This Friday, June 10th, we were scheduled to fly to London for a 12 day UK cruise which we booked in October of last year. In March my lab tests started indicating relapse. We have monitored all numbers closely and with much trepidation have cancelled our cruise as of last Friday.
I am IgA lambda, diagnosed February 2013. Autologous stem cell transplant June 2013 and in remission until recently with Velcade once every other week.
Protein electrophoresis result, serum has shown as abnormal for the last several months. Total protein, albumin, alpha 1, alpha 2, are in range and beta globulin and gamma globulin electrophoresis are both slightly below normal.
The last several immunofixation electrophoresis serum tests have shown abnormal, interpretation - band seen with bound lambda only. No corresponding band seen with heavy chain (immunoglobulins). Refer to free light chain quantitation.
Frequent Serum Free Light Chain numbers are now:
Kappa/Lambda Free Ratio <0.3
Kappa Light Chain Free 2 mg/L - (3-19 mg/L) range
Lamdba Light Chain Free 644 mg/L (6-26 mg/L) range
All of my immunoglobulins have been dropping and are now as follows:
IgA 38 mg/dl (70-400mg/dl)
IgG 490 mg/dl (700-1600mg/dl)
IgM <19 mg/dl (40-230 mg/dl)
Platelets have dropped to 70 mcl (130-400 x 1000/mcl).
WBC and RBC are typically low to mid 3's mcl (WBC range 4.0-11.0 x 1000/mcl) RBC 4.20-5.40 Mill/mcl)
My oncologist said something about light chain escape. Bone marrow biopsy scheduled for this Thursday and will begin Kyprolis very soon.
Last month I went to a well-known myeloma specialist at Cedars-Sinai and he agreed Kyprolis was a good next treatment.
Relapse is hugely stressful, especially the timing of this because we had to cancel our trip. I would appreciate anyone's input on this information.
I'm a little freaked out about the possibility of amyloidosis and also MDS. I have really tried to understand all of this myeloma nonsense, but it is really over my head.
I would really appreciate any suggestions for questions to ask my doc when I see him Thursday for my bone marrow biopsy.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Relapse and frustration
Hello Carol:
A couple of general comments regarding trying to understand your situation.
One. It sounds like you are starting treatment solely based on your markers, and do not have symptoms. If that is the case, that is very good for your future prognosis. Related to this, it looks like you had a three year remission (on Velcade maintenance). I am thinking that is a little less than average, but is certainly a good sign regarding how your condition would react to future treatments, particularly in the context of no direct multiple myeloma symptoms (if that is the case).
Two: It is important to understand what is your primary marker. It seems to me like it appears to be the case that you do not have any M-spike, and that your primary marker is the lambda light chain. If it is in fact your primary marker, then that is what you would track to evaluate the next line of treatment. Confer with your doctor on this point.
Three: No need to quibble with the approach to use Kyprolis. So far, recent studies have shown it to be fairly active, including with the various chromosomal abnormalities. I would ask your doctors the question, however, do they possibly have a strategy to incorporate one of the monoclonal antibodies (Darzalex or Empliciti). There is some argument that these should be incorporated earlier rather than later to get a better long-term result. Also, do you have access to any of the even newer monoclonal antibodies (Keytruda, for example) on clinical trial? If yes, consider that route.
Four: There is some argument out there right now regarding treating to MRD negativity. If you can get a better response than the initial treatment, in theory, it is possible to get a longer PFS after first relapse. Speak with your doctor about that concept.
Five: I am not specifically recommending this option, but, regarding an ASCT, if you tolerated it well the first time, and you incorporated the best new drugs, it could be an option now or in the future.
Good luck to you
A couple of general comments regarding trying to understand your situation.
One. It sounds like you are starting treatment solely based on your markers, and do not have symptoms. If that is the case, that is very good for your future prognosis. Related to this, it looks like you had a three year remission (on Velcade maintenance). I am thinking that is a little less than average, but is certainly a good sign regarding how your condition would react to future treatments, particularly in the context of no direct multiple myeloma symptoms (if that is the case).
Two: It is important to understand what is your primary marker. It seems to me like it appears to be the case that you do not have any M-spike, and that your primary marker is the lambda light chain. If it is in fact your primary marker, then that is what you would track to evaluate the next line of treatment. Confer with your doctor on this point.
Three: No need to quibble with the approach to use Kyprolis. So far, recent studies have shown it to be fairly active, including with the various chromosomal abnormalities. I would ask your doctors the question, however, do they possibly have a strategy to incorporate one of the monoclonal antibodies (Darzalex or Empliciti). There is some argument that these should be incorporated earlier rather than later to get a better long-term result. Also, do you have access to any of the even newer monoclonal antibodies (Keytruda, for example) on clinical trial? If yes, consider that route.
