Hi,
I was diagnosed with multiple myeloma on Friday, October 3 at 3.30pm. It was a shock, to say the least. I think I am still numb and not quite sure how to deal with all of this. At present, I think I have smoldering myeloma.
The reason I say this is because my lab work from August eliminates concerns about the CRA part of CRAB. I just had a bone survey this morning that showed no lesions. I am still waiting for the lab results that I had this morning. So, assuming there is no change from late August, I would be classified as smoldering according to my hematologist/oncologist.
While I guess this is something "positive" I can take from all this, I am upset about the fact that a bone marrow biopsy (which indicated 10%-15% plasma cells) I had indicated abnormalities in the FISH test.
I came across this site and have been reading quite a bit over the weekend and have found it really informative. I was hoping someone could give me some understanding of how to deal with the FISH test. My understanding is that it doesn't have much significance while in smoldering phase, but does indicate a poor prognosis once in full multiple myeloma. Is this the case? And if so, how bad is it? How can I stay positive with information like that? Does this mean that treatment will not work for me if my multiple myeloma becomes fully active?
I will be meeting with my hematologist/oncologist next week and another myeloma specialist in a few weeks, but I am searching for some guidance on how to deal with all of this in the meantime.
Thanks in advance!
Forums
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Just diagnosed on Friday
FingersCrossed,
First, welcome to the forum. I totally get that this can be a scary and uncertain time. I was there two years ago and I'm smoldering as well with a similar bone plasma percentage. Folks on this forum can help you and you can find some great resources on this site to learn more about smoldering multiple myeloma.
You don't say which specific kind of "abnormalities" were found in your FISH test (your doc may not have told this yet).
Note that some genetic mutations (chromosomal deletions, gains and translocations) are quite benign and some actually indicate a better prognosis for symptomatic multiple myeloma patients. It's just that some particular mutations have been associated with a higher risk for symptomatic myeloma patients. There is also emerging evidence that there may be an association with the type of mutation one has and the time-to-progression from smoldering multiple myeloma to symptomatic multiple myeloma, so it is important that you understand what your specific "cytogenetics" (profile of mutations) are. A high-risk symptomatic mutation such as a deletion known as "del 17p", or an intermediate risk translocation such as "t(4;14)" are the kinds of terms that your doc may use when conveying the names of these mutations to you.
In general, one does not treat smoldering multiple myeloma. The exception to this might be for very "high-risk" smoldering patients ...and then this is generally only done in a clinical trial setting. Note that there is currently quite a bit of debate and discussion on this topic in the medical arena. New guidelines for classifying and treating certain classes of smoldering multiple myeloma patients may be forthcoming in the near future.
Remember that you could very well smolder for the rest of your life and it is not a given that you will progress to symptomatic multiple myeloma. Sometimes, it's easy to lose sight of this fact as a smolderer. And try not to fret about the fact that you may have mutations until you actually know which specific mutations you may have.
Hope this helps a bit.
First, welcome to the forum. I totally get that this can be a scary and uncertain time. I was there two years ago and I'm smoldering as well with a similar bone plasma percentage. Folks on this forum can help you and you can find some great resources on this site to learn more about smoldering multiple myeloma.
You don't say which specific kind of "abnormalities" were found in your FISH test (your doc may not have told this yet).
Note that some genetic mutations (chromosomal deletions, gains and translocations) are quite benign and some actually indicate a better prognosis for symptomatic multiple myeloma patients. It's just that some particular mutations have been associated with a higher risk for symptomatic myeloma patients. There is also emerging evidence that there may be an association with the type of mutation one has and the time-to-progression from smoldering multiple myeloma to symptomatic multiple myeloma, so it is important that you understand what your specific "cytogenetics" (profile of mutations) are. A high-risk symptomatic mutation such as a deletion known as "del 17p", or an intermediate risk translocation such as "t(4;14)" are the kinds of terms that your doc may use when conveying the names of these mutations to you.
In general, one does not treat smoldering multiple myeloma. The exception to this might be for very "high-risk" smoldering patients ...and then this is generally only done in a clinical trial setting. Note that there is currently quite a bit of debate and discussion on this topic in the medical arena. New guidelines for classifying and treating certain classes of smoldering multiple myeloma patients may be forthcoming in the near future.
Remember that you could very well smolder for the rest of your life and it is not a given that you will progress to symptomatic multiple myeloma. Sometimes, it's easy to lose sight of this fact as a smolderer. And try not to fret about the fact that you may have mutations until you actually know which specific mutations you may have.
Hope this helps a bit.
