Forums
Re: Fenofibrate (Tricor) and multiple myeloma
That's cool. Thanks for posting that Mike!
-
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 thought I would post my most recent lab numbers. My numbers are still holding steady as I approach my 5 year smoldering myeloma diagnosis anniversary on November 1 and I continue on the same supplements and drugs that I was on before.
As an experiment with the blessing of my GP, I also started to also take 5 mg amiloride once a day a few weeks ago based on the very preliminary research mentioned in this forum thread:
"Amiloride - a diuretic to treat multiple myeloma?" (started Aug 12, 2017)
However, I suspended use of the amiloride after a couple of weeks since I am experiencing some "idiopathic (unexplained) sudden hearing loss" in one of my ears.
A subsequent MRI doesn't indicate that my hearing loss was due to the amiloride. You would expect to see signs of ischemia (tissue/organ damage from low blood-supply) resulting from ultra low-blood pressure in the inner ear if amiloride were the culprit. It looks instead like I was probably hit by some sort of virus in my inner ear. But my hearing is not recovering in spite of being on an oral steroid (prednisone), intra-typmannic steroidal injections (dex injected through the ear drum) and oral Acyclovir antiviral treatments. In any case,I can now relate to how folks on this forum hate being on a corticosteroid.
The hearing loss is not too bad and hopefully it will just reconcile itself in a few weeks, or I guess I will just learn to live with it. The good news is that my hearing loss is not due to any sort of extramedullary myeloma disease, which was the nasty worst-case scenario I dreamt up while sitting in the MRI machine earlier this week.
As an experiment with the blessing of my GP, I also started to also take 5 mg amiloride once a day a few weeks ago based on the very preliminary research mentioned in this forum thread:
"Amiloride - a diuretic to treat multiple myeloma?" (started Aug 12, 2017)
However, I suspended use of the amiloride after a couple of weeks since I am experiencing some "idiopathic (unexplained) sudden hearing loss" in one of my ears.
A subsequent MRI doesn't indicate that my hearing loss was due to the amiloride. You would expect to see signs of ischemia (tissue/organ damage from low blood-supply) resulting from ultra low-blood pressure in the inner ear if amiloride were the culprit. It looks instead like I was probably hit by some sort of virus in my inner ear. But my hearing is not recovering in spite of being on an oral steroid (prednisone), intra-typmannic steroidal injections (dex injected through the ear drum) and oral Acyclovir antiviral treatments. In any case,I can now relate to how folks on this forum hate being on a corticosteroid.
The hearing loss is not too bad and hopefully it will just reconcile itself in a few weeks, or I guess I will just learn to live with it. The good news is that my hearing loss is not due to any sort of extramedullary myeloma disease, which was the nasty worst-case scenario I dreamt up while sitting in the MRI machine earlier this week.
- iggv2.png (27.88 KiB) Viewed 3485 times
- mspikev2.png (32.47 KiB) Viewed 3485 times
- lambdaflcv2.png (39.99 KiB) Viewed 3485 times
- lambdakapparatiov2.png (39.16 KiB) Viewed 3485 times
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fenofibrate (Tricor) and multiple myeloma
Hi Multibilly,
I woke up one morning in 2006 with sudden tinnitus in my left ear, along with hearing loss. A course of prednisone did not clear it up, and an MRI showed nothing. The diagnosis was idiopathic hearing loss and tinnitus,
However, another ear specialist I saw a year later ordered an MRI with contrast (contrast was not specified for my initial MRI).
With contrast, the MRI showed a tumor in my nasopharynx, which turned out to be benign.
I learned that these kinds of benign tumors are common and an MRI with contrast is recommended to detect them. If you remove them quickly enough once symptoms start, the symptoms can clear up.
In my case, the tumor was not detected for a year, and my hearing loss and tinnitus persisted.
I woke up one morning in 2006 with sudden tinnitus in my left ear, along with hearing loss. A course of prednisone did not clear it up, and an MRI showed nothing. The diagnosis was idiopathic hearing loss and tinnitus,
However, another ear specialist I saw a year later ordered an MRI with contrast (contrast was not specified for my initial MRI).
