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beckyoutlaw1115
@beckyoutlaw1115

Posts: 12
Joined: Aug 29, 2017

Treatment for amyloidosis and multiple myeloma

Posted by @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

REPLY

@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.

@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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Oh ,vyou just made my day.  Somehow it's so comforting to know I'm not alone in this up and down trend.  You have given me hope.  Thanks so much.

@beckyoutlaw1115 Becky, I have been thinking about the relationships which exist between Amy and Alzheimer’s. Although in ways, much of Alzheimer’s is quite different from the rest of the PDD (protein deposit diseases), still,, most folks know a whole lot more about Alzheimer’s than they do about things like Light Chain Amy, or Cystatin-C, or Gelsolin, or even Crohn’s. Consequently, I have found it very useful to refer occasionally to Amy as a relative of Alzheimer’s in the sense of depositing mis-folded protein in body tissues. In the case of C-Sys, some of the dead or dying protein is deposited in the outer layers of the brain instead of in the heart of the brain as in Alzheimer’s. In many of the Amy Light chain types, that deposit can be and is often directed to the sensori-control nerves of the body, such as between organs or muscles and brain. For instance, between heart and brain, lungs and brain, pancreas and brain, etc. Thus it can and does affect speech, memory, sight, heartbeat, urinary action (as in my case) and other bodily and mental functions. It is a significant cause of peripheral neuropathy. Again, as in my case. Again, back to the sFLC, the tests are only accurate to certain limits. If the Bindings assay says your number is, say 2.75mg/dl, your actual number is possible a little higher or lower. However, the test can only be accurate within a certain number, and I do not know what that accuracy is. With Diabetes, the strips are considered accurate if they read within 50 of actual Glucose, so a reading of 150 may be actually within the range of 100 to 200. But as time goes along, these tests are becoming more accurate.

Well Oldkarl you’ve done it again. This one was complicated but Ive read it twice and understand more. Wow! This is an eye opener for sure and may explain some of my symptoms. Keep up the good work on your research and pass it on. Thanks again.

@beckyoutlaw1115

Well Oldkarl you’ve done it again. This one was complicated but Ive read it twice and understand more. Wow! This is an eye opener for sure and may explain some of my symptoms. Keep up the good work on your research and pass it on. Thanks again.

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Thanks for the kind words, Becky. Again, if you want to see the whole write-up, you can download it or simply read it at https://bit.Ly/1w7j4j8 Amyloidosis.pdf or docw or odt.

@beckyoutlaw1115 Hi, again, Becky. For you and others, during the night I found a very interesting set of articles about Amy. In Wikipedia, “Amyloidosis”. One of the best parts of this 7 or 8 page bit is a list of some of the more popular diseases and disorders which are part of the Amy family. Rather technical, but well written and resourced. Alzheimers, *Diabetes type 2, Parkinson’s, Mad Cow (Bovine spongiform encephalopathy), Fatal familial insomnia, Huntington’s, *Medullary carcinoma of thyroid, *Cardiac arrhythmias, *Atherosclerosis,* Rheumatoid arthritis, *Aortic medial amyloid, Prolactinomas, *Familial amyloid polyneuropathy, *Hereditary systemic Amy, Dialysis related amy, *Finnish Amy (Gelsolin),* Lattice corneal dystrophy, *Cerebral Amy angiopathy (Icelandic), *Systemic AL Amy, Sporadic Inclusion body myositis. Those marked with * seem to be part of my Amy package, according to med records. There are several other articles which Wiki points to, and a good list of resources to dig through.

