Happy New Year to everyone.
I am about 83 days post transplant and experiencing shoulder and arm pain. Saw transplant doc a couple of days ago. Have not gotten blood results yet. Doc said it was possible that it is myeloma, but only way to be sure is to have scan (PET/CT), which I am due for on my 100-day checkup. My regular onc says not to worry – shoulder pain can have lots of non-myeloma causes.
So far my bloods have been good every 2 weeks since transplant. Prior to transplant had clean PET/CT and bone marrow biopsy (BMB).
I am light chain kappa so never had much of an M-spike. Responded well to RVD.
I guess what I am really asking is if it is possible to relapse so soon after transplant.
Did not have much bone involvement at diagnosis. No fractures no tumors. But did have pain.
Anyone relapse so soon and, if so, what course was taken?
I am beside myself, not handling this well, but want to be prepared if at all possible.
Forums
Re: Anyone relapse soon after their transplant?
Hi Ellen,
Sorry you are experiencing shoulder and arm pain. I hope that your recovery from the SCT has been going well other than that.
The short answer is yes, it is possible to relapse soon after an SCT. I guess more technically they would say that one's disease was refractory to the SCT treatment in this kind of case. That is, that the SCT treatment did not help.
But ... I have had shoulder and elbow pain off and on following my SCT, yet all of my post-SCT imaging tests have looked clean, and I am even MRD negative. So whatever was going on with my shoulder and elbow was something unrelated to the multiple myeloma. For the past couple of months, both my shoulder and elbow have been feeling fine. So I guess whatever was going on in there has resolved. I'm expecting that when baseball spring training starts in 6 weeks, I'll be able to throw my fastball at close to 100 MPH. Ha! Don't I wish!
Bottom line - have a Happy New Year and don't worry!
Mike
Sorry you are experiencing shoulder and arm pain. I hope that your recovery from the SCT has been going well other than that.
The short answer is yes, it is possible to relapse soon after an SCT. I guess more technically they would say that one's disease was refractory to the SCT treatment in this kind of case. That is, that the SCT treatment did not help.
But ... I have had shoulder and elbow pain off and on following my SCT, yet all of my post-SCT imaging tests have looked clean, and I am even MRD negative. So whatever was going on with my shoulder and elbow was something unrelated to the multiple myeloma. For the past couple of months, both my shoulder and elbow have been feeling fine. So I guess whatever was going on in there has resolved. I'm expecting that when baseball spring training starts in 6 weeks, I'll be able to throw my fastball at close to 100 MPH. Ha! Don't I wish!
Bottom line - have a Happy New Year and don't worry!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Anyone relapse soon after their transplant?
Thanks mikeb! I know we are far from free of aches and pains. If I didn't have myeloma, I would not even be concerned. My oncologist told me not to worry either.
The suspiciousness comes from not being diagnosed last year when I had obvious symptoms. I know that happens to a lot of us so I am sometimes distrustful of the medical community.
Last year, I was diagnosed with costochondritis and bursitis prior to myeloma. My internist totally missed the mark. Finally, after doing a little research with Dr. Google, I asked her to test me for myeloma.
My dad had the disease, so I did know something about it. He died in 1969 at age 50. Very primitive treatments then, but he did live 3 years, which was much longer than anticipated. Sorry to digress.
Wishing you a healthy 2015!
The suspiciousness comes from not being diagnosed last year when I had obvious symptoms. I know that happens to a lot of us so I am sometimes distrustful of the medical community.
Last year, I was diagnosed with costochondritis and bursitis prior to myeloma. My internist totally missed the mark. Finally, after doing a little research with Dr. Google, I asked her to test me for myeloma.
My dad had the disease, so I did know something about it. He died in 1969 at age 50. Very primitive treatments then, but he did live 3 years, which was much longer than anticipated. Sorry to digress.
Wishing you a healthy 2015!
Re: Anyone relapse soon after their transplant?
Hi Ellen,
You're right about the aches and pains. And it's natural to wonder whether the multiple myeloma is behind a new ache or pain. I go through that myself, and have to whack that kind of thinking down every once in awhile.
I'm sorry to hear about your father dying from multiple myeloma at such an early age. We're not lucky to have multiple myeloma, but we are lucky to have it in 2015 instead of 1969.
