Sunday, August 30, 2009

IMF Patient & Family Seminar

Friday, August 28, and Saturday, August 29:

The International Myeloma Foundation (IMF) Patient & Family Seminar was interesting and information-packed, to say the least. We heard doctors from all around the country discuss topics like Ask the Expert, Managing Side Effects, Frontline Therapy, Role of Transplant, Bone Disease, and Approaches to Relapse. I think that about 100 of us myelomiacs attended, many with their caregivers. I've been dealing with myeloma for six years now, so a lot of the information was not new, but here are a few things that I learned, or perhaps re-learned:

Transplants:
  • It appears to make little difference in overall time of survival whether the transplant is done early or late, as long as stem cells are collected early before the bone marrow gets all beat up. A current Dana-Farber trial may clarify this further.
  • More transplants are done for myeloma than for any other disease.
  • The mortality rate for a single autologous transplant is less than 1%.
  • Revlimid can decrease the yield of a later stem-cell collection.
  • Medicare wil pay for one transplant up to age 76.
New Treatments & Tests:
  • Three- and four-drug combinations can produce very good initial responses, but it's not yet clear what happens if and when the combo fails. Will the individual drugs have any impact then?
  • Carfilzomib, the new proteazome inhibitor, is much less apt to cause neuropathy than is Velcade. Currently available only in trials.
  • Denosumab is a new monoclonal antibody with the potential to help treat osteoporosis and repair bone damage. It may replace Aredia and Zometa in some cases. Currently available only in trials.
  • Pomalidomide, the new thalidomide analogue, is succeeding in its Phase II trial and is now scheduled for a Phase III trial in 2010. Only available in trials.
  • A new "power needle" for bone marrow biopsies has been approved by the FDA. When manufacturing problems are overcome and it becomes available, it will make biopsies quicker and less bothersome.
Bone:
  • Myeloma causes bone damage in about 80% of patients, but not in the other 20%. This is unrelated to the aggressiveness of the myeloma. As it happened, a survey of attendees showed that 80% of us had bone disease.
  • Aredia and Zometa can eventually saturate the bones with bisphosphonate, and the half-life is 10 years, so therapy should be cut way back.
  • There is a risk of necrosis of the hip joint, and perhaps other joints, with prolonged dexamethasone use, especially with concurrent bisphosphonates. This is a serious problem if it occurs. The risk of occurrence is low, but I'm thinking I've maybe had about enough DEX.
Other Stuff:
  • Mayo Clinic in Arizona still uses high-dose dexamethasone with Revlimid or Velcade for the first two cycles, to get a rapid response. Often a rapid response is important for patients who have recurring disease.
  • Neuropathy from Velcade may be painful, whereas neuropathy from thalidomide or Revlimid is more likely to present as numbness.
  • Velcade neuropathy is likely to improve if treatment stops, though, whereas neuropathy from thalidomide usually does not.
  • Ibuprofen can defeat some of the anti-clotting benefit of aspirin. Oops.
  • "Hemonc" is short for hematologist/oncologist. Maybe I'll try that at Mayo, see if it flies.
  • Diet is important. Dr Durie's advice: (1) Don't eat anything that your grandmother wouldn't recognize, and (2) Shop around the edges of the supermarket.
  • There seemed to be a growing consensus that myeloma can be caused by benzene and various pasticides, even herbicides.
  • Two attendees reported that they were diagnosed with myeloma shortly after a significant weight loss. Dr Durie pointed out that toxins are stored in body fat, and may flood the body when fat is lost.
Anything that I should add?

Sunday's breakfast
Sunday's breakfast. There is oatmeal under there somewhere.

9 comments:

  1. Hi Don;

    You said, "The mortality rate for a single allogenic transplant is less than 1%." Did you mean autologous?

    ReplyDelete
  2. YES! Thank you. Mortality for allogenic was reported as 10% to 40%, depending on the type of allogenic.

    ReplyDelete
  3. Did they happen to comment on the sources of benzene. I know gasoline contains benzene additive, though ethanol does not. It this why petroleum based products are so toxic?

    ReplyDelete
  4. I didn't hear anything about sources of benzene. I was under the impression that it was a major component of gasoline, but Wikipedia suggests that it has been mostly removed from gasoline.

    Also, I didn't hear anything about how long the effect can lurk. A month? A year? 30 years?

    ReplyDelete
  5. hi Don,
    You might find the article below very interesting. For a different reason, I have just started magnesium supplementation. Let's hope it kills two birds with one stone.
    Best wishes,
    Paul

    http://www.naturalnews.com/z023279_magnesium_cancer_calcium.html

    ReplyDelete
  6. Very interesting, Don. I love your summaries...so clear, helpful and right to the point!

    I loved the advice that we not eat anything that our grandmothers wouldn't recognize, hehe.

    And the toxin-body fat discussion makes me want to go bake and eat a gooey chocolate cake right now...to ensure that the toxins stored in my body won't get released, of course! (no other reason...eh)

    Thanks!

    ReplyDelete
  7. Have you seen this Don? They checked the connection between pesticides and MGUs in Minnesota.
    Paul


    http://www.thaindian.com/newsportal/health/pesticide-exposure-doubles-ones-blood-disorder-risk_100204425.html

    ReplyDelete
  8. Hello!

    My name is Lee, I have just spent some time reading through your blog, and I wanted to reach out. I’m the blog coordinator for EverydayHealth.com. We’re currently recruiting people to write a weekly blog post about their various health conditions and I thought you might be interested. From what I have read, you have a touching and unique perspective on cancer, and I think the readers of Everyday Health would very much appreciate your thoughts.

    
Everyday Health has over 25 million monthly unique visitors to their website, and there is a lot of potential exposure and traffic to come from blogging with the market leader in online health information. It’s also an excellent platform to promote awareness about cancer and any non-profits or other related entities.


    
Let me know if this is something that you’re interested in and might like to talk more about.


    
Thanks so much!

    

Lee McAlilly

    lmcalilly (at) waterfrontmedia (dot) com
    Blog Coordinator, EverydayHealth.comHello!

    My name is Lee, I have just spent some time reading through your blog, and I wanted to reach out. I’m the blog coordinator for EverydayHealth.com. We’re currently recruiting people to write a weekly blog post about their various health conditions and I thought you might be interested. From what I have read, you have a touching and unique perspective on cancer, and I think the readers of Everyday Health would very much appreciate your thoughts.

    
Everyday Health has over 25 million monthly unique visitors to their website, and there is a lot of potential exposure and traffic to come from blogging with the market leader in online health information. It’s also an excellent platform to promote awareness about cancer and any non-profits or other related entities.


    
Let me know if this is something that you’re interested in and might like to talk more about.


    
Thanks so much!

    

Lee McAlilly

    lmcalilly (at) waterfrontmedia (dot) com
    Blog Coordinator, EverydayHealth.com

    ReplyDelete
  9. I like the diet advice. These days, my top priority is not to eat anything I can't pronounce. That lets out almost all processed foods, so it's mostly fruit, dairy, and the occasional bit of chocolate.

    This jumped out at me: "There is a risk of necrosis of the hip joint, and perhaps other joints, with prolonged dexamethasone use, especially with concurrent bisphosphonates. This is a serious problem if it occurs. The risk of occurrence is low, but I'm thinking I've maybe had about enough DEX." I've had a somewhat sudden, very dramatic increase in hip pain and this could be a clue.

    The IMF is offering a day-long workshop near here in October, but since I'm starting a clinical trial next week, I don't know if I'm going to be up to attending. Thanks for the good info.

    ReplyDelete