Wow!!! Who would have ever thought of these diseases as a part of Amyloidosis . I will, at some time soon, go to Wiki and read. It sounds very interesting and I can’t thank you enough to keep me updated. And I’ve been meaning to ask you how long ago you were diagnosed with A,my. I’m very curious. I do havae cardiac affythmias, being taken to the ER several times. I don’t have a diagnosis on my kidney condition but :”they are not working as they should”. No dialysis yet. Thank you for the helpful research. Stay in touch. Becky

@beckyoutlaw1115 Hi, Becky. Yes, it’s a tough road to get a diagnosis in the Amy wilderness. But it is mostly up to you. (1) your doctor will tell you that you cannot possibly have any of it. It is too rare. Tell the doc to help you or stand aside. Being rare does not preclude you having the disorder. Help you by getting you the sFLC and 24-hour tests. The doc must call ALNYLAM.com to get you into their DNA program. The doc must register the doc’s and clinic’s name, and yours, with ALNYLAM. Read their RED ALERT Amyloidosis Warnings. https://www.ALNYLAM.com Do not let the pros defend the disease against the treatment. That seems to be the protocol you have to fight against.
(2) Call your favorite upper level Amy Center, whether Mayo, Mass General, Memorial Sloan Kettering, Fred Hutchinson, Stanford, City of Hope,…. to ask an expert (it should be a hematologist with good Amy experience) how to handle your case and get some guidance about the next steps.
(3) Learn all you can. Everything you will need is online now. Do an Internet search for Amyloidosis Foundation, and read their site, especially the descriptions and definitions. Same for Cancer Net
(4)Go to the various Center sites and put in a search for Amyloidosis. Watch the videos from the sites. Mayo has a great selection in their Grand Rounds videos, especially the ones titled “All the (patient or doctor) needs to know about Amyloidosis”.
(5) If you can, make an appointment to go to one of the centers for a conflab. Either the center or some very top lab must do some intricate blood work, especially by Atom Force Microscope, to see exactly what you have. Biopsies are now generally rated old school.
(6) Start your own write-up of your situation. If you like, take a look at mine on the Internet. It is free, and I don’t sell anything. https://bit.Ly/1w7j4j8
Well, that should get you started. I will be anxious to hear how your situation goes.

@oldkarl

@beckyoutlaw1115 Hi, Becky. Yes, it’s a tough road to get a diagnosis in the Amy wilderness. But it is mostly up to you. (1) your doctor will tell you that you cannot possibly have any of it. It is too rare. Tell the doc to help you or stand aside. Being rare does not preclude you having the disorder. Help you by getting you the sFLC and 24-hour tests. The doc must call ALNYLAM.com to get you into their DNA program. The doc must register the doc’s and clinic’s name, and yours, with ALNYLAM. Read their RED ALERT Amyloidosis Warnings. https://www.ALNYLAM.com Do not let the pros defend the disease against the treatment. That seems to be the protocol you have to fight against.
(2) Call your favorite upper level Amy Center, whether Mayo, Mass General, Memorial Sloan Kettering, Fred Hutchinson, Stanford, City of Hope,…. to ask an expert (it should be a hematologist with good Amy experience) how to handle your case and get some guidance about the next steps.
(3) Learn all you can. Everything you will need is online now. Do an Internet search for Amyloidosis Foundation, and read their site, especially the descriptions and definitions. Same for Cancer Net
(4)Go to the various Center sites and put in a search for Amyloidosis. Watch the videos from the sites. Mayo has a great selection in their Grand Rounds videos, especially the ones titled “All the (patient or doctor) needs to know about Amyloidosis”.
(5) If you can, make an appointment to go to one of the centers for a conflab. Either the center or some very top lab must do some intricate blood work, especially by Atom Force Microscope, to see exactly what you have. Biopsies are now generally rated old school.
(6) Start your own write-up of your situation. If you like, take a look at mine on the Internet. It is free, and I don’t sell anything. https://bit.Ly/1w7j4j8
Well, that should get you started. I will be anxious to hear how your situation goes.

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I will definitely go to these sites and learn just as much as I can. I’m going to Mayo in Jacksonville so I think I’ll start there. How long ago were you diagnosed?

@beckyoutlaw1115 Well, it has taken, so far, about thirty years, starting with an extreme flair up with my heart and lungs. It has increased in knowledge, intensity and general agreement until now all my doctors agree with the dX. It took me over a year from the time the first doctor told me until I was in agreement. It is not an easy dX. Actually, the first signs came while I was in high school or younger. I have had sleep apnea and insomnia since about the age 10.

