Living with smoldering myeloma

I am a U.S. citizen, born in 1961, married to an Italian, and I live in Florence, Italy. In 1999, I was diagnosed with Monoclonal Gammopathy of Undetermined Significance or MGUS, for short, of the IgG k type. My family doctor did not make it clear to me what MGUS entailed, and that it was important for me to have blood tests done every six months. Or perhaps I didn’t want to hear it then (denial?). At the time, I had two teaching jobs (teaching Italian in the morning and English in the afternoon…), so I had no extra time to do any research about MGUS. I promptly forgot all about it.

Until about four years later.

In 2003, another routine (so I thought) blood test showed that the amount of this abnormal protein in my blood had increased. My GP finally made the implications of MGUS clear to me, and sent me to a haematologist at Florence’s main hospital, Careggi, which has a well-known Haematology Center. I started looking up MGUS on the Internet. I soon had a clear picture of what might lie ahead unless the amount of paraprotein in my blood remained stable.

But it didn’t.

It kept increasing. Slowly but steadily.

My MGUS finally progressed to MM*, or multiple myeloma, in late 2005. I received the MM diagnosis on December 30, based on a BMB (bone marrow biopsy) done in November. At that time, 50 % of my bone marrow was compromised. Even though I had been expecting this progression, I admit that I was shocked to see the words mieloma multiplo (=multiple myeloma, in Italian) printed out on the test result.

Not one of my happiest moments.

*Note: I just realized (July 2010) that I should have explained that, on a formal level, in Italy there is no distinction between “smoldering myeloma” and “full-blown myeloma.” Therefore, even though I am smoldering, my official diagnosis, that is, the one on paper, is “mieloma multiplo.” My family doctor knows very well that I am smoldering; yet, when he has to write my diagnosis on any official documents, for instance my blood test requests, he writes “mieloma.” The diagnosis that is written on all of my test results is “mieloma multiplo.” But “unofficially,” of course, I have smoldering myeloma, not full-blown myeloma.

Update (December 4 2008). No, that was definitely not one of my happiest moments, but things have changed a lot since then. Curcumin entered my life…and with it many other good things…and I have also learned a lot.

I have learned to live day by day and enjoy the small but wonderful things in life that I wouldn’t even have glanced at/considered a few years ago. I have learned to stop and gaze at a beautiful sunset or at flowers blowing in the wind. That really sounds corny but it’s the truth.

I have learned to take life at a slower pace–the best way to enjoy it, in my opinion.

I consider myself very lucky. I have a fantabulous tall dark and handsome life companion (Stefano), loving and supportive family and friends, and, last but not least!, five affectionate and always-ready-to-purr cats. I live in a country that is good to its cancer patients (you don’t risk losing your job and health insurance if you get ill here).

And when I think of how I am now and how I was three years ago, I realize that I am much happier and better off now, as strange as that must seem. I have my blog, which means a whole lot to me. Without my blog, for instance, I would not have met Sherlock and other readers (perhaps not yet in person, but I correspond frequently with many folks now and have met about a handful so far). And if one of my dear blog readers/friends had not suggested that Stefano and I go to Farne Islands in April/May 2008, we would probably not have experienced the joy of having puffins whiz by and over our heads–the most amazing and exciting thing that has ever happened to me. Ah, the list could go on, but basically, life is better now.

Medical update. In January 2007 I had another BMB, which showed 40% neoplastic cells. Not much of a decrease compared to 2005, but I just recently found out from my MM specialist that that percentage is actually lower than 40%. I have no CRAB symptoms. No bone lesions. My MM specialist confirmed last month that I am stable. Yes, my cancer is still inactive.

Update (July 9 2010). Still smoldering, still stable. I have tested many supplements in the past few years, but curcumin is still at the top of my A-list. It is followed by fish oil, quercetin and ashwagandha. My motto is “keep smoldering!” 

Update (March 2014). Still smoldering, still stable, still bird watching, still enjoying life. My motto is still the same! 😉

51 thoughts on “Living with smoldering myeloma

  1. Marilyn Freeman

    Hello Margaret,

    My story is very similar to your. MGUS was seen in 1999 but no one told me what it meant. Spent years feeling awful. In 2006, fractured 4 vertebrae and was treated with kyphoplasties. I was anemic and my IGG was 2990. I was treated with decadron and thalomid for 7 months. I also had radiation on my spine where the thoracic vertebraes fractured. It was a horrible experience. My Igg dropped to around 400 and my dr. said I was in a very good place.