With contrast, the MRI showed a tumor in my nasopharynx, which turned out to be benign.
I learned that these kinds of benign tumors are common and an MRI with contrast is recommended to detect them. If you remove them quickly enough once symptoms start, the symptoms can clear up.
In my case, the tumor was not detected for a year, and my hearing loss and tinnitus persisted.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Fenofibrate (Tricor) and multiple myeloma
Congratulations, Multibilly, on your steady M-spike and free light chain ratio. That's great news!
Re: Fenofibrate (Tricor) and multiple myeloma
Thanks Mr. PH for your thoughts on your hearing loss. My MRI involved scanning me both with and without gadolinium contrast. But I am going to have a good friend of mine in the radiology business have his team take a look at my MRI results just to make sure that my ENT and radiologist didn't miss anything.
And thanks for your well wishes TerryH!
And thanks for your well wishes TerryH!
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fenofibrate (Tricor) and multiple myeloma
Sorry to hear about the hearing loss, Multibilly and Mr. PH. Last year I had an incident of tinnitus and actually had a strange episode of what I would call 'hearing enhancement', where a faint sound would be very loud! This happened after air travel, though, having stuffed sinuses, and changing elevation by about 3000 feet (went from Calgary to Arizona and back). Eventually it cleared up, and a test with a 'tuning fork' instrument indicated I had not lost hearing in the higher ranges. It was really unnerving, though. and gave me an insight into how people suffer with permanent tinnitus. I was not taking any myeloma therapy at the time, so I don't think it related to those medications.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Fenofibrate (Tricor) and multiple myeloma
So, my latest test results are a stunning surprise to me, to say the least.
My M-spike and my total IgG level have dropped dramatically, my total protein level is in the normal range for the first time, and my lambda free light chain (FLC) level and lambda-kappa free light chain ratio are now normal for the first time since I was diagnosed 6 years ago (my smoldering myeloma is of the IgG Lambda isotype variety). My kappa FLC level is slightly out of range and high for the first time (again, I’m IgG lambda, so this is kind of weird).
Also, my IgA and IgM levels have picked up quite a bit and reached all-time highs for me (they were previously in the lower 25% band of normal, but are still well within normal levels). And my hemoglobin, calcium and creatinine levels all moved in the correct directions rather decidedly.
This may all be one big lab error, but it’s peculiar that all of my markers made such dramatic moves. The only thing I’ve done differently recently is to switch from taking 1.8 g theracurmin + 10 mg bioperine twice a day to taking 2 g of C3 curcumin with 40 mg bioperine twice a day. I’m incredulous that this is the cause for the changes in my numbers, and I’m in no way implying that this curcumin formulation is the reason for the change in my numbers.
Maybe this all good news? Or maybe I’m catching a transition to a major isotype switch in midstream? Who knows? We will see what my next test brings in a couple of months.
My M-spike and my total IgG level have dropped dramatically, my total protein level is in the normal range for the first time, and my lambda free light chain (FLC) level and lambda-kappa free light chain ratio are now normal for the first time since I was diagnosed 6 years ago (my smoldering myeloma is of the IgG Lambda isotype variety). My kappa FLC level is slightly out of range and high for the first time (again, I’m IgG lambda, so this is kind of weird).
Also, my IgA and IgM levels have picked up quite a bit and reached all-time highs for me (they were previously in the lower 25% band of normal, but are still well within normal levels). And my hemoglobin, calcium and creatinine levels all moved in the correct directions rather decidedly.
This may all be one big lab error, but it’s peculiar that all of my markers made such dramatic moves. The only thing I’ve done differently recently is to switch from taking 1.8 g theracurmin + 10 mg bioperine twice a day to taking 2 g of C3 curcumin with 40 mg bioperine twice a day. I’m incredulous that this is the cause for the changes in my numbers, and I’m in no way implying that this curcumin formulation is the reason for the change in my numbers.
Maybe this all good news? Or maybe I’m catching a transition to a major isotype switch in midstream? Who knows? We will see what my next test brings in a couple of months.
