My name is Susie and I live near Cleveland, OH. I'm not entirely sure where I am on this MGUS/multiple myeloma journey, and hoped to maybe get some ideas or suggestions of things to consider at this point. The M-protein was first discovered in 2005 with a level of .5 It was determined that I had IgG lambda MGUS and that it would more than likely not advance to anything concerning due to my age at the time (41) and the low numbers. Fast forward to yesterday, 5/17/16. Here are some of my current numbers:
IgG 2180 mg/dL
IgA 51 mg/dL
IgM 39 mg/dL
M-Spike 1.35 g/dL
Bone Marrow (2014) 5%
Kappa FLC, serum 12.2mg/L
Lambda FLC, serum 34.9 mg/L
K/L light chain ratio, free, serum, .35 (ref for my lab .67-1.72)
HGB 13.9
Creatinine 1
eGFR 62
Calcium 9.1
Due to the decreasing antibodies, and that I've been battling repeated sinus infections and shingles recently, my doctor is sending me to an immunologist to see if I'd be a candidate for IVIg infusions to help my body fight infections moving forward. He suggested that my body isn't going to be able to make or hang on to the antibodies that I'll need to fight infections and that I will not get the IgA or IgM back through the IVIg infusions, just receive extra antibody support to help my body fight better. He also said I would not get another bone marrow biopsy until the eGFR reaches 45, at which point we'd check the plasma count again. He said I'm still considered MGUS and will see me again in 6 months.
I have gone gluten-free, eliminated all artificial sweeteners, limit strictly anything sugared, try to do organic for all I can, eliminated almost all dairy other than some grass-fed cow cheese and yogurt, began using strong probiotics, am taking turmeric supplements, using essential oils in the diffuser and topically (love Thieves Oil!!), try to make my own cleaning/body products to eliminate as many chemicals as I can...
If anyone has any suggestions or thoughts on this that might give me some perspectives, that would be very welcomed! He told us that he would project that the "C" word would probably be a contender in about 2 years, which I'm not sure how accurate or dependable that could be, but it certainly gives me a little extra sense of urgency to do whatever I can to fight this monster! Thank you in advance for your thoughts!
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9 posts
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: Looking for ideas/suggestions on MGUS journey
Hi Susie,
I would consider increasing your intake of foods and/or supplements with vitamins A and C and to consider a vitamin D3 supplement. I would also suggest routinely getting some probiotics into your diet by consuming kefir and/or a yogurt with many different cultures (sounds like you are already doing this). You can find a wealth of information on the web regarding the role of vitamins and probiotics on the immune system. If you want to limit your search to more scientific articles and less of the sensational "natural health" pseudo-science websites, you can add "NCBI" to your web search.
You say you take "turmeric supplements". You might want to instead consider taking several grams of curcumin per day. Note that you would have to ingest an impossibly enormous amount of turmeric or turmeric supplements in order to get several grams of the underlying active curcumin compound in turmeric into your system. You can find many threads on curcumin usage on this site. Just use the advanced search function at the top of this page.
Try the above out for awhile and see what happens. There is no guarantee that diet and supplements will overcome the immunosuppressive impact of your MGUS, but I think its worth a shot.
BTW, are you being seen at the Cleveland Clinic?
I would consider increasing your intake of foods and/or supplements with vitamins A and C and to consider a vitamin D3 supplement. I would also suggest routinely getting some probiotics into your diet by consuming kefir and/or a yogurt with many different cultures (sounds like you are already doing this). You can find a wealth of information on the web regarding the role of vitamins and probiotics on the immune system. If you want to limit your search to more scientific articles and less of the sensational "natural health" pseudo-science websites, you can add "NCBI" to your web search.
You say you take "turmeric supplements". You might want to instead consider taking several grams of curcumin per day. Note that you would have to ingest an impossibly enormous amount of turmeric or turmeric supplements in order to get several grams of the underlying active curcumin compound in turmeric into your system. You can find many threads on curcumin usage on this site. Just use the advanced search function at the top of this page.
Try the above out for awhile and see what happens. There is no guarantee that diet and supplements will overcome the immunosuppressive impact of your MGUS, but I think its worth a shot.
BTW, are you being seen at the Cleveland Clinic?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking for ideas/suggestions on MGUS journey
Hi Multibilly,
Thank you for your thoughts! I probably wrote it incorrectly about the turmeric supplement I am taking. Correctly, it is turmeric curcumin containing organic turmeric (Curcuma longa) (root), 500 mg as well as black pepper (BioPerine) (fruit), 5 mg.