    I adopted a very healthy lifestyle…lots of supplements, fasting, enemas, curcumin etc. I kept it at bay until Nov. 2009. My IGG took a jump to 4300 and my M spike went to 3.3. As much as I didn’t want to do chemo again, the jump scared me. I was not anemic, had no fractures, no renal problems, and no calcium issues. I did feel very fatigued though and also frustrated. They really push the chemo here, but my Doc lets me take the lead on what I am willing to do. SHe felt it was time to act as it was no longer smoldering. So I started on Thalomid and Decadron for three months and then switched to Revlimid and decadron in Feb. 2010. I did not handle the chemo well. I was exhausted most of the time. They dropped the dosage of Revlimid twice, down to 10mg. It was better, but still not fun. The Decadron days were the worst. My quality of life was lousy.

    I have now plateaued. My Igg is 1776 (694 to 1619) above the normal range. and the m spike is 1.2 Dr. felt I needed a rest from the chemo as I was not tolerating it well and I totally agreed to go off the drugs. She would like me to do Zometta every month. I agreed to every other. Do you do Zometta?

    So, what is your take on this?
    If it were you, at this point what would you do?

    I do have pain around my bra line and have for many years…worse since the fractures. It is controlled by Oxcontin 10 mg ER every 8 hours, Neurontin 200 mg every 8 hours, and ativan .25 mg every 8 hours. Because I am so tired I take 200 Mg. Provigil twice a day. I feel like a junkie but it helps with the pain.

    Also, they put me on an antidepressant (pristiq the summer of 2008. It has helped alot. I was really down.

    I want help in knowing what to take in supplements and how much. I have been inconsistent with the Curcumin.

    Any suggestions will be welcomed.

    Is there a difference in the Italian lab tests? Do our numbers seem similar to yours? I know the us may test differently so how can we compare with yours?

    I would love to know how I can gain energy again. My doc says everyone who deals with cancer has energy issues, it’s just the way it is.

    TY again,

    Mariln

    Reply
  2. bill

    Keep smoldering! I was diagnosed in 10/08, smoldering for a year while attempting a US FDA trial but then started chemo in 10/09. I went into near CR after 2 cycles, finished and had my harvest. Been on Rev for 9 cycles (maintenance) and my numbers are keeping down! But I’m w/ you “keep smoldering!”

    Reply
  3. LaLa

    Margaret,

    When you say “50% of [your] bone marrow was compromised” do you mean that your plasma cell count was at 50%?

    Thanks. I’m a similar story: MGUS in 1997, asymptomatic MM by 2008. Scary kappa/lamba ratio. Intense fatigue but trouble sleeping. Otherwise, no real problem.

    Reply
  4. Margaret

    Yes, that is exactly what I meant. In 2007 that percentage went down to less than 40 (%), though. But of course, BMBs are unreliable exams, in the sense that the needle can hit a pocket of MM cells or a relatively empty space…

    Keep on smoldering! :-)

    Reply
  5. Beth A

    Dear Margaret– Glad you are feeling better and fever down.
    I wrote you about PROTOCEL– bought bottle– started taking–after 4 days blood pressure spiked to 180/100-
    called Naturopath and she said to give it 2or3 weeks–
    Did NOT want to do that– SO– am back to 8,000mg/day of Curcumin (Ageless Cures brand caps)–2-6,000mg of AHCC and after next blood test in late March will start Poly-MVA again which I used a few years ago and felt very good while using. Best, Beth

    Reply
  6. Terry

    I was just diagnosed with MM this past week. I found your blog by googling. I am still in a surrealistic nightmare. I am 49 with a lovely wife and two young sons. It was discovered because I am on Lipitor have have a CBC every 6 months to check liver function. They noticed by blood counts were low and a referral to a hemotologist led to a BMB. Tomorrow, I get the results of my bone survey and 24 hour urine test. Your blog gave me a sense of comfort. How are you today? Hope you still smoldering. Regards. Terry from New Jersey

    Reply
  7. Laura

    I was diagnosed recently with smoldering myeloma. I am just starting to learn about what different tests mean, and I appreciate all the posts. I am 58, healthy (I thought), and physically active. I went in for some blood work because I am showing signs of arthritis in my hands and discovered the bad news. I too am in shock and a bit of disbelief. My doctor says to be happy that I found out at an early stage, but I am almost sorry that I had that bloodwork. I go back for more bloodwork in a couple of weeks and I am already stressing. Thanks, Laura

    Reply
  8. Terry

    Hi Laura, how are you. You should consider getting an eval. at the NIH in Bethesda, MD. I don’t know where you live but they reimburse for travel, etc. I went and found out I am smoldering. My local dr. said I needed chemo asap even though my skeletal surveys, MRI/PET are normal. Keep me posted.

