Hello!
I wish I were connecting with all of you on better terms, but if cancer is capable of any goodness, it's connecting people
My name is Paul, and I was diagnosed with a 5 cm (2 inch) solitary bone plasmacytoma (SBP) in December of 2010. All of my "markers" were normal: 3-5 percent plasma cell involvement in bone marrow; normal calcium; no anemia; and no renal involvement. I did, however, have a pathological fracture.
My hematology-oncologist, shocked by my age and general well being, decided local radiation would be best. And so began my journey.
Following several -- 26, if my memory serves me correctly -- rounds of radiation therapy, I was loosed upon the world, and told to return for routine blood work every 3 months. After my first blood test, I was informed that the monoclonal gammopathy was still present. And that would continue to be the case, as over the course of the last 4 years my M-protein would hold stable.
Unfortunately, as I learned after my follow-up on November 13th, 2014, my M-protein doubled, raising from 0.9 to 1.96 g/dL (9 to 19.6 g/L). While still comparatively low, that was enough for me (and my new doctor) to become concerned. A bone scan confirmed the presence of several small lytic lesions on my skull. However, as was the case the first time, I am neither anemic nor hypercalcemic, and my bone marrow involvement is, again, 3-5 percent. Moreover, I have no renal deficiencies of any kind (not spilling any M-protein in my urine), and my FISH panel was normal.
At my last appointment on December 8th, 2014, my doctor was, to put it mildly, perplexed. Unsure how to proceed, she ordered slides of my first bone marrow biopsy and sent me for a PET scan to see if she can find something to point her in the right direction. My old hematology-oncologist, who retired in July of 2014, offered his opinion: "You present a unique opportunity for doctors, so unless they think they can knock it [myeloma] out of you for good, I wouldn't pursue treatment right now -- I'd just continue to watch its course."
Thus, here I am on the eve of my appointment, hoping to avoid treatment, if only because I cannot reconcile the idea of being treated when I feel alright. If, however, my doctor decides (based on opinion or newly surfaced evidence) to pursue treatment, I'll have some thinking and researching to do.
In any event, I'm lucky and thankful that myeloma hasn't exacted a toll on my body (save for those pesky little lesions, which I don't feel). Much to my dismay, I cannot say the same for my psyche, as thoughts of mortality and suffering loom large -- especially when I'm feeling down or under the weather.
Thank you for providing a venue for me to share with all of you my story. I wish all of you nothing but the best. It is with a stinging sadness that I hear and watch people suffer -- especially people with myeloma. May you all burden myeloma with so irrepressible a spirit that it has no choice but to retreat.
With love to all of my dear brothers and sisters,
Paul
Forums
9 posts
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dustydenimdad - Name: Paul Garcia
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2010
- Age at diagnosis: 24
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
Hi Paul,
So sorry to meet you here in the forum, but thanks for the very informative introduction.
It is incredibly saddening to read of people such as yourself who have been diagnosed, or may soon be diagnosed, with multiple myeloma. It's also inspiring to see someone such as yourself face the disease with so much calm and such a reserve of positive energy.
You seem to be well read on the subject of myeloma, so I'm hesitant to even point this out, but in case you missed it, there are new diagnostic criteria for multiple myeloma that were released late last year. You can find a good review of them here:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
With bone damage (lytic lesions) that are probably the result of your monoclonal gammopathy, you most likely would be considered to have multiple myeloma under both the old and new diagnostic criteria.
I can understand, however, the hesitation your doctors have shown to treat you. Your case does seem quite unusual, deserving of special consideration.
A couple of questions:
First, did you ever get the results of your recent PET scan and, if so, what did they show?
Second, are you being seen by, or has your case been reviewed by, a physician who specializes in multiple myeloma? This would be a physician, most likely at a major cancer center, who sees almost exclusively myeloma patients.
The physicians you have had so far seem knowledgeable. However, given how unique your case is, it seems like it would be beneficial to get the opinion of a physician who sees so many myeloma patients each year that, for him or her, yours might not be the first case of its kind he/she has seen.
Whatever you and your doctors eventually find and decide, I wish you the best. Ideally, you won't have to post here more than one more time, just to tell us it was all a false alarm. But, if things go differently, we're glad to be of help.
Good luck!
So sorry to meet you here in the forum, but thanks for the very informative introduction.
It is incredibly saddening to read of people such as yourself who have been diagnosed, or may soon be diagnosed, with multiple myeloma. It's also inspiring to see someone such as yourself face the disease with so much calm and such a reserve of positive energy.
