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Light chain deposition disease (LCDD) info?
Is there a forum thread with information about light chain deposition disease (LCDD)? I had a kidney biopsy and was diagnosed with LCDD. I had achieved a sCR in November 2012 and get my kappa free light chains checked every month or 6 weeks, but I don't know much about LCDD.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Light chain deposition disease (LCDD) info?
Here a a couple of links.
The second link is kind of "technical", but it discusses the effect of light chain deposition on end organs such as the kidneys. I had a kidney biopsy in March, which was clear, but in August, my light chains had jumped from 1200 to 5000. My oncologist ordered a bone marrow biopsy, which showed 90% plasma cells, so now I am on the RVD chemo.
http://www.unckidneycenter.org/kidneyhealthlibrary/lightchain.html
http://emedicine.medscape.com/article/202585-overview
The second link is kind of "technical", but it discusses the effect of light chain deposition on end organs such as the kidneys. I had a kidney biopsy in March, which was clear, but in August, my light chains had jumped from 1200 to 5000. My oncologist ordered a bone marrow biopsy, which showed 90% plasma cells, so now I am on the RVD chemo.
http://www.unckidneycenter.org/kidneyhealthlibrary/lightchain.html
http://emedicine.medscape.com/article/202585-overview
Re: Light chain deposition disease (LCDD) info?
Thanks, Jim, for giving Cathy some feedback.
Cathy - There was an extended discussion about light chain deposition disease here in the forum a little more than a year ago. You'll probably find some useful information and perspectives in it:
"Light Chain Deposition Disease (LCDD) & Multiple Myeloma," Beacon forum discussion started May 5, 2013.
Also, Beacon Medical Advisor Dr. Peter Voorhees shared some thoughts on LCDD in this post from a thread that you may recall.
(Go back to the beginning of the thread in which Dr. Voorhees's post appears, and you'll see the reason for the emoticon.)
Finally, there was review of light chain deposition disease published about two years ago that you might find helpful.
VH Jimenez-Zepeda, "Light chain deposition disease: novel biological insights and treatment advances," International Journal of Laboratory Hematology, August 2012, Volume 34, Issue 4, pages 347–355 (full text online)
Cathy - There was an extended discussion about light chain deposition disease here in the forum a little more than a year ago. You'll probably find some useful information and perspectives in it:
"Light Chain Deposition Disease (LCDD) & Multiple Myeloma," Beacon forum discussion started May 5, 2013.
Also, Beacon Medical Advisor Dr. Peter Voorhees shared some thoughts on LCDD in this post from a thread that you may recall.
(Go back to the beginning of the thread in which Dr. Voorhees's post appears, and you'll see the reason for the emoticon.)Finally, there was review of light chain deposition disease published about two years ago that you might find helpful.
VH Jimenez-Zepeda, "Light chain deposition disease: novel biological insights and treatment advances," International Journal of Laboratory Hematology, August 2012, Volume 34, Issue 4, pages 347–355 (full text online)
Re: Light chain deposition disease (LCDD) info?
Thank you for this question and the links. I also have light chain deposition disease caused by kappa light chain multiple myeloma.
After reading the various articles, one thing stuck out to me. LCDD can cause the light chains to deposit on the nervous system, resulting in peripheral neuropathy.
The neuropathy that I have in my feet was diagnosed as idiopathic. I now believe it to more likely be caused by my LCDD. I knew that there was a link between my multiple myeloma and my PN, but, other than the effects of Velcade, no search really turned up anything.
My nephrologist pushed hard for me to have me get a stem cell transplant (SCT), since this is one of the most effective ways to get LCDD under control.
My last appointment with him was a good one. There is no sign of any blood or protein present in my urine, and my blood test was, for the most part, normal.
My neuropathy has not progressed any further, and any pain is mostly controlled by taking a vitamin B complex. I say mostly because, if I'm on my feet for extended periods, my feet start to rebel and it can take a couple of days for it to back off. It isn't incapacitating, but it is painful.
I'll stay on the vitamin B, however, since the list of possible side effects of Lyrica doesn't thrill me. The side effects of Revlimid are bad enough ...
After reading the various articles, one thing stuck out to me. LCDD can cause the light chains to deposit on the nervous system, resulting in peripheral neuropathy.
The neuropathy that I have in my feet was diagnosed as idiopathic. I now believe it to more likely be caused by my LCDD. I knew that there was a link between my multiple myeloma and my PN, but, other than the effects of Velcade, no search really turned up anything.
