoing treatment.
Reference:
Chin, M, et al, "Prevalence and timing of TP53 mutations in del(17p) myeloma and effect on survival," Blood Cancer Journal, Sep 15, 2017 (full text of article)
It is really pleasing to know that someone else with this deletion has managed to get through some remission stage. I know that we are all different, but it is really pleasing to hear this from you. I will keep an eye out for the issues regarding Revlimid as I'm sure that I will need it as a maintenance product in the future after my stem cell transplant, which is scheduled for around April 2018.
Hi also to Hopeful1,
I understand that tp53 maybe directly associated to that of del(17p) in Myeloma and I found this recent article, listed below, which you might have not seen which therefore could be relevant to your situation. I know some of it might not make great reading but from my perspective I'd rather be prepared regarding worst case scenario.
I am still trying to get around the logic behind the 'hazard ratio' values that are given to various chromosomal anomalies and do not understand why each one is assigned its particular values. The French report on del(1p32) that was published a couple of years ago really appears to lead the way in this regard and I might need to seek further answers there, so watch this space...
Best wishes to you both and trust 2018 is a good year for you and your loved ones undergoing treatment.
Reference:
Chin, M, et al, "Prevalence and timing of TP53 mutations in del(17p) myeloma and effect on survival," Blood Cancer Journal, Sep 15, 2017 (full text of article)
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KiwiDownUnder - Name: KiwiDownUnder
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 53
Re: Deletion 1p32 (or 1p32.3) chromosomal abnormality
For those following this thread, del 1p32, I’m sharing my wife’s update.
In March 2016 she was diagnosed with 4 chromosomal abnormalities (CAs), del 1p32, gain 1Q, t(4;14), and del 13. Her induction therapy was 5 cycles of Revlimid, Velcade, and dexamethasone (RVD) with a complete response. In September, 2016, she responded to an autologous stem cell transplant (ASCT) with a stringent complete response (sCR).
It has been two years since diagnosis and 18 months since her stem cell transplant and she is still in sCR. The great news is even with her CA’s, she’s had an excellent response to the novel agents and ASCT ,for which we are extremely grateful. It’s not been an easy road.
Her recovery from the ASCT took about a year. She was very fatigued throughout much of the year after the stem cell transplant. Her energy level is much improved this year. Her CBC counts also are all in the normal range this year.
Because of her CA's, following the stem cell transplant her myeloma specialist prescribed Revlimid maintenance, 10 mg. She was taking this for 4 months when an itchy rash appeared on her scalp and trunk areas. The rash was biopsied and treated without success. Revlimid maintenance was stopped. Upon stopping the Revlimid maintenance, the rash went away.
She was then prescribed Ninlaro maintenance. Again the rash returned on her scalp and trunk areas. Ninlaro maintenance was stopped. The rash went away.
She started Pomalyst maintenance, 2 mg, and the rash returned. The Pomalyst maintenance was reduced to 1 mg. The itchy rash still persists, although perhaps not as severe. Interestingly, it comes on stronger at night.
Every remedy mentioned on this site and elsewhere has been tried to help with the itch. The remedies sometime work, but only temporarily. Stopping the drugs is the only permanent fix, which of course, her myeloma specialist does not want her to do.
We are counting our blessings that the therapy has worked for two years and she is still in complete remission. With the new agents, we are hopeful for many more years of complete remission.
In March 2016 she was diagnosed with 4 chromosomal abnormalities (CAs), del 1p32, gain 1Q, t(4;14), and del 13. Her induction therapy was 5 cycles of Revlimid, Velcade, and dexamethasone (RVD) with a complete response. In September, 2016, she responded to an autologous stem cell transplant (ASCT) with a stringent complete response (sCR).
It has been two years since diagnosis and 18 months since her stem cell transplant and she is still in sCR. The great news is even with her CA’s, she’s had an excellent response to the novel agents and ASCT ,for which we are extremely grateful. It’s not been an easy road.
Her recovery from the ASCT took about a year. She was very fatigued throughout much of the year after the stem cell transplant. Her energy level is much improved this year. Her CBC counts also are all in the normal range this year.
Because of her CA's, following the stem cell transplant her myeloma specialist prescribed Revlimid maintenance, 10 mg. She was taking this for 4 months when an itchy rash appeared on her scalp and trunk areas. The rash was biopsied and treated without success. Revlimid maintenance was stopped. Upon stopping the Revlimid maintenance, the rash went away.
She was then prescribed Ninlaro maintenance. Again the rash returned on her scalp and trunk areas. Ninlaro maintenance was stopped. The rash went away.
She started Pomalyst maintenance, 2 mg, and the rash returned. The Pomalyst maintenance was reduced to 1 mg. The itchy rash still persists, although perhaps not as severe. Interestingly, it comes on stronger at night.
Every remedy mentioned on this site and elsewhere has been tried to help with the itch. The remedies sometime work, but only temporarily. Stopping the drugs is the only permanent fix, which of course, her myeloma specialist does not want her to do.
We are counting our blessings that the therapy has worked for two years and she is still in complete remission. With the new agents, we are hopeful for many more years of complete remission.
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Deletion 1p32 (or 1p32.3) chromosomal abnormality
This is wonderful post. My specialist told me I was at a slightly higher risk, whatever that means, but that I don’t have 17 deletion and that was a very good thing. I’m just going to be starting treatment, and I hope to be as successful with it as all of you have been!
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