thank you for all of your insights and advice on this cancer. Those of us with MGUS receive different advice and info from doctors and it tends to confuse. I am in that category and follow your recommended diet to a tee.. as well as attempting to grow most of my vegetables...thank you for giving us hope and leading this battle.

I agree with Dr. Durie's comments about diet fighting cancer. I have lived a healthy lifestyle including a very good diet. Although it was not a "Blue Zone" diet, it was very close including a glass of red wine. And, I either ran 3-5 miles a day or bicycled 10-60 miles, or walked 5 miles. I climed mountains, kyacked in the jungles of Maylasia, swam in most of the world's oceans, ran the Great Wall of China, ran/walked the bay areas in Perth Australia, etc. etc. Anyway, you get the point. AND I STILL GOT CANCER! Sorry if I sound bitter because I am.
My friends mostly say " if you got cancer is anybody safe?". I often observe men at the Mall, they are fat, obviously out of shape eating a hot dog , but they are probably healthy. Is it the double heliex? No, my father passed away at 97, mother at 86.
Again sorry about being bitter but I am.

I agree about diet but hard to do in America. Chemo and the steroids gave me diabetes. In the hospital to start my SCT they said they couldn't get my sugar down very much. When I was ready to leave and they were unhooking all the tubes of stuff they said no wonder, you were getting glucose. I will forever make sure they don't do that again. My cancer is still there but low enough to still be considered in remission. Thank God! I have been retired for a year today and that took care of a lot of stress. I also cook from scratch so I don't get all the preservatives. However, I have not been able to loose weight due to a couple meds I must take. I have no way of growing my own veggies and unless I can peel them, I don't get them. Many veggies are sprayed as they grow. I walk more which keeps the sugar down a bit. I do believe that myeloma is an environmental cancer. You really have to watch what's in the food you eat. It's a do the best you can with what you have. Thank you for all your research and help. I do appreciate it so much. Interested in the Black Swan Project. I'll be following that.

We're living in Heaven, so live like you appreciate being here for as long as possible. All studies show the most healthy in the world don't eat animals or animal products. The first drink of alcohol reduces your immune system by 50%. I abstain also from caffeine, added sugar & salt. Stress I relieve through meditation, exercise, sex & Atkins protein drinks in a Nutri-bullet with a pinch of marijuana. I'm very lucky to be enjoying a wonderful life even with 156 chemo doses in me. Stay away from all the pain & chill-out pharmaceuticals & have some fun with your remaining life.

Bob - In 2004 I was diagnosed with Multiple Myeloma as well as Amyloidosis. I had always led a healthy life style - much as you have. In reply to my question, "Why me?", my oncologist said, "Just think of how bad it might be if you were not in great shape".

In a way he was right because he gave me 12 to 18 months to live and here I am, cured of "in-curable" Multiple Myeloma - more than 8 years later. This weekend I'll go for a 450 mile drive in my 1958 Triumph TR3A sportscar that I bought brand new when I was 20. I think a positive attitude, courage, a bit of good luck as well as a good diet and your medication will all help. I have been off all medication for almost 5 years and all my numbers are stable and normal.

Thanks for all your comments. Hope this is not a repeat of an earlier reply I left using my cell phone which somehow got lost before I hit the submit link. Any way here it is again. I do believe that environmental influence are the leading causes of MM and other cancers. I lived the 1st 16 years of my life in the shadow of a polluting chemical plant.
As Don Elliott pointed out, your chances of surviving MM are better if you have lived a healthy life style. I hear that all the time. It's my old body (78)that I worry about. Most of the "good" survival stories I hear about on these blogs are of much younger ppl. Don's prognosis is what everybody hopes for. Have a great time on your Triumph road trip. I mostly miss the physical exercise and will be reduced to walking or kayaking. Dr. said any bone break would mean the start of therapy all over again. I'm only 3 months into my therapy, getting better, "I think", . All your comments are encouraging and I'm trying to have a positive outlook.
Thanks again!
Bob Adamski

As an Englishman with Myeloma living in SoCal who listens to the BBC via the web so it is especially good to see Dr Durie on a program I am familiar with. Well done to Dr Durie, Sheila Dillon and the BBC for highlighting " Myeloma ".

Being 7 years down the road from an Allogenic Transplant. I have had plenty of time to balance and tune my food intake to suit living with and surviving from cancer. I have read books, listened to radio, watched TV and talked with people, BUT in the end it all comes down to personal choice, logic and common sense.

"FRESH REAL FOOD" is the answer, it is not hard or particularly expensive to live well and enjoy food that is not processed. After my transplant I lost my salivary glands in my mouth due to the radiation. This effectively meant all I could eat were wet foods such a porridge and soup. Along with a high intolerance to salt I quickly found that ALL processed off the shelf soups were not palatable. I ended up making my own soup with FRESH roasted vegetables with home made chicken stock. At an early stage this led me to look into how I was going to eat for the rest of my life and what I was prepared to do to keep myself as healthy a possible in order to live well with Myeloma. Yes sometimes it is difficult to avoid the guilty pleasures of an In-n-Out, Mexican or frozen yogurt but the odd treat is not too harmful, as long as it is just that " an occasional treat ". Avoiding SALT, SATURATED FAT and SUGER all of which predominate in ready made and processed foods is a wise choice. Taking a supplement of Fish Oils, OMEGA 3's with an ANTI-INFLAMITORY and some TURMERIC is my personal choice from my reasearch and reading.

Most recently I have modified my eating in the last month due to another BBC program called HORIZON ( Shown in the USA on PBS " Eat, Fast and Live Longer with Michael Mosley" ). I highly recommend this show and the book as I now beleive, having lost 10lbs in a month and feeling very well, that occasional short term fasting is good for the brain and the body. Sheila Dillon also did a " Food Program" on this subject called "Fasting, old and new" which you can listen to on the BBC web site.

Thank you to Susie Novis and Dr Durie for the IMF and all it's good works.

I'm a nutritionist and cookbook author with a particular interest in cancer prevention (I overcame early-stage cervical cancer 14 years ago) and also spoke with Sheila Dillon for her upcoming programme.

I totally agree: cancer can neither be cured, nor prevented, through healthy food alone. I underwent conventional medical treatment and always recommend that anyone with a cancer diagnosis -- even early-stage -- do so too.

However, cancer researchers and the World Cancer Research Fund estimate that at least a third of all cancers -- and for some cancers, around 70% -- could be prevented if people eat a healthy diet, have a healthy body weight and get regular exercise. This information needs to be more widely known; most people still think cancer is something you "just get" out of the blue, and they should know that their lifestyle plays a crucial part.

Moreover, a healthy diet can even support cancer patients *going through* treatment -- not just because it nourishes them optimally and makes it more likely that they'll complete the course of treatment, but also because it helps them play an active part in their treatment.

I believe this psycho-emotional aspect of the role of diet in cancer is often overlooked: that preparing and eating healthy food feels empowering for patients and their carers and gives them a sense that they can play a positive role in supporting their treatment.

To help increase public understanding about the dietary factors involved in cancer, I have written a book, "Zest for Life: The Mediterranean Anti-Cancer Diet," (www.zestforlifediet.com) which provides not only an in-depth explanation of the science behind this healthy diet (eaten in "Blue Zones" such as Sardinia and Sicily) but also 150 recipes based on its basic principles (lots of veg & fruit, pulses, nuts & seeds, fish, herbs, spices, healthy fats, low in dairy, meat, sugar and processed food). The book has been endorsed by several leading U.S. oncologists (I'm based in Boulder, CO).

I also offer nutrition coaching (online) for people seeking to shift to a Mediterranean-style diet to boost their bodies' defenses against cancer. You can find details about my coaching programmes here: http://nutrelan.com/nutrition-coaching-2/.

Thank you very much!
Best regards,
Conner

my sister whose husband was recently diagnosed with multiple myeloma is very concerned
about how to prepare their home as a safe environment for him when he comes home
after the stem cell transplant.
i haven't been able to find any specific info. on this. any help would be so appreciated.

Interesting!

