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New Insights at the IMF’s Myeloma Center Workshop

May 10, 2012

This past weekend, I attended The International Myeloma Foundation (IMF)’s Myeloma Center Workshop in Little Rock, Arkansas. This workshop was held at the new Winthrop P. Rockefeller Cancer Center on the campus of the University of Arkansas for Medical Sciences (UAMS).  Once again, I was taken by the engagement of these patients and caregivers in their illness.  This cancer affects approximately 20,000 new people each year and there are over 100,000 patients receiving treatments for their disease at any one time in the USA.  Because the population of people affected by myeloma is so small when compared to other cancers such as breast or prostate, it is always surprising to me how many participants attend the workshops and seminars presented by the IMF.

I believe that part of the reason there is so much engagement is because the IMF does such a wonderful job of outreach to this patient population.  Also, it definitely helps a lot that many myeloma thought leaders, including Dr. Brian Durie, IMF Chair of the Board, Dr. Bart Barlogie from the University of Arkansas for Medical Sciences (UAMS), and Dr. Ken Anderson from Dana Farber / Harvard Cancer Center are able to participate at these conferences.  These speakers give their time and talent freely for these educational seminars and workshops and are personally engaged with their patients and their treatments. Without them, these events would not be the same.

One topic of note that I have been paying more attention to is the use of FDG-PET scans in Myeloma patients. Those abbreviations stand for: “fluorodeoxyglucose (FDG)-positron emission tomography (PET)”. My interest in this topic comes from personal experience, as I have had two PET scans. (I do have to say that in the beginning of my breast cancer journey I was so poorly educated on the basics of cancer diagnoses and so overwhelmed with information that I truly kept hearing “pet” as in, what would my having pets have to do with my having cancer?)

This test has become one that is more often utilized in myeloma patients to “see” if and where the myeloma is active in a full body scan.  This type of scanning uses a radioactive dye as well as a glucose agent to seek out the hot spots.  Myeloma cells feed on sugar and because of this. they are highly sensitive to the glucose.  After a waiting period of about one hour, the patient then gets into the scanner and stays still. Unlike an MRI, this scan is extremely quiet and I found that the experience was very comfortable.

The FDG-PET scan is useful for the following reasons in myeloma patients according to part of a presentation made by Dr. Edgardo Angtuaco:

    • Measures metabolic activity
    • Identifies macrofocal disease
    • Detects extramedullary disease
    • CT-Portion very sensitive in detecting osteolytic lesions
    • CT-PET has prognostic implications
    • Medicare approved

Because of this, it is a tool that is becoming more common for use in the cancer population for diagnostic purposes, as in my case, and in continued surveillance, as it is used for myeloma patients.

Myeloma cells’ attraction to sugar also brought up many questions regarding sugar in myeloma patients’ diets, too.  In addition to being addressed at the conference this topic was explained in this recent blog post by Dr. Brian Durie. In it  explains the relationship of sugar and stress to the myeloma patient.  I found it very interesting information that pertains to cancer patients facing myeloma or other cancers.  As always if you have questions regarding this or anything pertaining to your treatment or personal situation, asking your doctor is our recommendation.

If you are a myeloma patient, the International Myeloma Foundation  is an amazing resource of support and information for you. I encourage you to get connected with them if you are not already. You can visit their website to learn more about this cancer and this great resource. There’s also information about how you can help these doctors develop research to find treatment options for Myeloma that will help these patients live longer and more healthful lives.

Lastly, we at Diplomat Specialty Pharmacy also want you to know that we have specific programs in place if you are taking an oral chemotherapy, like Revlimid, for your myeloma.  Feel free to contact us at 855-284-4642 or dspadvocacy@diplomatpharmacy.com if you need help accessing this medication.

(This blog post was edited on May 15, 2012, in order to clarify some points made regarding participating physicians and sugar-related research. Thanks to the commenters for their input.)

Brenda Hawkes is a Patient Advocate Liaison for Diplomat Specialty Pharmacy.  If you have any questions or comments about the Advocacy Navigator Program, please feel free to contact her at bhawkes@diplomatpharmacy.com.

7 Comments leave one →
  1. Hugh permalink
    May 14, 2012 5:46 pm

    Once again the subject of sugar and the attraction of Myeloma Cells to sugar comes up. Should we patients make an effort to not eat candy, not ingest more sugar than absolutely necessary?

    • May 15, 2012 9:50 am

      Hugh, This is a good question. I would suggest calling the IMF Hotline Number with that question.
      USA and Canada only: 800.452.CURE (2873)
      Elsewhere: 818.487.7455
      E-mail: TheIMF@myeloma.org
      You may also want to discuss this with your Doctor. Thank you for reading and writing.

  2. Manuel Vasquez Jr. permalink
    May 14, 2012 7:14 pm

    This article is not accurate when it mentions the doctors and giving their free time and continue to see their patients, I know for a fact Dr. Durie doesn’t see patients. The Appointments might be made for patients to go see him and are told he no longer sees patients. He can even make a promise to see the patient and ignores the appointment. AS for the other doctors I have no personal information.

    • May 15, 2012 9:55 am

      Manuel,
      Thank you for your comment. We all have different experiences with our doctors and we appreciate your point of view.

  3. Kathy permalink
    May 14, 2012 11:44 pm

    The comment on sugar needs to be clarified. The article leads one to a conclusion that is not necessarily right. ASK YOUR DOCTOR!!! Don’t believe everything you read.

    As for the doctors seeing patients… I had not idea and was shocked to read Manuel’s comment.! I can tell you first hand though… DR. BARLOGIE DOES SEE PATIENTS. If you can get there I’d recommend him and UAMS!!! They are amazing!

    • May 15, 2012 10:57 am

      Hi Kathy,

      Thank you for commenting. We added a clarification in order to make it clear that we believe everyone should discuss new research findings with their personal physician.

  4. obuoha ejike permalink
    May 15, 2012 3:30 pm

    Am a MM patient in Nigeria, i pray u to extend a helping hand jn all fronts in myeloma care, particularly affordable revlimid.

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