Hello everyone!
I was diagnosed with multiple myeloma in May of 2015 after going to the hospital for kidney stones. After having a CT for the kidney stones, they noted that I had a lesion on my right sacrum about 4 cm and that I should have it checked out. After finding an oncologist, I had a bone marrow biopsy done and was diagnosed with IgG kappa and IgG lambda biclonal myeloma / MGUS. Results of the first bone marrow biopsy also showed problems with chromosome 7, 9, 13. Also I am positive for 3 copies of 1q21 and a loss of IGH and a loss of MAF. The October results are after 5 rounds of Revlimid, Velcade, dexamethasone (RVD)
Test May October
Kappa Free 1658 951
Lambda Free 255 3.23
Free K:L Ratio 6.5 294
Beta 2 Micro 2.27 1.35
IgA 62 54
IgG 541 464
IgM < 5.25 < 7.5
Plasma cell percentages were 50-60% in May and 40-50% in October. After seeing a partial response with the treatment, I went for a second opinion with a myeloma specialist in December.
Initial consultation was told to stop RVD and have another bone biopsy and have a PET scan performed. PET scan and bone marrow were done in January. PET scan showed no lesions, no abnormal organ or bone issues.
After consulting with the doctor, the recommendation is to do a stem cell transplant immediately. I was also told I am stage 3 high risk. So do I do a stem cell transplant or continue treatment to get a deeper response?
After much google online research, I am leaning towards postponing the stem cell transplant and trying some other treatment to get my numbers down. I don't know if a deeper response before my stem cell transplant is the best thing to do.
Any help would be appreciated.
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Re: Should I have a stem cell transplant?
I don't know that I will be of much help, but I wanted you to know someone read this and was "thinking".
I am fairly new to having to understand myeloma. My husband was diagnosed May 2015. He is standard risk.
Some of the people I know with chromosomal abnormalities did not respond to a stem cell transplant. One is now considering a tandem stem cell transplant.
Again, I am not being helpful, but I hope it helps to know someone is wishing they could help.
I am fairly new to having to understand myeloma. My husband was diagnosed May 2015. He is standard risk.
Some of the people I know with chromosomal abnormalities did not respond to a stem cell transplant. One is now considering a tandem stem cell transplant.
Again, I am not being helpful, but I hope it helps to know someone is wishing they could help.
Re: Should I have a stem cell transplant?
Thank you for posting. I found a new doctor and am on a different treatment and things are going a lot better. I am probably going to be faced with the decision of doing the stem cell transplant.
I wish your husband the best. Thank you again for replying.
I wish your husband the best. Thank you again for replying.
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Clinkster
Re: Should I have a stem cell transplant?
I believe they want the M-spike down before a stem cell transplant is done.
I'm glad you sought a new doctor and the new treatment is going well. I would be interested to know what they are doing.
I'm glad you sought a new doctor and the new treatment is going well. I would be interested to know what they are doing.
Re: Should I have a stem cell transplant?
Good Day, Clinkster: Welcome to the forum, but I am sorry you have to be here.
In my research over the last year, one of the concerns of the best myeloma experts is those who get less than an average response to treatment, the so called "non-responders". They found that condition very tricky, so it would be hard for me or any non-medical professional to give you an easy answer on the forum. So I will try and give you a couple of things to think about.
First, not to try and sugar coat anything, but I have heard doctors say that there is such a thing as slow-moving myeloma. For some of the non-responders, the poor response is a bad thing, but for others, the nature of their myeloma is just that it moves down slowly, but also will move up again slowly, and if that's the case, it is a good thing.
Second, although I cannot say what would be best, you do need, I think, some additional treatment, either additional induction, or a stem cell transplant. Studies have shown that in the old days the additional induction did not seem to help too much. So if you take additional treatment, be sure its from the newly approved class of drugs (monoclonal antibodies, Kyprolis, ixazomib, Pomalyst, etc.)