Four: There is some argument out there right now regarding treating to MRD negativity. If you can get a better response than the initial treatment, in theory, it is possible to get a longer PFS after first relapse. Speak with your doctor about that concept.
Five: I am not specifically recommending this option, but, regarding an ASCT, if you tolerated it well the first time, and you incorporated the best new drugs, it could be an option now or in the future.
Good luck to you
Last edited by JPC on Wed Jun 08, 2016 5:58 am, edited 1 time in total.
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JPC - Name: JPC
Re: Relapse and frustration
Thank you so much for your response.
I don't thoroughly understand my markers either, but at diagnosis I had a 90% plasma cell percentage and M spike of 1.5, IgA of 1460. Lambda light chains were 1000, kappa <1. At diagnosis I had about 12 broken ribs, so I'm kind of assuming I spontaneously break bones before too much shows up. Since my transplant, all of my numbers have been suppressed. I also had quite a few chromosomal abnormalities at diagnosis.
My doctor's recent words were "Lambda continues to rise with a concomitant decrease in the platelet count which would be consistent with a progressive plasma cell invasion of the bone marrow."
The myeloma specialist at Cedars-Sinai concurred with the treatment plan.
I don't really understand if we're jumping the gun at treating already, or if you have to wait for some other disaster to happen.
It's very stressful and very frustrating. We were scared to go overseas with platelet counts rapidly decreasing, lambda rising and very low immunoglobulins. The doctor expressed his concern over the safety of travel, hence we cancelled.
I'm kind of freaking out over everything. However, about a month ago I started dex again - it makes me crazy.
I know enough about this to be dangerous and imagine worse case scenario stuff. I'm concerned over bone marrow failure and amyloidosis.
Revlimid seems to be problematic for me, dropping blood counts dangerously low. The specialist also concurred that Revlimid probably wasn't a viable option for me given my history with it and already low platelets.
Sorry for my rambling. Any further insights appreciated!
I don't thoroughly understand my markers either, but at diagnosis I had a 90% plasma cell percentage and M spike of 1.5, IgA of 1460. Lambda light chains were 1000, kappa <1. At diagnosis I had about 12 broken ribs, so I'm kind of assuming I spontaneously break bones before too much shows up. Since my transplant, all of my numbers have been suppressed. I also had quite a few chromosomal abnormalities at diagnosis.
My doctor's recent words were "Lambda continues to rise with a concomitant decrease in the platelet count which would be consistent with a progressive plasma cell invasion of the bone marrow."
The myeloma specialist at Cedars-Sinai concurred with the treatment plan.
I don't really understand if we're jumping the gun at treating already, or if you have to wait for some other disaster to happen.
It's very stressful and very frustrating. We were scared to go overseas with platelet counts rapidly decreasing, lambda rising and very low immunoglobulins. The doctor expressed his concern over the safety of travel, hence we cancelled.
I'm kind of freaking out over everything. However, about a month ago I started dex again - it makes me crazy.
I know enough about this to be dangerous and imagine worse case scenario stuff. I'm concerned over bone marrow failure and amyloidosis.
Revlimid seems to be problematic for me, dropping blood counts dangerously low. The specialist also concurred that Revlimid probably wasn't a viable option for me given my history with it and already low platelets.
Sorry for my rambling. Any further insights appreciated!
-
Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Relapse and frustration
Just two further quick thoughts.
Since you had bone problems, broken ribs, in the past, I would think the approach from your doctor to start treatment before that kicks in seems very reasonable. It seems that your doctor is on top of things.
Secondly, it sounds like he thinks that the platelet decrease is due to myeloma becoming active. The light chain numbers seem to indicate that, and you are getting the bone marrow biopsy. I would ask, however, if anything else could be causing the platelet issue, and what could be done possibly to support the platelet level.
Good luck to you. Regards,
Since you had bone problems, broken ribs, in the past, I would think the approach from your doctor to start treatment before that kicks in seems very reasonable. It seems that your doctor is on top of things.
Secondly, it sounds like he thinks that the platelet decrease is due to myeloma becoming active. The light chain numbers seem to indicate that, and you are getting the bone marrow biopsy. I would ask, however, if anything else could be causing the platelet issue, and what could be done possibly to support the platelet level.
Good luck to you. Regards,
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JPC - Name: JPC
4 posts
• Page 1 of 1