My name is Cathy, and I was diagnosed with high-risk smoldering multiple myeloma within the last two weeks. My journey started in September 2015, a few days before my 56th birthday, when I suffered a minor fibula (lower leg) fracture when I lost my balance and fell at an outdoor wedding. I already had been diagnosed with osteopenia (not osteoporosis). At my annual physical in November, my very thorough doctor wanted to run tests "just to be sure" as this was considered a "low trauma fracture." I had an M-spike.
I was referred to a hematologist with a diagnosis of probable MGUS, IgG lambda. The hematologist I chose was at a different hospital. At my initial visit on January 12, 2016, he wanted to repeat the SPEP and check my immunoglobulin levels and skeletal survey, but he said if the numbers were similar to the ones done two months before, he wouldn't even recommend a bone marrow biopsy at that point and would see me in 4 months with labs. Three days later, he called me and said the M-protein was a little higher (1.3 g/dL), and "just to be on the safe side" he recommended a bone marrow biopsy to be sure I didn't have smoldering multiple myeloma.
Four days later, I had my bone marrow biopsy – 6% plasma cells on aspirate, but 20-30% on core biopsy. A week after my bone marrow biopsy, I had an MRI of the spine and pelvis, "just to be sure" it wasn't active myeloma. Of course, since every test thus far had been abnormal, I was convinced my MRI would also be abnormal, but thankfully it wasn't. Because my free light chain ratio is low (0.11), I am in the high-risk smoldering multiple myeloma category.
This alone would have been stressful enough, but the day before my MRI, my 94 year old mother broke her hip, and we have chosen to place her in hospice care to manage her symptoms as surgery would not enable her to walk again in her frail condition. She's doing amazingly well right now and is back at her assisted living / memory care facility (she has Alzheimer's). But navigating her hospitalization and discharge while trying to schedule tests and follow up and then agonizing over what the results would be nearly did me in last week.
I plan to enter a clinical trial of lenalidomide (Revlimid) vs. observation (open label). They have to repeat most of my labs before I can enter because they were more than 4 weeks ago, but I should know in about 10 days whether I still qualify and then whether I will be in the treatment group or observation group.
I am a physician myself (ENT). I am fortunate that the hospital where I currently work has a great academic hematologist doing research and I can get to both the lab and his clinic from my office without even walking outside. I am also fortunate that if I progress, there is a major referral center with the #1 cancer center in our state (and highly ranked nationwide) less than 10 minutes from my home. I used to practice there and asked one of my former colleagues to review my labs, so I saved myself getting a formal second opinion for now.
I have learned a lot about multiple myeloma, smoldering multiple myeloma, and MGUS in the last few weeks; what little I remembered from medical school was pretty out of date, so I have been reading a lot. But one thing I can't read about and can only learn by experience is what it's like to be a patient with a serious medical condition. I'm learning fast. I'm glad to have found this community.
Forums
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Joining the Smoldering Multiple Myeloma Club
Hi Cathyann:
Welcome to the forum. As you said, I hope the progression is very very very slow. Just one or two quick comments.
I don't recall the exact definition of high risk smoldering (and I cannot quickly find it, and I think other posters might be on top of their search skills). I think that the free light chain level in smoldering is an older definition. There was a new definition updated about a year ago, that focused mostly on the cytogenetics (FISH test) and myeloma defining events. I would focus in on your FISH test results. The best researchers in the world do not entirely understand the cytogenetics at this time, however, there are specific cytogenetic abnormalities that could be identified that have identified approaches to deal with them.
Treating MGUS or smoldering is rather a new approach that is just under clinical trials right now for the first time, however, look at the possibility of one of the monoclonal antibodies (elotuzumab or daratumumab). They are reported to have near term infusion related side effects. However, the side effects are transitory, and are not now thought to be long term, as opposed to many of the novel agents, that might have longer term impacts.
Good luck to you.
Welcome to the forum. As you said, I hope the progression is very very very slow. Just one or two quick comments.