Mike
You're right about the aches and pains. And it's natural to wonder whether the multiple myeloma is behind a new ache or pain. I go through that myself, and have to whack that kind of thinking down every once in awhile.
I'm sorry to hear about your father dying from multiple myeloma at such an early age. We're not lucky to have multiple myeloma, but we are lucky to have it in 2015 instead of 1969.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Anyone relapse soon after their transplant?
Without knowing your labs, it is a bit difficult to state anything definitively. Early relapse (this early) would be a rare event, especially if you had a negative marrow and PET/CT (kappa free light chains normal as well?) going in to transplant. I agree with both oncologists. First, we need to ensure that you have not relapsed, and, second, you can have pains for a number of non-myeloma related reasons, which would be more likely the issue.
One of the most difficult things in myeloma is your "new normal" and trying to get used to the fact that not everything is related to myeloma or to therapy, which isn't very easy to do. Part of getting used to this "new normal" is using your myeloma specialists to help parse the difference things that are, and are not, myeloma-related.
Importantly, you have been followed closely with no laboratory evidence of disease post transplant (though I do not know if anyone has been checking your kappa serum free light chains – i.e., your involved light chain).
Generally, we do a restaging at 90 days post transplant. I am not sure if you are scheduled for all of the tests I've mentioned, but likely are. These tests will help you feel more comfortable and confident in the success of the procedure (no new myeloma).
Please keep us updated and Happy New Year.
One of the most difficult things in myeloma is your "new normal" and trying to get used to the fact that not everything is related to myeloma or to therapy, which isn't very easy to do. Part of getting used to this "new normal" is using your myeloma specialists to help parse the difference things that are, and are not, myeloma-related.
Importantly, you have been followed closely with no laboratory evidence of disease post transplant (though I do not know if anyone has been checking your kappa serum free light chains – i.e., your involved light chain).
Generally, we do a restaging at 90 days post transplant. I am not sure if you are scheduled for all of the tests I've mentioned, but likely are. These tests will help you feel more comfortable and confident in the success of the procedure (no new myeloma).
Please keep us updated and Happy New Year.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Anyone relapse soon after their transplant?
Thank you so much for your reply, Dr. Shain. You are entirely right about the "new normal." I am lucky that I have a very compassionate oncologist who puts up with my constant questions.
In answer to your question about labs - yes, my light chains have been followed every two weeks along with serum immunofixation electrophoresis (SIFE). I am IgA kappa light chain.
So far my light chains have been around 7 the last month or so. They were 5 immediately following transplant. Interestingly, my lambda is now higher at between 8 and 9. The ratio is around 0.85.
My last SIFE showed a possibly faint IgG lambda band, which my research showed to be a possibly positive sign.
The only thing that was a little worrisome is that my b2m rose on my last bloodwork. I do have some mild kidney damage from the light chains, so this could be related.
My doctor said not to worry about it as long as the light chains were normal.
And yes, I am scheduled for a bone marrow biopsy and PET/CT scan by day 100. Going into the transplant, my light chains and ratio were normal.
This is such a crazy disease. I lost my dad to it in 1969 and it was horrible. Never thought lightening would strike twice ...
In answer to your question about labs - yes, my light chains have been followed every two weeks along with serum immunofixation electrophoresis (SIFE). I am IgA kappa light chain.
So far my light chains have been around 7 the last month or so. They were 5 immediately following transplant. Interestingly, my lambda is now higher at between 8 and 9. The ratio is around 0.85.
My last SIFE showed a possibly faint IgG lambda band, which my research showed to be a possibly positive sign.
The only thing that was a little worrisome is that my b2m rose on my last bloodwork. I do have some mild kidney damage from the light chains, so this could be related.
My doctor said not to worry about it as long as the light chains were normal.
And yes, I am scheduled for a bone marrow biopsy and PET/CT scan by day 100. Going into the transplant, my light chains and ratio were normal.
This is such a crazy disease. I lost my dad to it in 1969 and it was horrible. Never thought lightening would strike twice ...
Re: Anyone relapse soon after their transplant?
Yes, my Dan relapsed on his 100th day after the transplant. The biopsy came back 100% plasma cells. The consultant said it was just a hot spot, he was put back on chemo, but the chemo was stopped as blood works just kept falling.
Dan lost his battle after 2 years and 2 months of the biggest fight we could do.