    Reply
    1. Barbara

      Hi Terry,
      What meds are you taking. Just diagnosed three weeks ago. Why did you decided to go to MD? Getting the results from the none survey on 3/31/14. Seeing a great doctor at University of Miami. If I decided to go to MD, please give me a doctor I can contact.

      Reply
  9. Laura

    Hi Terry, Thank you for your support. So far, I am considered “smoldering.” My PET scan was normal a few months ago, and I am scheduled for a MRI and blood work next month. My bone marrow biopsy showed 10-15%, which is not too bad according to my doctor. I am trying curcumin, and right now we are just following things. So far I am happy with the doctor, but before I do anything drastic, I will get at least one more opinion. I live in Southern California and have been told that there are some excellent places to go for second and third opinions. Are you trying the curcumin? How often do you go in for blood work? Good luck!

    Reply
  10. Darlene Mellein

    Hi Laura,

    I’m smoldering too in So.California, with a diagnosis only a few months old. At least I hope so, since I worry about it with every test. I’m seeing Dr. Berenson, whom I like very much. But if/when there’s talk of chemo or any other treatment I will get another opinion, maybe at City of Hope.
    I know what you mean about the disbelief. I go from obsessing on myeloma–hours on the internet, reading books, you name it, to once in a while thinking, just for a moment, well, I’ll deal with this until it’s over–& then realizing that it’s not going to be over. I don’t know what it will be (here’s where my imagination doesn’t do me any favors), but I know it won’t be over. I find that even though I’m living my regular life, at least as it looks from the outside, myeloma is an undercurrent that is always there and can sweep me away.
    I’ve had blood tests every 2 months so far, but am hoping it will be stretched to 3. I have IGA Lambda, 20% plasma cells in bone marrow, and my total body x-rays (no MRI’s, PET scans or anything like that) and 24 hour urine tests were clear.
    I wish you the very best with your health and equally with your anxiety over this situation.

    Reply
    1. Hans

      Hello Darlene,
      How are you doing . It.s been a long time since you wrote the post. I hope everything is ok with you. My wife was in smouldering stage for the last 3 years. Last month the Dr felt it needs a treatment now. We kind of shock and started to look the alternatives and among others found Dr Berrington (we are in So. Calif). When I made inquiry, the nurse asked to have new biopsy done before seeing him. We are waiting for the results (biopsy & pet scan) right now. My question is did you see and use him (Dr Berrington) as yor Oncologist? I.ve reading Suzanne Sommers’ book and incline not to have traditional treatment since they said as of this time there is no cure for MM. Please give me some inputs/feedbacks from you and anybody that would be helpful. Thank you. I am glad at least we all could exchange information.
      Hans

      Reply
  11. Stan Wagner

    I was diagnosed with Smoldering Multiple Myeloma in April 2012. The doctor was monitoring my protein levels for the past year. When he saw a jump from 1800 to 2400, he ordered a bone marrow biopsy.
    The plasma cell count is 5%. After reading the posts on this site, it seems like it’s on the low side(compared to others). I’ve had a Pet scan. No lesions but, it shows Osteopenia. I’m 58 and relatively active. I’ve got no symptoms(anemia, etc.).
    I’m confused as to where I’m at (MGUS or SMM)?
    I’ve started taking Green Tea capsules as well as Curcumin.
    Waiting to get a 2nd opinion with a Dr. at Mt. Sinai in NYC.
    Any input is appreciated as I’m confused and stressed.
    Thanks,
    Stan

    Reply
  12. Jerry

    I would like to hear the current status from people like Laura, Darlene, Terry and others who posted here in September. I was diagnosed with SMM back in March and would like to learn all I can from others. I wish for everyone they can stay stable.

