Medical Stories - Multiple Myeloma: Kenny's Story

I'm 50 years old I live in Black Mountain North Carolina I had to admit I live in a really pretty place running helps me um be healthier physically focused on being better improving my strength and improving my stamina improving my cardio improving my range of motion all those things that help me just enjoy life more helps me sleep better at night in 2014 it had been a couple of months I was feeling fatigued and I was doing a lot of running at the time and I was really starting to gear up into more longer distance running but I was feeling really I was feeling more Zapped than usual and I know that that sounds like that's a lot but it was something that I certainly should have been able to withstand so by October it hadn't gone away I was still feeling crummy and I went to the doctor to see if I had the flu they told me enough to say we need you to go talk to my buddy who's a hematologist and so on January 15th of 2015 I went in and uh and actually I ran 15 miles that morning before I went to the oncologist and he told me that I had cancer my name is Kenny and I was diagnosed with multiple myeloma [Music] multiple myeloma is a cancer of a cell called plasma cells and plasma cells are cells that live in the bone marrow and their job is to make antibodies and that's a good thing for us now the way we get such great antibody diversity meaning we have protection against lots of different organisms or bugs is that the DNA in a plasma cell is flexible so that flexibility is a good thing but sometimes that flexibility turns on a gene that shouldn't be turned on or turns off a gene that shouldn't be turned off and what that means is that it's no longer controlled by the immune system it starts to grow on its own and is not shut down like a normal plasma cell may be shut down and that growth contributes to lots of other complications associated with myeloma like bone disease anemia renal failure or other complications of myeloma so there are genetic instances of multiple myeloma but they are relatively uncommon now if there is a first degree family member or second degree family member that has myeloma then you're risk does go up but it doesn't really go up appreciably most cases are are sporadic cases that occur randomly [Music] what you often see in a myeloma patient early on is a presentation with recurrent infections because you've lost that normal broad antibody protection so my my primary care physician sister-in-law past of multiple myeloma just a couple years before I was diagnosed he was primed to look for things that might have led to that conclusion and so I was fortunate that he ran that test because it is a special to to determine the improtein existence the that myeloma protein it takes a separate panel [Music] it had a pretty insizable effect because they did a PET scan in order to determine how much damage had been done or if any damage had been done to my bones and it was fairly significant I have bones through my head and collar bones and sternum lower ribs scapulas I have two compression fractures in my back um I've got a and I've got a lesion in my hip [Music] yo so Kenny and I have known each other since he was in high school and I was in college back then we were different ages and now we're the same age I don't know how that works we've been buddies now you know 30 some years it's a long time if you put Kenny in a room with any 50 people and asked anybody in the room point to the healthiest guy in the room they would point at Kenny right he's shaped like a yield sign he's a he's a long distance Runner he's he's an amazingly fit guy all that's true and he has multiple myeloma [Music] when I first met Kenny he was 43 years old and he came to us mostly because he was concerned about the potential for a plasma cell disorder and when he saw us he was straddling that intermediate area between smoldering and symptomatic multiple myeloma that borderline really has to do with whether or not there's evidence of organ damage [Music] foreign but he had evidence of organ damage and so started on therapy with a three drug combination that has been probably one of the most common ones that we've used now and then went on to an autologous transplant I think at first it just didn't settle in it settled in probably a few weeks later when they determined the extent of the damage that had been done to me I think being afraid is not the right thing I mean I wasn't scared of dying but I think I was more concerned about letting my kids down laying my family down because there were things that I hadn't you know mistakes I made in my life that I hadn't made up for or uh there were things that I hadn't done yet that I meant it was always on the agenda helping them resolve challenges that they have and will have in their lives and me not being around so that was a worry it's still a worry one of the first dichotomies if you will in terms of treatment is is the patient fit enough to undergo an autologous transplant and what that really means is their own stem cells so it's really high doses of chemotherapy with a rescue using their own stem cells the one that we do most commonly in myeloma is autologous transplant using your own cells and so for patients that are potentially transplant eligible they would typically get a three drug combination using a medicine that is a proteosome inhibitor which is the waste basket of the cell if you will [Music] so initially the plan was to prepare me for a bone marrow transplant a stem cell bone marrow transplant and so leading up to that I had to prepare my body which means that I needed to reduce the instance of the myeloma within my plasma cells in order to do that they gave me a cocktail of very common for myeloma patients anyway very common chemotherapy with a steroid they harvested my stem cells over about four days they froze them and then about two weeks later they gave me a really powerful dose of another chemotherapy to wipe out my immune system over the course of several days while I was in the hospital so shortly after we heard Kenny was sick several of us decided we wanted to Rally around him in every way we could it was financially devastating of course and it was also emotionally devastating and scary so in between the time when I was I had my stem cells harvested and when I went into the hospital to have the bone marrow transplant down at Emory my friends put on a benefit I had a local establishment a local pub called the White Horse and uh they stepped up some amazing amazing friends and musicians came in and did something that they weren't asked to do they helped good [Music] we play a bunch of music and we raised a bunch of money and we supported Kenny and I think Kenny was deeply moved to see how loved he was but the ripples from something like that just keep going they called that the uh the bitty for Kenny and I love the fact that he's made something really serious and emotional super stupid and silly and it was emotional that's beautiful so it didn't put Kenny in complete remission but he did get a remission his disease has remained at very low levels for five plus years now and so between the transplant and the maintenance that we put him on his disease has been well controlled I mean he's he's doing all the things he wants to do and more I'm an advocate I'm the director of a non-profit throwing bones that also advocates for people with diseases so but I've seen the progresses have been made in an insanely short period of time so yeah we're going good places as with the rest of the cancer field the explosion of immune-based therapies has really had a pretty significant impact on myeloma but what I think we're most excited about now are really two technologies the first is a car T cell and a car T cell is basically taking your own T cells out and then programming them to go after a specific receptor on the myeloma and then giving those cells back what we're struggling with is how long that is going to last because other diseases that use this car T cell-based approach have actually a cure Plateau we've not seen that yet in myeloma but it's the beginning of the of the Revolution the second area that we're really interested and excited about is called bi-specific antibodies or T cell engagers and what they are basically is an antibody and on one side of the antibody you bind a T cell and on the other side of the antibody you bind to myeloma cell and what you do is you bring them right next to each other and that T cell that may have been shielded from the myeloma previously because of the bone marrow and all those things that we mentioned before is now right next to its Target and says that's it I got you now and kills it and so that approach really is quite interesting quite effective also so those two technologies I think are really exciting and have the opportunity to sort of totally change the landscape in myeloma you know Kenny was confronted with a tough diagnosis at a very young age and it didn't slow him down a bit and I think that that sort of tenacity is what you want from your medical team if you've got myeloma it is a new day we have lots of new treatments there's no reason to keep doing what we did 30 years ago but at the same time tried and true does often deliver really good outcomes and so find a good team be comfortable with that good team and boy if I had a clinic where everybody was like Kenny life would be easy look at you what an awesome Community comes out on a night like this I hope that what people will see from my story from experience that I've had in the experience the life that I've created I guess with the help of a lot of good friends and family is that there is a tomorrow in some shape form or fashion sometimes it just takes taking the first step in order to continue living [Music] you gotta get up and then you get to take the second one in the third it gets easier and I think that uh for all all of our faults all my faults I'm an example of that [Music] [Music] foreign

Channel: Medical Stories

Views: 60,019

Keywords: Medical Stories, Medicine, IMG, documentary, documentaries

Id: sH4EMh89ysk

Length: 14min 21sec (861 seconds)

Published: Tue Feb 14 2023