Dan lost his battle after 2 years and 2 months of the biggest fight we could do.
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wanda and dan - Name: wanda and dan
- Who do you know with myeloma?: partner dan
- When were you/they diagnosed?: 41
- Age at diagnosis: 41
Re: Anyone relapse soon after their transplant?
Ellen,
I have amyloidosis, not multiple myeloma, and had a stem cell transplant in 2013. Those days after the transplant until the 100 day check up were an emotional "no-man's land" for me. So much worrying about whether it worked and how long it would last. And, like you, reacting, or as my family would say, over-reacting, to anything that seemed the least bit out of the ordinary.
I had a lot of random aches and pains in my bones and muscles after the transplant. Just try not to get too upset over anything until your trusted physicians have said there's a problem. I know it's hard, but it's a key skill in being able to enjoy the life you have. I've always been really strong mentally and emotionally, but I started seeing a therapist during this time to get some techniques to help me deal with the stress of the "new normal."
Hang in there and have faith that everything will work out.
Take care,
Kathy
I have amyloidosis, not multiple myeloma, and had a stem cell transplant in 2013. Those days after the transplant until the 100 day check up were an emotional "no-man's land" for me. So much worrying about whether it worked and how long it would last. And, like you, reacting, or as my family would say, over-reacting, to anything that seemed the least bit out of the ordinary.
I had a lot of random aches and pains in my bones and muscles after the transplant. Just try not to get too upset over anything until your trusted physicians have said there's a problem. I know it's hard, but it's a key skill in being able to enjoy the life you have. I've always been really strong mentally and emotionally, but I started seeing a therapist during this time to get some techniques to help me deal with the stress of the "new normal."
Hang in there and have faith that everything will work out.
Take care,
Kathy
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koontzkg - Name: Kathy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2/2013
- Age at diagnosis: 51
Re: Anyone relapse soon after their transplant?
Things sound pretty positive from what you have stated. And, yes, oligoclonal bands (presumed immune reconstitution) - the non-disease findings on SPEP-IFE - have been shown to be associated with improved outcomes.
Best of luck.
Best of luck.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Anyone relapse soon after their transplant?
Hi Ellen,
I never had a good remission after my transplant. I have light chain deposition disease as well as myeloma and I had a transplant in November 2012. By February 2013, my kappa free light chains were already creeping up. I remember feeling depressed - but I also knew that I had spent 8 months grieving my cancer and I didn't want to grieve any more. My oncologist put me on Revlimid every other day for the next year and a half (sometimes 5 mg and sometimes 10 mg) and that kept the kappa free light chains from going above 65 mg/L.
Last March 2014 I asked my oncologist if there was anything I could do to prolong "remission" and mentioned that I heard not to eat sugar. He said new studies show that keeping blood glucose low and steady seems to prolong remission. He told me to go get a good diabetes diet and follow that. I did and my cancer markers came down every month from March until July when they were NORMAL! They stayed in the normal range for 4 months, then were up a bit in November, so I started being more careful of my diet again and they came down again for my December 29 appointment! (I only take a single Revlimid pill every week right now.)
I will eat like a type 1 diabetic for the rest of my life and I am grateful that my cancer is responding to it! (See the ketogenic diet thread here in the forum if interested.)
Cathy
I never had a good remission after my transplant. I have light chain deposition disease as well as myeloma and I had a transplant in November 2012. By February 2013, my kappa free light chains were already creeping up. I remember feeling depressed - but I also knew that I had spent 8 months grieving my cancer and I didn't want to grieve any more. My oncologist put me on Revlimid every other day for the next year and a half (sometimes 5 mg and sometimes 10 mg) and that kept the kappa free light chains from going above 65 mg/L.
Last March 2014 I asked my oncologist if there was anything I could do to prolong "remission" and mentioned that I heard not to eat sugar. He said new studies show that keeping blood glucose low and steady seems to prolong remission. He told me to go get a good diabetes diet and follow that. I did and my cancer markers came down every month from March until July when they were NORMAL! They stayed in the normal range for 4 months, then were up a bit in November, so I started being more careful of my diet again and they came down again for my December 29 appointment! (I only take a single Revlimid pill every week right now.)
I will eat like a type 1 diabetic for the rest of my life and I am grateful that my cancer is responding to it! (See the ketogenic diet thread here in the forum if interested.)
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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