    Reply
  13. Penny

    HI all, I am also smoldering. I found out in August 2011. I was in the middle of a divorce and I have 3 young sons. I am 44 and work full time as an attorney. I am pretty terrified and feel very alone. I went to a support group but most of the people were a lot older than I am. My friends don’t really want to talk about it. I am worried about financial decisions e.g. do I really want to continue putting money in my 401K or should I spend on the children’s education? I am moving from West Coast to East Coast to be closer to my doctor at Dana Farber. I wish the best to all of you and am grateful to have found a group of folks who are smoldering. I feel a bit guilty reaching out to people who are dealing with full blown myeloma as I am lucky to be asymptommatic. Can anyone recommend the type of curcumin I should purchase and where I should obtain it? Thanks for your help and I wish you all the best.

    Reply
  14. Stan

    Penny, I understand how you’re feeling. At this point I haven’t mentioned anything to anybody except my brother. My 85 year old Mom shouldn’t have to worry about me.
    My frustration is the doctor saying there isn’t any treatment at this time. My goal is to keep on living the way I’ve been living. It’s in the back of my mind but, I can’t let it get me down.
    Check out the MMRF. They’ve been great. I attended a symposium that featured some of the top doctors in the field. And again, they told me there’s no treatment for me.
    Also look into clinical trials for SMM. There are 4 in my area but, I may not qualify as my plasma cell count and other numbers are not high enough(thankfully).
    I’m looking into an NYU trial using Sea Cucumber.Reading about the treatments for this disease upset me. I can’t see myself dealing with some of the side effects.
    Right now I’m taking 1000 mg of EgcG(green Tea) as well as 8 grams of Curcumin I purchase from Vitacost (Vitacost Turmeric Extract Curcumin C3 Complex® with Bioperine® — 1,160 mg).
    Never was a believer in holistic/natural healing but, when I heard doctors at the symposium mention green tea and read about
    curcumin I quickly changed my mind.
    I want to stay where I am for as long as possible. If not for the rest of my life.
    Good luck to you. Stay positive.

    Reply
  15. Terry from NJ

    Hi Jerry, I saw your email asking how I am doing. Unfortunately, I progressed from SMM to active myeloma last month. What a big bummer!!!I had a pulmonary embolism and was hospitalized five days. My hemoglobin tanked from 12.0 to 9.0—I am a 50 year old guy and I reached CRABlandia pretty hard. I was monitored at both the NIH and UPenn and chose a novel therapy trial at the NIH with carfilzomib under the care of Dr. Landgren. He is not a fan of stem cell transplantation and believes they are way over utilized. He believes carfilzomib has the potential to give me many years of CR w/o the hammer approach of a transplant. The UPenn approach was rev/dex and SCT in about six months. It is a roll of the dice but Landgren is one of the most caring and compassionate persons I have ever met and he spent hours with me and my wife fully explaining his philosophy, etc. I trust him and like his philosophy vis-a-vis SCT’s. I tried everything to halt progression in a dogged, last ditch effort–curcumin, pterosilbene, etc., but, alas, it was difficult to overcome a 60% plasma cell infiltration, immune paresis, exploding FLC’s and that damned embolism. I wish you and all fellow smolderers the best. I also understand that the Dana Farber peptides cocktail trial for SMM will start in two months at Mass General in Boston. Good luck, I hope you smolder forever!

    Reply
    1. Janeice

      Can someone tell me what is NIH and why they went to NIH? I’ve been in the smoldering class for the past 6 years and have never had an MRI/PET. I have had 2-BMB, The 24 hour urine which has shown the Bence Jones Protien and I struggle to keep my calcium levels down while being in a constant battle to increase my vitamin D level. I am fatigued but I also work 7 days a week and my day starts at 4:30 AM. I was told 2 years ago that I might stay in SMM for 30 year, 1 year ago it was 20 years, now they tell me I could go another 5 years without treatment. I drink matcha tea or a matcha smoothie everyday, eat lots of organic vegetables, bok choy everyday keeps the doctor away, stay away from gluten and take curcumim, folate acid and eat plantains to build blood cells. I’m happy to stay smoldering.

      Reply
  16. Terry

    Hi Stan, the peptides cocktail trial will be held at several locations, including Mass General in Boston under the direction of Dr. Raje. It will not be held at Dana Farber as the medication was invented there and there would apparently be a conflict of interest to have it there. The company involved is Oncopep. Call Mass General and ask for the myeloma nurse, Ms. Renaudie. She will provide you with the latest info. Wish I could do the trial instead of the one I am currently in. Unfortunately, myeloma progression waits for no one and it really sneaked up on me. Good luck to all you smolderers…hope you smolder forever. Terry from NJ.

