I'll cross my fingers the additional testing confirms that your markers are truly down.
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Re: Fenofibrate (Tricor) and multiple myeloma
Appreciate the follow up, Multibilly. Glad we passed your test!
I'll cross my fingers the additional testing confirms that your markers are truly down.
I'll cross my fingers the additional testing confirms that your markers are truly down.
Re: Fenofibrate (Tricor) and multiple myeloma
Hey Terry,
I gave your suggestion some more thought. Since curiosity now has the better of me and I have an open prescription to get as many myeloma tests as I want for the next year, I decided to go to Quest Diagnostics (instead of LabCorp, where I got my last test done) tomorrow and get an SPEP, IFE, FLC assay and a quantitative immunoglobulin test to see if those lab results were real or not. Should cost me less than $50 and I will know the results in about a week. Stay tuned.
I gave your suggestion some more thought. Since curiosity now has the better of me and I have an open prescription to get as many myeloma tests as I want for the next year, I decided to go to Quest Diagnostics (instead of LabCorp, where I got my last test done) tomorrow and get an SPEP, IFE, FLC assay and a quantitative immunoglobulin test to see if those lab results were real or not. Should cost me less than $50 and I will know the results in about a week. Stay tuned.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fenofibrate (Tricor) and multiple myeloma
I think that makes sense, Multibilly. I would do the same.
I'm very curious as to what the results will be!
I'm very curious as to what the results will be!
Re: Fenofibrate (Tricor) and multiple myeloma
My (now retired) cardiologist actually said out loud that fluorides should come out of drinking water and be replaced with statins. After having a heart artery stent implanted 17 years ago, I refused statins, and he (grumbling) prescribed fenofibrate. I've been on it ever since, daily. It keeps my cholesterol where the docs want it to be, and I've never been aware of any adverse side effects.
However, my myeloma diagnosis came last year, so I would not be a poster child for fenofibrate preventing myeloma, nor could I say that it has had any effect. It may have, but there's no way I can see to measure that without discontinuing all treatment and then experimenting (not an option!). Perhaps it helps fight the cancer, but primarily it does the job it was prescribed for. Avoiding statins was reason enough to take it!
However, my myeloma diagnosis came last year, so I would not be a poster child for fenofibrate preventing myeloma, nor could I say that it has had any effect. It may have, but there's no way I can see to measure that without discontinuing all treatment and then experimenting (not an option!). Perhaps it helps fight the cancer, but primarily it does the job it was prescribed for. Avoiding statins was reason enough to take it!
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albertlannon - Name: Albert Lannon
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June, 2017
- Age at diagnosis: 79
Re: Fenofibrate (Tricor) and multiple myeloma
Well, I got my latest test results back from Quest Diagnostics today. It would appear that my previous test results from LabCorp were all off, in a big way.
I'm not sure how a lab could be so off across so many tests unless they had somehow switched my blood samples with somebody else's, or my blood samples somehow got compromised in transit or at the lab.
Anyway, the lesson here is not to jump to any conclusions based on just one set of lab results (which we say time and again on this forum). While I knew this could be the case and that my previous numbers might be too good to be true, I have to admit that I was hopeful that the earlier numbers were indeed correct. Oh well. At least my numbers seem to be holding steady, and for that I am thankful.
I will be tossing that last set of LabCorp data readings and wondering if somebody out there is freaking out about seeing a significant deterioration in their numbers based on my blood samples?
Data points in red are from most recent Quest Diagnostics lab test on October 24, 2018. All data points in blue are from earlier LabCorp tests.
I'm not sure how a lab could be so off across so many tests unless they had somehow switched my blood samples with somebody else's, or my blood samples somehow got compromised in transit or at the lab.
Anyway, the lesson here is not to jump to any conclusions based on just one set of lab results (which we say time and again on this forum). While I knew this could be the case and that my previous numbers might be too good to be true, I have to admit that I was hopeful that the earlier numbers were indeed correct. Oh well. At least my numbers seem to be holding steady, and for that I am thankful.
