Myeloma Cure Panel Talk Show: Panelists Answer Questions From Participants – Part 1
The February Myeloma Cure Panel answered over 20 myeloma questions from listeners. This is part 1 of the compilation. The questions featured here were answered by Pat Killingsworth and Gary Petersen. You can listen to the Cure Panel broadcast here.
Q: Do many people not take Dex, because of side effects, and if so, what are some of them experiencing?
Pat Killingsworth: Dex does have its share of side effects. Unfortunately, dex enhances every single myeloma therapy. It could be hard, but chemotherapy is hard at some point. We have had people in our support group complain of difficulty in sleeping, blood sugar swings, etc. Not unusual.
Q: How dangerous is sugar? Does that include starches like potatoes? I know about the Mediterranean diet and we follow it to a large extent. But is cake, cookies, coke, etc completely “” verboten?”
Pat Killingsworth: It is interesting that Brian Durie, Medical Director of IMF, finally revealed in a series of blog posts on IMF website that sugar problems should be avoided. Rule of thumb should to minimize intake of sugar as much as you can. But a cookie, diet coke once in a while might not matter much.
Q: With the use of steroids for treating MM. What is the amount of people that developing avascular necrosis of joints. Mostly the hip, but also knees and shoulders. Please comment on helpful ways to avoid getting AV. Thanks.
Pat Killingsworth: I did a little bit of research for this question. I found that 6% of general population will develop necrosis at sometime during their lifetime. Now, 9% of people with myeloma will develop necrosis, i.e. 3% more. You can get necrosis of hip, joints, and shoulders. And as far as necrosis and dex is concerned, it could pose a problem.
Q: I have been diagnosed with CMML Type 1 Are there any clinical trials that are running near San Jose California? Are there any discussion sites for this rare form of Leukemia on line?
Gary Petersen: Your type of disease is rarer than ours! We thought we were the chosen but CMML is 15 times rarer than MM. There are three sites that I have found that will let you know of clinical trials; one of which happens to be the Curetalk site, TrialX. There is none that I saw near San Jose, however if you email me at editor@ myelomasurvival.com I will send you the site addresses. You may look on ACOR.org. Also, the three locations in the USA that seem to know anything about your disease are Moffitt, The Cleveland Clinic, and M.D. Anderson.
Q: Does regular blood work accurately show remission, or are there other means for tracking it?
Gary Petersen: Regular blood work will not show that you are in remission. When you say regular, I am assuming that you mean a complete blood count (CBC). This is a blood test used to evaluate your overall health and detect a wide range of disorders, including anemia, infection. It can tell not tell if you are in remission, for that it takes a Light Chain test, test for M protein in the blood or urine, or Bone Marrow Biopsy. Myeloma patients, however, often show anemia and low platelet counts.
Q: Data? Why is it that the data that is hopefully being collected at each major myeloma clinic is not available? I do not mean personal patient information, of course. This data would be critical to all, but especially the newly diagnosed who are making tough decisions about their treatments. Why does retrospective data require a formal study? It would be helpful to minimally be able to ask clinicians for broad trends on basic profiles (ex: heavy chain, light chain successes for specific treatments). I fail to see why this is not only available, but also continuously updated. I go to a major cancer center, the IT capability is there, but they assure me the data is not.
Gary Petersen: This is the very reason I started www.myelomasurvival.com. At diagnosis, I too, could not understand why this information was not readily available, and still is not after 7 years. I will let you know what I have been told over time.
– It is irrelevant because we treat each patient as an individual
– We do not collect the data in this format.
– Some people actually send their data by law to SEER, or to CIMBCR but do not know that it exists or do no chose to obtain it. Some do.
– One said this; I quote “One of our great failings as a program is that we do not have a wonderful database. We can give you the numbers of pts, but survival data would be harder to come by.”
– And with all due respect, the data is there, it is just not mined in a way that makes it accessible to the doctors who need it as a method to improve results, You cannot manage what you cannot measure! The doctors actually have to have to information systems, develop programs to get it, or to go through the files manually to summarize the data. Saving life always takes priority.
– One last point, some locations do find the value of data, and are trying to make your vision a reality. Dr. Hofmeister of The James has spent over two years and now well over $50,000 trying to develop a registry for The James and all of Ohio that can do exactly what you suggest. I hope it happens, and that it goes nationwide, but until then we operate in the dark ages of information sciences.
Q: February 18, 2013 at www.npr.org talks about a new med to keep Multiple Myeloma in control, what is your opinion on this new med?
Gary Petersen: The new drug they talk about is Pomalidomide, which is an iMID or in the same class of drugs as Thalidomide and Revlimid. It is one of the two most recently approved drugs for relapsed and refractory myeloma which includes another new drug Carfilzomib. If you go to the cure panel site, you will find a presentation by Dr. Shaji Kumar of Mayo and Dr. Edward Faber of UNMC who explain the advantages of these drugs. A quick summary is that:
-They work in patients when all prior approved drugs have failed
– Those in whom RVD no longer works, CzVD ,or RPD will likely work
– When used in combination for newly diagnosed patients the response rates are excellent
It had been nearly 10 years since a new drug had been approved for treatment, so this is truly great.
To be continued…