My mother (73 YO at Diagnosis Dec 2010) underwent VMP treatment for a year (no ASCT due to ineligilbility). She only took the melphalan for about 4-5 months (discontinued it because it was almost impossible to find plus the Velcade was working great). She now has possible early stages of MDS (not enough mutated cells to say for 100% sure), just from the few months of melphalan use.

She's still in CR (last Velcade was Dec 2011) with no maintenance treatment, so hopefully both the MM and MDS will hold off for a good while longer!

Hubby was diagnosed with small cell lung cancer in 2012 after being on revlimid since 2004. Diag with mm in 2003.

I am puzzled by my latest labs.

Capsule Summary:
Smoldering IGD Lambda Multiple Myeloma diagnosed Dec 1995
Treated VAD then VBMCP in 1998
Never Transplanted
Recurrence treated with Revlimid + Steroid with good response
Platelets dropping, Bone Marrow showed no MM BUT now Monosomy 7 MDS
On Revlimid 10 mg 21/28
SPEP - no spike, but now light chains rising dramatically

What do you make of the persistent and now spiking light chains?

I have been following updates on MM since my husband was diagnosed and continue to do so even after he died only two months after his diagnosis. I have yet to read an article on secondary complications, ie, amyloidosis unless I do an Internet search. Steve died at Mass General Hospital from gastrointestinal amyloid while going through round one of treatment for MM. Why has noone addressed this complication of MM?

Hi Joseph - My husband was just diagnosed (3 weeks ago) with MM, lambda light chain disease, stage III-a, with 90% marrow plasma cells and a Beta2 globulin value of 6.0. The odd thing is - he has had no symptoms. His GP found low RBC, WBC and platelets in a routine health check, leading to a visit to a hematologist, leading to a marrow biopsy, etc. He has no kidney damage, a clear bone survey, no bone pain, no fractures, no infections, mild anemia and mild fatigue, no hypercalcemia. He is almost 59 yrs old, with no other health issues (and no regular prescription drugs). A healthy, happy guy... So, the 90% and B2 6.0 sound awful and don't seem to add up with the lack of other symptoms. I was heartened to read your post about having had a similar diagnosis 20 years ago! Do you have any suggestions or information on similar cases? My husband has started Velcade + Decadron and will have ASCT in the next few months (hopefully). Thank you, Barbara (and husband Joe).

Hello. Several years before I was diagnosed with MM I worked with a weed killer in our back yard, and I wasn't very careful with protection. I also used Rymar stain on our house and decks. I've always wondered if there was a connection between such toxins and my MM. I've never been asked to fill out a questionnaire on toxins that I may have worked with, but I hope someday someone will do such research.

I was diagnosed in 1986 by an oncolgist and confired by Dr. Donna Weber at MD Anderson Cancer Center. I continued on oral chemo for about 12 years and still see Dr. Weber every six months and Dr.Checera with Ausin Cancer Institute every 6 months so I see a Doctor every 3 months. I have taken no Chemo for nearly 11 years.

I have no visual signs of Myeloma and would be relieved if I am cured. Thank you for your comments and I sincerely hope all Myeloma patients could look foreward to a cure.

Dick Dietz

Thank you. I am feeling unusually dense today and I need further clarification. As I understand it this initiative will use patients on existing treatment protocols and drugs available coupled with new more sensitive testing to define when a patient is "cured". This is confusing since it is further my understanding that since MM is actually many diseases that often mutate in a patient there has been no quantified cure achieved and in fact, patients invariably relapse. Is the imitative simply to measure residual disease?

I'm going on my 11th year since my ASCT and currently at early stage 1 myeloma. I'm not on any maintenance treatment right now, so how can this Black Swan help me. A possible cure excite me!

Roy

I was diagnosed with MM in 1998. I had an auto stem cell transplant atbStanford. Was in complete remission for 7 yesrs. When it showed I was out of remission I went on Revlimid and it was great for 5+ years.However thst streak ended this past year. I tried Velcade but it did not agree we me. I am now on Kyprolis and I have had 3 months of treatment. My Igg is still around 2400 but at leadtbit is not going up and reakly no side effects yet. The issue at hand however is that I had 2 compression fractures overvthe last 18 months. I actually had several v vertebroplasty proceedures on my L1 through L4. But I think we were too late. I am in real bad shape in refards to my spine. I cannot get around in excess of 15 minuetes unless I use a walker. The spine is really curved outward. I wish I could get back to being able to walk and run my life as before. I am confident that my MM will stay controlled plus we still have the new drug Pamolidomide. If the kyprolis does not prove to work well on me then I plan on going forwsrd on it. I feel strong that I will get great results from it since I did so well with Revlimid its' cousin drug. I have been real lucky over these last 15 years. I have been able to benefit from all of the new drugs. Now I really need advice on how to fix my spine. Everyone seems to shy away from any discussions on possible options.

This sounds like an exciting initiative. I know that my doctor at the NIH, Ola Landgren, is a part of Black Swan. He is definitely someone you want on your team and an amazingly caring physician. I am currently in his CRD trial on maintenance and doing well. Godspeed to you!

Terry

In October 2004, I was diagnosed with MM plus Amyloidosis and I was given three chemo treatments of VAD. In December, 2004, I was in remission. I later found out that they had given me 12 to 18 months to live. Because of my age and a heart condition, I was not given a bone marrow stem cell treatment. Four years later, in 2008, my oncologist told me that I was cured. It has now been over 8 years since my diagnosis and all my numbers are low but stable and I have had no medication or treatment for MM during the last 4 years. I see my oncologist once every 6 months and the report is always favorable.

There must be more of us survivors of MM out there and I admit that we may be the rare odd case, but I never hear anything about those who are cured. I would like to share this good news with them - or to anyone else who is interested.

As noted in the comments tabled above, I may now start to hear about and correspond with other MM survivors. Why don't we start a MM Cured Survivor's Support Group.

I lead a normal life, walk over 2 miles a day, mow the lawn, shovel snow, trim the hedge, travel where I want to go and feel 20 years old every time I drive my antique 1958 Triumph TR3A sports car which I bought brand new at the age of 20.

Don Elliott, age 75, Montreal Canada

I was diagnosed with Multiple Myeloma, type lambda, Stage III-b, with 90% marrow plasma cells in March of 1993. I have just observed the twentieth anniversary of my diagnosis, and, since a clinical trial in "Intensification of Stem Cell Transplantation" in November of 1996, I have been monitored every three months for years, and recently decided to monitor every six months. My monitoring tests show no detectible disease.

I am a resident of Canada, and, in keeping with my determination to advance research (as evidenced by my enrollment in the clinical trial), offer to play any part in the development of myeloma research. Will there be opportunities to participate in Canada?

Nice article, it's good to see that MM is getting such a dedicated high focus. I had an ASCT in December of 2010 at Hackensack University Hospital in NJ. I have been sCR since March of 2011. The gnawing question for folks like me is: "when am I going to relapse." Perhaps very sensitive testing would help to answer that question. Where is the testing being done? Is it part of a clinical trial or available to all patients?

I was very excited to hear about this initiative. As a younger patient that was blessed to have an unrelated donor and a skilled allo Doctor, I feel younger patients are already being cured when they do allos in first complete response. It will be a great day when the older patients also have an opportunity to be cured as well. The new tests will hopefully be more sensitive than the currently available molecular testing. We know that allo patients that achieve a sustained molecular response have a low chance of relapse, but I would have kept on treating if I thought I could get it to zero! Thanks again for starting this initiative.

I’m wondering about the structure/definition of future trials wrt Maintenance when incorporating MRD testing. Would maintenance even be permitted? Maybe MRD test before and after maintenance if there’s a fixed length maintenance schedule? Or would one continue maintenance until MRD Zero? Lots of thoughts. Anyway, exciting to look at potential cure via MRD test rather than dependant solely on future drug development.

Dear Dr. Durie,

We live in Norway, and my husband (53) has just this week had an autologous stem cell transplant. We are of course hoping for a complete response, and the BSRI makes me optimistic. It seems to me that compared to US doctors, the doctors here are less forthcoming when it comes to providing information and discussing details of results with patients. I am hoping to ensure a good and open dialogue with the hospital on how the testing of the response is carried out and on identification of MRD. We have two young children and I need to know that all that can be done is in fact done. I would therefore be most thankful if you could let me know if there are any Norwegian experts involved in BSRI? I am also keen to learn more about what we should do/say in the weeks and months ahead to ensure that the necessary tests and actions are taken.

