We're so dissapointed that the 100-day test still shows traces of the myeloma. Pre-ASCT, the Kappa FLC was 40ish, and the latest test also shows the same number.
Dad has p53del.
What does this mean? Does this mean that he achieved remission just after transplant, and then it gradually crawls back up until today?
What a Friday the 13th.
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Re: Kappa FLC did not go down after ASCT
What was the Kappa FLC after transplant? What is the Kappa/Lamda ratio? How are all of his other blood test numbers and his m-spike, if he is a secretor?
Some people take longer to respond to the ASCT, like me. My numbers gradually improved for about 10 months post transplant. At 100 days I still had an m-spike, the same level as before transplant, and my other numbers were still in the abnormal range. By 6 months I had achieved CR.
After that my free lite tests began to improve and all of my other numbers improved such as IgA and IgM. I am IgG kappa myeloma.
Be sure to ask your oncoloigst this question about the Kappa FLC.
Nancy in Phila
Some people take longer to respond to the ASCT, like me. My numbers gradually improved for about 10 months post transplant. At 100 days I still had an m-spike, the same level as before transplant, and my other numbers were still in the abnormal range. By 6 months I had achieved CR.
After that my free lite tests began to improve and all of my other numbers improved such as IgA and IgM. I am IgG kappa myeloma.
Be sure to ask your oncoloigst this question about the Kappa FLC.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Kappa FLC did not go down after ASCT
Hello Nancy,
His kappa flc of the blood was 38 pre-asct, now 41 post-asct. His bmb aspirate kappa flc, however, was 21 pre-asct (i know they are different but not sure what's the difference). (Related: does this nean that he was in bear-remission pre-asct?)
He has never had his m-spike tested, i don't know why. His total protein level is on the normal range (it has always been) and so does his albumin level. HB is a bit low, but it has always been on the 10 range because of his thalassemia minor.
His ratio was initially off because his lambda was very low. Doc said not to worry about it because Velcade tends to supress the flc. Now, his ratio is 2.5. Previously, it was 50ish--again, because of the lambda flc. Once the Velcade is taken off, the ratio usually gets back to less than five, but the kappa also gradually goes up...
Did you take any myeloma meds during those times? If so, when did you start?
His kappa flc of the blood was 38 pre-asct, now 41 post-asct. His bmb aspirate kappa flc, however, was 21 pre-asct (i know they are different but not sure what's the difference). (Related: does this nean that he was in bear-remission pre-asct?)
He has never had his m-spike tested, i don't know why. His total protein level is on the normal range (it has always been) and so does his albumin level. HB is a bit low, but it has always been on the 10 range because of his thalassemia minor.
His ratio was initially off because his lambda was very low. Doc said not to worry about it because Velcade tends to supress the flc. Now, his ratio is 2.5. Previously, it was 50ish--again, because of the lambda flc. Once the Velcade is taken off, the ratio usually gets back to less than five, but the kappa also gradually goes up...
Did you take any myeloma meds during those times? If so, when did you start?
Re: Kappa FLC did not go down after ASCT
It sounds like your husband is doing ok. Tests need to be looked at over time, not just one. It takes our bodies time to recover from the ASCT and get to an even level, whatever that is.
My oncologist started me on Rev maintenance at 100 days, but I had a bad reaction within 5 days. So, we stopped maintenance. I was about 3 years without any treatment other than Zometa every 6 weeks before I restarted treatment again. I'm taking Rev and Dex again with very good response to treatment.
Try to relax and talk with your husband's oncologist about your concerns and what your husband's test results mean. Ask him why he has never done the SPEP to find out what his m-spike is, if he has one.
Breathe,
Nancy in Phila
My oncologist started me on Rev maintenance at 100 days, but I had a bad reaction within 5 days. So, we stopped maintenance. I was about 3 years without any treatment other than Zometa every 6 weeks before I restarted treatment again. I'm taking Rev and Dex again with very good response to treatment.
Try to relax and talk with your husband's oncologist about your concerns and what your husband's test results mean. Ask him why he has never done the SPEP to find out what his m-spike is, if he has one.
Breathe,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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