I had a bone marrow biopsy a week ago. Bilateral. Turns out that I have 60% myeloma on the right side and 5% on the left. The doctor says: "Multiple myeloma is a patchy disease." Okay,
But the "good news" (don't you just love irony?) is that I do have 60% on one side, and that it is 'heavily C1" involved. Since that is the protein my medical teams wants to go after, that's a good thing.
So, the day after tomorrow I'm going into the cancer center to get a Hickman (my veins 'flunked' so they can't collect using them and my port) and for the collection. They will do whatever they do with those cells, and I will get them back three or four weeks later.
It's been a journey; I have several plasmacytomas growing like wee weedies in my left maxillary sinus, my lower jaw, the back of my head and on my left humorous. We treated the one in/on my sinus with radiation right after Thanksgiving, and the one on my arm with surgery (the doctor calls it 'rebar') and radiation in early December. The one on my lower jaw is new, and the one on the back of my head is growing. I think I did something unfortunate to my left arm.
But we can't do anything about any of them until after the 'collection.' Then I get treatment and radiation and perhaps more surgery (shrug) Come to think of it, I haven't had any treatment since September, waiting for this trial. Which is new.
that is, the C1 protein is one nobody has gone after yet, according to the doctor. I'm the second person in that trial, and the first one succumbed to cytokine release syndrome. They are starting me off with a much smaller dose of CAR T cells.
Anyway, wish me luck and a blessing or two..
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's CAR T-cell therapy journey
Update:
I had the collection almost two weeks ago, and the doctors put me on a 'bridge' treatment regimen with Velcade, something else starting with 'ben,' and dex. I wish I could remember the name of that other thing, but it escapes me.
Anyway, I'm about to reach the end of the first cycle of the bridge therapy, and some very interesting things have been happening. The tumor in my maxillary sinus is darned near gone. I not only don't look like a lopsided chipmunk anymore, I can even wear my dentures and smile at people! The lesion on my lower jaw has gone down enough for that, as well.
The one on the back of my head is still there and still growing, but hey; my hair hides it, so?
And my arm, though giving me a little grief, isn't too horrible. Even my hip has started doing better. So, all things considered, looking up.
Except of course for the side effects of the bridge therapy, which are miserable, but then, in a week or so, I'll head for the cancer center for the CAR T-cell infusion and we will go from there.
Just wanted to give an update.
Oh, .and my grandbaby is almost one, smiles, giggles, and pulls herself around rooms using grownup knees. Life is pretty good, all things considered!
I had the collection almost two weeks ago, and the doctors put me on a 'bridge' treatment regimen with Velcade, something else starting with 'ben,' and dex. I wish I could remember the name of that other thing, but it escapes me.
Anyway, I'm about to reach the end of the first cycle of the bridge therapy, and some very interesting things have been happening. The tumor in my maxillary sinus is darned near gone. I not only don't look like a lopsided chipmunk anymore, I can even wear my dentures and smile at people! The lesion on my lower jaw has gone down enough for that, as well.
The one on the back of my head is still there and still growing, but hey; my hair hides it, so?
And my arm, though giving me a little grief, isn't too horrible. Even my hip has started doing better. So, all things considered, looking up.
Except of course for the side effects of the bridge therapy, which are miserable, but then, in a week or so, I'll head for the cancer center for the CAR T-cell infusion and we will go from there.
Just wanted to give an update.
Oh, .and my grandbaby is almost one, smiles, giggles, and pulls herself around rooms using grownup knees. Life is pretty good, all things considered!
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's CAR T-cell therapy journey
Hi Diana,
The "ben" drug they gave you was probably bendamustine (Treanda). It's an alkylating agent that's been around since the 60's and was actually developed in East Germany. That's great news about your sinus tumor shrinking while on the new regimen.
I'm not familiar with any therapies that target the "C1" protein and I'm also not sure what "C1" is. Do you know more about the specifics of the trial?
In any case, best of luck with the trial. I'm sending positive vibes your way and wishing you great success.
The "ben" drug they gave you was probably bendamustine (Treanda). It's an alkylating agent that's been around since the 60's and was actually developed in East Germany. That's great news about your sinus tumor shrinking while on the new regimen.
I'm not familiar with any therapies that target the "C1" protein and I'm also not sure what "C1" is. Do you know more about the specifics of the trial?