Thank you for you hard work. It means the world to me and so many people.

Best wishes from Grethe

I am like Jack in that I do not fully understand the types of patients who will be tested and the types of tests. I heard Dr. Drurie say that only those who have had a SCT after receiving one or more chemo regimens will be tested initially. How would you determine which treatment actually created the MRD condition? I would think that using someone who had received only one treatment protocol and achieved CR for a period of two years or more (such as my wife has) might yield better insight into the efficacy of each treatment. I fully support BSRI and hope that it will bring about a cure sooner than later.

Any cure would be a blessing. I am 71 and have been diagnosed for two years. Had Velcade for a year and now on Revlimid plus dexa and cyclophosphamide. Treatment is not fun. Blood scores are returning to 'under control range', but side effects are awful. Hemoglobin went down to 72 last week, and have now had first blood products transfusion. Effects do not last long. So yes, a cure please, please please because MM has horrible lifestyle effects for some of us.

with the absence of a bone marrow biopsy, can myeloma be diagnosed with a positive presence of protein in the urine and antibody testing in the blood.

I'll be 55 in April 2013. I was diagnosed with MM in November of 2003. From 2006 to 2010 I was in what they call remission after going thru several treatments. I did do an Autologous Cell Transplant in 2005. It was a single because my body wouldn't give up enough cells for a double. I was taking Morphine Sulphate for my bone pain, still am, during this time. No other drugs.
After my numbers reached critical stage again I went on low dose Velcade and Dexamethasone. I was then bumped up to high dose. My body wouldn't tolerate the Velcade and because of that ended up in the hospital. Later while in the hospital I was diagnosed with 2 forms of the most deadly type of staph infections. I was in the hospital for a couple weeks.
I am currently on Revlimid and Dexamethasone. I started this treatment in late August of 2012.
It seems to be helping some.

How soon do they think that this new treatment will be available? Will it be realized in time for it to help someone like me?

Dear Dr. Durie,

The news regarding the BSRI is thrilling. Just to read the word "cure" in the same sentence with myeloma gives me hope. However, my spouse is a high risk myeloma patient (65 yrs) who still has a few treatment options available, but not nearly enough, as you are well aware.
He had one auto-stem cell transplant in 2010, which gave him about one year of partial remission with maintenance therapy.

When possible after your return from Kyoto, with new good news we hope, could you comment on how the BSRI might have an impact for patients with high risk disease?

With gratitude, an anxious spouse.

Hello Dr. Durie,

In the quote below from the IMF web page could you please elaborate (quantify) what you consider to be "long-term complete remissions"?

"Through medical innovation we can already achieve long-term complete remissions in 15 to 20 percent of myeloma patients." -- IMF

Again, from the quote below on the IMF web page could you please elaborate on how the best treatments are/will be identified at the best time to achieve the best objective?

"Now, by identifying the best treatments at the best time to achieve the best objective, we’re ready to bridge the gap from long-term remission to cure." --IMF

Thank you!

Hi dr Durie,

I was diagnosed In 2005 and had my second auto tplant 2 yrs ago August. Currently in CR with 5 mg Revlimid maintenance regime. Would BSRI be something I would be eligible for?

Thank you

Hi dr Durie,

How does someone apply for BSRI evaluation?

Thank you,

Jon p

Dear Dr.Durie
I am a survivor, Victim and rescuer from the attacks on 9/11 I recently Had my WTC medical (Jan of 2013) When my Blood & huron test can back with a Low level of 5 on my anion Gap. I am a Retired Lieutenant from the FDNY who survived the 1st & second collapse of the WTC I spent more then 4 months at the site afterwards after reading the statement below my question to you is should I be concerned? The Mt.Sanai WTC treatment programy just sent me resluts no other information ( my mother was diaignosed with burning mylenoma whenat age 80) Pleae if you have the time respond to me at the above email
Thank you
Larry Monachelli

WHAT DOES IT MEAN IF THE ANION GAP LEVEL IS TOO LOW?

If the anion gap level is too low, this can mean that the person has hyponatremia (a decreased level of sodium in the blood). It can also mean that the person has multiple myeloma, which is cancer of the bone marrow. Bone marrow is a tissue that fills the center of long bones. Additional testing needs to be done to find out the reason for the anion gap level being too low

What particular toxic chemicals do you think these New York Fireman were exposed to that would cause MM?

I was diagnosed with MM at 56 years old. I have no family history of Myeloma.
I worked in the WTC affected area. The WTC fire smouldered around
Lower Manhattan until January 2002. We were repeatedly
told that the air quality was safe, but it was not.
Excessive quantities of benzene, petroleum toxins as well as other toxins were found in Lower Manhattan.

I have begun the process of filing out the eligibility and compensation forms and
gathering documents. It is important to keep all evidence of medical care, including receipts. Yes, indeed it is a laborious process.

Have you found a corelation between Black Mold and MM? An are of my home had mold...not in Lower Manhattan. I cannot find any other exposure to chemicals/agriculture. I am a 58 year old female.

I was diagnosed with multiple myeloma at age 56; there is no history of multiple myeloma in my family. I was, and still am, working in the WTC area on 9/11. The air quality was appalling, including inside our building in the weeks following the attack.

I have yet to complete the eligibility and compensation forms. Any advice on this will be welcome.

My husband, a retired Lt. Col, flew above the "ranch hands" while they distributed Agent Orange in Vietnam . This exposure, I believe, was instrumental in his diagnoses of MM in 2010. We are still waiting for the Veterans Administration to make a determination that his disability is service related.

Dear Brian,
I am very pleased to hear from you that our modern environment at home and beyond is responsible for the rising incidence of MGUS and Myeloma. Pesonally I have the view that Microwaves from Microwave Ovens and similar equipmets can trigger the malignant transformation of our Plasma Cells as the first case from such a background in a 40 year old Indian born British resident was diagnosed by me while in Leicester Royal Infirmary in 1980. My curiosity turned in this line as I saw the first Microwave Oven in July 1977 just behind this man operating 12to 14 hours every day 7 days aweek as He and his wife were managing this small Indian Restaurant in Leicester. From that incident I grew suspicious about Microwave Ovens and started advising against the liberal use of this equipment in households. Later on I came up with quite a few Myeloma patients in whom such a connection could be proved beyond doubt(definite incidents in 1992 and again in 2006 the latter in 50 year old lady who relapsed her Myeloma after Thalidomide based Chemo & Stem Cell autograft). I even discussed my concerns with one of the authorities involved in UK Myeloma trials and gave my suggestion to introduce a patientvquestionare relating to use of equipments like Microwave Ovens, Induction Cookers and others emitting reasonable amounts of microwaves at home or at work. Personally I got scared Microwave Ovens and discouraged my family and friends from using them.

My father was diagnosed in 2004 at the age of 71 after being in perfect health his whole life up to that
point. He worked for 42 years as a chemical technician with regular exposure
to benzene. He started before there were safety regulations. He passed away
in 2008 and we have no doubt his MM was caused by his exposure to chemicals.

In my early 20's I breathed the air inside a gray iron foundry for about three years. Later I breathed formaldahyde laden air for 5 years in a particle board lumber mill. I grew up in the San Joaquin valley of CA, where pesticides were used and dust blew from the peet lands. At age 70 I was diangosed with asymptomatic multiple myeloma. I have wondered about a possible accumulative effect from my past that may have lead to my multiple myeloma. It would be a leap to make a causal argument in my case, but if many similar cases exist, then maybe they offer a clue about the situations that contribute to multiple myeloma.

My concern about my health has been exposure to asbestos. I was a high school teacher for 24 years in the same school with asbestos insulation. I watched the men in white "space suits" remove it. That is when I wondered what it had done to me. My tenure there began in 1985, and it was in 1995 when it was all removed. Would asbestos have triggered my myeloma diagnosis in 2009?
Hopefully, researchers are moving closer to the triggers.