Thirdly, your doctor may be thinking that the additional treatment could be a post-stem cell transplant consolidation.
Good luck to you.
In my research over the last year, one of the concerns of the best myeloma experts is those who get less than an average response to treatment, the so called "non-responders". They found that condition very tricky, so it would be hard for me or any non-medical professional to give you an easy answer on the forum. So I will try and give you a couple of things to think about.
First, not to try and sugar coat anything, but I have heard doctors say that there is such a thing as slow-moving myeloma. For some of the non-responders, the poor response is a bad thing, but for others, the nature of their myeloma is just that it moves down slowly, but also will move up again slowly, and if that's the case, it is a good thing.
Second, although I cannot say what would be best, you do need, I think, some additional treatment, either additional induction, or a stem cell transplant. Studies have shown that in the old days the additional induction did not seem to help too much. So if you take additional treatment, be sure its from the newly approved class of drugs (monoclonal antibodies, Kyprolis, ixazomib, Pomalyst, etc.)
Thirdly, your doctor may be thinking that the additional treatment could be a post-stem cell transplant consolidation.
Good luck to you.
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JPC - Name: JPC
Re: Should I have a stem cell transplant?
I hope you are continuing to have a better response.
I thought I'd share my husband's case with you. Like you, he had high kappa numbers, even higher than yours, was diagnosed Stage 3 and had deletion of the p53 gene. After an initial three months using other common first-response medications, he had 9 months on the same course you are on. He was only only able to get to a low of 149 kappa free light chains, but they said it was time to do the transplant. His siblings didn't match so he had a donor.
He had the stem cell transplant in October. It was a bit rough but then he had a severe setback the next month of grade 4 skin graft versus host disease (GVHD). He did live through it, but he had a very rough 33 days in the hospital. After the 100 day mark, his count is down to 1.88 (yeah!!). He continues to have problems with skin rashes and the CMV virus raising it's ugly head each time they try to reduce the steroids or tacrolimus. We are very happy with the counts, though, and he is alive which it the most important.
Other than the struggles I mentioned, he is doing quite well and is putting a bug in the doctors ear about going back to work soon. Best of luck to you.
I thought I'd share my husband's case with you. Like you, he had high kappa numbers, even higher than yours, was diagnosed Stage 3 and had deletion of the p53 gene. After an initial three months using other common first-response medications, he had 9 months on the same course you are on. He was only only able to get to a low of 149 kappa free light chains, but they said it was time to do the transplant. His siblings didn't match so he had a donor.
He had the stem cell transplant in October. It was a bit rough but then he had a severe setback the next month of grade 4 skin graft versus host disease (GVHD). He did live through it, but he had a very rough 33 days in the hospital. After the 100 day mark, his count is down to 1.88 (yeah!!). He continues to have problems with skin rashes and the CMV virus raising it's ugly head each time they try to reduce the steroids or tacrolimus. We are very happy with the counts, though, and he is alive which it the most important.
Other than the struggles I mentioned, he is doing quite well and is putting a bug in the doctors ear about going back to work soon. Best of luck to you.
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cathy - Name: cathy
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 52
Re: Should I have a stem cell transplant?
Thanks everybody for your posts. I have started new chemo – Pomalyst, Kyprolis, and dexamethasone. My kappa was 165 starting new treatment. After first month cycle I am at 40. Hopefully 2nd cycle will be as good. My thought is to achieve 10 or lower before stem cell collection.
The one issue I have not resolved is to stay on chemo or go to transplant. After much research, it seems that the overall survival rate has very little difference with transplant or not. I assume that I will be on some type of meds the remainder of my time. I am sure transplants have and will be the best option for many people.
Thanks again to lrankin for you post.
The one issue I have not resolved is to stay on chemo or go to transplant. After much research, it seems that the overall survival rate has very little difference with transplant or not. I assume that I will be on some type of meds the remainder of my time. I am sure transplants have and will be the best option for many people.
Thanks again to lrankin for you post.
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Clinkster
7 posts
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