I will be tossing that last set of LabCorp data readings and wondering if somebody out there is freaking out about seeing a significant deterioration in their numbers based on my blood samples?
Data points in red are from most recent Quest Diagnostics lab test on October 24, 2018. All data points in blue are from earlier LabCorp tests.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fenofibrate (Tricor) and multiple myeloma
Interesting that you received what you believe to be more reliable results from Quest than LabCorp. I had always understood that LabCorp was more reliable. It does raise the more general question of the reliability of commercial labs versus hospital affiliated labs. I have always used the lab of the teaching hospital system where I have received my treatment so I cannot comment on the issue from personal experience.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Fenofibrate (Tricor) and multiple myeloma
Hi Andrew,
I don't know if one lab is more reliable than another. But I do know that the last set of numbers from LabCorp was suspicious since my M-spike was larger than my total IgG (as Terry pointed out). I therefore wanted to use a different lab for a reality check in case there was an equipment malfunction at LabCorp. However, I remember this same lab M-spike / IgG inconsistency once happening to me before with Quest.
I'm guessing this is a one-time event and I will probably go back to using LabCorp since I find their lab reports to be a bit more comprehensive. My oncologist's hospital lab farms a fair amount of their work out to Quest and also does some testing internally. My GP uses LabCorp and has a satellite office in his facility. But I just find it easier to go directly to an independent LabCorp or Quest lab in town and simply bypass the doctor's offices altogether. That way I get the results directly without having my doctor or the facility controlling their release to one of their portals or holding the reports ransom until my doctor discusses the lab results with me.
If my numbers look steady, I don't even bother going in to see my oncologist to discuss the results any more (and he's cool with that, given our relationship). But if there is some worrisome variance in my lab numbers or I haven't seen my oncologist in say 9-12 months, or if I'm due to get some imaging, then I go in and see him. This saves me a fair amount on office visit copays and works because I'm only smoldering and I'm not getting any treatment.
My oncologist's only advice to me regarding this practice was to stick with one lab since LabCorp and Quest have different reference ranges and use different equipment to run the tests. In this case, the Quest and third-to-last test results from LabCorp seem to generally agree.
This is an interesting article on LabCorp versus Quest. It also references the now infamous Theranos company. If you don't know the scandalous and lurid story about Theranos, you should. The story is now chronicled in the book "Bad Blood: Secrets and Lies in a Silicon Valley Startup", which will soon be turned into a movie.
https://www.mountsinai.org/about/newsroom/2016/mount-sinai-researchers-assess-accuracy-of-commercially-available-lab-tests
I don't know if one lab is more reliable than another. But I do know that the last set of numbers from LabCorp was suspicious since my M-spike was larger than my total IgG (as Terry pointed out). I therefore wanted to use a different lab for a reality check in case there was an equipment malfunction at LabCorp. However, I remember this same lab M-spike / IgG inconsistency once happening to me before with Quest.
I'm guessing this is a one-time event and I will probably go back to using LabCorp since I find their lab reports to be a bit more comprehensive. My oncologist's hospital lab farms a fair amount of their work out to Quest and also does some testing internally. My GP uses LabCorp and has a satellite office in his facility. But I just find it easier to go directly to an independent LabCorp or Quest lab in town and simply bypass the doctor's offices altogether. That way I get the results directly without having my doctor or the facility controlling their release to one of their portals or holding the reports ransom until my doctor discusses the lab results with me.
If my numbers look steady, I don't even bother going in to see my oncologist to discuss the results any more (and he's cool with that, given our relationship). But if there is some worrisome variance in my lab numbers or I haven't seen my oncologist in say 9-12 months, or if I'm due to get some imaging, then I go in and see him. This saves me a fair amount on office visit copays and works because I'm only smoldering and I'm not getting any treatment.