My husband has MM. He had a stem cell transplant 3 years ago...velcade, etc. The MM has not progressed and he is doing very well. (age 69). He still works full time. My question - "is there a danger in wearing dress shirts daily that have been cleaned and pressed at a dry cleaners?" Thank-you.

As a teenager, I worked with volatile solvents in a furniture factory, and later in my life as an artist I again worked with solvents and resins in making sculpture and paintings.

I think that all cancer patients (on a voluntary basis) should fill out lengthy questionnaires detailing their personal work and environment histories, which then could be put in a database and analyzed. After a million or so case studies, I'm sure that correlations between cancers and causes would emerge, leading to banning or limiting substances, which would prevent many cancer cases.

My husband died Nov,23 2004 after being diagnosed with MM just 5 months before. He was 51 years old. When he was in high school in the 70's he worked at a fertilizer plant for one summer. At that time people didn't wear masks or any kind of protective gear. His job was to load the bags of fertilizer onto trucks. He told me that dust was thick and flying everywhere while loading. I believe this is what caused his MM. Dr Durie, I contacted you in 2004 to get your opinion on my husbands case. At that point he was on kidney dialysis and didn't have much time left and there was nothing we could do. Thank you for your support at that time and for continuing your work in this area.

As a teenager I worked for a farm supply company
and regularly filled 5 gal buckets of DDT from a 50
gallon barrel, needless to say spills were frequent
and I remember going home after work and trying to wash
the DDT odor from my hands. A relative of mine died from
MM and his DR. mentioned his MM could have been caused by his frequent use of DDT on his farm in Montana.
My Question to all "Is there evidence of DDT causing MM?"

I had always been in good health till 2004 at age 67 when I was diagnosed with Multiple Myeloma and Amyloidosis. After three treatments of VAD, I was in remission. I never had a transplant because of my heart. They suspected that the amyloidosis had enveloped my heart and was the cause of atrial fibrilation. Within 6 months, I was off all treatment except for a low dose of Thalidomide which I continued as maintenance for three and a half years. My oncologist then told me "You are cured". I don't know what caused the MM but I have accepted his words as truth. I have not had any treatment for MM since we stopped the Thalidomide in 2008 and all my numbers (every 6 months) are stable and normal. The words "remission" and "re-lapse" are not in my vocabulary.

Life is great ! I traveled throughout UK for 5 weeks in 2011, camping in a tent for most of the trip and drove a 1954 Triumph TR2 antique convertible for 23 days with the top down most of the 2088 miles I did.

My husband was diagnosed 15 years ago, at the age of 40 with multiple myeloma. He was healthy and training for a marathon. As we looked back to see if there was anything in his history or family history we couldn't find any answers as to the diagnosis of cancer. However, my husband recalls as a young child growing up in south Texas that there were pest control trucks that used to drive through the neighborhoods and spray for mosquitos. He told me he and his friends used to run behind the trucks, because they provided cool air along with the pest control spray. I always wonder if that could be a cause for his multple myeloma.
After reading your article, it seems that it may provide an answer that we had been wondering about for many years.

I am convinced that environmental toxins are the cause of myeloma and other cancers. We were very poor and didn't eat the right foods because we couldn't afford it. Also, there are so many chemicals on foods now that I do not eat a lot of fresh veg. and fruits. Recommended by one of my oncologists. I use cans but then they have chemicals in the can itself. I was diagnosed in 2005 and had a SCT in 2006. My cancer is still there but I am considered in remission because it is a low number. I have a terrible time loosing weight and have been overweight all my life. I'm sure all these components contribute to my health plus the chemo gave me diabetes and neuropathy. I just do the best I can and hope someday soon this will be considered a chronic disease and not an incurable one.

MY HUSBAND WAS DIAGNOSED IN 2008. THE ONLY CHEMICAL EXPOSURE THAT HE HAD WAS WORKING IN A FUNERAL HOME. HAS EXPOSURE TO FORMALDEHYDE BEEN LINKED TO MM?

I have been extremely war of any chemicals during my life. I am 62 and was diagnosed in 2010. I have had many pets over the years who had flea collars which I now have been told were impregnated with organo-phosphates which have now been banned. I have always bitten my nails so I guess I regularly ingested it. I also lived above a service station for about 6 years and could smell the fumes. I also studied nursing with a wet lab with bodies preserved in either formaldehyde or formalin. Hearing now about rubber tyres and the toxic chemical linked to myeloma. About 15 years ago, I burned a rubber tyre in my backyard with black fumes going everywhere. Someone called the fire brigade because of the mess. I now wonder about all of these exposures and whether one or more than one may have contributed to my myeloma

my dad died of myeloma, as did my dear friend lee grayson who became a bit of a poster child for thalidomide and served so many nation wide over the phone as a clearing house of information giving them support and suggestions based on his personal battle. i remember lee telling me about an epidemiological study in which a map of the nation showing myeloma "hotspots" very closely correlated with an overlay map of the nation's mass burn incinerators. these have gotten much much better in recent years, but were notorious from the 40's through the 90's for spewing dioxins and furans- the chemical family cousins of agent orange. much of this is the result of incomplete combustion of plastics, organochlorides, and other petrochemicals.

Hello Dr Durie, I am pretty sure that Myeloma was caused by prolonged exposure to organic solvents. I worked as a chemist my entire life and stubbornly, I rfefused to were a mask while working with these chemicals because the mask was uncomfortable. I have no one to blame but myself.

I agree there is something in the chemical connection, especially with people working in & around them for many years..... BUT how do you explain some one like myself or a younger person diagnosed with MM? I was 39, never in a chemical type job for 40 plus yrs, yet I did clean my house with chemicals, I painted walls,etc but not near as much as a professional painter, my dad was in Vietnam , not me, and my husband is a pilot but I am not exposed to the aircraft Fuel,etc.... I gained weight after having babies, but lost it. Then gained a bunch of weight after being diagnosed with MM. How do so many folks that are NOT exposed for many yrs to chemicals turn up with MM when many of the people who are exposed via their life long jobs, war chemical exposure do NOT get MM?? I know we all wish we knew what caused MM, and for some we may have the answer but for us few... is it in the food we eat or the water we drink? And if it is.. watch out we will be seeing a lot more folks with MGUS & MM!:(

I have been teaching at Solano College,in Suisun, California, which is surrounded by agricultural land in Northern California, near the Delta and about 30 miles from Sacramento. Studies have shown that there are pesticides in the water there, and I believe in the strong wind that often blows across the valley. I used to play tennis for hours in the courts there, even while the ground was overturned from construction, and the wind was blowing fiercely. My myeloma became active in April 09, right after the construction, although Dr. Barlogie said it probably had been smoldering for a long time. Even though the college is quite small, I know of a student, who had been on the baseball team, who was also recently diagnosed with myeloma. There are other kinds of cancers as well. A teacher I taught with had a house which bordered on the campus. Her son was diagnosed with Non-Hodgkins Lymphona when he was 12, her dog had cancer, and now she has just died from breast cancer. I have had two stem cell transplants, and I am in a good remission, but I am afraid to breathe the air on the one day when I work there now.

I am so sad to read comments of those who have been exposed unknowingly, unwillingly, and/or can't get help from a government that put them in harm's way. I was also exposed to a harmful substance when I lived in Colorado near a uranium mine. My father didn't work in the mine; he was a minister, and we later found (when he was in the hospital being treated for leukemia) that there were many buildings in the town where we had lived that were contaminated by the mill tailings (leftover uranium sand). Some wise guy at a construction company came up with the "bright" idea to use mill tailings in the buildings they were constructing in Grand Junction. The radiation was under our church building, in schools, homes, everywhere. Years later, after lots of people were getting sick and dying, they decided they better clean it up. Sadly, it was too late for my dad, I showed up with MM in 2007 (and had had it for many years), and they only cleaned up as much as they could afford...so, there are still buildings in Grand Junction that are contaminated. What will it take for people to understand that you don't play around with stuff like this?! If it kills bugs, it's probably not good for humans! And if Madame Curie carried radium in her pocket and died after doing so, what makes it safer because it's in sand form?! I'm no rocket scientist, but seriously....