You seem to be well read on the subject of myeloma, so I'm hesitant to even point this out, but in case you missed it, there are new diagnostic criteria for multiple myeloma that were released late last year. You can find a good review of them here:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
With bone damage (lytic lesions) that are probably the result of your monoclonal gammopathy, you most likely would be considered to have multiple myeloma under both the old and new diagnostic criteria.
I can understand, however, the hesitation your doctors have shown to treat you. Your case does seem quite unusual, deserving of special consideration.
A couple of questions:
First, did you ever get the results of your recent PET scan and, if so, what did they show?
Second, are you being seen by, or has your case been reviewed by, a physician who specializes in multiple myeloma? This would be a physician, most likely at a major cancer center, who sees almost exclusively myeloma patients.
The physicians you have had so far seem knowledgeable. However, given how unique your case is, it seems like it would be beneficial to get the opinion of a physician who sees so many myeloma patients each year that, for him or her, yours might not be the first case of its kind he/she has seen.
Whatever you and your doctors eventually find and decide, I wish you the best. Ideally, you won't have to post here more than one more time, just to tell us it was all a false alarm. But, if things go differently, we're glad to be of help.
Good luck!
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
As you have probably heard, the goal of radiation therapy for SBP is curative in nature, but this still remains a 50/50 proposition.
I agree that a simple serological increase in paraprotein is not a reason to start therapy. Small, questionable calvarial (skull) lytic lesions on bone survey (skeletal) survey are also a questionable reason to start therapy, as naturally occurring venous formations ("venous lakes") are frequently over-called by radiologists in imaging from multiple myeloma or SBP patients.
Additional imaging should be undertaken -- a CT of head, at a minimum. With your history of SBP, I would suggest PET/CT.
If confirmed, bone lytic lesions are multiple myeloma defining end organ events. Any of the CRAB criteria define active multiple myeloma, not all. Therefore, strong arguments for therapy can be made given your lytic bone disease, even with small amounts of clonal bone marrow plasma cells. This is especially the case in someone with previous SBP.
Additionally, I would strongly suggest that your seek a second opinion with a multiple myeloma specialist, if you have not already. There are nuances to everything, and the right therapeutic options, toxicities, and goals need to be laid out in the appropriate manner based on contemporary, up-to-date knowledge. Anyone with multiple myeloma should see a myeloma specialist, but this is especially so for someone of your age.
Hoping only the best for you.
I agree that a simple serological increase in paraprotein is not a reason to start therapy. Small, questionable calvarial (skull) lytic lesions on bone survey (skeletal) survey are also a questionable reason to start therapy, as naturally occurring venous formations ("venous lakes") are frequently over-called by radiologists in imaging from multiple myeloma or SBP patients.
Additional imaging should be undertaken -- a CT of head, at a minimum. With your history of SBP, I would suggest PET/CT.
If confirmed, bone lytic lesions are multiple myeloma defining end organ events. Any of the CRAB criteria define active multiple myeloma, not all. Therefore, strong arguments for therapy can be made given your lytic bone disease, even with small amounts of clonal bone marrow plasma cells. This is especially the case in someone with previous SBP.
Additionally, I would strongly suggest that your seek a second opinion with a multiple myeloma specialist, if you have not already. There are nuances to everything, and the right therapeutic options, toxicities, and goals need to be laid out in the appropriate manner based on contemporary, up-to-date knowledge. Anyone with multiple myeloma should see a myeloma specialist, but this is especially so for someone of your age.
Hoping only the best for you.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
Dear TerryH and Dr. Shain,
First and foremost, thank you both for your thoughtful responses. I am not only appreciative, but also humbled.
I'm being treated at Mount Sinai in New York City, where they have a consortium of doctors. A handful of them specialize in myeloma, and they work in conjunction with the bone marrow transplant team. My doctor is on the latter team. However, she frequently consults with physicians across disciplines.
Well, if my case wasn't curious enough before, then the results of my PET/CT certainly took care of that. Both my doctor and I were quite surprised by the presence of several lytic lesions detected throughout my body, especially since they went undetected by the skeletal survey. My spinal cord has been spared, for the most part, but I cannot say the same for other bones. (It doesn't appear to be too bad, but then again, when is having any lesions on any bone good?)
Oddly enough, the lesions on my skull did not light up. My former hematology-oncologist, who's been an active contributor to my care since retiring, was not surprised that the calvarial "lesions" did not light up, as he believes the spots represent "venous pooling."
