The multiple myeloma patient and family seminar in Florence. Part 1

 

IMG_3587There weren’t very many people at the seminar yesterday, but that was a good thing, as Susie Novis, president of the International Myeloma Foundation, pointed out, in the sense that we had more time to ask questions and didn’t have to “compete” with 1000 other patients/family members.

Dr. Durie is a first-rate public speaker, in my opinion. His presentation, titled “Myeloma 101,” was clear and easy to follow. I took copious notes, out of which I will choose what were the most significant topics, in my opinion. Today’s post turned out to be way too long, so I will publish Part 2 tomorrow.

I was particularly intrigued by something that came up while Dr. Durie was listing a few of the tests that can help determine if myeloma has become active or not. He mentioned the importance of monitoring our serum iron and ferritin (=iron stores) levels, which came as news to me. He explained that, when myeloma becomes active, our bone marrow stops producing red cells, which is why our haemoglobin decreases and we risk becoming anaemic (after all, “Anaemia” is the “A” in the “CRAB” acronym). At that point, he said, the unused iron begins accumulating in the body. So a sign of active disease could be an increase in iron and ferritin levels. Well, knock me down with a cat hair…I will never again whine about having low serum iron and ferritin (actually, my most recent tests show that they are both at the lower end of the normal range…which is fine with me now!)!

He also showed us a slide on Michael Pollan’s precepts (see: http://tinyurl.com/ydmuaem), including these:

  1. Don’t eat anything your grandmother wouldn’t recognize
  2. Shop at the edge of the supermarket
  3. Eat slowly

Of course, number 1 refers to processed foods and whatnot. I wonder what my grandmothers would have said about, er, homemade curry dishes and turmeric bread…

Let’s see, breezing through my notes…Dr. Durie offered the following sensible advice for multiple myeloma patients:

Spiritual health –> Find your own way –> Achieve balance –> Live in the moment –> Create new plans –> Expect good results!

He then showed a slide on Randy Pausch, a well-known computer scientist who died of pancreatic cancer in July 2008. On September 5th 2008, I wrote a post about Prof. Pausch, see http://tinyurl.com/yfg3t3l If you haven’t seen his “Last Lecture, well, go have a look when you have a second.

During the question section, replying to a question about the H1N1 vaccine, Dr. Durie said that “most MM patients are not at high risk,” adding that older patients have some immunity to H1N1 because the same strain showed up in the 1918 flu pandemic. Those who instead are in the high risk category are young people and pregnant women. So basically, the H1N1 virus is, and I quote, “not such a big issue for MM patients.” Dr. Durie did recommend the following:

1. “have the regular flu vaccine, because we know it’s safe and can boost overall immunity.”

2. Aredia/Zometa turn out to be a very good treatment for the flu. An Asian study, he told us, recently showed that Aredia kills the H1N1 virus. He joked that as soon as we hear of a flu outbreak in our neighbourhood we should rush over to the hospital to have an Aredia infusion. I chuckled together with everyone else, of course, but I would instead double my intake of vitamin D3…! Oh bother, that reminds me, I should have brought up the issue of vitamin D and the Health Canada study on vit D and H1N1…phooey, I forgot. Oh well…

Another point: according to Dr. Durie, the H1N1 vaccine is not as effective in MM patients as in healthy folks. He did say that it might be a good idea for our caregivers to have the vaccination, though.

Well, what Dr. Durie told us yesterday made it easier for me to make a final decision on the “to vaccinate or not to vaccinate?” topic. My GP has already put me and Stefano on his H1N1 vaccine list, but I will ask him to remove our names. Stefano and I are both scheduled to have the usual, yearly flu shot, oh, and by the way, we always get the no-mercury vaccine (please make sure that you do, too! Our vaccines should be the thimerosal-free ones). But no, we won’t have the H1N1 vaccine. We will try to avoid crowds as much as possible (ah, you should see me zoooom through the supermarket these days…as fast as a puffin with a beakful of sand eels, whizzzzzing through the air…and if I hear someone cough in the immediate vicinity, I am out of there faster than you can say “ashwagandha”!) and take the usual precautions that I have written about so many times.

Okay, that’s plenty for today. The rest…tomorrow!

5 Comments

  1. Another interesting view. Here (Canada) they say people with a compromised immune system should have the vaccine and caregivers definitely should get it too. I was born way after 1918 and it’s nice to hear that in this context I am “young”. I am still debating myself, but lean toward getting it.

  2. Hi Margaret;

    As to H1N1, I would point out that you are a young MM patient! And, you are in contact with many young people through your job.

    Glad you could hear and meet with Dr. Durie and Susie Novis. I’ve been to their two-day Family Seminar. Given the opportunity, I will attend again. I think they come to Portland in 2010.

    Love the image of you flying like a Puffin…

  3. Hello, I am doing a research paper on turmeric, and I needed a primary source of some sort, or an interview, and I reviewed your paged and I wanted to know if I could use your information as a primary source, and quote some of your experiences? ( If I am not mistaken, you shared some of your thoughts about Turmeric/ Curcumin for the link: ‘Curcumin: SIDE EFFECTS and WARNINGS’
    Thank you!

  4. Thank you so much for writing up your notes on the conference. I really appreciate it. Would have loved to have gone to the conference.

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