I was diagnosed with MM in September of 2008 and underwent an autologous stem cell transplant that December. I've been in remission for a long time, but have blood tests monthly due to a slightly elevated "number". **I strongly recommend that all MM patients have the opportunity to fill out extensive questionnaires so that oncologists can compare histories of a large number of MM patients, and perhaps find similarities which might eventually lead to a "cure". No one has ever asked me anything about my personal history.

Hello, Dr. Durie,

I've seen a national map of the U.S. and the most prevalent states for MM are in the southern states: Mississippi, Tennessee, South Carolina, etc.
And in Mississipi, the "hot" counties are along the Mississipi/Louisiana line. These counties are Marion, Lamar, Pike, Amite, and Walthal. This area is known for dairy farming, growing timber, and petroleum. Also, back in the 60's, the government performed an underground nuclear test at what is called the underground Tatum Salt Dome. I believe this salt dome is located in Lamar County. It seems like to me that is we know that these counties are the "hottest of the hot" for MM, then there should be an epidemiologist study performed in this area. Chemicals have become so ubiquitous in the environment that I am certain that it is caused by a chemical because MM is trending into younger and youmger people and this is because the environment is so toxic, that even newborn babies are born with a "body burden" of chemicals.

I was diagnosed with MM in 2003. In 1997 I had been diagnosed with chronic mercury poisoning attributed to a diet high in tuna and swordfish - large predatory fish known to carry high levels of heavy metals and organic pollutants. In 2005 I was tested for organic pollutants such as those derived from agent orange, benzine, DDT, flame retardants etc. I was found to be quite high in some of the congeners. The story is best told in my book, The Voice of the Dolphins but is also covered on our web page.

I would say the sooner the better on testing 9/11 victims. Even though it’s slow, POPs (persistent organic pollutants) do break down and diminish. Also, if a person loses weight they will mobilize POPs, which are lipophilic, and excrete them.

When I asked toxics expert Arlene Blum about my POPs levels she said “Oh, too bad you didn’t get tested when you were still eating lots of tuna etc. because your values would now be only a shadow of what they may have been.” I had stopped eating large predatory fish in 1997 after being found to have high mercury levels. My test for POPs was run in 2005.

I’m thinking of having myself tested again - 7 years after the last test but the tests are expensive.

I’ve just heard from a top marine mammal toxicologist that there is likely a correlation between levels of mercury and other heavy metals and POPs. There are confounding problems but as a general rule.

I will be getting test results from Peruvian dolphin-eating fishermen by Feb. 21. Our tests for mercury etc. should/could be a proxy for POPs. These fishermen have epidemic incidence of diabetes which Dr. Durie has tied to MM incidence.

Anyway, it's great the IMF is doing this work. Prevention of this disease is better than suppressing it with drugs, even though these drugs have been a godsend to me.

I would be happy to receive information from people who eat a lot of high food chain predatory fish who have MM.

Hardy Jones
hardyjones@bluevoice.org
http://www.bluevoice.org/news_diabetes2.php
http://www.bluevoice.org/news_sharedfate.php

My husband was diagnosed with MM in Jan.2007.He had two stemcell transplants and chemo.My husband was in the roofing business for 40years.He was exposed to toxic chemicals daily.My husband was very healthy and strong,never sick.His oncologist suggested a link betweed his exposure to glue used to adhere the rubber roofs and the hot tar used.My husband lost his battle with cancer in2012.We live in Colorado with is a "right to work state"with translates to ,NO ONE CARES ABOUT THE WORKERS HEALTH.My husband is dead because of Chemical produceing companys.

I am a 78 year old recently diagnosed MM patient. Like many other individuals, I lived a very healthy lifestyle with a good diet and a compulsive exercise program. My father passed away at 97 and mother at 86. After my yearly physical six months ago, my primary physician reported that at 77, I was in excellent physical condition for a man my age. I then started having back pain, a loss of 35 lbs. in muscle mass, and a severe loss of bone density. I was being treated for osteoporosis and after five doctors, gallons of blood tests and urine samples, nine body scans, and finally a bone marrow biopsy by an excellent oncologist; I was diagnosed with MM. Consequently, my question like thousands of others with MM is, “why me?”
Dr. Durie’s comments on environmental causes of MM appears to have a lot of validity, especially after the “MM connection” to the 9/11 toxic material exposure. In my case like other comments, I was an engineer in the chemical and petrochemical industry for 40+ years. In addition, I was exposed to beta and gamma sources of radioactive materials in the 1950’s engineering isotopes for industry applications. So the hypothesis of long term exposure to toxic materials or radiation could have significant data to support a “MM connection”.
However, I do have another factor to consider and that is, radiation from airport security devices and even the higher strength of cosmic radiation exposure when flying at 40,000 feet. During my career I have flown over 3 ½ million miles all over the world. During that time my exposure to hundreds of airport security scans, especially at international terminals when you get scanned after leaving your aircraft and again when boarding another aircraft had to be dangerous.

Bob Adamski

How do I Know if I am Exposed to Toxic Chemical Pollution?

I commented earlier (Comment #26) to Dr. Durie’s blog regarding toxic exposures and causes of MM and wanted to inform the members about an EPA site that documents industrial air pollution in your area. I have been an activist against air pollution all my life and use this site often. Simply log on to www.epa.gov/tri . When asked for your zip code, enter it. Most will be surprised at the air pollution in their area. The EPA requires by law, that any toxic chemicals be reported to the public. This regulation was written as a “public right to know Act” shortly after the Bhopal, India incident in 1984 when over 14,000 deaths occurred. TRI is the acronym for “Toxic Release Index”. When you log on with your zip code or city, you will find a summary of all the facilities and then click on the individual facility to get the actual toxic chemicals like benzene, etc.

Bob Adamski
Kol25adam@charter.net

Nice to see that Doctors such as Dr. Durie are looking into these possible causes of MM.

My husband, now deceased, and I sought out Dr. Durie for a second opinion for care at Veterans Hospital. Edward Rodman Hollister had multiple myeloma. After reading this article, I am fairly sure that Butadiene is what caused his illness. Rod was a chemist and worked with that chemical at Rexam Graphics. They made special coatings for papers. I believe Rod saw Dr. Durie some time between 2003-2005. Thought this information might be helpful.

In trying to figure out why my husband of 47 years and perfectly healthy got myeloma a year ago at age 66.

He worked in our finished garage as an engineer with exposure to pesticides in there for lawn and bug spraying for over 10 years up to 8 hours a day.

Could this been the cause? I now have remmoved all pesticides from garage. I believe toxic chemicals have an effect as talking to other myeloma patients from support groups as they have also been in someway exposed too.

I was working overseas in Afghanistan as a Government Contractor. My position was a Fuel Manager (JP 8 Jet Fuel0. Also expose to the Burning Pits. Could this be the cause of my Myeloma. I worked there from June 2009 thru June 2012. I have Mytple Myelomaand is currently receiving treatment.

Although I live in Queens NY I always thought my mm was related to 9/11. I was diagnosed with mm at age 42 on December 2011 after enjoying perfect health all my life. My house was very far from the World Trade center, but two days after 9/11 the walls in my bedroom and in the entire house were covered with a thick gray dust that I cleaned myself, could this have caused my mm a few months later??

The Dept. of Defence recognizes pesticides and petroleum exposure as probable cause in a fairly long list which includes several blood cancers (including MM), lymphoma, lung cancer and Parkinson's just to name a few.

Humans didn't evolve to breathe, ingest and live with toxic chemicals. It seems we are living in a kind of toxic stew. My husband was in Vietnam during the war and flew over the top for recon with the "Ranch Hands" or planes that sprayed Agent Orange on the countryside there. His multiple myeloma is presumed to be caused by that herbicide/pesticide.

My husband was diagnosed in 2010 and passed away 3 months ago of myeloma. It is good to see that research and findings are becomoing more prevalent. As no one knows what caused his and we had no hope. So I hope that this will give those that are diagnosed early enough the hope we didn't have. My heart goes out to all that have been diagnosed and to the families that watch this horrible disease take their loved ones.