Yes, I love kefir as well as kombucha! In my multivitamin that I take daily, I get 5,000 IU of vitamin A, 60 mg vitamin C, and 1,000 IU vitamin D3, giving me 100% or greater the daily values.
My doctor who I am working with is through the Seidman Cancer Center, part of University Hospitals / Case Western Reserve Medical School. I have never worked with the Cleveland Clinic in any of my past health needs. If I had my way and if logistics were more favorable, I would probably like to work with Mayo Clinic, Jacksonville, FL. My current doctor is a myeloma specialist, and I have no major complaints with my journey so far, however, I am at the point where my brain is telling me that there is something more, something different that we can be doing to keep ahead of this battle. It is hard to sit back, watch my health deteriorate visit by visit, and still be told there is nothing we can do but wait until I'm even worse. This is an illogical disease for sure!
Susie
Thank you for your thoughts! I probably wrote it incorrectly about the turmeric supplement I am taking. Correctly, it is turmeric curcumin containing organic turmeric (Curcuma longa) (root), 500 mg as well as black pepper (BioPerine) (fruit), 5 mg.
Yes, I love kefir as well as kombucha! In my multivitamin that I take daily, I get 5,000 IU of vitamin A, 60 mg vitamin C, and 1,000 IU vitamin D3, giving me 100% or greater the daily values.
My doctor who I am working with is through the Seidman Cancer Center, part of University Hospitals / Case Western Reserve Medical School. I have never worked with the Cleveland Clinic in any of my past health needs. If I had my way and if logistics were more favorable, I would probably like to work with Mayo Clinic, Jacksonville, FL. My current doctor is a myeloma specialist, and I have no major complaints with my journey so far, however, I am at the point where my brain is telling me that there is something more, something different that we can be doing to keep ahead of this battle. It is hard to sit back, watch my health deteriorate visit by visit, and still be told there is nothing we can do but wait until I'm even worse. This is an illogical disease for sure!
Susie
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: Looking for ideas/suggestions on MGUS journey
Hi Susie,
My husband is smoldering,and I am considering giving him curcumin with bioperine in it. I have read about long-time smolderers and they are taking 8 grams a day. This would be 16 x 500 mg. Some of them take all 16 at one shot and some take half of them twice a day. I haven't talked to my husband about this yet - as he may not be on board for this. I was hoping I could convince him by asking him to put the capsule contents in some yogurt and then seeing if future blood results show any reduction.
Tomorrow we have our routine follow through with his specialist. This is only our second blood results checkup with this specialist so it may establish his M-spike and light chain pattern which would help determine whether curcumin has any possible effects on future outcomes.
Brandyjoco
My husband is smoldering,and I am considering giving him curcumin with bioperine in it. I have read about long-time smolderers and they are taking 8 grams a day. This would be 16 x 500 mg. Some of them take all 16 at one shot and some take half of them twice a day. I haven't talked to my husband about this yet - as he may not be on board for this. I was hoping I could convince him by asking him to put the capsule contents in some yogurt and then seeing if future blood results show any reduction.
Tomorrow we have our routine follow through with his specialist. This is only our second blood results checkup with this specialist so it may establish his M-spike and light chain pattern which would help determine whether curcumin has any possible effects on future outcomes.
Brandyjoco
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Looking for ideas/suggestions on MGUS journey
I've been meaning to post my experience with curcumin for a few weeks now, and your posts have reminded me to do so.
I've known that I have MGUS since 2013 when my M-spike was 8.5 g/L (0.85 g/dL). I read about curcumin at that time and immediately started taking it. I found that my M-spike seemed to bounce around a lot every three months (from 8.5 g/L to 11.1 g/L, and everywhere in between) for no apparent reason. I finally decided to stop the curcumin because it is really expensive in Vancouver, BC, so I was somewhat concerned that my M-spike would skyrocket with my next blood test.
My M-spike went DOWN to 7.3 g/L (0.73 g/dL) with the check-up after dropping the curcumin (April 2016). That is the lowest my M-spike has ever been. So, I am not convinced that curcumin is right for me. My hematologist / oncologist will test me only every 6 months from now on, so I guess I won't know whether it stays low for quite a while.