I was diagnosed 3 years ago, was in remission for 7 months, then back to where I am now which I’m not happy about but I realize it could be a lot worse. My symptoms started with fluid buildup in my feet and ankles, then later in my lungs. That’s when I went to Mayo!

@beckyoutlaw1115

I was diagnosed 3 years ago, was in remission for 7 months, then back to where I am now which I’m not happy about but I realize it could be a lot worse. My symptoms started with fluid buildup in my feet and ankles, then later in my lungs. That’s when I went to Mayo!

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@beckyoutlaw1115 Just thought I would mention that in my search for a real dX since 1975, I have asked 60-70 M.D.s, 300-400 PAs, nurses and nurse practitioners, med techs, etc. I have got the first solid answers from a newspaper reporter and an Internet doctor. Now, almost two years later, all my medical team agrees with the first stage of the diagnosis. Multiple mutations of Light Chain Amy, including hATTRwt, Cystatin, primary, systemic, perhaps others. Of course, if some medico refuses to recognize that dX, they are soon not part of my team.

@beckyoutlaw1115 Hi, Becky, again. I am working on a list of various notable symptoms and signs of Amyloidosis of any form. I want to make a list of the things that ordinary folks might notice in their own lives that would encourage them and their doctors to go for “truth in diagnosis”, indicating a likelihood of Amy. For instance, a high percent of known Amy patients use CPAP. Many have rheumatoid and/or psoriatic arthritis. About 10% of AL have enlarged tongues. I have black spots or sections on my toes and my eyelids. My vision is wavy and doubled in my eye from corneal dystrophy. My fingernails and toenails split and chip easily. On some of the nails, one side grows faster than the other side, creating a split or tear in the middle. I develop little purple-gray spots on my skin, all over my body. Anyway, I would appreciate if anyone who has this sort of thing would send me their list, I would really appreciate it. Positive proof of diagnosis is now available through current technology, but unless the patient asks to be tested, death will be listed as “from unknown causes”. One of my good friends died a couple years ago from AL, but was never diagnosed. Or treated. Treatment is moving into real medicine now.

@beckyoutlaw1115 Hi, Becky. I have been wondering how you are doing?? I seem to be riding along, just dealing with the issues that come up. The only doc I have found in this area who can even spell the words is not in any hurry to get me into treatment, so I guess I will just have to take the consequences. My biggest problem, I think, is the anger I feel when I try to get medical care someplace and fail, or fail to get into a clinical trial because medicare does not approve, although all the labs agree I have it, but my brand seems to not show on any biopsy.

@beckyoutlaw1115 Maybe you have heard or read something that interests me. I have been reading about Mixed Connective Tissue Diseas for a while, and have a thought about it. The symptoms and signs folks talk about are very familiar to me. But I don’t have MCTD, so I am told by my GP. I have hATTRwt, or Primary hereditary Amyloidosis of the TransThyretin wild type. It is called Wild Type because it can mutate into almost any form of Amyloidosis, apparently. The signs, symptoms and effects are the same. Only the mutation of the mutation pattern varies, and the exact tissue(s) that are affected vary. And there are well over a thousand known mutations of Amyloidosis, probably getting close to 2,000 now. Lupus, Crohn’s, MM, Alzheimers, Evans Syndrome, Cystatin-C, Gelsolin and so many other disorders are part of this family and can spring from the hATTRwt protein. Now the punch line. Amyloidosis is also called, by many in America (including Mayo-Rochester) and by most of the world, a Mixed Connective Tissue Disease. Both are Protein disorders, systemic to the entire body or localized to a few tissues. There are many diagnostic procedures at play in the stronger clinics and labs such as Mayo-Rochester, ARUP in Salt Lake City, Sloan-Kettering, Brigham and Women’s. SERUM FreeLightChain (Bindings UK), 24 hour urinary protein collection and assay, and a bunch more. Although it is an autoimmune disorder, very rare are the Rheumatologists who know how to dX it. Almost all the work is done by Hematologist, and an occasional Cardiologist.

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