I don't recall the exact definition of high risk smoldering (and I cannot quickly find it, and I think other posters might be on top of their search skills). I think that the free light chain level in smoldering is an older definition. There was a new definition updated about a year ago, that focused mostly on the cytogenetics (FISH test) and myeloma defining events. I would focus in on your FISH test results. The best researchers in the world do not entirely understand the cytogenetics at this time, however, there are specific cytogenetic abnormalities that could be identified that have identified approaches to deal with them.
Treating MGUS or smoldering is rather a new approach that is just under clinical trials right now for the first time, however, look at the possibility of one of the monoclonal antibodies (elotuzumab or daratumumab). They are reported to have near term infusion related side effects. However, the side effects are transitory, and are not now thought to be long term, as opposed to many of the novel agents, that might have longer term impacts.
Good luck to you.
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JPC - Name: JPC
Re: Joining the Smoldering Multiple Myeloma Club
Hi Cathyann,
Let me also welcome you to the forum. I'm sorry that you have to join us, but I think you'll find this to be a helpful and very well informed community.
As you probably have picked up through your reading, there is no official definition of "high risk" smoldering multiple myeloma. There formerly were two competing classifications, one from the Mayo Clinic, and one from the Spanish myeloma group, but those classifications are now a bit out of date because of the change in the diagnostic criteria for smoldering and symptomatic multiple myeloma that took place about two years ago. The new diagnostic criteria are summarized in this article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
There was a review article put out last year by several leading smoldering multiple myeloma researchers that summarized criteria which they currently use to classify "smolderers" as high risk, or not. The review was discussed here in the forum in this thread:
"Review article - smoldering multiple myeloma" (May 27, 2015)
As you'll see, the approach the authors recommend -- summarized in their Table 2 -- involves looking at a number of different factors, of which chromosomal abnormalities are just one.
It's great that you've decided to participate in a clinical trial. Myeloma researchers have been interested in the possibility of treating smoldering myeloma, rather than waiting until possible disease progression, since at least the 1990s. For example, a trial to test thalidomide in smoldering myeloma was started in 1998. The Spanish myeloma group also started a trial in the mid 2000s testing Revlimid and dexamethasone in high risk smoldering myeloma patients. They found that Revlimid not only delayed progression, but also improved overall survival. See:
"Revlimid Plus Dexamethasone Delays Progression And Extends Survival In High-Risk Smoldering Myeloma," The Myeloma Beacon, Aug 2, 2013
Whether or not early treatment truly improves overall survival, and potentially cures some patients, is really the key question. Subjecting smoldering myeloma patients to treatment, with all its side effects, is more difficult to justify if the treatment only delays progression but has no effect on overall survival.
Again, welcome to the forum. Don't hesitate to ask any questions you think we may be able to answer.
Let me also welcome you to the forum. I'm sorry that you have to join us, but I think you'll find this to be a helpful and very well informed community.
As you probably have picked up through your reading, there is no official definition of "high risk" smoldering multiple myeloma. There formerly were two competing classifications, one from the Mayo Clinic, and one from the Spanish myeloma group, but those classifications are now a bit out of date because of the change in the diagnostic criteria for smoldering and symptomatic multiple myeloma that took place about two years ago. The new diagnostic criteria are summarized in this article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
There was a review article put out last year by several leading smoldering multiple myeloma researchers that summarized criteria which they currently use to classify "smolderers" as high risk, or not. The review was discussed here in the forum in this thread:
"Review article - smoldering multiple myeloma" (May 27, 2015)
As you'll see, the approach the authors recommend -- summarized in their Table 2 -- involves looking at a number of different factors, of which chromosomal abnormalities are just one.
It's great that you've decided to participate in a clinical trial. Myeloma researchers have been interested in the possibility of treating smoldering myeloma, rather than waiting until possible disease progression, since at least the 1990s. For example, a trial to test thalidomide in smoldering myeloma was started in 1998. The Spanish myeloma group also started a trial in the mid 2000s testing Revlimid and dexamethasone in high risk smoldering myeloma patients. They found that Revlimid not only delayed progression, but also improved overall survival. See:
"Revlimid Plus Dexamethasone Delays Progression And Extends Survival In High-Risk Smoldering Myeloma," The Myeloma Beacon, Aug 2, 2013
Whether or not early treatment truly improves overall survival, and potentially cures some patients, is really the key question. Subjecting smoldering myeloma patients to treatment, with all its side effects, is more difficult to justify if the treatment only delays progression but has no effect on overall survival.