I've known that I have MGUS since 2013 when my M-spike was 8.5 g/L (0.85 g/dL). I read about curcumin at that time and immediately started taking it. I found that my M-spike seemed to bounce around a lot every three months (from 8.5 g/L to 11.1 g/L, and everywhere in between) for no apparent reason. I finally decided to stop the curcumin because it is really expensive in Vancouver, BC, so I was somewhat concerned that my M-spike would skyrocket with my next blood test.
My M-spike went DOWN to 7.3 g/L (0.73 g/dL) with the check-up after dropping the curcumin (April 2016). That is the lowest my M-spike has ever been. So, I am not convinced that curcumin is right for me. My hematologist / oncologist will test me only every 6 months from now on, so I guess I won't know whether it stays low for quite a while.
Re: Looking for ideas/suggestions on MGUS journey
Thanks for posting this update, Helen. It would not surprise me if your experience is by no means unusual. It's just that most people who experience something similar probably aren't bothering to post an update. It's human nature to be more inclined to share positive news.
It is worth mentioning that the sort of change in M-spike that you saw isn't really that significant. Sure, it's outside the range of previous readings that you've had. But only slightly.
In any case, I hope your M-spike stays where it is for a long, long time.
It is worth mentioning that the sort of change in M-spike that you saw isn't really that significant. Sure, it's outside the range of previous readings that you've had. But only slightly.
In any case, I hope your M-spike stays where it is for a long, long time.
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Jonah
Re: Looking for ideas/suggestions on MGUS journey
Thank you Brandy, Helen and Jonah for your replies.
I was certainly hopeful that the turmeric / curcumin would help not only my MGUS numbers, but the inflammation/pain I have systemically. I've tried increasing and decreasing the amount I take to see if there is any noticeable effects, but don't seem to notice any changes either way. Because my "good" immunoglobulins are getting so low and because I continue getting sinus infections, my oncologist has me working with an immunologist to see how we can get me protected against even more infections.
This new doctor is also sending me to a rheumatologist to look into rheumatoid arthritis because his thought is that my decreasing immunoglobulins are negatively affecting my rheumatoid factor and test results for RA. This has been a suspected condition for over 15 years and I've had 1 wrist and 4 foot surgeries already for undiagnosed joint destruction. Hopefully this doctor will be able to get some control over the joint/bone pain I constantly have.
MGUS is really quite difficult to understand! I now know that I am IgG lambda MGUS, with the IgG 2 subset being where the MGUS is located. I now know I am only protected against 5 pneumococcal serotypes. I was given the Prevnar pneumonia shot 3 weeks ago and will get the serotype titres drawn again this week to see how my body reacted to that. The immunologist does NOT want to do IVIg therapy unless he has to because he said with my IgG numbers already so high, if he flooded me with even more, I would be at a higher risk of strokes, blood clots, kidney and/or liver damage. Those in the myeloma family already know that our kidneys are to be protected not hurt more!
So this month takes my journey into new, unchartered waters between continuing to see how to keep me protected from infections as well as how to get my joints protected. And I become so easily frustrated and discouraged because at the same time, my "bad" IgG's are driving all my other numbers into the ground and I'm told to sit still and "watch and wait" this thing out. My brain keeps screaming that there has to be something out there somewhere to help me. I just haven't found it yet!
Susie
I was certainly hopeful that the turmeric / curcumin would help not only my MGUS numbers, but the inflammation/pain I have systemically. I've tried increasing and decreasing the amount I take to see if there is any noticeable effects, but don't seem to notice any changes either way. Because my "good" immunoglobulins are getting so low and because I continue getting sinus infections, my oncologist has me working with an immunologist to see how we can get me protected against even more infections.
This new doctor is also sending me to a rheumatologist to look into rheumatoid arthritis because his thought is that my decreasing immunoglobulins are negatively affecting my rheumatoid factor and test results for RA. This has been a suspected condition for over 15 years and I've had 1 wrist and 4 foot surgeries already for undiagnosed joint destruction. Hopefully this doctor will be able to get some control over the joint/bone pain I constantly have.