    Reply
  17. Stan

    Thanks Terry.
    I’ve contacted Dr. Landgren regarding trials at NIH being done with SMM/MGUS patients.

    Got a reply from my email in 5 minutes. My Oncologist is sending my files and hopefully the wait will be as speedy as the reply.

    I’ve started the process for a second opinion with Dr. Jagannath at Mt. Sinai.

    Decided to reign in my emotions and calm down. Listen to my doctor and go along with the watching and blood tests every 2 months.

    I was all over the place researching all the SMM trials. I can’t do them all.

    Stay positive.

    Reply
  18. Laura

    Hi Jerry, Darlene, Terry, and Everyone – You were wondering how some of us are doing, and I am about the same. I started taking 7 grams of curcumin daily about 9 months ago, keep a healthy diet (usually) and exercise. My Iga is up a bit from 1324 last September to 1655 last week. My m-spike was 1.44 and is now 1.1. Instead of a 2 month call-back I am now at a 3 month, so my oncologist believes that I am stable. Before my next appointment I am to schedule a Sodium fluoride PET/CT, so already my anxieties are all over the place. Terry, I am praying for success with your treatment plan. Good thoughts and positive energy to everyone. Laura

    Reply
  19. beth

    I am interested in Insulin Resistance (metabolic
    syndrome) and their relationship to Myeloma and growth of myeloma cells.

    It seems a diet low in carbohydrates can help the myeloma patient (ALL–from MGUS, SMM to MM)

    I do not recall ever reading about a Low Carb diet and effect on MM.

    Anyone have info ??

    Thanks

    Reply
    1. Ronald Sanders

      There has been a lot in the literature on low carb diets and how they effect MGUS/Myeloma. You must think of this as an anti-inflammatory diet. It does mean giving up or greatly reducing the comfort foods in our diets. Just correcting being overweight and reducing insulin resistance does many positive things. This is something that we can do regardless of supplements and standard cancer treatment. Many other things like metabolic syndrome,type 2 diabetes, generalized aches and pains etc are improved. Try it you will be amazed.

      Reply
    2. Cathy

      I have MM. I was diagnosed in May 2012 at very bad stage 3 MM and also had Light Chain Deposition Disease (my beta 2 macroglobulin was 8.5 after 2 1/2 months of treatment with Dex, Thalidomide & Velcade) then I had a Bone Marrow Transplant (Stem Cell Transplant) in Nov 2012. It wiped out my bone marrow, but my kappa free light chains were not in good ratio within a few months.

      So, I was on 5 mg Revlamid every other day and then 10 mg Revlamid every other day – and my beta 2 macroglobulin was 6.5 in Nov 2013 – one year after my SCT. (If Beta 2 M is over 5.5 your cancer is considered very active and you are stage 3 MM. Wikipedia says if Beta 2 M is over 4.5 you have prognosis of about 12 months).

      I thank the Lord for my oncologist, though. I asked him if avoiding sugar would help – he said yes, but it is not just the sugar – you also need to keep your blood glucose low and steady. I started and low carb diet and with research transitioned to a ketogenic diet. My cancer markers went into the NORMAL range for several months after that – I still seem to be steady and my kidney numbers have improved amazingly!

      Reply
  20. Nuki

    Hi there/Kia ora from New Zealand :)
    At age 46, I was diagnosed with Smouldering Myeloma in Dec 2004. My doctor was testing me for anaemia and they found an IgG of 32. In response I became macrobiotic. My IgG taken 3 months later had dropped to 24. I remained macrobiotic and I also cut my workload in half, starting having weekly massages, doing yoga twice a week, and monthly shiatsu and personal coaching sessions. Basically, around living my life, I focused on becoming well again. In 2008 I went to Italy for my 50th birthday and discovered the joy of cooking and eating like an Italian and so I began to eat a wider diet. I insisted on having blood test every 3 months. My blood test results fluctuated a little over the years but never got over 24 again…mostly stayed in the 18-22 range, sometimes dropping as low as 17. Always the increases could be tracked to too much stress, and the drops from nice periods of healthy balanced living. In April 2011, my annual visit to the haemotologist revealed that I no longer had any evidence of smouldering myeloma in my body with an IgG of 16.21. I was over the moon and promptly threw myself back into overworking and eating crap! July 2012 tests were a testament to me making up for lost time – IgG 18.4! I had squandered my wellness. I was back to square one :( But, nearly a year later and so thankful that the IgG is back to normal.So fingers, toes and and any other extremities crossed for now.

