The multiple myeloma patient and family seminar in Florence. Part 2

During the question period, I made the point that non toxic plant extracts with strong anti-myeloma activity, such as curcumin and resveratrol (and the more than 20 other substances that I have listed on my blog, and who knows how many more I will come across…), have been studied in laboratory settings both in vitro and in vivo, but it’s about time to get those substances OUT of the lab and into clinical trials, if for no other reason than the fact that many of them increase the effectiveness of chemotherapy while protecting healthy cells from the damaging effects of chemo as well as reducing its toxic side effects. I mentioned a European clinical trial that is currently testing resveratrol alone or together with Velcade on myeloma patients (it began in June: This is a positive start, I said, but it is hardly enough. I then asked what we patients can do to help get this process in gear quickly…didn’t really get an answer…a complicated issue, I know…

Dr. Durie, however, did remark that these plant extracts could “even treat” the disease, in the case of stable MGUS and SMM. He also reminded us that those taking Velcade should be careful about drinking green tea and taking vitamin C and alpha lipoic acid (incidentally, I posted about EGCG interfering with bortezomib in March 2009: He added that green tea aficionados don’t have to give up their tea drinking habit entirely, but can simply skip having green tea on their “Velcade days.” This may be good news to some of you…

Another interesting titbit. When asked about risk factors for myeloma, he mentioned a recent “Blood” paper on pesticide exposure, but he also said that one of his patients used to be on call 24 hours a day for 4-5 different companies. That meant that this guy had to carry around several different cell phones turned on at all times. Well, this man developed myeloma in the pelvis area, right where the cell phones had been resting…hmmm, gives some food for thought, doesn’t it? (I possess a heavy, ancient cell phone…in fact dinosaurs used to send text messages with it…but it is always switched off; I carry it in my purse and use it only for emergencies…)

There was also quite a lively discussion on the usefulness of PET-CT scans. Actually, I was the one to begin that discussion, based on a question that a friend of mine, who was not able to attend the meeting, had asked me to ask on his behalf. Dr. Durie said that PET can help us determine if the myeloma has become active, for example in the case of a sudden paraprotein increase. It follows that this test can be useful for those who are smoldering. I have to say, though, that I will NOT have radioactive sugar injected into my veins unless I really really REALLY have to! This is another item that I have added to the list of questions for my haematologist.

An Italian haematologist who works at Careggi university hospital also gave a speech. I was very pleased to hear her state that when myeloma is in a stable, smoldering stage, it is best NOT to treat. Early treatment, she said, doesn’t prolong survival; on the contrary, it could be deleterious because of the toxic side effects of chemotherapy. I will never forget that in 2005 my Careggi haematologist wanted me to have two cycles of Velcade and then an SCT in the summer of 2006 (this never happened, see below). That wasn’t very long ago. I am glad to see that things (may) have changed since then…

Speaking of second opinions, I want to describe a rather upsetting incident. A soft-spoken young woman, who was at the seminar on behalf of her father, a MM patient, told us that her father’s doctor got very angry and yelled at her when she told him at one point that she wanted a second opinion. Well, this sort of attitude on the part of any doctor/specialist is simply unacceptable. When we go to our doctors, we have to put ourselves and our health first. A second opinion, even a third, might save us from undergoing unnecessary treatments (etc.). I am a case in point: in 2005 I consulted three different MM specialists, two in the U.S., one in northern Italy, and they all told me that if I didn’t have any CRAB symptoms (I didn’t/don’t) there was no reason to begin chemo. Oh, and something else: if a doctor ever raised his/her voice with me, I would leave immediately and never ever go back. The very thought of that sweet young woman being mistreated makes my blood boil…

All in all, this was an interesting seminar, and I learned a few useful things, such as the serum iron/ferritin thingy. I also had the wonderful opportunity to speak privately with Dr. Brian Durie and Susie Novis and, separately, with Greg Brozeit, the director of IMF Europe. Dr. Durie wasn’t surprised to learn that curcumin has kept me stable now for the past four years. He told me, in fact, that a “subset of smoldering patients” does very well on curcumin. Indeed.

One of my favourite moments: in response to a patient’s question, Dr. Durie joked that “this just goes to show that myeloma treatment is an Art, not a Science…so you should be very good at this in Florence!” Chuckle, chuckle!


  1. Fine to read this. Today I asked for another doctor, because with my current doctor I could not talk, especially about things like the use of non toxic products. Quite a relief!

  2. It is wonderful that you of all the MMers I know went to and have shared your insights from the Patient/Family seminar. I of course expect insights to continue popping up here. Thanks!

    Although there were several hundred at the seminar I attended in Portland, Oregon several years ago I felt a deep sense of true compassion, insight fostered by years of contemplation and a desire to address all our concerns and questions.

  3. I have been reading with great interest your blog. It is beautifully done. As to why certain scientifically promising therapies do not go into clinical trials, may I refer you an organization thar we formed ( whose express aim is to address just this issue. Our website will soon be updated with many new ideas as to how to move this agneda forward. Feel free to tell us what you think would be the most promising trials for myeloma…

  4. When I was diagnosed with this MGUS, I decided that I would try to find our what I could do to prevent it from becoming multiple myeloma. At Memorial Sloan Ketterring in New York, they told me that I should be checked every six months, but that there was nothing I could do about it. My MGUS is a spike in my immunoglobulin M line and I used to have one in the Kappa line as well. The M line was up to 1040. The normal range is 50-300. Through supplements (about 25 per day) that include curcumin,resveratin, cyto-redoxin, recancostat, omega 3, folapro, vitamin, D, bio-identical hormones, cutting drinking from 1-2 glasses per day to 1-2 per week and trying to eat a better diet, it dropped to 815 after six months and now after one year of taking Dr. Braverman’s advice, (the above is his protocol) it is now at 762. I also stopped coloring my hair. I found some research showing a link between haircolor and MM. I had been coloring my hair for years, every 4 weeks. It was a huge decision to go gray, but fortunately my husband loves it. I am 55 and a yoga teacher of 35 years. I am currently working on a concept called Pulse Yoga, using free weights and micro movements in traditional yoga postures. I am not sure which one of these efforts is making my MGUS improve, maybe a combination of all of them. I just wanted to share this so that others may benefit.

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