My nephrologist pushed hard for me to have me get a stem cell transplant (SCT), since this is one of the most effective ways to get LCDD under control.
My last appointment with him was a good one. There is no sign of any blood or protein present in my urine, and my blood test was, for the most part, normal.
My neuropathy has not progressed any further, and any pain is mostly controlled by taking a vitamin B complex. I say mostly because, if I'm on my feet for extended periods, my feet start to rebel and it can take a couple of days for it to back off. It isn't incapacitating, but it is painful.
I'll stay on the vitamin B, however, since the list of possible side effects of Lyrica doesn't thrill me. The side effects of Revlimid are bad enough ...
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Light chain deposition disease (LCDD) info?
Thank you Jimskayak and Beacon Staff for the links! I "get" 
your emoticon winking because I had been part of the discussion about LCDD 2 years ago.
What a trip down memory lane to read my posts right after I was diagnosed and before my autoSCT. It was very helpful to read the links you sent and review earlier discussion of LCDD.
It was reassuring that treating multiple myeloma is treating LCDD.
Amazing, Cooperhawk had renal function go down to 12% and so glad that it rebounded to 35% and has stabilized for 2.5 years. Mine went down to 20% and is back to about 40%
Interesting to read Covela, as an analytical chemist, who got frustrated with the labs not being consistent in their measurements. He included an equation for figuring out your eGFR, but I am glad my lab figures it out and prints it on my reports
I appreciated Blackbird's careful reading of the articles to realize that neuropathy could be caused by LCDD. I have some neropathy in my feet still, but it has gotten better.
I had an my appointment with nephrologist today, but the lab contaminated my blood and urine sample and didn't tell me in time for me to have it re-done, which was frustrating.
My nephrologist looked at trends and labs from August and said he likes the trend. I have a blood test Monday September 29, 2014 for my oncologist, and will get the nephrologist orders done at that time as well as my light chains. Seems sort of a waste of a doctors appointment not to even have labs to discuss when I saw him.
But he is always encouraging. He has been very encouraging about my low carb diet (It is not high protein, it is higher fat) and we discussed the news article about how artificial sweeteners seem to disrupt intestinal flora. He asked which probiotics I take and I told him that my infectious disease doctor wanted me to just start with Culturelle and stay with that for awhile (which I did), then I added the Sams Club or Walgreen knock off of Align and, if I got diarrhea even with those, I took "Healthy Trinity" and recently started occasionally taking Saccharomyces boulardii. I want to stress that if you have just had a SCT you should not take all of those - you can start with Culturelle and then later add the others if you want.
I told him I had cut my thyroid pills in half after reading an article in the Myeloma Beacon and he said he would test my intact parathyroid hormone in January. He said thyroid function changes gradually and it would take about 6 weeks to see what the result of taking 1/2 as much levothyroxine will be, but said do not completely quit or I could get sick.
your emoticon winking because I had been part of the discussion about LCDD 2 years ago.What a trip down memory lane to read my posts right after I was diagnosed and before my autoSCT. It was very helpful to read the links you sent and review earlier discussion of LCDD.
It was reassuring that treating multiple myeloma is treating LCDD.
Amazing, Cooperhawk had renal function go down to 12% and so glad that it rebounded to 35% and has stabilized for 2.5 years. Mine went down to 20% and is back to about 40%
Interesting to read Covela, as an analytical chemist, who got frustrated with the labs not being consistent in their measurements. He included an equation for figuring out your eGFR, but I am glad my lab figures it out and prints it on my reports
I appreciated Blackbird's careful reading of the articles to realize that neuropathy could be caused by LCDD. I have some neropathy in my feet still, but it has gotten better.
I had an my appointment with nephrologist today, but the lab contaminated my blood and urine sample and didn't tell me in time for me to have it re-done, which was frustrating.
My nephrologist looked at trends and labs from August and said he likes the trend. I have a blood test Monday September 29, 2014 for my oncologist, and will get the nephrologist orders done at that time as well as my light chains. Seems sort of a waste of a doctors appointment not to even have labs to discuss when I saw him.
But he is always encouraging. He has been very encouraging about my low carb diet (It is not high protein, it is higher fat) and we discussed the news article about how artificial sweeteners seem to disrupt intestinal flora. He asked which probiotics I take and I told him that my infectious disease doctor wanted me to just start with Culturelle and stay with that for awhile (which I did), then I added the Sams Club or Walgreen knock off of Align and, if I got diarrhea even with those, I took "Healthy Trinity" and recently started occasionally taking Saccharomyces boulardii. I want to stress that if you have just had a SCT you should not take all of those - you can start with Culturelle and then later add the others if you want.