- IgG.png (26.68 KiB) Viewed 2340 times
- M-spike.png (37.21 KiB) Viewed 2340 times
- LambdaFLC.png (39.04 KiB) Viewed 2340 times
- LambdaKappaRatio.png (45.65 KiB) Viewed 2340 times
- Hemoglobin.png (40.48 KiB) Viewed 2340 times
- Calcium.png (38.3 KiB) Viewed 2340 times
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fenofibrate (Tricor) and multiple myeloma
Wow, Multibilly, those are amazing results! Celebrate the change for the next few months.
Thanks for your dedication to the forum. Your input has been helpful to so many.
Eileen
Thanks for your dedication to the forum. Your input has been helpful to so many.
Eileen
-
Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Fenofibrate (Tricor) and multiple myeloma
Thanks for the update, Multibilly, and congratulations on the improvement in your lab results.
Have you given any thought to re-doing one or two tests just to check whether there wasn't some sort of mistake? I ask partly because your latest results suggest you have negative amounts of "normal" IgG! (That's assuming your M-spike is completely IgG rather than a mixture of IgG and something else, which, as you know, is something your serum immunofixation test results would tell you about.)
Your M-spike is 1.7 g/dL = 1700 mg/dL
Your total IgG level is approx. 1350 mg/dL if I'm reading your graph correctly.
So your "normal" (non-monoclonal) IgG level is -350 mg/dL (1350 mg/dL - 1700 mg/dL)!
Another reason I'd consider re-testing is that your previous M-spike result was one of the highest you've ever had. It would be nice to know for sure that it hasn't stayed at that level.
Have you given any thought to re-doing one or two tests just to check whether there wasn't some sort of mistake? I ask partly because your latest results suggest you have negative amounts of "normal" IgG! (That's assuming your M-spike is completely IgG rather than a mixture of IgG and something else, which, as you know, is something your serum immunofixation test results would tell you about.)
Your M-spike is 1.7 g/dL = 1700 mg/dL
Your total IgG level is approx. 1350 mg/dL if I'm reading your graph correctly.
So your "normal" (non-monoclonal) IgG level is -350 mg/dL (1350 mg/dL - 1700 mg/dL)!
Another reason I'd consider re-testing is that your previous M-spike result was one of the highest you've ever had. It would be nice to know for sure that it hasn't stayed at that level.
Re: Fenofibrate (Tricor) and multiple myeloma
Hi Terry,
Yeah, I noticed the inconsistency between the M-spike value and total IgG number the day I got the results. I was wondering if anybody on the forum would pick up on that discrepancy? I contacted my local hematologist and asked him if he could contact LabCorp for an explanation.
I am planning on getting re-tested in about six weeks. The reason I'm going to wait is because the half life of IgG is 21 days and I wanted there to be sufficient time for any older IgG paraprotein to largely settle out before I got re-tested (with the hope that my M-spike level might catch up with my lambda FLC number - which has a much shorter half life).
I am both wary and cautiously optimistic about these latest lab results. If I have another inconsistent IgG/M-spike reading with LabCorp, I will likely opt to get re-tested at Quest Diagnostics as well. In any case, I will provide an update in a few weeks.
If my myeloma markers continue to show a dramatic shift after I get my next round of tests, I will share a couple of ideas as to what might have caused that to happen.
Yeah, I noticed the inconsistency between the M-spike value and total IgG number the day I got the results. I was wondering if anybody on the forum would pick up on that discrepancy?
I contacted my local hematologist and asked him if he could contact LabCorp for an explanation.I am planning on getting re-tested in about six weeks. The reason I'm going to wait is because the half life of IgG is 21 days and I wanted there to be sufficient time for any older IgG paraprotein to largely settle out before I got re-tested (with the hope that my M-spike level might catch up with my lambda FLC number - which has a much shorter half life).
I am both wary and cautiously optimistic about these latest lab results. If I have another inconsistent IgG/M-spike reading with LabCorp, I will likely opt to get re-tested at Quest Diagnostics as well. In any case, I will provide an update in a few weeks.
If my myeloma markers continue to show a dramatic shift after I get my next round of tests, I will share a couple of ideas as to what might have caused that to happen.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Return to Treatments & Side Effects