“Somewhere, something incredible is waiting to be known.” – Carl Sagan
There is a terrific blog post over at Margaret’s Corner on the continuing debate over Cure vs Control of Multiple Myeloma. I urge you to have a read and maybe you will understand further for those of you newly diagnosed the importance of more dialog with different doctors and facilities, before significant treatment.
If you are new on this journey, Margaret is a GIANT and a HERO in Myelomaville. Diligently posting and working on alternative therapies to slow the progression of MM. She documents and references her findings and suggestions. While she is not in full blown MM, much of what she finds to keep herself there is helpful to so many of us. The comments thus far are robust.
As frustrating as it is when you are in this, the continuing research to find answers and have the debate will hopefully serve us, but will definitely serve those who come behind us. Don’t be disheartened by the debate. Embrace the fact that it is occurring. Researchers are INTERESTED in finding the needle in the haystack! My hat’s off to them and a heartfelt thank you! No matter which side of the issue you are on, I THANK YOU!
POWER TO THE E-PATIENT!
I’m glad Karen, and I agree with what you have said. It is prudent to “keep up” with the MM news and research, while finding a solid perspective in it with regards to your own personal treatment choices is crucial to your well being.
When I first started to run into the debate and “other” choices I found myself a little distressed and then was able to look back, like those retrospective studies I hate so much, and walk myself through what we knew then, what I know now and finding peace with our choice.
Whatever the future holds in outcome based studies, we did what we thought best, are happy with it then, and now. I don’t see us changing in our view of that. But I will fully embrace a clearer path no matter what it ends up being for those coming in behind us.
me too, lori. but one thing that hugh and i feel blessed about is that both of us feel the treatment he has received, including tandem ASCTs, was absolutely the right decision for him. having that solid foundation of being confident in that belief, trusting his mm specialists, yet being more and more able to seek out new information and opinions in the MM research field (along with being a bit more discriminating about what seems biased and self-serving, indeed, skewed, towards drug companies interests) will go a long way in helping make future crucial decisions. and here, i must say, i have always found your comments on these issues very balanced and well thought out, and that has helped enourmously. i am glad that you and dave, too, are at peace with both his treatment and it’s outcome. warm hugs, karen
Indeed we are lucky to have Margaret who so diligently and prolifically posts about many things concerning MM. The article synopsis is complicated, and you are right it is nothing new for me personally. I have been engaged in this debate for awhile, that I learned along the way in our treatment. I was quite unaware of any other options at the time.
My advice to you when in the “worry zone” is to try to stay focused on the fact that many are living a good long while, more than used to anyway. I told Dave early on when we decided to embark on aggressive treatment, and indeed in understanding the disease as a whole… that while the treatment as a cure for the few was considered “medically insignificant” to claim a treatment solution, it would be “personally significant” to us if he were in that group. So I encourage you to be hopeful for your Hugh that he can be in the small group of longtime survivors.
One long termer in Arkansas just relapsed after 17 years! While I understand that his relapse is as devastating for him and his family, and even for me, who is only acquainted with him, 17 years is indeed impressive.
The debate is sometimes troubling when it becomes personal and you feel slighted because others make comments about SCT or management in a general and sweeping way. I try really hard not to do that, because each must make their own choice for their own reasons. Being sensitive to the fact that others feel differently and want to take a different road is something as MMers and CGs we should try to support and respect. People like Margaret, Dave Emerson, and hopefully myself, really try to present the data in a unbiased straight forward way so folks can decide for themselves. Though a healthy, robust debate is good.
We made our choice in the SCT realm, and thankfully are happy with it. Not everyone is. I think when people get a SCT and find out they could have made a different choice there is understandable and justifiable anger, and visa versa. And then of course, if whatever you have done fails, you question it, and if it succeeds you are thrilled. I continue to hope for breakthroughs of significance.
hi lori,
thanks so much for posting about the “cure vs. control” debate article that margaret (are we lucky to have her expertise, or what?!), posted. after reading her painstaking analysis and comments, i was physically dizzy, and had to read, re-read it. so very interesting, such important info; but i’m in a place, for the 1st time since hugh’s diagnoses in 2009, where EVERYTHING IS CHANGING. people like your dave have achieved a level of wellness allowing him to move on, others who were having treatment at that time have relapsed, several have, sadly, lost their battle and passed way, new meds/treatments are touted as making some in the forefront in 2009 considered passe in some circles, and more and more people in their 20’s, 30’s and 40’s are being diagnosed – many of them deemed “high risk” with aggressive disease. my guess is that you have already experienced all this whirlwind of controversy and change way ahead of me and some of the rest of us, CGs’ and MMers’, and that it goes in cycles. whenever i feel overwhelmed with decisions hugh and i will face once he recovers from the 2nd SCT, i will have your comments and very cogent encouragement to give perspective: don’t be disheartened. enbrace that it is happening, power to the e-patient. thank you, thank you for that!
Kudos to folks like Margaret, Pat, Sean and YOU for continuing to provide information to all of us.
Hopefully, one day, the efforts of all the researchers working tirelessly will pay off.