Again, welcome to the forum. Don't hesitate to ask any questions you think we may be able to answer.
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JimNY
Re: Joining the Smoldering Multiple Myeloma Club
Sorry you're joining us here, CathyAnn, but I'm glad you found us. Welcome!
Re: Joining the Smoldering Multiple Myeloma Club
Thanks for the input, everybody. I realize there are varying definitions, but we are using the definition for the clinical trial if I wish to participate. The study started in 2010 and they can't change the definition in the middle of the study. . Their definition is both:
As a practical matter, this is the only study in my area and I can't take the time to travel elsewhere, and if I'm not in a study, I would be under observation only. So I think I'm where I need to be now. Of course, now I'm going to worry that something will come up on the new labs to disqualify me.
If you're interested, here's the link to the study on clinicaltrials.gov:
https://clinicaltrials.gov/ct2/show/NCT01169337
- Bone marrow plasmacytosis with >= 10% plasma cells or sheets of plasma cells at any time before initiating study treatment (I'm 20-30%)
- Abnormal serum free light chain ratio (< 0.26 or > 1.65) by serum free light chain (FLC) assay (I'm 0.11)
As a practical matter, this is the only study in my area and I can't take the time to travel elsewhere, and if I'm not in a study, I would be under observation only. So I think I'm where I need to be now. Of course, now I'm going to worry that something will come up on the new labs to disqualify me.
If you're interested, here's the link to the study on clinicaltrials.gov:
https://clinicaltrials.gov/ct2/show/NCT01169337
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Joining the Smoldering Multiple Myeloma Club
CathyAnn,
I'm a physician too! There is definitely something special about being a doctor with cancer. There's no filter between bad news and your brain. All that professional knowledge becomes personal in one crystallized moment. It comes crashing down on you, and the weight is very heavy.
I'm in EM, and I was practicing in a small community hospital until myeloma put me on disability.
My story: In 2012 I was diagnosed with AL amyloidosis. I had horrible nephrotic syndrome - that was the presenting symptom. I'll never forget the day I learned I had an M-spike. I hyperventilated all the way home in the car. Eventually, I went to Boston Medical Center, and had an auto stem cell transplant. Did well, went back to work eventually.
Then in summer of 2014, I developed reproducible, focal, vertebral tenderness. Bad. I knew it was going to be bad, especially with my history. A million tests later, I discovered I have multiple myeloma with bone lesions all over the place.
I started with bortezomib (Velcade) / lenalidomide (Revlimid) / dex, but relapsed after four months. Then I took carfilzomib (Krypolis) / Revlimid / dex. That gave me diastolic dysfunction and pulmonary hypertension, which is reversible thankfully. So then I took pomalidomide (Pomalyst) / cyclophosphamide (Cytoxan) and dex. I just finished six months of that, and did very well. Now I'm having complete restaging to see if I can move to maintenance therapy. I just had my bone marrow biopsy the other day.
Here's the weird thing: my Dad also has AL amyloidosis even though it's not thought to be hereditary. Also, my amyloid was lambda subtype, but my myeloma is kappa subtype. My plasma cells are totally messed up!
Here's my theory: My plasma cell disease was biclonal to start with, and we selected for myeloma-producing kappa subtype with my auto stem cell transplant. So following that logic, repeating an auto stem cell transplant wouldn't be helpful. My onc team at Dana Farber agrees, though we keep auto stem cell treatment in our back pocket as a delay tactic.
So I decided to pursue an allo transplant, given my age (42 at diagnosis) and general health status. That was hands down, the most difficult decision of my life. The risk/ benefit calculation is veeeeery slim. But I don't have a match!!!! It's been over a year now, and I still don't have a match. So I take chemo and wait. The chemo makes me too immunosuppressed to go back to work in an environment like the ED. But I'm working on other productive options that are flexible enough to be molded around myeloma, like EMS medical direction, telemedicine, and file review.
Oh, I saw that you are in Cleveland. I'm from Ohio - Chillicothe, down south of Columbus. I did residency at Ohio State.
Oh, and I'm a knitter too!
Anyway, that's my story. I'd love to hear your story. And I'm always here to vent or commiserate. It's a lot more fun on the listening side of the stethoscope!
Tracy
I'm a physician too! There is definitely something special about being a doctor with cancer. There's no filter between bad news and your brain. All that professional knowledge becomes personal in one crystallized moment. It comes crashing down on you, and the weight is very heavy.
I'm in EM, and I was practicing in a small community hospital until myeloma put me on disability.
My story: In 2012 I was diagnosed with AL amyloidosis. I had horrible nephrotic syndrome - that was the presenting symptom. I'll never forget the day I learned I had an M-spike. I hyperventilated all the way home in the car. Eventually, I went to Boston Medical Center, and had an auto stem cell transplant. Did well, went back to work eventually.
Then in summer of 2014, I developed reproducible, focal, vertebral tenderness. Bad. I knew it was going to be bad, especially with my history. A million tests later, I discovered I have multiple myeloma with bone lesions all over the place.
I started with bortezomib (Velcade) / lenalidomide (Revlimid) / dex, but relapsed after four months. Then I took carfilzomib (Krypolis) / Revlimid / dex. That gave me diastolic dysfunction and pulmonary hypertension, which is reversible thankfully. So then I took pomalidomide (Pomalyst) / cyclophosphamide (Cytoxan) and dex. I just finished six months of that, and did very well. Now I'm having complete restaging to see if I can move to maintenance therapy. I just had my bone marrow biopsy the other day.
Here's the weird thing: my Dad also has AL amyloidosis even though it's not thought to be hereditary. Also, my amyloid was lambda subtype, but my myeloma is kappa subtype. My plasma cells are totally messed up!
Here's my theory: My plasma cell disease was biclonal to start with, and we selected for myeloma-producing kappa subtype with my auto stem cell transplant. So following that logic, repeating an auto stem cell transplant wouldn't be helpful. My onc team at Dana Farber agrees, though we keep auto stem cell treatment in our back pocket as a delay tactic.
So I decided to pursue an allo transplant, given my age (42 at diagnosis) and general health status. That was hands down, the most difficult decision of my life. The risk/ benefit calculation is veeeeery slim. But I don't have a match!!!! It's been over a year now, and I still don't have a match. So I take chemo and wait. The chemo makes me too immunosuppressed to go back to work in an environment like the ED. But I'm working on other productive options that are flexible enough to be molded around myeloma, like EMS medical direction, telemedicine, and file review.
Oh, I saw that you are in Cleveland. I'm from Ohio - Chillicothe, down south of Columbus. I did residency at Ohio State.
Oh, and I'm a knitter too!
Anyway, that's my story. I'd love to hear your story. And I'm always here to vent or commiserate. It's a lot more fun on the listening side of the stethoscope!
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Joining the Smoldering Multiple Myeloma Club
Hi, Tracy!
It certainly does add another dimension to be a physician with myeloma (I've already dropped the "smoldering" when I talk about it, just for simplicity's sake). Every test result I am scouring references to see what they mean. I have to keep reminding myself that my immediate prognosis is good, and the long-term prognosis may not be bad for years to come. But it's such a shock. I thought I was pretty empathetic to begin with, but I understand so much better now how anxious people can be waiting for test results. I wasn't an anxious person to begin with, and I was out of my mind waiting. Right now I'm waiting for my repeat labs to be sure I'm eligible for the lenalidomide vs. observation trial and I keep thinking, what if my numbers have jumped? I'm almost amused sometimes at how irrational I can be about it.
One of the things I'm struggling with is how much I want to tell people. For a lay person, saying I have a blood disorder that has to be monitored, but that I'm feeling fine right now, is enough of an answer. But for medical professionals, they're going to ask "what blood disorder?" So I feel like I have to tell them everything or nothing. Since I'm not symptomatic, and if I'm in the treatment arm of the trial, I'll just be getting oral medication. So I suppose I could keep quiet if I want. But I'm a pretty open person and I am not good at lying or even just being vague. How did you handle this? I suppose it was totally different because you were having symptoms and then the treatment was a big deal. I'd appreciate your thoughts, though.