    Reply
    1. Emma

      Hi Nuki, your post really interested me. I was diagnosed with SMM this week and am very interested in the link between diet/stress/massage etc and myeloma. Are you still following your “healthy balanced living” regime? How is your health at the moment? Best wishes, Emma

      Reply
    2. Marina

      Hi Nuki, your story is particularly amazing as you seem to have turned it all around with lifestyle changes! This is incredible! Did you have any other symptoms when your numbers were so high? I sat at MGUS with a reading of 11 or 12 for 11 years but now it has become MM.. my latest tests show my paraprotein at 25. I have some small lesions along my vertebrae which is a little concerning!! I am hoping to change it before I need the horrific treatment! I hope you are still well! Please update!

      Reply
  21. Robin

    Hi Everyone,
    Just wanted to chime in and say that I have had MGUS and now apparently SMM. I started Protocel 23 last night and will continue my Curcumin and Wobenzym N but discontinue fish oil, D3, etc. for now. I am 46 years old and this had been a tough blow to weather. I will keep you posted!

    Reply
  22. Robin

    I wanted to add, for anyone interested, that my boyfriend (who also has had MM, but has managed to be in remission for eight years) has researched curcumin and believes that the Longvida brand has a high degree of potency. We each take just one capsule twice daily, preferably with some kind of food or meal that has some fat in it. We also take Wobenzym N – from 5-10 pills a day (without food) – depending on how much inflammation seems to be going on at any given time. We have discontinued IP-6 for the time being, since we are not sure if it can be taken in conjunction with the Protocel. So glad this blog is available. Thank you, Margaret, so much.

    Reply
  23. Leigh

    Hi All, I have just moved from MGUS to SMM in the last 2 weeks. I am a 54yr old living in Australia. I am still very confused with my Drs explanation and wondering if anyone can help. I have IGA Kappa SMM and also have monoclonal light chains in my urine. My Dr advised me that I will require treatment within 2 years. From reading a few publications it seems that the type of SMM I have has a fairly predictable course. Does anyone else have this type and can fill me in with their progression.

    Reply
  24. gabriella

    mio marito sette anni fa ha scoperto di avere una MGUS .lo scoro anno in gennaio le gammaglobuline sono alzate da 21% a 29% dopo un anno ,gennaio 2105 sono a livello 30,5%. Si sta Curando a Careggi sotto la direzione della dottoressa Nozzoli che ritengo molto competente in materia. per il 7 aprile dovrà fare la PET.Mio marito sta bene ed io mi auguro che continui così a lungo. ritengo che vivendo in Toscana possa leggere anche in Italiano.

    Reply
  25. Lyn Franklin

    Diagnosed Thursday May 14 2015…..Smoldering Myeloma…..no treatment. So out of it that I don’t even know or understand much of any of the numbers, letters (lgG) or any of the meanings. Naturally I have been on the computer for HOURS and feel more confused than ever!! Was sooo happy to find this Blog and see that I am far from alone in this issue. I go from scared senseless to just forget about it. However, I feel I MUST at least try some ‘natural’ things that have helped others, soo with that said…PLEASE…Nuki, give me your regime(sp)….and any info on curcumin, anyone, on amounts and expected effects, etc. Doctor said it is ‘a ticking time-bomb’ since no way of knowing just how long I have had it. Next blood work in 3 months. Am with Dr. James Choi at ARIZONA CENTER for CANCER CARE. Anyone else in Phoenix area PLEASE contact me.

    Reply
    1. Nancy Brimhall

      The most recent form of curcumin may be a step up from Longvida. It’s called Theracurmin and we are using the Natural Factors brand. it is at least 6-9 times more absorbable than regular curcumin, so one-three 300 mg pills a day gives you the 4-8 Grams a day that seems to be efficacious. I am an RN and have researched pretty extensively. I take two pills a day for memory and my husband is taking two pills a day for SMM that was at the point of needing treatment, but since he has taken it, the M spike has decreased and the doctor says he can wait. That has been the last 6 months. He is due for next test, so we’ll see.
      With normal curcumin, mostly what absorbs is the metabolite produced by the gut bacteria. In mice, which absorb the actual curcumin well, curcumin cures all sorts of things. The nano emulsion accomplishes the same thing and likely crosses the blood brain barrier as well. The mouse version of Alzheimers is cured by curcumin. Obviously, it’s better to be taking it as a preventive rather than hoping it will cure an existing problem.

