Regular readers will likely remember that I take part, time to time, in a series of panels on Myeloma hosted by the wonderful people at Cure Talk, with help from Priya Menon who has done a remarkable job of assembling this program.
At 5PM Eastern on February 26th, there will be a panel discussing "Cure vs. Control" and featuring noted Myeloma expert Dr. S. Vincent Rajkumar of Mayo, Rochester.
This is of particular interest to me for two reasons. First, Dr. Rajkumar took part in a very thoughtful debate with my doctor a few years ago, and this debate can be found on youtube here (this is part 1 of 4). I'm looking forward to learning if Dr. Rajkumar, in light of the progress made in the last two years and the announcement of the Black Swan initiative by the IMF, has reconsidered his stance that the disease is not curable.
Second, and probably more important to me personally, is that Dr. Rajkumar was the author of the paper that discussed the presence of transient monoclonal protein after transplant being a good thing. I'm interested in learning why we are just now observing this (when for years we knew that oligoclonal bands appear during immune system recovery), what difference if any there is between the two types of bands appearing post-treatment, and what impact it this might have on assessing the effectiveness of treatment. Since I exhibited both oligoclonal and -- much later -- monoclonal bands during recovery, I'm particularly intrigued.
For instructions on how to participate on the call, including the opportunity to ask a question of the panel or Dr. Rajkumar, click here.
You can also post a comment here with a question for me to ask the good doctor!
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Hello, I am new to your blogs but have enjoyed what I have read so far. I had radiation 5 yrs ago for a solitary plasmacytoma in my right femur & have been in remission for 5 yrs. I recently had radiation to my right iliac bone. My Dr believes I will have to start chemo & have a SCT within 3 mths to a yr. due to MRI showing some spots on my spine. I live in SW MI about 2 1/2 hrs from Chicago. I can not financially afford to ravel back & forth to AK. Also my insurance will only pay for 1 SCT. Are their other hospitals that do this same style treatment & if so where? If not how would I go about finding the best hospital or Dr to go to that would be close enough for me to travel back & forth to? Is there anyone in Chicago that anyone could recommend? Another question I had is when you talk about yrs of survival… is that starting from the time of the 1st solitary plasmacytoma or from the time you begin chemo treatments due to full blown MM? Thanks again for sharing your experience & knowledge with the rest of us. Happy for your great news hope to continue reading more great news. Love the word CURE! Terri
ReplyDeleteso what you're saying is 5 years later from being on revol med a secondary cancer can still show up I am on revlimed for one year now post stem cell transplant in December 2012
ReplyDeleteSister Grace, if you are referring to my post, that is incorrect. I have never had any chemo only radiation. If you are talking about Nick's post I will let him reply to that.
ReplyDeleteNick, getting a little worried. Hate it when I don't see an updated post. I know, I know, you're living your life!! :) My husband was dx around the same time as you. Just really feel comforted when I read your posts.
ReplyDeleteHi there, folks. My apologies -- have been a little swamped at the office here!
ReplyDeleteSome responses:
* Terri, please do a google search for Phil Brabbs. He is in Michigan and he underwent a very similar protocol to mine -- although it was a little less aggressive. I don't know exactly where in Michigan he is located. I do not know of any particular experts in Chicago. I suspect that doctor in Michigan would be open-minded about executing the Arkansas protocol as it is not dissimilar from what he uses. As for insurance, you may be able to fight it (with or without the help of the center where you go for treatment) by arguing that the center's protocol has the potential to be curative, which a single auto transplant does not. Lastly, the UAMS survival statistics are generally from the commencement of complete remission, though depending on the study and the purpose of the statistics they may also measure from a point after remission is reached (if you want to exclude all treatment-related mortailty) or from the beginning of therapy (if you want to include all of it), etc.
Sister Grace, my understanding is that if you have had a transplant, after two years of continuous Revlimid use the chance of a secondary cancer (commonly a form of Leukemia, but in my case it was a skin cancer called a squamous carcinoma) triples, from around 2-3% to around 7-8%. I would ask your doctor about his opinions on this. One argument is that it's still not that high a number and the Revlimid is very effective against Myeloma; the counter-argument is that eventually the balance between those risks shifts.
Kathy, thanks for your concern! I hope your husband is doing great!
Thank you for your response I appreciate the knowledge & experience you share with all of us. Keep up the good fight.
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