I have been trying to determine the comparative incidence for multiple myeloma for "area" residents and all residents of NYC, since 9/11, with absolutely no support or success from anyone, including the IMF, the MMF, the VCF, the WTC Health Program, and the NYH and MT. Sinai Hospital in NYC.
Just to see this comment is a miracle, but, I do not understand Dr. Durie's use of the word "early".
I live in the "area", and became ill with myeloma in the winter of 2008.
The ledges of my south-facing bedroom windows were coated with dust with dust the next morning after,but,thankfully, my windows had been closed,and I kept them closed for months.
Sincerely,
Harold A. Hamer, M.D.
27 North Moore Street, 8E
New York, NY 10013

This is the first information I have seen in the past five years since my husband was diagnosed with MM that addresses the possible causes of this disease.
I have been very concerned with the apparent lack of interest into discovering reasons for MM.

My husband died in 2005 from MM and I always thought it was connected to working in the construction business; mainly freeway work where he inhaled fumes from asphalt and also worked in a forest burn area when he was very young and remarked "their faces were so black only the white of their teeth showed." Also, one winter he worked on a building site in the snow area where they had heaters to keep warm and the chemicals leached out of the new lumber. It made his breath and skin smell of it. He was 67 years old. I appreciate the information through research and your e-mails to inform us. Thank you.

My husband Richie Hass grew up in Plainfield, New Jersey, a very polluted area of North Jersey. When he finally moved to another part of the country, he ended up here in Los Angeles in 1977, where we were still having second-stage smog alerts and dealing with industrial pollutants of all sorts.

I have a strong conviction that Richie's MM was directly linked to his growing up in a very polluted area of the country. He was only 55 when he died. MM used to be an "old person's cancer" and now it hits people in the prime of their lives. We have fouled our own nest, and we are facing the consequences of those actions.

I was diagnosed with multiple myeloma 1/21/11. Went into the hospital on 1/14/11 with severe back and stomach pain. Previous office visits only for the doctors to say I was depressed. Finally an MRI found a tumor on my spine, I had 10 radiation treatments, was released from hospital 2/18/11 with a walker and wheelchair. A tumor was also on my sternum but no radiation because too close to my heart so put on a steroid dex. I also had a stem cell transplant 8/8/11. Now on Revlimid, bone aspirations are good, when diagnosed I was 40% to 50% myeloma. I had to learn to walk twice and still have issues .. neuropathy from my chest to my feet. I live in the country, I have been healthy all my life, hardly missed a day of school and work. I try to eat right, don't smoke, or drink? One chemical, if this counts, is I have died my hair for many years, I just turned 60? And where I worked, my first 3 years in 1979 to 1982, I worked on an assembly line where I soldered components on boards that go into electronic equipment. At that time, smoking was allowed on the line also. Just don't get it??

This study just confirms what I knew to be true in my heart when I was diagnosed with myeloma five years ago.

My husband had mgus and was being watched by his doctor for the last year. In July 2012 he began to have weakness in his knees. A plasmacytoma had wrapped around his spinal cord. After surgury,radiation and chemo he is preparing for a stem cell transplant.
He worked as a civil engineer and after the earthquake in Kobe, Japan in 1995 he was sent to repair one of his company's buildings. He lived in the area for 9 months. Roads and buildings were destroyed. I wonder if this experience may have contributed to his mm.

I was diagnozed with multiple myeloma in June 2000. At that time the experts opined that MM could be caused by exposure to radiation, to pesticides or even to stress. I had all three.

If there is a lesson to be learned, it is that we should do our utmost to reduce exposure to all forms of toxins for the benefit of those who do not have MM, if that is possible. I hope people are listening; I hope they are willing to act.

I am surprised that I made it 69 before my MM became apparent. I am a chemical engineer. Worked in the refinery industry, petrochemical industry and Dow Chemical Company for 30 years. Spent one summer drumming benzene and loading chlorinated benzenes into tank cars. In their defense, companies had no idea that these ingredients were harmful in small quantities. I am sure that more protective measures are available today

I sprayed a house with Malathion at age 26 and certainly got a large dose myself. I was also exposed to Benzine, another suspected cause of Myeloma, for a couple of summers as a teenager working in my Dad's machine shop. (It was frequently blown off parts with compressed air into the room. I even put my hand in it sometimes to retrieve parts.) I was diagnosed with MM at age 53. Ignorance is not always bliss.

My father was diagnosed with mm in 2001.He should've been diagnosed earlier b/c his blood tests were a 'red flag' that something was wrong. Finally, a cardiologist saw this 'red flag'.He worked his whole life in a dry cleaning store and huge laundry company but was retire for the past 30 years. I was wondering if mm can lay dormant for years and then start to reveal itself much later. It was always in the back of my mind that the chemicals he was exposed to everyday, were a contributing factor in his contracting mm. He passed away in Oct. 2011. He was 89.

i am in a current clincal trial using genetically engineered t-cells. ihave been at this for about 1 year.
i am at present timeshowing good signs that the t-cell are replicating themselves and ihave not taken any chemo except maphalen for my 2nd transplant which was in jan/12 the last restageing could not detect any blood markers that we were trying to destroy. my oc was very optomistic at this point,he even left me bypass bone marrow at this restaging. i know i still have mm but knowing i have scored a victory over this little part may lead to bigger and better things. i have had prostrate, mm, and skin cancers. i had my mother,sister, and two brothers all who had cancer so i guess it is in my genes, that is why i am excited about this tageted gene therapy. hopefully this nano engineering of t-cells will open up new avenues of study, and give patients another route to take to fight this scurge of mm,

marty

My diagnosis at age 49 was surprisingly as I was very healthy with no other health problems. This was in 2004. My sister was diagnosed early in 2010. After that we tried to figure this out and suspected some exposure. Our dad was a painter and had a commercial business. The benzene exposure as kids is the only thing we could come up with. It is a very toxic world.

I worked near the World Trade Center and, took a subway train that sopped prior to the World Trade Center. After 9/11, We were assured the air quality was safe. A fire smouldered for 4 months at the World Trade Center.. One can only imagine the toxins released into the environment. Years after the attack, I sought medical treatment for respiratory problems and nosebleeds. In March 2012, I was diagnosed with a plasmacytoma in my sternum and, later told I had Multiple Myeloma. I have no family history of Myeloma.

I was diagnosed with Stage III-b MM in March of 1993. I underwent a clinical trial in "intensification of stem cell transplantation" in 1996 and have had no sign of MM in monitoring tests since that time. On March 9, 2013, I will observe the 20th anniversary of my diagnosis. I think people should know that survival statistics are numbers based on the dead, not on the living. As long as you are alive, there is hope and opportunity to live well with MM.

Both my mother and I were diagnosed with MM, but 11 years apart. She passed in 1996 at age 71. I am 53 and 5 years out from diagnosis.
After much reflection, my best guess as to the cause of our both having MM is the theory that we were both exposed to the same pesticide. My parents used Chlordane, a pesticide banned in 1983, liberally, in a home they built when I was 7 years old. My father used it inside the house, which I believe was an incorrect way to apply it. Further, I have read that the chemical continues to stay in the air of the home for as long as 30 years after application (and this is assuming correct application outside the house itself).
I believe sharing these stories and theories helps.

As a young adult of age 19, I was in training to be a x-ray technician. In those days there was not much protection from xrays for the technicians or students.
We went into the rooms with nothing but a lead apron or nothing at all. This was in the year of 1956.
I was diagnosied with MM in 1959. I really believe the exposure to the xrays was the cause, but something besides xrays in my body was involved in prompting the MM.
Because of wonderful Drs.and the help of God,it is 2013 and I am writing this comment

Carol Massich

My mother was diagnosed with MM in 2005 at the age of 71 after given the run around from a terrible PCP. She clearly had all the symptoms of the disease including anemia, fractures of the spine,along with ribcage pain and elevated creatinine levels. I being in the medical field had an idea this did indeed sound like MM so i challenged the physician to run a protein electrophoresis. Even though he became offended that i would suggest he do something he did not think was necessary he did to shut me up. My suspicions were correct and that weekend she went downhill while we awaited a consult with a hematologist. I rushed her to the ER and there she was admitted in acute renal failure. She did recover from that after dialysis and after 10 days in house sh was discharged to an uphill battle with this terrible disease. She did suffer terribly from all the chemo and radiation treatments to only add insult to injury and end up with dementia. She passed away from renal failure secondary to MM January of 2012. My mother never worked and was all of her life a house wife. All i can think of that might have caused her disease is her gardening pesticides for the many years she tended to her garden.
If there are any care takers out there that are a bit skeptical about your loved ones care or diagnosis please step in and insist for second opinions. The only thing that gave my mother those extra 5 years of life is the fact that i was able to figure out what it might be and INSISTED she be tested for it. At that point i had nothing to lose by being wrong if it would have been negative. In this case that irresponsible physician was the one that should have been ashamed of himself for being so arrogant and want to deny testing her for the disease.

