Bone marrow biopsy showed poor prognosis due to chromosome abnormalities (gains chromosomes 3, 5, 11, 15, 20 and 21; unbalanced translocation between chromosome 1 and 12 which resulted in gain of 1q; loss of chromosomes x and 22)
Can anyone explain how bad this prognosis is?
My wife's previous bone marrow biopsies didn't show any bad prognosis statements.
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Re: Bone marrow biopsy shows poor prognosis
The big dogs associated with high-risk multiple myeloma that one worries the most about with multiple myeloma are del(17p), t(14;16), t(14;20) and del(1p) - none of which are mentioned in your summary. A 1q gain is generally considered an intermediate risk mutation.
See this article and associated links to get a better idea of the implications of various mutations:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
In any case, a multiple myeloma specialist really needs to be the one to offer up an interpretation of these findings.
See this article and associated links to get a better idea of the implications of various mutations:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
In any case, a multiple myeloma specialist really needs to be the one to offer up an interpretation of these findings.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone marrow biopsy shows poor prognosis
Thanks so much for your response. Her doctor is a man of few words and quite difficult to get info from.
Re: Bone marrow biopsy shows poor prognosis
If you don't mind me asking, where is she being seen?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone marrow biopsy shows poor prognosis
Her local cancer Doctor is Dr. Roger Lyons in San Antonio. Very well regarded and is listed on Americas Top Doctor List since 2004. She also goes to Dr. Weber at M.D. Anderson.
Right now she is on a stage 1 trial for BBI608 but might soon have to get off due to disease progression.
See other post for details:
https://myelomabeacon.org/forum/stay-in-clinical-trial-t6338.html#p37708
I would consider moving to any area/facility so she can get the best care, but I also don't want to take away her best quality of life (family/friends).
Right now she is on a stage 1 trial for BBI608 but might soon have to get off due to disease progression.
See other post for details:
https://myelomabeacon.org/forum/stay-in-clinical-trial-t6338.html#p37708
I would consider moving to any area/facility so she can get the best care, but I also don't want to take away her best quality of life (family/friends).
Re: Bone marrow biopsy shows poor prognosis
Being by family is important. But it's also important to have a communicative doctor.
In regards to investigating MAB trials in one of your earlier threads, I still might suggest getting a second opinion at a place like Dana Farber, the Mayo Clinic, or the IMBCR (where I go). There are also many other many fine institutions with MAB expertise, including MD Anderson. The places I mentioned are just where I think I might first personally reach out to for a second opinion if I were in your shoes. Getting a second opinion at one of these places certainly doesn't mean that you need to do the trial in their location (which you probably already fully understand given your long multiple myeloma journey so far).
As far as I know, MD Anderson is participating in a number of elo and dara trials and you could always do an MAB trial there, regardless of where the second opinion came from. SAR650984 trials are being conducted in far fewer locations and I don't believe that any SAR650984 trials are offered in Texas.
In regards to investigating MAB trials in one of your earlier threads, I still might suggest getting a second opinion at a place like Dana Farber, the Mayo Clinic, or the IMBCR (where I go). There are also many other many fine institutions with MAB expertise, including MD Anderson. The places I mentioned are just where I think I might first personally reach out to for a second opinion if I were in your shoes. Getting a second opinion at one of these places certainly doesn't mean that you need to do the trial in their location (which you probably already fully understand given your long multiple myeloma journey so far).
As far as I know, MD Anderson is participating in a number of elo and dara trials and you could always do an MAB trial there, regardless of where the second opinion came from. SAR650984 trials are being conducted in far fewer locations and I don't believe that any SAR650984 trials are offered in Texas.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone marrow biopsy shows poor prognosis
Limeusa
I agree with Multibilly that you really need a myeloma specialist who can explain how they view your risk status.
Although 1p deletions are considered a poor prognostic factor, but everything I have read suggests so are 1q gains. I have 1p deletion and asked my clinician about my chromosome 1 imbalance and was told I was intermediate risk.
The picture seems more complicated with the chromosome 1 imbalances.
Your clinician looking at the whole picture can give you the information you require. Myeloma is very complex .Only a myeloma specialist can 'pull it all together' for you. I have a doctor who has published relevant work and was willing to print out the paper for me.
Please try not to worry and if you can find a doctor who can be informative it will be your best option.
Edna
I agree with Multibilly that you really need a myeloma specialist who can explain how they view your risk status.
Although 1p deletions are considered a poor prognostic factor, but everything I have read suggests so are 1q gains. I have 1p deletion and asked my clinician about my chromosome 1 imbalance and was told I was intermediate risk.
The picture seems more complicated with the chromosome 1 imbalances.
Your clinician looking at the whole picture can give you the information you require. Myeloma is very complex .Only a myeloma specialist can 'pull it all together' for you. I have a doctor who has published relevant work and was willing to print out the paper for me.
Please try not to worry and if you can find a doctor who can be informative it will be your best option.
Edna
Re: Bone marrow biopsy shows poor prognosis
Limeusa,
You don't have to move to have a great multiple myeloma specialist. We live in Michigan. My husband's myeloma specialist is at Mayo Clinic in MN. My husband sees the Mayo doc either once a year when things or going well, or as needed if treatment needs to be changed. Our local oncologist is more than happy to let Mayo call the shots, and the local doc provides what Mayo reccommends.
(as an aside: those "America's top doctors" lists are pretty meaningless. Sometimes you can get on those lists for a fee, or by buying advertising, using a certain company"s products, etc. My husband is a doctor)
You don't have to move to have a great multiple myeloma specialist. We live in Michigan. My husband's myeloma specialist is at Mayo Clinic in MN. My husband sees the Mayo doc either once a year when things or going well, or as needed if treatment needs to be changed. Our local oncologist is more than happy to let Mayo call the shots, and the local doc provides what Mayo reccommends.
(as an aside: those "America's top doctors" lists are pretty meaningless. Sometimes you can get on those lists for a fee, or by buying advertising, using a certain company"s products, etc. My husband is a doctor)
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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: Bone marrow biopsy shows poor prognosis
Thanks Rumnting. We tried that when we went to MD Anderson but her local doctor wouldn't follow MD Andersons recommendations to the letter. He adjusted dosages and combos based on how my wife was doing, always favoring quality of life over harsh treatments. This frustrated the MD Anderson doctor and effected our relationship with her. My wife actually has done very well on the quality of life side but now I fear the Myeloma is roaring back like we have never seen it before.
It is going to be hard to change doctors at this stage because it always takes so long to join a new doctor group. I know it would be best to have a Myeloma specialist be her primary oncologist so we might have to move to Houston or somewhere else as we haven't found one in San Antonio.
It is going to be hard to change doctors at this stage because it always takes so long to join a new doctor group. I know it would be best to have a Myeloma specialist be her primary oncologist so we might have to move to Houston or somewhere else as we haven't found one in San Antonio.
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