      Reply
      1. Emma Hilliar

        Hi Nancy, I was very interested to read your recent post about the Natural Factors Theracurmin, thank you. I will look into it.

        Reply
  26. Stephanie Schiano

    I’d really like to hear your thoughts on the new criteria for the diagnosis of Multiple Myeloma and related disorders that was issued by The International Myeloma Working Group (IMWG). I was diagnosed with MM in 2007 and have been under the “watchful waiting” protocol since then. My labs and other tests have been relatively stable over the years, though the Kappa Lambda Ratio has overall been increased, though not to the extent that I think my prior MM specialist would have been too concerned about. Now that I live in another area and had to get a new specialist. The new doctor made me aware of these new criteria and says that while just a year or two ago I would not have been recommended to get treatment, but now because of this change in the definition of what is active MM, he believes I probably should start treatment. Before that he wants me to get a PET scan, which I think is a new thing to use for MM and Bone Marrow biopsy/aspiration. I haven’t had a BM biopsy since 2007. I really don’t want to do either.

    I haven’t been very regular about getting my testing done in the past 5 years, so I feel like I should monitor my lab tests for a while before making any decision about treatment. I don’t even want to get the PET scan or the BM biopsy.

    So I have several questions and would appreciate your answears or comments on any or all….

    1. What do you think of these new criteria and how they affect the decision to start treatment?

    2. Do you know if the PET scan and Bone Marrow Biopsy are helpful determining if once might want to start treatment.

    3. Do you think that regularly monitoring my lab tests might be a good start?

    4. Do you know a good source for information on treatments, side effects, etc that is not put out by any organization or business that might have a conflict of interest in that they profit from treating?

    I am afraid that starting treatment is risky and can hurt me. I feel good now. All I can think of is that treatment can only harm me.

    OH…Here’s a link to the website where you can read about these new criteria my doctor told me about.

    Reply
  27. Nancy brimhall

    My husband was recommended to start treatment about twenty months ago based on anemia and light chain ratio around 100. He was diagnosed with MGUS in 1990 and SMM in 2006. He has other medical problems and his health is fragile, so we were very suspicious of starting treatment. He started Theracurmin instead and had enough of a reduction in M protein to delay treatment. So far that is holding and the hematologist said he could reduce testing from every three months to every six.

    If you have followed what has been going on in cancer treatment, treating earlier has not panned out as hoped. The PET scan is most sensitive for finding bone involvement. The bone marrow is not as useful because the percent of clonal cells can vary a lot just from where the needle happens to hit. It also seems that there’s subjectivity in interpretation. University of Michigan said 35% clonal cells and when the pathologist at University of Chicago looked at the same slides, he read it as 25%!

    I hope you can come to a decision you are comfortable with. There’s definitely no clear answers. My feeling is no treatment without evidence of bone involvement or kidney damage or clearly increasing M protein. Following the labs more closely sounds reasonable.

    Reply
    1. Dave Clark

      Would you please tell me more about the use of Theracurmin and if it was recommended by an oncologist. I was diagnosed with SMM in December and currently doing the “every two month” blood tests. Also did you husband see a specialist at the University of Michigan or Chicago?

      Reply
  28. EK

    Hi Nancy,

    These are the stories I like to hear! Such a relief to you.

    Can you tell me what type of heavy and light chain your husband is? Also the brand and dosage regime of Theracurmin? How long did he wait to see the results?

    EK

    Reply
    1. Nancy

      My husband has high iGa and kappa light chain. The iGa has fluctuated 1000-2400 over the past twenty years. Light chain ratio has fluctuated but generally been over 100 past five years. The light chain ratio went down with the curcumin. It was because the iGg went up, not because the iGa went down. That was consistent with what happened in the Australian study.