At this point, it's worth stating that I have active multiple myeloma. As explained by my doctor, we still don't have evidence of my disease, since my most recent bone marrow biopsy was not conclusive, and, as we know, myeloma can be a patchy, pesky disease. The next step is to have a CT-guided biopsy of an easily accessible area of disease. From there, they will reassess and re-conduct a FISH panel. The FISH panel is what concerns me most. Although not a doctor, I understand just how problematic having a chromosomal abnormality can be, and I hope that is not the case.
Question: Is it still possible to have a genetic abnormality even though the first FISH panel came back normal?
Also, I'm unsure what is meant by this statement: "If confirmed, bone lytic lesions are multiple myeloma defining end organ events." Can someone please explain that?
Irrespective of what the biopsy reveals, treatment is inevitable. In the interim, I will continue working, exercising (doctor advised against contact sports, so I'll be walking on the treadmill), eating reasonably well, and chasing around my 2-and-a-half-year-old son, Emerson.
Is there anything else I can or should be doing to supplement my body as it tries warding off this alien invasion? Additionally, I will heed the advice and seek a second opinion from a myeloma specialist.
If there's a silver-lining in all of this, it's that I've been spared the symptoms. Like previously stated, my labs and kidney function have remained healthy, and I have not experienced discomfort from my newly discovered pals -- err, lesions. Even my IgG and M-protein are comparatively low at 3030 mg/dL and 2.3 g/dL [23 g/L], respectively -- which, I admit, is no consolation prize.
Above all, though, I'm thankful to be part of such a positive and vibrant community, where I can help and be helped.
Here's to all of you!
Best,
Paul
First and foremost, thank you both for your thoughtful responses. I am not only appreciative, but also humbled.
I'm being treated at Mount Sinai in New York City, where they have a consortium of doctors. A handful of them specialize in myeloma, and they work in conjunction with the bone marrow transplant team. My doctor is on the latter team. However, she frequently consults with physicians across disciplines.
Well, if my case wasn't curious enough before, then the results of my PET/CT certainly took care of that. Both my doctor and I were quite surprised by the presence of several lytic lesions detected throughout my body, especially since they went undetected by the skeletal survey. My spinal cord has been spared, for the most part, but I cannot say the same for other bones. (It doesn't appear to be too bad, but then again, when is having any lesions on any bone good?)
Oddly enough, the lesions on my skull did not light up. My former hematology-oncologist, who's been an active contributor to my care since retiring, was not surprised that the calvarial "lesions" did not light up, as he believes the spots represent "venous pooling."
At this point, it's worth stating that I have active multiple myeloma. As explained by my doctor, we still don't have evidence of my disease, since my most recent bone marrow biopsy was not conclusive, and, as we know, myeloma can be a patchy, pesky disease. The next step is to have a CT-guided biopsy of an easily accessible area of disease. From there, they will reassess and re-conduct a FISH panel. The FISH panel is what concerns me most. Although not a doctor, I understand just how problematic having a chromosomal abnormality can be, and I hope that is not the case.
Question: Is it still possible to have a genetic abnormality even though the first FISH panel came back normal?
Also, I'm unsure what is meant by this statement: "If confirmed, bone lytic lesions are multiple myeloma defining end organ events." Can someone please explain that?
Irrespective of what the biopsy reveals, treatment is inevitable. In the interim, I will continue working, exercising (doctor advised against contact sports, so I'll be walking on the treadmill), eating reasonably well, and chasing around my 2-and-a-half-year-old son, Emerson.
Is there anything else I can or should be doing to supplement my body as it tries warding off this alien invasion? Additionally, I will heed the advice and seek a second opinion from a myeloma specialist.
If there's a silver-lining in all of this, it's that I've been spared the symptoms. Like previously stated, my labs and kidney function have remained healthy, and I have not experienced discomfort from my newly discovered pals -- err, lesions. Even my IgG and M-protein are comparatively low at 3030 mg/dL and 2.3 g/dL [23 g/L], respectively -- which, I admit, is no consolation prize.
Above all, though, I'm thankful to be part of such a positive and vibrant community, where I can help and be helped.
Here's to all of you!
Best,
Paul
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dustydenimdad - Name: Paul Garcia
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2010
- Age at diagnosis: 24
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
Paul-
Keep up the good attitude and continue to do your research and to ask questions. As to your question about the comment, "If confirmed, bone lytic lesions are multiple myeloma defining end organ events," it means that you have active multiple myeloma. If you pay attention to the CRAB criteria for diagnosing myeloma, the B stands for bone involvement. So a positive finding in a biopsy of a lesion would give a positive diagnosis of myeloma.
