I am a newly diagnosed patient and just began treatment. I'm taking the RVD (Revlimid, Velcade, Dex) combination. I have been diagnosed with the del(17p) chromosome mutation that was found using the FISH method. My current treatment plan is to complete 4 cycles of chemo and then have an autologous stem cell transplant.
My question is: Will the del(17p) chromosome problem return AFTER the transplant? Or will the transplant erase the chance of the mutation happening again?
I am trying to learn as much as I can regarding this mutation issue, as the doctors have categorized my case as "high-risk" because of the del(17p) discovery.
I would appreciate any information -- especially from other people with this same del(17p) finding.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Will my del(17p) mutation return after initial treatment
Hey CabinGirl,
Welcome to the forum! Glad to see that you've come here.
First, I'm not a doc, so please confirm all this with yours and take everything I say with a grain of salt.
I assume you are talking about an autologous (auto) transplant, right? Let's assume that we are.
It is my understanding that your 17p- mutation will not be "erased" by the high dose chemo and auto transplant process and will appear if you still have a measurable amount of disease after the transplant. Also, if you achieve stringent complete remission, you will likely still see this specific mutation if the disease reappears at a later time (i.e. you relapse) and you have a measurable amount of disease that the FISH can detect.
There are several reasons for this.
1. The high dose chemo (which is really the treatment, not the auto transplant itself) isn't guaranteed to wipe out all the multiple myeloma cells. There can also can be progenitor cells lurking in your system that can create new multiple myeloma cells over time. The loose analogy that some folks like to offer is that you are simply cutting off the tops of most of the weeds with an auto transplant, but not necessarily the roots.
2. The auto transplant infusion process is also not perfect and you can re-infuse multiple myeloma cells back into your blood during this process (this doesn't occur with an allo since you are using a donor's cells).
3. In spite of what you might hear about "MRD Zero" testing (zero amount of minimal residual disease after treatment), there will always be some amount of multiple myeloma disease present. It's just a question of how carefully one wants to measure the disease in one's body that could progress over time. The Black Swan initiative is looking at measuring MRD down to 1 in 1,000,000 cells (10E-6)...and they also couple this measurement with some other tests. But if you were to measure more carefully (let's say 1 in 100,000,000 cells), you will still likely find signs of the disease. Don't get me wrong, the Black Swan MRD Zero initiative is a great thing and it has many benefits to patients and doctors, but it doesn't tell you if the disease has been "completely" wiped out of your system.
Welcome to the forum! Glad to see that you've come here.
First, I'm not a doc, so please confirm all this with yours and take everything I say with a grain of salt.
I assume you are talking about an autologous (auto) transplant, right? Let's assume that we are.
It is my understanding that your 17p- mutation will not be "erased" by the high dose chemo and auto transplant process and will appear if you still have a measurable amount of disease after the transplant. Also, if you achieve stringent complete remission, you will likely still see this specific mutation if the disease reappears at a later time (i.e. you relapse) and you have a measurable amount of disease that the FISH can detect.
There are several reasons for this.
1. The high dose chemo (which is really the treatment, not the auto transplant itself) isn't guaranteed to wipe out all the multiple myeloma cells. There can also can be progenitor cells lurking in your system that can create new multiple myeloma cells over time. The loose analogy that some folks like to offer is that you are simply cutting off the tops of most of the weeds with an auto transplant, but not necessarily the roots.
2. The auto transplant infusion process is also not perfect and you can re-infuse multiple myeloma cells back into your blood during this process (this doesn't occur with an allo since you are using a donor's cells).