Last edited by Multibilly on Mon Oct 06, 2014 7:53 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed on Friday
Thanks Multibilly,
Not sure what happened with my first post, but I thought I had also written that I am in my mid-40s. Hopefully, age will also work in my favor.
Anyway, here is what my doc's note says about the FISH test:
FISH abn hyperdiploid clone with extra copy of Chromosomes 3,5,7,9,11,20 and monosomy 17
He also notes IgG kappa restricted and also the following:
Cytogenetics - no clonal chromosomal abn.
When you say "higher risk for symptomatic myeloma patients" what do you mean?
Thanks.
Not sure what happened with my first post, but I thought I had also written that I am in my mid-40s. Hopefully, age will also work in my favor.
Anyway, here is what my doc's note says about the FISH test:
FISH abn hyperdiploid clone with extra copy of Chromosomes 3,5,7,9,11,20 and monosomy 17
He also notes IgG kappa restricted and also the following:
Cytogenetics - no clonal chromosomal abn.
When you say "higher risk for symptomatic myeloma patients" what do you mean?
Thanks.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Just diagnosed on Friday
Well, there's no consenus on for risk classification for smoldering multiple myeloma patients. You may want to read through this article:
"Mayo, PETHEMA, And The Risk Of Progression In Smoldering Myeloma: More Disagreement Than Agreement," The Myeloma Beacon, Jan 23, 2013.
And the click through to:
"Risk of progression classification - smoldering myeloma?", Beacon forum discussion started Dec 26, 2012.
Now, I'm not a doc, but from what you've posted here regarding your results, I'm not sure that you have any worrisome mutations to be concerned about.
"Mayo, PETHEMA, And The Risk Of Progression In Smoldering Myeloma: More Disagreement Than Agreement," The Myeloma Beacon, Jan 23, 2013.
And the click through to:
"Risk of progression classification - smoldering myeloma?", Beacon forum discussion started Dec 26, 2012.
Now, I'm not a doc, but from what you've posted here regarding your results, I'm not sure that you have any worrisome mutations to be concerned about.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed on Friday
Thanks. I will definitely read these articles!
As for the abnormalities, I think it's the monosomy 17 that has me worried. I thought that was the deletion in 17 that you mentioned as high-risk. I basically have a single copy of 17. My doc said this implies a poor prognosis during full-blown multiple myeloma, but is of no significance during SMM.
As for the abnormalities, I think it's the monosomy 17 that has me worried. I thought that was the deletion in 17 that you mentioned as high-risk. I basically have a single copy of 17. My doc said this implies a poor prognosis during full-blown multiple myeloma, but is of no significance during SMM.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Just Diagnosed on Friday
Oops, you are right. A del 17p is a monosomy 17.
We believe in being forthright with information and our opinions on this forum, so you may want to read through this research paper on the risk-of-progression and genetic abnormalities, put out at the end of 2013. It's peer reviewed (verified by others experts in the industry) and it was put together by some heavyweights in the multiple myeloma field:
SV Rajkumar et al, "Impact of primary molecular cytogenetic abnormalities and risk of progression in smoldering multiple myeloma," Leukemia, Aug 2013.
This may be a difficult read for you as person brand new to multiple myeloma. The Beacon also did a great summary in very understandable language:
"Chromosomal Abnormalities May Identify Smoldering Myeloma Patients At Higher Risk of Progression," The Myeloma Beacon, Mar 29, 2013.
My own experience has taught me that some doctors in this field are not aware of this report.
We believe in being forthright with information and our opinions on this forum, so you may want to read through this research paper on the risk-of-progression and genetic abnormalities, put out at the end of 2013. It's peer reviewed (verified by others experts in the industry) and it was put together by some heavyweights in the multiple myeloma field:
SV Rajkumar et al, "Impact of primary molecular cytogenetic abnormalities and risk of progression in smoldering multiple myeloma," Leukemia, Aug 2013.
This may be a difficult read for you as person brand new to multiple myeloma. The Beacon also did a great summary in very understandable language:
"Chromosomal Abnormalities May Identify Smoldering Myeloma Patients At Higher Risk of Progression," The Myeloma Beacon, Mar 29, 2013.
My own experience has taught me that some doctors in this field are not aware of this report.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed on Friday
I read through the articles. I'm hoping that the involvement of my chromosome 17 (i.e. having a single copy) is not exactly what they mean by missing a region of 17, but I fear that it is. The survival rates are not encouraging. However, I guess the positives that I can take away from that is that the median age in those studies was above 60 (I'm only mid-40s). Plus I found another article on the site that suggests that having multiples of some chromosomes can neutralize some of the negative effects of other high-risk characteristics.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Just diagnosed on Friday
Fingerscrossed,
The FISH test you had for multiple myeloma should have had a specific "probe" set up as part of the test to specifically identify whether or not you had a del 17p (also known as 17p-). The specific probes that were used in the FISH and the results of those tests should be listed in your FISH report.