      Reply
  29. Bonnie Falbo

    Hi Nancy and Margaret,
    My husband recently went from 8 years of MGUS to SMM. We want to start Curcumin. My local supplement guru in Charlottesville Va. told me that TheraCumin is a new version and the best absorbed so far. It’s 30 mg per capsule but has 10x the absorbency. So Nancy, how much has your husband been taking? Do you treat it like 300 mg and then multiply up to say 2000 to start?
    Thanks for your help…..we’re new at this.
    Bonnie

    Reply
    1. Louisa Velis

      Hi Margaret. What a wealth of information you have acquired. I was recently diagnosed with Smoldering Myeloma a few weeks ago which, like so many other people I have discovered, came out of the blue. Just my regular yearly blood tests showed an increase in my protein levels. I am 63 and in good health and shape. Anyway, I immediately started Dr. Best’s Curcumin 3 and seem to be tolerating it pretty well. I will get my next blood test in May and see what is happening. Hoping to the smoldering forever, but so happy to have found a group of wonderful people asking and answering questions.

      Thank you

      Reply
  30. Anne Morgan

    I found out I have smoldering Myeloma this past June (2016) I am seeing a doctor at UAMS, in LIttle Rock Ar. I have had cancer of some form 4 times and this will be my 5th type of cancer. I am most devastated. I am reading and looking up all the time about MM. Glad to read all your posts. Thank you for sharing.

    Reply
  31. Annie Hillie

    Received my diagnosis today: smouldering myeloma with a high chance of it developing further and soon. A few weeks ago I was feeling just fine, digging in the garden for 6 hours a day, having never heard of multiple myeloma! Now I also have osteoporosis (which I’d heard about but not suspected)…. and have to go for monthly drips of some sort of acid! to protect my vulnerable bones …. Still I’m here, and here ~ an out-of-town bush block in Australia~ is a beautiful place. I live with a wonderful and practical man and the wild life around us is amazing and prolific. And my myeloma is just smouldering … long may it smoulder .. in the meantime I am not going to wait for the storm to pass. I am going to dance in the rain …. :-)

    Reply
    1. Mike Lickfold

      Hi Annie,

      I was diagnosed in April2015, after excruciating back pain…. Subsequently spent two weeks in bed in hospital (Tweed Heads, NSW) . Went from being energetic nurseryman with penchant for dances and festivals to constipated old man taking heaps of painkillers who had to learn to walk again… 10months of chemo, and a stem cell transplant in Brisbane in May. Now feeling much much better, though have sustained 5fractured vertebrae, which cause a fair bit of pain, and frequently exhausted. My haematologist amazed by my progress. What a life changer! I get immense pleasure from the incredible birdlike and botanical wonderland I live in, and have been fantastically supported by my wife. It gets better, is what I’m trying to say, and long may it last! Best of luck , Mike

      Reply
  32. Annie Hillie

    Thanks Mike,
    Certainly is a life changer. My back hurts all the time now, but I can’t tell if it’s psychological, the MM progressing or because I just spent an hour turning the compost .. or all three! I guess time will tell & I AM still turning that compost and luckily the veggies are in raised beds. I certainly hope you are getting back to festivals. See you in Womadelaide next year? I think we are both fortunate that as well as being active people we have always been able to just sit and take in the beauty of the amazing places that we live in. Carpe diem! Annie

    Reply
    1. Michael Lickfold

      Hi Annie,
      I hadn’t checked this site for a while.. Good to read your reply..I find it very difficult to know what the causes are for any unwelcome symptoms, pain, exhaustion etc. is it recovery time still after transplant, or side effects of a drug or just regular aging body?! Funny you mention WOMADELAIDE, we were regulars till last year, where I first became aware something was wrong. Missed this year, unsure about next year… Going to Mullumbimby fest in November, easy and local! Beautiful coastal walk today, whales and lots of birds. And your last paragraph- spot on!! All the best to you, Mike

      Reply
  33. Anne Morgan

    I was told I had smoldering myeloma this past June, 2016. I have had two Bone marrow tests. This month I saw my Doctor at UAMS and he said treatment. My levels have gone up a little. I am 76 years old and will not be able to have the stem cell transplant. Just treatment once a week for 3 weeks and one week off. The doctor said it would be an on going treatment. I have decided to wait with treatment a little while longer. Will go back to Lirrle Rock Nov. 29,2016 At that time if my levels have gone up any I will start treatment. I can have the treatments near my home in Jonesboro AR. I would like a second opinion but that will not be an option for me. I have had cancer 4 times. so this makes the fifth cancer I am having. I am numb about all this and really don’t know enough about MM except death is in my future with MM.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *