I’m writing this on behalf of a patient diagnosed with multiple myeloma 5 years back. The treatment went well and post 1 year of chemo and radiation he was back to normal.
Lately he is feeling a lot of weakness and stiffness in body and has also lost a lot of weight, though his reports are all normal. I was still curious, though, to find out if these are the signs of his disease getting active?
Forums
Re: Myeloma relapse signs?
Hello, I have just been told I am out of remission 
I was originally diagnosed New Years Eve 2009, did 6 months of Revlimid paired with high dose dexamethasone in early 2010. Then IV Cytoxan, plus Neupogen shots before auto stem cell harvest. Reached full remission summer 2010 with high dose IV melphalan and an auto stem transplant (SCT), and was then on low dose maintenance Revlimid for a year and a half following above.
Now, one year to the month later, I have come out of remission I will find out my next treatment steps this month.
My only symptoms this time were lessening energy, fatigue, a little loss of appetite (but not significant weight loss), and headaches.
Best of luck to you in your treatment plan.
I was originally diagnosed New Years Eve 2009, did 6 months of Revlimid paired with high dose dexamethasone in early 2010. Then IV Cytoxan, plus Neupogen shots before auto stem cell harvest. Reached full remission summer 2010 with high dose IV melphalan and an auto stem transplant (SCT), and was then on low dose maintenance Revlimid for a year and a half following above.
Now, one year to the month later, I have come out of remission
I will find out my next treatment steps this month.My only symptoms this time were lessening energy, fatigue, a little loss of appetite (but not significant weight loss), and headaches.
Best of luck to you in your treatment plan.
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Julie MM - Name: Julie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 30, 2009
- Age at diagnosis: 50
Re: Myeloma relapse signs?
JulieViz and khanna,
By what means did you find out you were out of remission? Did you suddenly have high levels of detectable disease on you labs?
I had Velcade and dex for induction therapy, followed by a stem cell transplant, then Revlimid maintenance since February 2012. I attained complete remission shortly after the SCT.
In my labs last month I had a positive immunofixation for myeloma protein and was told I was no longer in complete remission. But this test is really sensitive and can’t even quantify the level of disease, just that there is some myeloma protein present in the blood. The level of my disease is below the threshold of detection on the serum protein electrophoresis. I have no M-spike and there are lots of people with MGUS or smoldering myeloma who do have M-spikes but feel no different than they did before.
During the time period I came out of complete remission this summer, I hiked 18 miles round trip to the top of Half Dome in Yosemite and have been doing lots of cycling. I do get tired at times, have periods of low energy, and get sick easily because of low WBC, but I attribute all this to Revlimid, not myeloma at the levels I have. I believe if I am not feeling well it is because of the drugs at this point not myeloma.
During the period when I was in complete remission, every time I was not feeling that great I did worry that it was a sign the disease is coming back. But labs indicated it was just the side effects of Revlimid or I was simply getting another bug again.
Now that my labs indicate the first signs of myeloma gaining strength, I am still going to be worried that every time that I am not feeling that well that my next set of labs are going to show a strong M-spike. I suspect, though, I probably will not even notice much change in how I feel because of the myeloma disease until the disease levels get significantly higher, but I am not certain of this.
By what means did you find out you were out of remission? Did you suddenly have high levels of detectable disease on you labs?
I had Velcade and dex for induction therapy, followed by a stem cell transplant, then Revlimid maintenance since February 2012. I attained complete remission shortly after the SCT.
In my labs last month I had a positive immunofixation for myeloma protein and was told I was no longer in complete remission. But this test is really sensitive and can’t even quantify the level of disease, just that there is some myeloma protein present in the blood. The level of my disease is below the threshold of detection on the serum protein electrophoresis. I have no M-spike and there are lots of people with MGUS or smoldering myeloma who do have M-spikes but feel no different than they did before.
During the time period I came out of complete remission this summer, I hiked 18 miles round trip to the top of Half Dome in Yosemite and have been doing lots of cycling. I do get tired at times, have periods of low energy, and get sick easily because of low WBC, but I attribute all this to Revlimid, not myeloma at the levels I have. I believe if I am not feeling well it is because of the drugs at this point not myeloma.
During the period when I was in complete remission, every time I was not feeling that great I did worry that it was a sign the disease is coming back. But labs indicated it was just the side effects of Revlimid or I was simply getting another bug again.
Now that my labs indicate the first signs of myeloma gaining strength, I am still going to be worried that every time that I am not feeling that well that my next set of labs are going to show a strong M-spike. I suspect, though, I probably will not even notice much change in how I feel because of the myeloma disease until the disease levels get significantly higher, but I am not certain of this.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Myeloma relapse signs?
For my dad, it was persistent small reduction in platelets, rbs and ANCs.
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Phoebe - Who do you know with myeloma?: dad
- Age at diagnosis: 62
Re: Myeloma relapse signs?
I suspect my myeloma might be returning because I have a 24 hour urine and blood drawn every 3 months. My lambda is rising and my ratio is dropping. This was most noticeable in my last visit, but I haven't talked to the doctor about it and I don't have a clue what the timeline is, or if it's possible to have spikes in the results.
To answer your question with what I know, I don't see how anything can be assumed without a serum and urine observation.
To answer your question with what I know, I don't see how anything can be assumed without a serum and urine observation.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Myeloma relapse signs?
Eric brings up a good point. What is remission? If a person who was diagnosed the multiple myeloma has a VGPR but not a CR and holds that level for a long period of time, are they in remission?
I am not an expert but it seems to me that since multiple myeloma is not curable but can be controlled, that controll of the disease at a low stable level where a person has a HQL would equate to remission. Thus a CR may not be the measuring stick but instead stability may be more important.
I know with other cancers remission generally equals no detectible sign of the disease. Howerver, even a CR in multiple myeloma does not mean not mean there is no residual disease. Thus what is remission may vary by individual.
I would think that once the disease becomes active again and progresses that the remissive state is broken no matter what level it was previously confined to.
Ron
I am not an expert but it seems to me that since multiple myeloma is not curable but can be controlled, that controll of the disease at a low stable level where a person has a HQL would equate to remission. Thus a CR may not be the measuring stick but instead stability may be more important.
I know with other cancers remission generally equals no detectible sign of the disease. Howerver, even a CR in multiple myeloma does not mean not mean there is no residual disease. Thus what is remission may vary by individual.
I would think that once the disease becomes active again and progresses that the remissive state is broken no matter what level it was previously confined to.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Myeloma relapse signs?
I was 35 when I was first diagnosed with multiple myeloma in 2003. I was treated with radiation and with Revlimid and dexamethasone as well.
In 2005, I was diagnosed with thyroid cancer. I had it removed, did radiation, and radioactive radiation. All was well.
In 2008, I started losing weight and had no energy. I went from being a size 16 to a size 4 in a matter of months. The cancer was back in my l2 and s2.
In 2009 I had an autologous SCT. I was put on Revlimid and dexamethasone for a year.
I have been okay except for the severe leg cramps. I still have fatigue. My doctor will not say I am in remission. Today, I am on a low dose of Revlimid as a maintenance and have been getting good reports. Just taking it day by day.
God Bless all of you out there and the loving caregivers.
In 2005, I was diagnosed with thyroid cancer. I had it removed, did radiation, and radioactive radiation. All was well.
In 2008, I started losing weight and had no energy. I went from being a size 16 to a size 4 in a matter of months. The cancer was back in my l2 and s2.
In 2009 I had an autologous SCT. I was put on Revlimid and dexamethasone for a year.
I have been okay except for the severe leg cramps. I still have fatigue. My doctor will not say I am in remission. Today, I am on a low dose of Revlimid as a maintenance and have been getting good reports. Just taking it day by day.
God Bless all of you out there and the loving caregivers.
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Joanne V.
Re: Myeloma relapse signs?
I'm curious as well. Been in remission for 4 years. Every ache and pain worries me. I don't follow blood test results. I stopped keeping track years ago. All I know is how shocked I was with the diagnosis. After all, I had been treated for ulcers for 2 years previous. Talk about a misdiagnosis!
Anyway, I will be watching the answers here, blood work mumbo-jumbo aside. What physical symptoms are signs?
Babs
Anyway, I will be watching the answers here, blood work mumbo-jumbo aside. What physical symptoms are signs?
Babs
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Babs
Re: Myeloma relapse signs?
Based on what I know (depending on the type of multiple myeloma you have), rising IgG, IgA, kappa lambda light chain ratio going out of spec, and light chains in the urine are signs of a possible relapse or becoming refractory to treatment.
Hope this helps.
Hope this helps.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Myeloma relapse signs?
After being diagnosed in July 2000, I wore a chemo pump for a few months, but it'd didn't plateau my multiple myeloma as my specialist hoped.
In 2001 I began apheresis and 1.5 million stem cells were collected. In February 2003, I underwent a stem cell transplant and that gave me 5 years of steady figures.
But in late 2008 the beast began coming back. In January 2009 my specialist managed to persuade Celgene to give me Revlimid on compassionate grounds. Just over 4 years later, I'm still on Revlimid and dexamethasone. So, after 13 years, I'm living a pretty good life (at 75) being on two committees, one where we live in an Over 50s Resort, and the other our local Probus Club.
I can't wish for much more than that. I've had a marvelous run and hope to continue in that way
Ken Guy, Maleny, Queensland, Australia
In 2001 I began apheresis and 1.5 million stem cells were collected. In February 2003, I underwent a stem cell transplant and that gave me 5 years of steady figures.
But in late 2008 the beast began coming back. In January 2009 my specialist managed to persuade Celgene to give me Revlimid on compassionate grounds. Just over 4 years later, I'm still on Revlimid and dexamethasone. So, after 13 years, I'm living a pretty good life (at 75) being on two committees, one where we live in an Over 50s Resort, and the other our local Probus Club.
I can't wish for much more than that. I've had a marvelous run and hope to continue in that way
Ken Guy, Maleny, Queensland, Australia
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Ken G
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