I just read all the comments on exposure to the various chemicals. Not everyone exposed to them gets MM I wonder if the MM researchers should be looking at what genes some of us have or don't have that makes us targets for MM. I know lots of people whose lives have paralleled mine in growing up, working, and exposure to chemicals and they do not have MM. Maybe we need to look at why some are more likely than others to these things.

I was diagnosed at 61, one year into retirement after 42 years working at power generating plants. I had Benzene exposure there before it was banned and 10 years of radiation exposure working at Nuclear plants. Now at 68 and after three stem cell transplants I live on well with low numbers, never zero! Life it still good!

Has anyone ever considered smoking to be one of causes of multiple myeloma due to solvents, chemicals used in the production of cigarettes? I have known many who have died in our small town who were smokers or reformed smokers.

My father was diagnosed with Multiple Myeloma in 2003 and passed shortly after in 2008, and my family believed that it was from him being present at the test sites in nevada from the radiation. It was hard to know concidering he was there in the mid 50's to early 60's and my mother is getting older as the time goes by so it is now just myself doing more research. This past week i've continued looking and came across something called radiation exposure and as i did more reading i came across google search, cancer benefits and very interesting detail on location my father was at while in the service which made me believe more so it could be caused from this radiation he worked with so i continued looking further on this and learned that although not what i was looking for exactly but found my father qualifys for benefit earnings and even though hes passed his earnings would go to my mother. very impressed with there knowledge on these veterans i felt as if i should share with all of you. check it out and see if you or your loved ones qualify it has helped my mother so dearly shes so close to fighting her breast cancer because now she can afford the chemo. Everyone's in my Prayers as these times are hard. God Bless

I was diagnosed with MM in August 2011, after 58 very healthy years of life. Every physician I visited for my annual exams gave prescriptions and referrals to bone specialists to alleviate the intense pain in my body. I finally went to the hospital and was given an MRI which revealed the lesions on my hipbones, backbone and breastbone. I have been evaluated for a stem cell transplant, but chose to postpone it because I did not want to miss the birth of my grandson, family graduations, my 60th birthday party and my wedding after being a widow since 1998. I have been blessed with an awesome doctor whose treatment plan for me took me from 46% to 1% in four months. I worked for a chemical distributor for 11 years and in an asbestos infested company for 6 years, and lived in a community with an oil refinery for 23 years. It is very possible that all three contributed to my MM status. I pray that I will continue to respond to my therapy until a CURE is found. My prayers to all of my MM sisters and brothers.

In January of 2006 I began to have have classic symptoms of hypercalcemia from MM. Unfortunately, I basically ignored them except for seeing a chiropractor for the very severe muscle spasms I would get that came and went and moved around with about a 2 week duration in each place. Useless and one even broke a rib, exrays showed nothing. Did not refer me for blood tests. I popped plenty of tylanol and motrin and went to work and even took sailing scuba and golf vacations right up to 9 months later when the spasms were so bad I could not get myself dressed. My neighbor took me to a recommended doctor who immediately brought in Dr. LUTHRA A hemotologist who knew right away what it could be and got me into UCONN and through many tests all day. I was in severe pain at the time. Naturally admitted to hospital. Dr.'s and their onterages came through regulary every day. A few days later they gave me my diagnosis. It was then I found out my Dad had MM in 1984 and died within months of his corrected diagnosis (Dr. At Jackson Memorial in Miami Missed large tumor on spine while focused on lungs which after taking most of one out discovered benign lesions) Dad died of nuemonia after receiving radiation. I always thought it was bone cancer from asbestos exposure as a marine engineer. I was put on thalidimide and dexamethasone for 6 months which brought my very high lamda light chain numbers down far enough for a autologous stem cell transplant (through Yale with Dr. Cooper). I got 38 months of normal counts from this but it was a good year of recharging energies, etc. Immune system has never been the same. When my numbers started creeping up again both Dr. BONA from UCONn and Dr. COOPER agreed that it was time for a revlimid protocol that I tried for 1 year without the dex. But very slowly my numbers increased enough to add the dex. I have been on this cocktail for about 1 year and my numbers are trending down very slowly. The side effects mostly from the dex withrawal every week for 1-2 days are bad. I must be near my bathroom and sleep many hours. I began effexor to help with my very nasty moods. Big help. I go for pamidronate intravenus every month to keep my bones from breaking down any further. I have lost 3 inches of height from spinal compressions and lesions. I am very lucky that my aches and pains are very manageable. Fatigue is big problem and digestive roller coaster. MOM when needed big help. Exercise especially yoga helps so much. I have gained 20 pounds since onset of illness at 47. Immediate Menapause from thalidimide, steroids, and gelato with much lack of motivation/discipline can be blamed. This is the first time I have shared my story but what I really wanted to tell you all is when I was looking for the best Drs. and place for stem cell transplant I met with Dr. RICHARDSON at Dana Farber in Boston. He had researcher from Italy who came in to talk to me about his findings which noone mentioned here. He told me MM is not hereditary. But our ancestral genetics play a large roll. Black men from west Africa have the first highest incidence, somewhere next are people of Mediterranean decent. ITALIAN, GREEK, JEWISH, ETC. WIHICH IS WHERE MY DAD and I fit in. I believe the stresses of chemicals and pollutants, acute trauma or emotional long term stress likely trigger our MM gene. I hope they find A CURE Quickly! For all of us.

We wish you all the best in your "new" life with Juanita. You were great leader for us as we began our journey with the IMF and our support group.
We will miss you and your expertise.
Hugs and blessings.

So sorry to see you retire. You have been a tremendous help to me over the past year and one half and I'm sure you have helped countless others.
God Bless You and know that you will be missed.
George Jurak
Polk County Florida MM Support Group leader

Wishing you the best of everything life has to offer. Thank you so much for your leadership and friendship over the years. I will truly miss all of the mm updates I've counted on receiving from you to pass on to group members!
You've worked long and hard for many years helping others...now it's your time! Enjoy, enjoy, enjoy!!!!
Please do keep in touch ~ you'll be missed.

All the Best,
Carol

Andy,

We and the NETN MM Support Group will truly miss you, and wish you the very best. You and the IMF were a lifeline to me when I started the group in 2007. Best of luck to you, but don't be surprised if you get a check up call from me ever so often to see if you have your "honey-do list" up to date.

All the best, Darlene Jessee

Tea and crumpets or wine and cookies. Moderation always. Lots of exercise and connection with family and community. Then - a nap. I like it!

It is interesting to see that red wine drinking is possibly one of the commonalities contributing to longevity. Had read that was true in earlier studies. Too bad one can't drink alcoholic beverages while being treated with any number of myeloma drugs (Revlimid, dex, and Velcade, to name the ones in my experience). Guess that means I'll only live to 99 if I move to Sadinia or Ikaria and adopt the lifestyle?

Dr Durie--Thank you so much for continuing your research on "cookies!" I love that your investigations into Myeloma include not only a focus on longevity but also on "living the good life." With a smile, I raise my glass to you--
Salute!

I would guess that Dr. Durie will live to be 100, because he is one of the most cheerful, optomistic, welcoming individuals I have ever met, working tirelessly on behalf of a dreadful disease. Thank you, Dr. Durie!

My Sicilian mother would be proud that you chose this very Sicilian cookie called CUCIDATI

The traditional Cucidati is a fig filled cookie with three different nuts, pistachio's, almonds and walnuts, chopped dried and soaked figs in red wine, raisins and apricots, orange and lemon peel and many more amazing ingredients.

