Hi Lyn:
I had seen Dr. Libby's post before (not on this particular thread) that M-spike-based relapse, if it goes up slowly, is an increase of 1. I have also seen other definitions from other doctors, the most conservative of which I had seen was an increase of 0.5 in M-spike. So your doctors are being a little more conservative than Dr. Libby's standard. This would be fine.
In any case, you appear to be re-starting treatment before clinical relapse. That is a very good thing, as EJ, I think from your description, is still asymptomatic (or near to it). Also, as Cheryl mentioned, 4 1/2 years is a good period. I do not recall your prior posts, but if that duration was mostly without maintenance, then that is a very good sign. Since EJ has been a "responder" so far, I think that's a good sign he will respond to either of the two regimens.
I will just add one thought. Ask your doctors what they think of elotuzumab or daratumumab. Elotuzumab, in particular, is fully approved for first relapse.
Good Luck.
Forums
Re: Asymptomatic relapse after stem cell transplant
If I understand Mayo Clinic guidelines for relapse therapy, if you are asymptomatic (no CRAB issues) and it is M-component only, their recommendation is to monitor closely with PET/CT or other bone marrow testing and no other treatment until clinical relapse.
Somebody correct me if I'm wrong, because that is currently what I'm doing.
Thanks,
Coach Hoke
Somebody correct me if I'm wrong, because that is currently what I'm doing.
Thanks,
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Asymptomatic relapse after stem cell transplant
Hi Coach Hoke:
Please refer to Dr. Libby's article (earlier in the thread). I think that there are criteria related only to the M-spike. Doctors will "call" a relapse ahead of clinical relapse. Dr. Libby's article refers to an M-spike increase of 1, but I have seen other definitions and other doctors take that increase down to 0.5 g/dL (it also takes into account fast rising M-spike, but that is a little more complicated case).
I think that the idea is to catch it before clinical relapse, before there is any bone or organ damage. I think you are correct, however, that I have also read still other doctors, who would wait for the onset of clinical relapse (very early signs) while watching closely/frequently, and not necessarily go by the M-spike criteria. My wife's doctor advised that a relapse would be evaluated on the earlier of the clinical criteria or M-spike increase, and would consider an increase of 0.5 g/dL a relapse. Clinical relapse sometimes will occur first. Since the experts do not all follow the same criteria, its hard for patients/caregivers to figure out the exact definition, as well. I have no insight into which one is more correct or the best, but if you are following the Mayo Clinic standards, I would think that would be pretty good for me.
I actually asked the question as follows: If a patient had MGUS and smoldering for many years, and had no symptoms at all up to an M-spike of about 3, was it not reasonable to wait for the M-spike to go up by more than 0.5 g/dL? (She got to about a 0.15 g/dL.) Say in this case to a 2.5 g/dL. I got a resounding no to that question.
Good luck.
Please refer to Dr. Libby's article (earlier in the thread). I think that there are criteria related only to the M-spike. Doctors will "call" a relapse ahead of clinical relapse. Dr. Libby's article refers to an M-spike increase of 1, but I have seen other definitions and other doctors take that increase down to 0.5 g/dL (it also takes into account fast rising M-spike, but that is a little more complicated case).
I think that the idea is to catch it before clinical relapse, before there is any bone or organ damage. I think you are correct, however, that I have also read still other doctors, who would wait for the onset of clinical relapse (very early signs) while watching closely/frequently, and not necessarily go by the M-spike criteria. My wife's doctor advised that a relapse would be evaluated on the earlier of the clinical criteria or M-spike increase, and would consider an increase of 0.5 g/dL a relapse. Clinical relapse sometimes will occur first. Since the experts do not all follow the same criteria, its hard for patients/caregivers to figure out the exact definition, as well. I have no insight into which one is more correct or the best, but if you are following the Mayo Clinic standards, I would think that would be pretty good for me.
I actually asked the question as follows: If a patient had MGUS and smoldering for many years, and had no symptoms at all up to an M-spike of about 3, was it not reasonable to wait for the M-spike to go up by more than 0.5 g/dL? (She got to about a 0.15 g/dL.) Say in this case to a 2.5 g/dL. I got a resounding no to that question.
Good luck.
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JPC - Name: JPC
Re: Asymptomatic relapse after stem cell transplant
In addition to the change in M-spike, an asymptomatic relapse can occur by a change is the serum free light chain (sFLC) assay results.
