In the last year or two we have heard hopeful words about turning myeloma into a chronic disease, especially for low-risk patients, and with the "novel" treatments like Revlimid, Velcade, and the other drugs currently in trials.
BUT WE ARE NOT THERE YET, not even close. With the best of care, many of us are still dying. This is my own little list of people that I have known personally, face-to-face, mostly from support groups in Minnesota:
- Elizabeth Redman, 2010
- Elijah Alexander, 2010
- Donna Costello, 2010
- Gene Early, 2009
- Helen Berg, 2009
- Ken Meister, 2008
- Mike Ohara, 2007
- Joyce Momont, 2006
- Donna Penrose, 2005
The point? We can't let up. New drugs like pomalidomide, carfilzomib, and the monoclonal antibodies can't come fast enough.
Stay tuned for news from ASCO, the annual meeting of the American Society of Clinical Oncology.
I am so very, very sorry to hear of the loss of your friend, Elizabeth Redman. You are so right that we are not at the chronic disease stage for myeloma. I commented to my husband yesterday that in the last six months, so many whose blogs I read are gone. I am waiting to hear what drug I can use next since the neuropathy from Velcade has made my doctor take me off of it. I too wait for some miracle from ASCO. Gentle hugs to you Don on your loss. Rebecca Weber
ReplyDeleteDon;
ReplyDeleteYou are so right! My support group lost a member last week. And, of course, our group of bloggers here at Planet Myeloma just lost one of our finest writers when Nancy of Because I Said So succumbed to her aggressive MM.
Developments are promising but it all takes time; time that for some of us is in short supply. With that in mind, thank you for participating in the clinical trial at the Mayo Clinic. That is how the science goes forward.
Don:
ReplyDeleteMy thoughts and heartfelt prayers are with you and all who love Elizabeth. I agree with you - she, and the others are gone way too soon. Sadly, we have too many lists like this.
I also agree with you that despite the ever increasing hope of new treatments, it is not the time to let up. Our community of patients, caregivers, doctors, nurses, researchers, fund raisers, pharmaceutical companies and any and all vested parties need to continue in overdrive to get control of MM. Thank you for boldly sharing your experience with us.
Peace to you. Sean M.
www.myelomayoureloma.blogspot.com
It's the same our end Don, with more friends missing from our regular clinics! As you so rightly say it's really far too soon to talk of MM as a chronic disease. We all SO want there to be an answer but in my own way I have read and read and discussed endlessly and there is not a 'cure all' yet. Velcade has failed for Hamada and we are fast running out of allowed treatments here. The next will be Revlimid after a short rest. How we thank those like you who take-up the challenge of clinical trials, the results of which can't come soon enough. Blessings to you and Sunshine.
ReplyDeleteDear Don, your blog brings much hope to me. With 38 years and 3 kids under 4(and of course mm) I would like to read more good news for my hope account :-). When do you (as an expert) think, that this chronical status of mm will be developed? Do you and the top experts of the mayo clinic think, we will need five or ten more years. Informations are so overwhelming - and sometimes this chronical desease status has been propheted 2003. Now we have 2010. Best regards, Thomas
ReplyDeleteHi Tom,
ReplyDeleteI'm far from am expert, but I have an opinion on everything anyway :-)
I suppose that myeloma might already be chronic for a few lucky people whose disease moves only slowly, because new treatments may come along as quickly as they need them.
It may take many years to develop the treatments for those who need them most, however, the people whose myeloma goes fast. It's an individual issue, and right now few people can take little comfort in the talk about making myeloma chronic.
Hi Don, thank you for your comment. I like your blog, because of your "make-it-a-masterpiece"-philosophy.
ReplyDeleteI will try to do my part to accelerate research & development with saving money. This one sounds good, but as you said, they need years or months?!? :-)
http://seekingalpha.com/article/203145-micromet-inc-q1-2010-earnings-call-transcript
Thomas