FISH reports are extremely difficult for a layman to read and fully understand, so you might want to just call your doctor's office (or the pathologist/hospital that did the FISH) to see what his/her take is on whether the monosomy 17 is specifically a del 17p.
Also, if you don't have a copy of your FISH (and your other lab reports), you can always call the doctor's office and request that they send you a copy.
At least, this is what I would personally do. I would rather know the news a few weeks ahead of time, rather than speculate. But I know that some folks may not want to know this info ahead of time and would rather wait for the doctor to explain it in person.
The FISH test you had for multiple myeloma should have had a specific "probe" set up as part of the test to specifically identify whether or not you had a del 17p (also known as 17p-). The specific probes that were used in the FISH and the results of those tests should be listed in your FISH report.
FISH reports are extremely difficult for a layman to read and fully understand, so you might want to just call your doctor's office (or the pathologist/hospital that did the FISH) to see what his/her take is on whether the monosomy 17 is specifically a del 17p.
Also, if you don't have a copy of your FISH (and your other lab reports), you can always call the doctor's office and request that they send you a copy.
At least, this is what I would personally do. I would rather know the news a few weeks ahead of time, rather than speculate. But I know that some folks may not want to know this info ahead of time and would rather wait for the doctor to explain it in person.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed on Friday
Let me preface my comments by saying that I will be meeting with my hematologist next week, I just wanted to get a jump on interpreting some of the lab results I just received.
Unfortunately, I don't have the measurements, as I am going solely from my primary care physician's notes - he has not posted the full lab results yet.
Looks like I am officially smoldering. However, I might be high-risk based on my FISH results.
Anyway, I had a question about the kappa / lambda ratio. My ratio is 2.07. That's high, but is just outside the normal range of 0.26 - 1.65 for my lab.
My kappa number was 18.8, normal, and my lambda number was 9.1, which looks like it's also in the normal range. Does magnitude matter in this case, or is it simply bad that it is outside the normal range?
My Beta 2 microglobulin number is 1.47. I'm assuming that is also good?
Gamma globulins = 2.2, normal range for my lab is 0.6-1.6.
Again, sorry for not having the measurements, but like I said, I'm going just off my doc's notes.
Thanks in advance.
Unfortunately, I don't have the measurements, as I am going solely from my primary care physician's notes - he has not posted the full lab results yet.
Looks like I am officially smoldering. However, I might be high-risk based on my FISH results.
Anyway, I had a question about the kappa / lambda ratio. My ratio is 2.07. That's high, but is just outside the normal range of 0.26 - 1.65 for my lab.
My kappa number was 18.8, normal, and my lambda number was 9.1, which looks like it's also in the normal range. Does magnitude matter in this case, or is it simply bad that it is outside the normal range?
My Beta 2 microglobulin number is 1.47. I'm assuming that is also good?
Gamma globulins = 2.2, normal range for my lab is 0.6-1.6.
Again, sorry for not having the measurements, but like I said, I'm going just off my doc's notes.
Thanks in advance.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Just diagnosed on Friday
Fingerscrossed,
These are pretty darn good levels for all the results you have posted. I don't think your doc is going to be worried about any of these levels. The key item you are missing is your M-spike, which you will find on the serum protein electrophoresis test when you see your doc.
Make sure to ask for copies of all your labs (and his diagnosis writeup) when you see your hemotologist. They really come in handy later.
Also, consider writing down all your questions beforehand, taking notes and recording the appointment on your phone or other device (or bring a friend as a second ear). It's easy to get overwhelmed and sidetracked in your thoughts during one of these appointments, especially if something new pops up. Being able to go back and listen to the appointment later, or have a friend explain what he/she heard really can be helpful.
These are pretty darn good levels for all the results you have posted. I don't think your doc is going to be worried about any of these levels. The key item you are missing is your M-spike, which you will find on the serum protein electrophoresis test when you see your doc.
Make sure to ask for copies of all your labs (and his diagnosis writeup) when you see your hemotologist. They really come in handy later.
Also, consider writing down all your questions beforehand, taking notes and recording the appointment on your phone or other device (or bring a friend as a second ear). It's easy to get overwhelmed and sidetracked in your thoughts during one of these appointments, especially if something new pops up. Being able to go back and listen to the appointment later, or have a friend explain what he/she heard really can be helpful.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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