From Dr. Libby above:
A change in the free light chains generally show up before a change in the M-spike, and some patients do not have an M-spike and are tracked solely by their serum free light chain results.
Ron
From Dr. Libby above:
... or involved FLC level by more than or equal to 20 mg/dL (plus an abnormal FLC ratio) in 2 consecutive measurements separated by less than or equal to 2 months."
A change in the free light chains generally show up before a change in the M-spike, and some patients do not have an M-spike and are tracked solely by their serum free light chain results.
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: Asymptomatic relapse after stem cell transplant
Thank you all very much for your responses!
The fact that EJ's M-spike is rising, and he is starting to show some bone damage, is why they want to start treatment. He had had a PET/CT scan over a year ago, and then repeated it a few months ago. They were able to see increased activity in the existing lesions on his hips, and several new ones (small) on his spine. The goal is to get this all under control again before it does anymore damage! Everything else, including his FLCs, are in the normal range.
We were caught a little off guard by the relapse only because we had expected the bone pain to return in his ribs first, which was where he first noticed the myeloma before he was diagnosed. Hindsight being 20-20, he has been complaining of back aches and increased tiredness for the past few months, so we should have known. Prior to his diagnosis in 2010, he used to say that he felt like an old man. I haven't heard him use that expression for a long time, but he's been saying it a lot lately, so I do think he is starting to feel it a bit.
We discussed some of the newer drugs with both docs, but they wanted to keep them in reserve. EJ has only had Velcade, and did not have any maintenance, so the docs think he will respond well this time, too.
We go back to his local oncologist on Monday to finalize his treatment plan. Regardless of whether he settles on Velcade or Ninlaro, the plan is to do 6 - 8 cycles, and then make a decision about maintenance.
Thank you all again for your thoughts! I'll let you know what the decision is and how it goes.
Lyn
The fact that EJ's M-spike is rising, and he is starting to show some bone damage, is why they want to start treatment. He had had a PET/CT scan over a year ago, and then repeated it a few months ago. They were able to see increased activity in the existing lesions on his hips, and several new ones (small) on his spine. The goal is to get this all under control again before it does anymore damage! Everything else, including his FLCs, are in the normal range.
We were caught a little off guard by the relapse only because we had expected the bone pain to return in his ribs first, which was where he first noticed the myeloma before he was diagnosed. Hindsight being 20-20, he has been complaining of back aches and increased tiredness for the past few months, so we should have known. Prior to his diagnosis in 2010, he used to say that he felt like an old man. I haven't heard him use that expression for a long time, but he's been saying it a lot lately, so I do think he is starting to feel it a bit.
We discussed some of the newer drugs with both docs, but they wanted to keep them in reserve. EJ has only had Velcade, and did not have any maintenance, so the docs think he will respond well this time, too.
We go back to his local oncologist on Monday to finalize his treatment plan. Regardless of whether he settles on Velcade or Ninlaro, the plan is to do 6 - 8 cycles, and then make a decision about maintenance.
Thank you all again for your thoughts! I'll let you know what the decision is and how it goes.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Asymptomatic relapse after stem cell transplant
Talking things through with his local oncologist was a bit interesting. She was less enthusiastic about Ninlaro than I though she'd be. Actually, she was very put out that we had brought it up! I was very surprised because she had been very encouraging when we told her we were going for a second opinion. I don't think she was very knowledgeable about the drug, and didn't think it could be prescribed at first relapse. We talked it through and agreed that if the insurance co-pays were too high, EJ would go the Velcade route, but if they were reasonable, Ninlaro would work better with his schedule.
Thankfully, insurance will pay 100% of both the Ninlaro and the Revlimid! Yeah! They'll be shipped to him next week, and he'll start taking them on the 22nd. As with Velcade, he needs to take acyclovir, as well as an antibiotic and two regular-strength aspirin a day. He's also going to be taking a high dose of dex, which he's really not looking forward to.
Lyn
Thankfully, insurance will pay 100% of both the Ninlaro and the Revlimid! Yeah! They'll be shipped to him next week, and he'll start taking them on the 22nd. As with Velcade, he needs to take acyclovir, as well as an antibiotic and two regular-strength aspirin a day. He's also going to be taking a high dose of dex, which he's really not looking forward to.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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