Fight that good fight, brother! My wife & sister are both survivors.
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The 13 Year Streak is Over
- Thread starter P. Aaron
- Start date
I'm keeping the best of good thoughts for you. I can't imagine your courage in facing this down...again.
Good luck with this part of the journey, send best wishes and vibes!
So sorry you're going through this. A lot has changed in myeloma treatment since 2010. Not sure where you get treatment but see if you can get CAR T therapy or one of the newer bi specific antibodies like Talquetamab.
People are living longer and longer with myeloma. Hoping that is the case for you and that your quality of life can remain good!
People are living longer and longer with myeloma. Hoping that is the case for you and that your quality of life can remain good!
All best wishes to you. I’m sure that you will fight hard.
I am a retired pharmaceutical research scientist, albeit in metabolic diseases, not oncology, and I am not a clinician, however both my wife and I are cancer survivors. As PrimitiveMan pointed out, and as I am sure that your physicians are aware of, CAR-T cell therapy and the newer bispecific T-cell engager monoclonal antibodies have shown significant efficacy. If you haven’t already, may I suggest asking your care team about them.
As I wrote, my wife and I are cancer survivors, hers much more serious (stage 4 breast cancer) than mine (stage 1 prostate), but we are both past the 10 year mark. We both sought multiple opinions, and got varying answers as to potential treatment options. When she had her initial bout of stage 1 breast cancer we were comfortable with her being treated at Rutgers New Jersey Cancer Institute. When she had a recurrence 5 years later, we sought out multiple opinions again at Rutgers, and at Fox Chase in Philadelphia, Memorial Sloan-Kettering in NYC, even flying down to Houston for M.D. Anderson. The latter three all suggested more aggressive treatment than Rutgers. We decided to go with MSK in NYC. Of course, she is an n of one, and there is no individual control group, but I think that the more aggressive treatment and the advent of newer CDK4/6 inhibitors has absolutely contributed to her being past the 10 year mark since her recurrence with no evidence of disease.
Please forgive me, if you have already explored multiple opinions. I just want to suggest it if you haven’t.
My best wishes to you!!!
I am a retired pharmaceutical research scientist, albeit in metabolic diseases, not oncology, and I am not a clinician, however both my wife and I are cancer survivors. As PrimitiveMan pointed out, and as I am sure that your physicians are aware of, CAR-T cell therapy and the newer bispecific T-cell engager monoclonal antibodies have shown significant efficacy. If you haven’t already, may I suggest asking your care team about them.
As I wrote, my wife and I are cancer survivors, hers much more serious (stage 4 breast cancer) than mine (stage 1 prostate), but we are both past the 10 year mark. We both sought multiple opinions, and got varying answers as to potential treatment options. When she had her initial bout of stage 1 breast cancer we were comfortable with her being treated at Rutgers New Jersey Cancer Institute. When she had a recurrence 5 years later, we sought out multiple opinions again at Rutgers, and at Fox Chase in Philadelphia, Memorial Sloan-Kettering in NYC, even flying down to Houston for M.D. Anderson. The latter three all suggested more aggressive treatment than Rutgers. We decided to go with MSK in NYC. Of course, she is an n of one, and there is no individual control group, but I think that the more aggressive treatment and the advent of newer CDK4/6 inhibitors has absolutely contributed to her being past the 10 year mark since her recurrence with no evidence of disease.
Please forgive me, if you have already explored multiple opinions. I just want to suggest it if you haven’t.
My best wishes to you!!!
Our house will keep you in our prayers brother.
Stay positive, and keep rockin. You got this.
Stay positive, and keep rockin. You got this.
Wishing you well and sending positive vibes. You’ve got this!
Napalm is my term for chemo. Almost any form of cancer treatment involves bombing the village of baddies in order to hopefully have a few of the good citizens survive. It's poison, or some other noxious chemical mix. So, just changing terms really.
Finding ways to deal with it all and still keep a sense of humor and keep a positive outlook.
Prayers and positive vibes sent your way! You can beat this!
I did a clinical trial in 2010 which was revlimid and dexamethasone) (both common) and a catalyst carfilzomib. For myself, obviously, it was a successful outcome. I'm being put on another newer treatment of the many I've read about as I get the Myeloma newsletters.
It all starts tomorrow.
Maybe I'll buy a USA Telecaster 'cause I want one.
It's all physiology and almost a trust yer gut kinda thing when selectinga course of treatment. Facility reputation plays a big role. I originally (2009) developed an acidic back pain which I of course, ignored for months until the pain became so bad I was eating opiates like Pez and my doc wouldn't refill unless I first had a CAT scan which showed the myeloma lesions on my vertebrae, by that time, stage III. Thus, we ended up changing from the hospital down the street to U of Michigan Cancer Center where a Dr. Jakobowiak was doing a residency. Turned out, he is regarded as one of the top Myeloma docs in the world. Incredible bedside manner and was generous with his time more so than even most MD's. The numbers started going down within 6 months and within 2 years, I was on the mend. Since this is showing as a smolder with just recently, readable numbers, we've decided to attack now and hopefully resolve the situation within a year or less.
Especially blood cancers! Nothing to radiate or surgically remove…
I’m surprised that chemo is being considered in a recurrence situation.
I’m CLL (in partial remission right now but some signs of recurrence are emerging). Did FCR chemo four years ago and my next treatment will likely be targeted therapy, most likely Ibrutinib.
In any case, I’ll be pulling for you.