It wouldn't hurt to get a second opinion from a myeloma specialist. You are being seen at a really good center for myeloma. One of the specialists there, Dr. Jagannath, is well known in the myeloma field. If you want to go out of the Mt. Sinai system, Memorial Sloan Kettering and Columbia both have good myeloma teams, too.
Because you are so young, it might be worth looking into the allogeneic transplant possibilities if you should be diagnosed with active myeloma. It is being used more often for people who have been diagnosed at a young age. There are a number of young people, in their 30's, who post on this forum. Hopefully, some of them will respond to some of your posts.
All the best to you and your family while you begin this journey,
Nancy in Phila
Keep up the good attitude and continue to do your research and to ask questions. As to your question about the comment, "If confirmed, bone lytic lesions are multiple myeloma defining end organ events," it means that you have active multiple myeloma. If you pay attention to the CRAB criteria for diagnosing myeloma, the B stands for bone involvement. So a positive finding in a biopsy of a lesion would give a positive diagnosis of myeloma.
It wouldn't hurt to get a second opinion from a myeloma specialist. You are being seen at a really good center for myeloma. One of the specialists there, Dr. Jagannath, is well known in the myeloma field. If you want to go out of the Mt. Sinai system, Memorial Sloan Kettering and Columbia both have good myeloma teams, too.
Because you are so young, it might be worth looking into the allogeneic transplant possibilities if you should be diagnosed with active myeloma. It is being used more often for people who have been diagnosed at a young age. There are a number of young people, in their 30's, who post on this forum. Hopefully, some of them will respond to some of your posts.
All the best to you and your family while you begin this journey,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
Hi Paul
I have to concur with what NSTEWART recommended. My husband was diagnosed this past July / August with multiple myeloma. We are seeing Dr. Jagannath at Mt. Sinai now after his original oncologist referred us to him. So far, we are happy with our experience with Dr. Jagganath as well as Mt. Sinai hospital.
I have to concur with what NSTEWART recommended. My husband was diagnosed this past July / August with multiple myeloma. We are seeing Dr. Jagannath at Mt. Sinai now after his original oncologist referred us to him. So far, we are happy with our experience with Dr. Jagganath as well as Mt. Sinai hospital.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
First and foremost, I hope those of you reading this are doing well.
Quite a bit of time has passed since I last posted, so I'd like to update y'all:
I recently finished my 4th and final cycle of induction therapy - a steady stream of RVD. Save for the intermittent bouts of fatigue, I was able to go about my life in relatively normal fashion. All of which is to say it was unremarkable, for which I am thankful.
Prior to induction therapy, my M-spike was at 2.4, and it's now at a very humble .68. However, it's worth noting that I plateaued midway through the third cycle, and even crept up ever-so-slightly recently.
Here's a look at my last three labs:
- 4/26: M-Spike: .66
- 5/6: M-Spike .65
- 5/16: M-Spike .68
I was told by the specialist that the slight raise/variation is of no significance. That helps give me peace of mind. On another note, I'm happy to report that the mainstay throughout all of this has been my labs - they were healthy before treatment and have remained such during treatment.
The next step is to repeat the PET-Scan and bone marrow biopsy, and in the very near future, begin prepping for an autologous transplant or allogeneic transplant. I've been told by my previous oncologist, who is now retired but still accessible, that given my age and general health, an allogeneic transplant -- the proverbial home-run ball -- would be best. I've yet to decide that much.
Right now, I'm firmly entrenched in the here and now, and that's what gets me by. Well, that, reading, and above all, my three-year-old son, Emerson.
Thank you all for stopping by. Here's to sustained remission.
Quite a bit of time has passed since I last posted, so I'd like to update y'all:
I recently finished my 4th and final cycle of induction therapy - a steady stream of RVD. Save for the intermittent bouts of fatigue, I was able to go about my life in relatively normal fashion. All of which is to say it was unremarkable, for which I am thankful.
Prior to induction therapy, my M-spike was at 2.4, and it's now at a very humble .68. However, it's worth noting that I plateaued midway through the third cycle, and even crept up ever-so-slightly recently.
Here's a look at my last three labs:
- 4/26: M-Spike: .66
- 5/6: M-Spike .65
- 5/16: M-Spike .68
I was told by the specialist that the slight raise/variation is of no significance. That helps give me peace of mind. On another note, I'm happy to report that the mainstay throughout all of this has been my labs - they were healthy before treatment and have remained such during treatment.