I told him I had cut my thyroid pills in half after reading an article in the Myeloma Beacon and he said he would test my intact parathyroid hormone in January. He said thyroid function changes gradually and it would take about 6 weeks to see what the result of taking 1/2 as much levothyroxine will be, but said do not completely quit or I could get sick.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Light chain deposition disease (LCDD) info?
Antelope,
What article led you to think that you could or should cut your dose of levothryroxine if you have multiple myeloma? I'd be curious to read this.
What article led you to think that you could or should cut your dose of levothryroxine if you have multiple myeloma? I'd be curious to read this.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Light chain deposition disease (LCDD) info?
Multibilly,
I think Cathy is referring to the studies listed in this forum thread:
"Thyroid hormones and multiple myeloma," Beacon forum thread started Sep 20, 2014
The postings there also mention an earlier thread where some of the studies came up.
I think Cathy is referring to the studies listed in this forum thread:
"Thyroid hormones and multiple myeloma," Beacon forum thread started Sep 20, 2014
The postings there also mention an earlier thread where some of the studies came up.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Light chain deposition disease (LCDD) info?
Thanks Boris. I will respond to that thread rather than post here. Suffice it to say that I can't see my GP agreeing to cut my levothroxine dose without some really good cause and a lot of monitoring.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Light chain deposition disease (LCDD) info?
I was not clear about why I cut my levothyroxine (Synthroid) dosage and I didn't mean to encourage others to do that.
When I was at the Colorado Blood Cancer Institute in 2012, my multiple myeloma doctor said he did not think I needed thyroid meds. I had been on 50 mcg since 2010, when my thyroid activity went way up and then went below normal. My GP had asked at that time if I wanted to wait and see if my thyroid would stabilize at a normal point without meds but I went ahead with the 50 mcg of levothyroxine.
Boris is right that I read the article on Myeloma Beacon that was linked - and I noted that the Beacon Staff emphasized that there may be an association but not causation between synthetic thyroid hormones and multiple myeloma.
I was not advising anyone else to cut their thyroid meds in half.
When I struggled to get over C. diff for 6 months, the doctors kept prescribing expensive meds, and the last one (Vancomycin) I had to wake up every few hours at night to take. I like, respect, and appreciate my doctors and I follow their orders very carefully, but I was not getting well and I was starting to panic. That is when I first started doing as much research online as I could -- to find a way to help myself get well. It is "complementary medicine", not "alternative medicine". I found that in Canada they actually prescribed probiotics for C. diff. I started taking a more active role in my health. My diet was another "experiment" that has worked for me. I also weaned myself off omeprazole (Prilosec, Losec) this summer, and I feel better.
Maybe I will find I need to increase the thyroid meds again, but I asked my doctor if it would be OK for me to lower the dose as an experiment. He said that was fine.
When I was at the Colorado Blood Cancer Institute in 2012, my multiple myeloma doctor said he did not think I needed thyroid meds. I had been on 50 mcg since 2010, when my thyroid activity went way up and then went below normal. My GP had asked at that time if I wanted to wait and see if my thyroid would stabilize at a normal point without meds but I went ahead with the 50 mcg of levothyroxine.
Boris is right that I read the article on Myeloma Beacon that was linked - and I noted that the Beacon Staff emphasized that there may be an association but not causation between synthetic thyroid hormones and multiple myeloma.
I was not advising anyone else to cut their thyroid meds in half.
When I struggled to get over C. diff for 6 months, the doctors kept prescribing expensive meds, and the last one (Vancomycin) I had to wake up every few hours at night to take. I like, respect, and appreciate my doctors and I follow their orders very carefully, but I was not getting well and I was starting to panic. That is when I first started doing as much research online as I could -- to find a way to help myself get well. It is "complementary medicine", not "alternative medicine". I found that in Canada they actually prescribed probiotics for C. diff. I started taking a more active role in my health. My diet was another "experiment" that has worked for me. I also weaned myself off omeprazole (Prilosec, Losec) this summer, and I feel better.
Maybe I will find I need to increase the thyroid meds again, but I asked my doctor if it would be OK for me to lower the dose as an experiment. He said that was fine.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Light chain deposition disease (LCDD) info?
Thanks for the important clarification Cathy! Best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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