3. In spite of what you might hear about "MRD Zero" testing (zero amount of minimal residual disease after treatment), there will always be some amount of multiple myeloma disease present. It's just a question of how carefully one wants to measure the disease in one's body that could progress over time. The Black Swan initiative is looking at measuring MRD down to 1 in 1,000,000 cells (10E-6)...and they also couple this measurement with some other tests. But if you were to measure more carefully (let's say 1 in 100,000,000 cells), you will still likely find signs of the disease. Don't get me wrong, the Black Swan MRD Zero initiative is a great thing and it has many benefits to patients and doctors, but it doesn't tell you if the disease has been "completely" wiped out of your system.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Will my del(17p) mutation return after initial treatment
Hi CabinGirl,
Multibilly gave you a good reply. My understanding on this is the same as his. Although I tested as MRD-negative in July (something I'm very happy about), my doctor is continuing Revlimid maintenance for me because, as he said, "The working assumption is that there are still myeloma cells present."
In fact my Free Light Chain kappa/lambda ratio ticked up out of range in this month's testing, making us think "something is cooking." I may now hold the record for shortest time in sCR - just 2 months, since that abnormal ratio disqualifies me for the "stringent" part of sCR.
And to add one more thing, my myeloma specialist has told me that even if no (or only one, in your case) genetic abnormality shows up in an initial FISH test, the disease can mutate over time and produce other abnormalities in later FISH tests. Not a comforting thought, but myeloma is very tricky.
Good luck with your chemo regimen (BTW, what chemo agents are you getting?) and the auto SCT. You'll find lots of helpful info on this site as you move through those phases. Keep us posted on how things go for you.
Multibilly gave you a good reply. My understanding on this is the same as his. Although I tested as MRD-negative in July (something I'm very happy about), my doctor is continuing Revlimid maintenance for me because, as he said, "The working assumption is that there are still myeloma cells present."
In fact my Free Light Chain kappa/lambda ratio ticked up out of range in this month's testing, making us think "something is cooking." I may now hold the record for shortest time in sCR - just 2 months, since that abnormal ratio disqualifies me for the "stringent" part of sCR.
And to add one more thing, my myeloma specialist has told me that even if no (or only one, in your case) genetic abnormality shows up in an initial FISH test, the disease can mutate over time and produce other abnormalities in later FISH tests. Not a comforting thought, but myeloma is very tricky.
Good luck with your chemo regimen (BTW, what chemo agents are you getting?) and the auto SCT. You'll find lots of helpful info on this site as you move through those phases. Keep us posted on how things go for you.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Will my del(17p) mutation return after initial treatment
Dear Multibilly and Mikeb
Thank you for your responses. You were correct in assuming that I will be having an Auto SCT, after I complete about 4 cycles of chemo. My current treatment plan is supposed to be Revlimid, Velcade, & Dexamethasone. However, my insurance company is dragging their feet on approving the Revlimid, so as of today, I've started my chemotherapy, minus the Revlimid. My oncologist is doing everything they can to get my insurance to approve the Revlimid.
Everything I've read about the 17p del mutation has me so very worried. It apparently makes a person's disease one of the most aggressive for myeloma and extremely tough to overcome. One article I read spoke of the 17p del as having a very high fatal outcome, even after going through with the high-dose chemo and a stem cell transplant. NOT what I need to read as I am just beginning my treatment.
Again, thank you for posting a response to my question. I am so glad the Beacon exists to aid our information gathering.
Thank you for your responses. You were correct in assuming that I will be having an Auto SCT, after I complete about 4 cycles of chemo. My current treatment plan is supposed to be Revlimid, Velcade, & Dexamethasone. However, my insurance company is dragging their feet on approving the Revlimid, so as of today, I've started my chemotherapy, minus the Revlimid. My oncologist is doing everything they can to get my insurance to approve the Revlimid.
Everything I've read about the 17p del mutation has me so very worried. It apparently makes a person's disease one of the most aggressive for myeloma and extremely tough to overcome. One article I read spoke of the 17p del as having a very high fatal outcome, even after going through with the high-dose chemo and a stem cell transplant. NOT what I need to read as I am just beginning my treatment.
