Well....my Dr. at Duke is saying that the chemo did not fail and although I have not talked to her in explicit terms ...we have an all day meeting Dec 20 with testing pre - SCT......I did get the results of my IG Light Chain Serums and they are all normal...as normal as right in the middle of the scale. I cannot get words out of anyone it seems but. I have O M-Spike and my Light Chain Serums are VERY normal
IG FREE LIGHT CHAINS SERUM
Reference
IG FREE LIGHT CHAIN KAPPA 1.09 mg/dL [0.33-1.94]
IG FREE LIGHT CHAIN LAMBDA 1.01 mg/dL [0.57-2.63]
IG FLC KAPPA/LAMBDA RATIO 1.08 [0.26-1.65]
I do not have the comparative numbers but does this mean I am in a pretty strong remission??? I have only done 4 cycles of RDV and really nothing else besides fixing a tumor on my spine. Everywhere I read is say full remission....I don't want to bother Dr. G until our appointment but...does this look good???
Thank you!
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Re: Serum Light Chains
A Free light Assay reading all in the normal range with no M Spike is very good news. What is your protocal? With results like that I would have a serious discussion with your Dr. as to whether a SCT is needed at this time. An SCT may not improve the outcome that you have already achieved and ads a level of risk, not to mention missing work and going through hell for a while. This is a big debate currently. I personally have not had an SCT and reached the state you are in with VRD. I am still in the remissive state going on 4 yrs. I am now on just VD at reduced intervalls and have not missed any work. My quality of life has been very good. Most SCT patients end up getting a maintanace level of RD or VD after the SCT which may go on indefinetly. So if that is the case, what is being gained by the SCT to offset the risk, loss of work etc.?
Everyone is different and you may end up deciding that the SCT is the right decision given your situation. However, you should have that serious discussion so you can make an informed decision that is best for you.
Ron H
Everyone is different and you may end up deciding that the SCT is the right decision given your situation. However, you should have that serious discussion so you can make an informed decision that is best for you.
Ron H
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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: Serum Light Chains
Like you I reached normal stats on light chains etc. after three cycles of VRD. They gave me another cycle just to make sure they put it in remission. I'm going in for a SCT on Jan. 3rd. I too had similar questions about the use of a SCT. After talking to several different oncologist there is statistical evidence that a SCT will give you another two years of remission. Following the SCT with low dose chemo for three years also gives you another couple of years. So statistically they have proven the SCT will give you (on average) a longer remission compared with a group that did not do a SCT.
What pushed me over to the SCT was the fact that if I have a relapse which most folks will have with this disease and have more chemo there is a good chance I won't have enough good stem cells left to harvest for a SCT. Chemo destroys the stem cells, the more chemo you take the more difficult it is to harvest cells for the SCT. So, if you are going to do a SCT the best time to do it is when you have had the least amount of chemo treatments.
In my case they believe I've had minimal chemo compared to most patients and they can harvest enough cells for three transplants. So, if I need one in the future I can do it again with my stored cells.
Am I making the right decision? I don't know for sure but I'm relying on good doctors, statistics and a gut feel to lead me in the right direction. Jerry.
What pushed me over to the SCT was the fact that if I have a relapse which most folks will have with this disease and have more chemo there is a good chance I won't have enough good stem cells left to harvest for a SCT. Chemo destroys the stem cells, the more chemo you take the more difficult it is to harvest cells for the SCT. So, if you are going to do a SCT the best time to do it is when you have had the least amount of chemo treatments.
In my case they believe I've had minimal chemo compared to most patients and they can harvest enough cells for three transplants. So, if I need one in the future I can do it again with my stored cells.
Am I making the right decision? I don't know for sure but I'm relying on good doctors, statistics and a gut feel to lead me in the right direction. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Serum Light Chains
You can have the stem cells harvested now and put off the SCT until first relapse. That is what many people do. Thus many options available. Point is don't rush into a decision.
Ron
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: Serum Light Chains
I have a little more information and questions. I hope someone reads this ... please! Right now I am A symptematic, I have no signs of multiple myeloma that can be found without a Bone Marrow Biopsy. I have less then 20% Myeloma cells and have never ad higher., M-Spike is not there (I am part of the 99%) My serum Light chain tests are perfect. Now....I have Monosomy 13 in 42% of cells (I do not have the other t13 or whatever it is that makes partial damage to the 13 chromosones) ...the rest of the Cygenics tests were normal except I have a light indicator of CLL in 1 - 4% of cells, and I have know that since early summer. I assume this puts my High Risk but I am getting conflicting info. I am also not sure if the Monosomy 13 came from the FISH test on the CLL or the multiple myeloma...or if it makes any difference. I am 53 years old and just married. I work 40 hours a week and I go to Duke Thursday to start the evaluation for SCT. My multiple myeloma Oncologist did all of these tests and had results over a month ago but does not seem concerned, she called me over Thanksgiving and told me she was really only worried about the CLL and if it needed to be treated before transplant but otherwise she thought my chemo went well and I was going to do well. She still says she can do the Transplant and feels like she can get a long term remission and possibly complete. I wonder if I am looking down the road at a donor transplant as my only way of survival. I am very healthy...still not had so much as a cold since diagnosis. I work 50 hours a week, drove 800 miles last weekend and I feel better then I have in years since my back repairs worked so well! I would love to hear something positive
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bluemountain
Re: Serum Light Chains
One other thing. I was diagnosed March 19, 2012. Since then I have had ..this was my 4th Bone Marrow Biopsy. IF I had Monosomy 13 wouldn't my DR. have known a long time ago and told me...and from day one he has told me ...no problem, stage one, caught it early ect. I have also been told my oncologist does not pull punches so...could this be from the CLL. I also read monosomy 13 is GOOD when it comes to having CLL??? I hat this mess!
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bluemountain
6 posts
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