My oncologist's only advice to me regarding this practice was to stick with one lab since LabCorp and Quest have different reference ranges and use different equipment to run the tests. In this case, the Quest and third-to-last test results from LabCorp seem to generally agree.
This is an interesting article on LabCorp versus Quest. It also references the now infamous Theranos company. If you don't know the scandalous and lurid story about Theranos, you should. The story is now chronicled in the book "Bad Blood: Secrets and Lies in a Silicon Valley Startup", which will soon be turned into a movie.
https://www.mountsinai.org/about/newsroom/2016/mount-sinai-researchers-assess-accuracy-of-commercially-available-lab-tests
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fenofibrate (Tricor) and multiple myeloma
Well, that's a bummer Multibilly. I figured something wasn't quite kosher given the disagreement between your M-spike and your IgG level. However, I didn't expect all the results basically to be wrong (and I certainly was hoping that your M-spike truly had come down).
I do appreciate your updating all of us on what you found, and it really is a lesson not to base any decisions or expectations on a single set of results, especially when the results are not in line with previous trends.
I do appreciate your updating all of us on what you found, and it really is a lesson not to base any decisions or expectations on a single set of results, especially when the results are not in line with previous trends.
Re: Fenofibrate (Tricor) and multiple myeloma
Hello All,
I have been following this thread for a while and have been encouraging my husband to try fenofibrate, as it seems that he is starting to relapse 5 years after treatment and a stem cell transplant. I now wanted to share a “watch-out” after our experience.
His primary care doctor put Matt on this medication for his triglycerides last summer. His numbers have continued to increase. The loss of function of his kidneys became a key focus starting last November. Matt’s myeloma seems to impact his kidneys, at least it did the first time around. Our local doctors were encouraging us to start treatment quickly assuming increasing myeloma was the cause. Matt was considered to be at Stage 3 kidney disease.
Our doctors at Mayo were also concerned and did the full array of tests and told us that for some patients, fenofibrate has a detrimental effect on the kidneys. They stopped the fenofibrate and in 10 days, Matt’s creatinine went from 1.45 to 1.15 and his eGFR went from 53 to 71!
Net, we are back to waiting and watching for a little while again for now. We know the myeloma will still need to be dealt with soon, but we now have more options available to us with healthy kidneys.
Thought this might be of interest to others too!
I have been following this thread for a while and have been encouraging my husband to try fenofibrate, as it seems that he is starting to relapse 5 years after treatment and a stem cell transplant. I now wanted to share a “watch-out” after our experience.
His primary care doctor put Matt on this medication for his triglycerides last summer. His numbers have continued to increase. The loss of function of his kidneys became a key focus starting last November. Matt’s myeloma seems to impact his kidneys, at least it did the first time around. Our local doctors were encouraging us to start treatment quickly assuming increasing myeloma was the cause. Matt was considered to be at Stage 3 kidney disease.
Our doctors at Mayo were also concerned and did the full array of tests and told us that for some patients, fenofibrate has a detrimental effect on the kidneys. They stopped the fenofibrate and in 10 days, Matt’s creatinine went from 1.45 to 1.15 and his eGFR went from 53 to 71!
Net, we are back to waiting and watching for a little while again for now. We know the myeloma will still need to be dealt with soon, but we now have more options available to us with healthy kidneys.
Thought this might be of interest to others too!
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Fenofibrate (Tricor) and multiple myeloma
I haven't updated my lab results in a while, so here goes. I'm still taking fenofibrate and curcumin and my lab numbers are still holding pretty steady. I also plan to get a whole body MRI in the next couple of months as part of my routine imaging routine (I've learned on this forum never to forego routine imaging even if your lab numbers are holding steady).
In any case, I'm thankful for these results as I come up on my seven-year anniversary of my smoldering multiple myeloma diagnosis.
In any case, I'm thankful for these results as I come up on my seven-year anniversary of my smoldering multiple myeloma diagnosis.
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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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