Again, thank you for posting a response to my question. I am so glad the Beacon exists to aid our information gathering.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Will my del(17p) mutation return after initial treatment
Dear Cabingirl,
I think the previous replies did a very nice job responding to your specific questions.
In addition to those comments regarding del 17p, which is a marker for high risk or aggressive disease, I would add that it should prompt a more aggressive / novel post-transplant maintenance regimen. Also, with del 17p, one may want to consider participating in a clinical trial for access to novel ways to treat this aggressive disease. This could include trials for the induction therapy (for example, the national SWOGS1211 clinical trial); trials involving a transplant with post-transplant vaccine studies; or trials involving novel maintenance therapy.
Also, as a side note, there are a subset of patients with del 17 who do well.
All the best.
I think the previous replies did a very nice job responding to your specific questions.
In addition to those comments regarding del 17p, which is a marker for high risk or aggressive disease, I would add that it should prompt a more aggressive / novel post-transplant maintenance regimen. Also, with del 17p, one may want to consider participating in a clinical trial for access to novel ways to treat this aggressive disease. This could include trials for the induction therapy (for example, the national SWOGS1211 clinical trial); trials involving a transplant with post-transplant vaccine studies; or trials involving novel maintenance therapy.
Also, as a side note, there are a subset of patients with del 17 who do well.
All the best.
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: Will my del(17p) mutation return after initial treatment
Thank you Dr. Shah for your response.
The SWOGS1211 trial was discussed during my consultations with both my local oncologist in Minneapolis and the Mayo Rochester consultation. It sounded like I would have been a perfect fit to participate in the Stage 1 portion, as it was meant for newly diagnosed, high-risk patients, with the 17p del mutation that had not yet begun any form of chemotherapy treatment.
However, I was told that to particpate, I would need to move to Jacksonville, Florida to be included in the trial, as that was the Mayo location that was administering the Phase 1 trial, along with a few other southern city locations.
Both my doctors agreed that moving and living away from home, away from family & job at this point would not be to my advantage. Three of the 4 drugs that would be administered in the clinical trial are the drugs I am currently receiving.
Both doctors agreed that if the trial results were showing successful outcomes against the 17p del mutation, that I could possibly join the trial after my auto stem cell transplant, if I could not reach or maintain a remission status.
Dr. Shah mentioned at the end of his post that some 17p del patients are doing well, even with having the 17p del mutation. If anyone has any trial results or research papers that would be beneficial for me to read, I would most certainly appreciate having you post. I'm sure there are others that would be interested as well.
Also, on a side note, Dr. Shah, I have a son who lives in Houston and I'm very aware of the world-renowned MD Anderson Center's reputation for cancer treatment.
The SWOGS1211 trial was discussed during my consultations with both my local oncologist in Minneapolis and the Mayo Rochester consultation. It sounded like I would have been a perfect fit to participate in the Stage 1 portion, as it was meant for newly diagnosed, high-risk patients, with the 17p del mutation that had not yet begun any form of chemotherapy treatment.
However, I was told that to particpate, I would need to move to Jacksonville, Florida to be included in the trial, as that was the Mayo location that was administering the Phase 1 trial, along with a few other southern city locations.
Both my doctors agreed that moving and living away from home, away from family & job at this point would not be to my advantage. Three of the 4 drugs that would be administered in the clinical trial are the drugs I am currently receiving.
Both doctors agreed that if the trial results were showing successful outcomes against the 17p del mutation, that I could possibly join the trial after my auto stem cell transplant, if I could not reach or maintain a remission status.
Dr. Shah mentioned at the end of his post that some 17p del patients are doing well, even with having the 17p del mutation. If anyone has any trial results or research papers that would be beneficial for me to read, I would most certainly appreciate having you post. I'm sure there are others that would be interested as well.
Also, on a side note, Dr. Shah, I have a son who lives in Houston and I'm very aware of the world-renowned MD Anderson Center's reputation for cancer treatment.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
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