Treatment for amyloidosis and multiple myeloma

Posted by beckyoutlaw1115 @beckyoutlaw1115, Oct 17, 2017

I am currently on Velcade ad Daramumtab infusion to lower my light chains after Dara did not work alone. My first lab was yesterday and instead of lowering, my light chains had gone up 3/4 of a point. We’re going to check agan in two weeks then “go from there”. Is there anyone out there who has had a problem similar to this? If so, please respond as I”m very concerned. Becky Outlaw

@beckyoutlaw1115 Becky, if you are still around on line, have you heard about Patisiran, the most recent (I believe) drug from Alnylam? It sounds very good, and has FDA approval already. I hope to get on it soon. How are you doing now?

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@oldkarl

@beckyoutlaw1115 Becky, I am not on Daramumtab, but I have learned from experience that the sFLC numbers go up and down like a chimp on a pogo stick, for some, at least. Mine has been down at the bottom of the ref scale, then more than doubled after a few months, then down to the middle, and up again. I think just don’t get too excited too quick.

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Hi oldkarl…when you mention light chains, are you referring to kappa/lambda?? Also, the M protein spike…is that separate?

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@oldkarl

@beckyoutlaw1115 Becky, I am not on Daramumtab, but I have learned from experience that the sFLC numbers go up and down like a chimp on a pogo stick, for some, at least. Mine has been down at the bottom of the ref scale, then more than doubled after a few months, then down to the middle, and up again. I think just don’t get too excited too quick.

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@dazlin WOW, what a good question. This is one of the great mysteries of Amyloidosis diagnosis and treatment. That is, every person you talk to has a different set of opinions and values on this matter. First, the kappa proteins, seem to be the light (or Lite Chain) proteins. They are actually groups of proteins which weigh less than the Lambda proteins. Each can join with others of similar format to make long strings, or chains, to interrupt the business of various tissues in the body. The reference range is different for each in serum. Lite Chain reference range the clinic uses is typically up to 1.6 miligrams per deciliter of serum. For Heavy proteins, it usually is thought to be around 1.95mg/dL. Now, the M protein spike…it is separate, but I have talked with several folks who all disagree, so I will leave that alone. This is the great discomfort of Amyloidosis diagnosis. The Mayo search engine has a lot of stuff on this. Sorry I cannot do more. But do keep in mind that the assays for SERUM are quite different from those for PLASMA or WHOLE Blood.

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@oldkarl

@beckyoutlaw1115 Becky, I am not on Daramumtab, but I have learned from experience that the sFLC numbers go up and down like a chimp on a pogo stick, for some, at least. Mine has been down at the bottom of the ref scale, then more than doubled after a few months, then down to the middle, and up again. I think just don’t get too excited too quick.

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Good morning oldkarl, thanks for your detailed reply!! I’m soooo happy to be able to talk to you…not many people know much of anything about this…so basically it’s just me and the internet.
Yes, it’s my understanding that kappa and lambda are light chains…I think white cells to help immunities?? But so are the IGG ,IGM. Very confusing, but very interesting. I guess all the different names, are different cells in one component..I don’t know???. It’s also my understanding the M spike is part of those chains, and spikes when one or the other starts cloning itself excessively.
I’m stable in MGUS, my kappa lambda ratio is a bit high…slight M spike under 1 point for a year now. What I can’t figure…is individually the kappa and lambda are within the reference range…yet, the ratio of the two are high. I think this takes math…ewwww, not my subject. My IGM’s have been pretty low…guess crowded out…?? Other labs look good, no anemia, no kidney probs, etc. Many other physical issues have popped…lung nodules(doesn’t look cancerous), multiple fatty tumors, skin rashes, to name a few. I’m now high risk for fractures, osteoporosis….started in my early 50’s. I was in complete denial about that, being a personal trainer, and worked out daily. They say it’s age related, and I’m petite, small framed. Now mgus is said to contribute…myeloma cells like osteoclasts. I’m dealing with that naturally, as I cannot tolerate the side effects of those meds.
Sorry for this lonnnng message, but one other thing I want to say is my aunt had painful swelling, she would cry. Nothing EVER showed up in her blood. This lasted a few years. The last bout, her son carried her into E.R…she didn’t last 2 weeks…was blood cancer. None of us in the family know what type. Unbelievable !! Sometimes I can’t help wonder why I have all these strange issues…yet everything looks fine.

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@oldkarl

@beckyoutlaw1115 Becky, I am not on Daramumtab, but I have learned from experience that the sFLC numbers go up and down like a chimp on a pogo stick, for some, at least. Mine has been down at the bottom of the ref scale, then more than doubled after a few months, then down to the middle, and up again. I think just don’t get too excited too quick.

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@dazlin Hi, dazlin… I must tell you that the best info I have found has come from the videos from Mayo with Martha Grogan and Angela Dispenzieri, and Morey Gertz. Then the stuff from Alnylam and the Amyloidosisfoundation.org. A lot of the other stuff rely on biopsy, which is very unfortunate as it is out of date by several years.. Most of the biopsies, especially the fat pad, really show less than 80% positive for patients who are found later to have had Amy before they died. There seem to be no biopsies with 100% certainty. The only tests with 100%certainty now, or near to it, seem to be the sFLC, PEP, sPEP, etc. as are listed in Mayo and the Foundation.

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@oldkarl

@beckyoutlaw1115 Becky, I am not on Daramumtab, but I have learned from experience that the sFLC numbers go up and down like a chimp on a pogo stick, for some, at least. Mine has been down at the bottom of the ref scale, then more than doubled after a few months, then down to the middle, and up again. I think just don’t get too excited too quick.

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Thanks karl…ill look into that.

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