MGUS is really quite difficult to understand! I now know that I am IgG lambda MGUS, with the IgG 2 subset being where the MGUS is located. I now know I am only protected against 5 pneumococcal serotypes. I was given the Prevnar pneumonia shot 3 weeks ago and will get the serotype titres drawn again this week to see how my body reacted to that. The immunologist does NOT want to do IVIg therapy unless he has to because he said with my IgG numbers already so high, if he flooded me with even more, I would be at a higher risk of strokes, blood clots, kidney and/or liver damage. Those in the myeloma family already know that our kidneys are to be protected not hurt more!
So this month takes my journey into new, unchartered waters between continuing to see how to keep me protected from infections as well as how to get my joints protected. And I become so easily frustrated and discouraged because at the same time, my "bad" IgG's are driving all my other numbers into the ground and I'm told to sit still and "watch and wait" this thing out. My brain keeps screaming that there has to be something out there somewhere to help me. I just haven't found it yet!
Susie
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: Looking for ideas/suggestions on MGUS journey
Have you had your vitamin and iron levels tested?
I was low on B12 and iron. Once I started taking a B complex supplement and eating meat again (after being vegetarian for over 20 years), my recurrent sinus infections went away. I haven't had one since 2014 and before that I was getting them every 5-6 months for two and a half years.
I should mention my doctor goes by European and Japanese reference ranges for B12, which are 500-1300 ng/L. American reference ranges have been cited as being too low.
I was also low on vitamin D and took that for a while. Now I take cod liver oil off and on to get my vitamin D and A as well as drinking carrot juice a few times a week for vitamin A.
I also drink / eat turmeric and ginger several times a week which has almost completely diminished pain in my hips and knees.
I did gluten free for over a year because of stomach problems and it worked, however I discovered it wasn't the gluten that was the problem – it was the added vital gluten that was the problem. Recent research seems to be pointing to the addition of "extra gluten" to make products softer and fuller as the culprit in most cases. However, there are people who no matter what just cannot tolerate gluten.
Insurance usually covers vitamin panels and you can get them done at your regular doctor.
Every person is different. This is just my experience and maybe something in it can help you sort out your sinus infections.
Best Wishes.
I was low on B12 and iron. Once I started taking a B complex supplement and eating meat again (after being vegetarian for over 20 years), my recurrent sinus infections went away. I haven't had one since 2014 and before that I was getting them every 5-6 months for two and a half years.
I should mention my doctor goes by European and Japanese reference ranges for B12, which are 500-1300 ng/L. American reference ranges have been cited as being too low.
I was also low on vitamin D and took that for a while. Now I take cod liver oil off and on to get my vitamin D and A as well as drinking carrot juice a few times a week for vitamin A.
I also drink / eat turmeric and ginger several times a week which has almost completely diminished pain in my hips and knees.
I did gluten free for over a year because of stomach problems and it worked, however I discovered it wasn't the gluten that was the problem – it was the added vital gluten that was the problem. Recent research seems to be pointing to the addition of "extra gluten" to make products softer and fuller as the culprit in most cases. However, there are people who no matter what just cannot tolerate gluten.
Insurance usually covers vitamin panels and you can get them done at your regular doctor.
Every person is different. This is just my experience and maybe something in it can help you sort out your sinus infections.
Best Wishes.
Re: Looking for ideas/suggestions on MGUS journey
I had MGUS for over ten years before I moved up the ladder to stage three myeloma. Since my MGUS started concurrently with the development of neutropenia, anemia, monocytopenia and a chronic lymphoproliferative disorder, it was not my only worry. My MGUS was monitored over the years and had shown slight upward movement until recently. Now I am under treatment.
Initially, ten years ago, when I learned that the transformation rate of MGUS to myeloma was of the order of 1 to 2% per year, I had thought that I could be lucky and would never have to deal with myeloma. However, that was not the case for me.
So what did I do to deal with my MGUS? Nothing specific. Instead I decided to look at the overall quality of my life. I decided to focus on nutritious eating, regular exercise and mental and emotional stimulations. I believe it has worked for me even though my MGUS transformed into something more active.
Be healthy in your ways.
Joseph
Initially, ten years ago, when I learned that the transformation rate of MGUS to myeloma was of the order of 1 to 2% per year, I had thought that I could be lucky and would never have to deal with myeloma. However, that was not the case for me.
So what did I do to deal with my MGUS? Nothing specific. Instead I decided to look at the overall quality of my life. I decided to focus on nutritious eating, regular exercise and mental and emotional stimulations. I believe it has worked for me even though my MGUS transformed into something more active.
Be healthy in your ways.
Joseph
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
9 posts
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