I suspect that many mediterranean cultures like the Greeks and the arabs have a very similar cookie.

Thanks for reminding me! :D

My uncle just passed away at 103. Being that we are of Italian decent I asked him at his 100th birthday party how much wine he drinks daily and his answer was a shocker.'

He said that he never liked wine and only drinks it as a toast or at a family gathering and does not drink much if any any alcohol at all.

So let this one go. :D

I am a caretaker of my husband with M Myeloma...it is very hard, and we don't seem to have support in my area. We are big on eating very well, taking good supplements and just hanging in there. I was wondering if anyone has licked this disease, ever....and what did they do in their diet? I think about taking him down the road of Macrobiotic Diet...I have done it in the past, but not with this disease. I so want to help kick this disease....and feel so helpless some days, and think if I could only feed him the right foods. Please, someone help me think that I can make a difference. Thank you.

Everything should be taken in moderation. Too much of something is bad enough. Thanks for your continued quest for answers regarding long life and cookies. A good diet can only succeed with a good client.

Dr. Durie - love this post, especially Vitamin "S". I was called "Pepsodent Girl" as a child, and I'll keep smiling. Who remembers that brand of toothpaste? Thanks for the wonderful post.

The flavonoid that Dr. D is referring to is Resveratrol, a magic substance in red wine and skin of red grapes!! Lot of research has been done on Resveratrol!!
Mr. Antonio Todde, a centenarian from Sardinia attributed his longevity secret to a glass of red wine and he says "Just love your brother and drink a glass of good wine everyday!!"

The article only describes how they live and what they eat. Changing one's diet and getting exercise will undoubtedly increase your life span but the article says nothing about how one's genetic makeup contributes to one's longevity.
Many people in my family have lived into their 90's and one aunt lived to 104 - her diet was healthy but did not include goat's milk or herbal teas - matter of fact she drank instant coffee and ate canned vegetables, was allergic to lemons and didn't have the money to buy olive oil. She did exercise daily though and had very close family. My father died at 93. He ate everything - was an omnivore - and ate more meat than vegetables - cured meats we just delicious to him - he got very little exercise and never drank herbal teas.

I think the folks in Sardinia and in Ikaria just happen to have great genes and the combination of their genes and the healthy foods they eat are what keep them living so long.

I grew up on Real Food long before the modern fast food revolution and agri-businesses. Imagine,my parents never bought anything packaged, frozen or canned! The taste of "Fresh" is amazing! And, yes it does need a little more time to prepare. However, one can really prepare a great meal in 1/2 hour.

In addition, I have been thinking a lot about what else might fosters longevity in Ikaria. And my conclusion is: the people on that Island "flow" with life. There is an Italian proverb " Che viene, viene" Meaning--"Whatever happens, happens; we will accept it and carry on." It is similar to the Costa Rican phrase, "Pura Vida." When one flows with life, stress is reduced. Creative problem solving replaces worry.

The real meaning of health is a constant well-being-ness physically, mentally, emotionally and spiritually. Flowing with whatever happens in our lives, un-clutching to the constant chatter in our mind and being present in the moment creates flow, acceptance and peace.

Living each moment of life fully, even with Myeloma or any other disease disability or suffering is the challenge!

How to flow with life?

Meditation is a technique that helps us to achieve this.--It is beneficial to body, mind emotions and spirit. Meditation reduces stress and benefits the immune system. There is so much research regarding this. --Check out some of the most current data. Scientists from various disciplines have been gathering the data since the 60's. (Anyone interested is some of this data can just email me.)

It is time to get over the myth that meditation is some kind of spiritual hocus pocus. Yes, it is a technique developed in the East; and yes, it does require discipline and practice--so does playing the piano, writing, creating and inventing, --almost anything we do.

We have so many wonderful therapies now for Myeloma that control this disease and prolong life. We can support this with Real Food, and with techniques that reduce stress, support our immune system, and center us so that we are not always the butt of our knee-jerk reactions, fears, judgments, anger, etc. Novel therapies and Real Food! To these, I would add Meditation and Exercise (Physical Movement of some sort).

Do I sound passionate about Meditation--Yes. I have been a practitioner for almost 40 years. And I can speak and write volumes!!

Back to Real Food--How wonderful that people are beginning to understand that what we ingest affects us. Truly, what we ingest on any level either energizes us or harms us to a greater or lesser degree!!!

Thanks Dr. Durie for taking a stand on nutrition for MM patients. I felt pleased with my own journey listening to the '12 Keys to Nutrition". It took almost three years since diagnosis for MM,Stage Three, to significantly change eating habits. Dinner is now two vegetables,a legume,a grain,and much smaller serving of meat. The change has definitely affected my carnivore partner's attitude toward vegetables.
In supermarkets, we read labels,mostly avoid center aisles, source in season vegetables locally, and shop critically out of season. Some Asian markets have become a regular part of our shopping. The local butcher's organic beef and chicken, we've discovered costs no more than the supermarket.
With diet, supplements and treatment the myeloma is finally under control and most of my old energy has returned.

We are what we eat, what we think, what we believe and what we do. Practicing spirituality in the form of meditation or prayer calms our bodies and minds. Being mindful of what we ingest is therefore for very important. Real foods in meals with ingredients as nature made them, good music, genuine friends, playful laughter, happy movement and gratitude makes the days of our life worth while. We make an effort to enjoy everyday for the gifts it contains and let tomorrow take care of itself. Yesterday we were told that for now there is no evidence of the disease. Happy words we will celebrate for now.

We really found a lot of good information in Dr. Durie's recent telephone conference regarding the value of good nutrition in the survivorship of MM. We hope there will be more of this type of information.

Thank you for this wonderful article Dr. Durie! I couldn't agree more that our society has become so far removed from eating real foods and stress reduction. I think we have gotten too caught up in the hustle of life and boggled down by all the different stress factors life can present that we often times forget to enjoy and love life. And for far too many, life is ending far earlier than it should. Each day is a gift, and being diagnosed with myeloma at 22 has taught me the value of living each day to the fullest! God bless. Thank you for all the hardwork you do for all myeloma patients!!!

Thank you so much for bringing this to our attention! I can tell you how impactful the practice albeit limited of meditation, yoga, and a healthy positive outlook on life has been on my life and health!

Thank you, again!!

Driving south from the northeast a week ago, my wife and I stopped for the night just south of Jacksonville, FL. Once settled in, I went out for take-out pizza. The man at the counter was on the phone and when he got off he apologized saying it was a family matter, his aunt had just passed on at age 93, and had a good and wonderful life. I said that I hoped he inherited those genes. He said chances were good in that regard. His grandfather just hit 101, and his grandfather's brother was as sharp as a rapier at 103. His dad was pushing 90. "I blurted out, you're not Sardinian by any chance?" His eyes popped as if "The Mentalist" just came in for a medium special. "How ever did you know?" The family all hailed from Sardinia. He was not aware of the Sardinian life cycle, which thanks to you, I was. Unfortunately, I did not ask him about their diet stateside. His long-lived forebears have been in the USA for quite some time. Made me think that perhaps the Sardinian woman who told you that "we just forget to die," might be closest to the the facts. A mind-set in the DNA? The pizza chap looked late 40s. Was 61. A diet long on pizza and red sauce no doubt. :)

Hi, i am K.S. and am keen on the topic of diet discussed so far. Just had my stem cell collection done and am waiting for a date for the transplant. I agree that diet has a impt role and I wish there is more said on the kind of nutrition which will enlighten mm patients. For eg. I somehow was told to avoid sea food except for fish. Any comment on this will be good.

I recommend a good book I recently read, “Contemplative Aging” by Edmund Sherman. Meditation is a key practice in this guide to “A Way of Being in Later Life”.
ISBN-13: 978-1-884092-99-2. Publisher Richard Altschuler & Assoc.
When people ask me, “what are you doing now that you are retired?” I simply respond that “I am no longer doing and am now being”. Meditation is an important contemplative practice and Mr. Sherman guides you through various ways to learn and master meditation.
You can also buy the book on Amazon.