I hope you continue to manage with chemo until you can find a match. Which reminds me, I signed up for the donor registry when I was in medical school in the 1980s. I should probably let them know I'm no longer eligible.
Hugs,
Cathy
It certainly does add another dimension to be a physician with myeloma (I've already dropped the "smoldering" when I talk about it, just for simplicity's sake). Every test result I am scouring references to see what they mean. I have to keep reminding myself that my immediate prognosis is good, and the long-term prognosis may not be bad for years to come. But it's such a shock. I thought I was pretty empathetic to begin with, but I understand so much better now how anxious people can be waiting for test results. I wasn't an anxious person to begin with, and I was out of my mind waiting. Right now I'm waiting for my repeat labs to be sure I'm eligible for the lenalidomide vs. observation trial and I keep thinking, what if my numbers have jumped? I'm almost amused sometimes at how irrational I can be about it.
One of the things I'm struggling with is how much I want to tell people. For a lay person, saying I have a blood disorder that has to be monitored, but that I'm feeling fine right now, is enough of an answer. But for medical professionals, they're going to ask "what blood disorder?" So I feel like I have to tell them everything or nothing. Since I'm not symptomatic, and if I'm in the treatment arm of the trial, I'll just be getting oral medication. So I suppose I could keep quiet if I want. But I'm a pretty open person and I am not good at lying or even just being vague. How did you handle this? I suppose it was totally different because you were having symptoms and then the treatment was a big deal. I'd appreciate your thoughts, though.
I hope you continue to manage with chemo until you can find a match. Which reminds me, I signed up for the donor registry when I was in medical school in the 1980s. I should probably let them know I'm no longer eligible.
Hugs,
Cathy
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Joining the Smoldering Multiple Myeloma Club
Hi Cathy,
I hate to step into the middle of the wonderful discussion you and Tracy are having. You both have so much valuable to say. However, I just wanted to mention two discussions that have taken place in the forum in the past on the topic of "coming out" about one's diagnosis. You may find the discussions helpful:
"Did you struggle with 'coming out' about your diagnosis?" (started June 1, 2015)
"'Coming out' at work" (started Feb 24, 2014)
Take care,
Cheryl
I hate to step into the middle of the wonderful discussion you and Tracy are having. You both have so much valuable to say. However, I just wanted to mention two discussions that have taken place in the forum in the past on the topic of "coming out" about one's diagnosis. You may find the discussions helpful:
"Did you struggle with 'coming out' about your diagnosis?" (started June 1, 2015)
"'Coming out' at work" (started Feb 24, 2014)
Take care,
Cheryl
Re: Joining the Smoldering Multiple Myeloma Club
Cheryl, thank you so much for those links. It's pretty clear there is no one "right" way to do it. I'm a pretty open person. Most of the people I encounter on a daily basis are medical people. I think I will probably tell them in however much detail they want to know, as well as all the people close to me. I'm the sort of person that could use the support, and I have no concerns about whether the diagnosis would be used against me at work or anywhere else. For everyone else, I think I can stick with "a blood disorder that has to be watched closely" or "a blood disorder and I'm taking medication to keep it in check" and most people will be fine with that.
I had all my repeat tests this week and I do qualify for the clinical trial officially. I will find out tomorrow or the next day whether I am randomized to treatment or observation. Once I know that, I'll have a better idea what I want to tell people.
I had all my repeat tests this week and I do qualify for the clinical trial officially. I will find out tomorrow or the next day whether I am randomized to treatment or observation. Once I know that, I'll have a better idea what I want to tell people.
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Joining the Smoldering Multiple Myeloma Club
Update: I found out today that I've been randomized to the observation arm of the study. So now I only have to worry about progression and not about Revlimid side effects. I'm good with it. I have none of the genetic markers that are high risk for progression (I'm "standard risk"). So now the watching and waiting begins. I'm not good at that, but I guess it's a skill I can learn ... 
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
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