The next step is to repeat the PET-Scan and bone marrow biopsy, and in the very near future, begin prepping for an autologous transplant or allogeneic transplant. I've been told by my previous oncologist, who is now retired but still accessible, that given my age and general health, an allogeneic transplant -- the proverbial home-run ball -- would be best. I've yet to decide that much.
Right now, I'm firmly entrenched in the here and now, and that's what gets me by. Well, that, reading, and above all, my three-year-old son, Emerson.
Thank you all for stopping by. Here's to sustained remission.
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dustydenimdad - Name: Paul Garcia
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2010
- Age at diagnosis: 24
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
Paul-
Thank you for the update on your treatment and progress since you last posted. It sounds like you are doing ok. I had an m-spike of 0.5 g/dl before I had my ASCT 5 years ago. It was at the same level post transplant for about 7 months when it dropped to 0.0 and stayed that way for almost 3 years without maintenance medication. I relapsed and was put on my induction treatment of Revlimid and Dex for the last 2/12 years. Within 2 months of restarting treatment my m-spike dropped from 3 something to 0.6, where I remain to this day.
There are so many good treatments available to us these days with more coming along. I know that you have a really difficult decision to make about whether to do and ASCT or an Allo transplant. Neither of them is an easy treatment, but they can be very successful.
I send you all of the strength to make the decision that works the best for you and your family. You will do what you feel in your heart and soul is right for all of you. Once your decision is made don't look back and second guess yourself. Continue to do your research and talk with young people who have followed both paths. This may also be a good time to consult other myeloma specialists outside of where you are being treated just to get their opinions about auto vs allo for you.
Nancy in Phila
Thank you for the update on your treatment and progress since you last posted. It sounds like you are doing ok. I had an m-spike of 0.5 g/dl before I had my ASCT 5 years ago. It was at the same level post transplant for about 7 months when it dropped to 0.0 and stayed that way for almost 3 years without maintenance medication. I relapsed and was put on my induction treatment of Revlimid and Dex for the last 2/12 years. Within 2 months of restarting treatment my m-spike dropped from 3 something to 0.6, where I remain to this day.
There are so many good treatments available to us these days with more coming along. I know that you have a really difficult decision to make about whether to do and ASCT or an Allo transplant. Neither of them is an easy treatment, but they can be very successful.
I send you all of the strength to make the decision that works the best for you and your family. You will do what you feel in your heart and soul is right for all of you. Once your decision is made don't look back and second guess yourself. Continue to do your research and talk with young people who have followed both paths. This may also be a good time to consult other myeloma specialists outside of where you are being treated just to get their opinions about auto vs allo for you.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Diagnosed with a SBP at 24, multiple myeloma at 28
Hey, sorry to read about your diagnosis! It must be still overwhelming for you. I was diagnosed with advanced myeloma when I was 32. In my case, I was sick for a few years, going from doctor to doctor, but the eventual myeloma diagnosis was not on anyone's radar (mostly due to my age, and being a female with no risk factors). So it was a shock to most around me, including my doctors, I think. In my case, the myeloma was there loud and clear, just no one looking for it (like I mentioned, advanced stage).
My doctor did not recommend an allo transplant. She said if it was 5 years earlier, for sure she would have, but things have changed a lot in myeloma treatment. I did do auto transplant and have been off meds 5 years. My numbers only recently have started to rise. So far, watchful waiting, but I will likely do a second auto transplant in the future.
I would recommend getting a few opinions before agreeing to an allo. It sounds like your myeloma is still early stage and there is not much damage, so it seems a bit quick to jump into such a heavy option. (Allo is still not considered curative for myeloma.)
My doctor tells me she plans to keep me around for a long time. Don't get hung up on statistics, or google articles – so outdated!
My doctor did not recommend an allo transplant. She said if it was 5 years earlier, for sure she would have, but things have changed a lot in myeloma treatment. I did do auto transplant and have been off meds 5 years. My numbers only recently have started to rise. So far, watchful waiting, but I will likely do a second auto transplant in the future.
I would recommend getting a few opinions before agreeing to an allo. It sounds like your myeloma is still early stage and there is not much damage, so it seems a bit quick to jump into such a heavy option. (Allo is still not considered curative for myeloma.)
My doctor tells me she plans to keep me around for a long time. Don't get hung up on statistics, or google articles – so outdated!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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