In any case, best of luck with the trial. I'm sending positive vibes your way and wishing you great success.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diana's CAR T-cell therapy journey
Multibilly, you are correct. It is bendamustine, though the folks this way call it "Bendeka" It's a 10-minute infusion.
As for the C1 thing, it is brand new. As in, I'm not all that certain I'm not on the first, if not one of the first, trials to target it.
What it does is two things: It is a CAR T-cell trial, so that's good, but it also leaves the field wide open for the more "everyday" CAR T-cell protocol that most people here have had, if this one doesn't work. Since they will be starting me at 10% of the dose they gave the first guy (the one who had such a nasty cytokine reaction), it looks pretty good.
I hope.
Anyway, I'll know more when the cancer center (City of Hope) calls me and says I can come in. In the meantime, I'll admit that this thing is royally kicking my butt. My doctor says that I'm a good prospect because I'm "strong" and in "good health" and so forth, but I'll tell you this: I don't feel "strong." For the first time in seven years, I'm feeling, well, ill. From the disease, not the side effects of treatment.
I don't like it.
Never mind, it's been a week and a half since collection. So, counting down the days.
As for the C1 thing, it is brand new. As in, I'm not all that certain I'm not on the first, if not one of the first, trials to target it.
What it does is two things: It is a CAR T-cell trial, so that's good, but it also leaves the field wide open for the more "everyday" CAR T-cell protocol that most people here have had, if this one doesn't work. Since they will be starting me at 10% of the dose they gave the first guy (the one who had such a nasty cytokine reaction), it looks pretty good.
I hope.
Anyway, I'll know more when the cancer center (City of Hope) calls me and says I can come in. In the meantime, I'll admit that this thing is royally kicking my butt. My doctor says that I'm a good prospect because I'm "strong" and in "good health" and so forth, but I'll tell you this: I don't feel "strong." For the first time in seven years, I'm feeling, well, ill. From the disease, not the side effects of treatment.
I don't like it.
Never mind, it's been a week and a half since collection. So, counting down the days.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's CAR T-cell therapy journey
Good luck, Diana! You are a brave pioneer in the new CAR T-cell therapies! I am sorry that you feel ill from the cancer itself. Hopefully the Velcade, bendamustine, and dex will work to decrease the cancer cells and you will start to feel better again. That has happened with me from treatment, more than once.
The CAR T-cell therapies target different antigens on the surface of myeloma cells. There are a few 'CD' numbered antigens, 'cluster of differentiation,' e.g., CD-138, CD-19. There is CS1 glycoprotein, and BCMA, B-cell maturation antigen. So perhaps the C1 is related to those or is something different.
Best wishes and I am sure that all readers are cheering for you too! Nancy
The CAR T-cell therapies target different antigens on the surface of myeloma cells. There are a few 'CD' numbered antigens, 'cluster of differentiation,' e.g., CD-138, CD-19. There is CS1 glycoprotein, and BCMA, B-cell maturation antigen. So perhaps the C1 is related to those or is something different.
Best wishes and I am sure that all readers are cheering for you too! Nancy
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Diana's CAR T-cell therapy journey
Thanks, Nancy, for your good wishes
As it happens, it is the CS1 version of the CAR T-cell trial I'm (hopefully) going into. I just got a call from my coordinating care nurse telling me that they'll know by next Tuesday whether my blood is ready to go, or if they need to wait another week. Then I get to go repeat all the tests; blood, echocardiogram, PET scan, the whole shmear to make sure that the 'bridge therapy' I've had didn't put me into remission.
That would be, er, bad?
It is true that the very recent treatment regimen has done a good job of shrinking tumors that were giving me major grief, and I'm not sure what to think about things if Velcade, Bendeka, and dex put me into remission. It means, on one hand, that I'll be kicked out of the trial. They don't want 'cured' people in it. On the other hand, well, remission.
Dancing on one side, limping on the other, just living day to day. Wonderful. Anyway, that's the most recent update.
As it happens, it is the CS1 version of the CAR T-cell trial I'm (hopefully) going into. I just got a call from my coordinating care nurse telling me that they'll know by next Tuesday whether my blood is ready to go, or if they need to wait another week. Then I get to go repeat all the tests; blood, echocardiogram, PET scan, the whole shmear to make sure that the 'bridge therapy' I've had didn't put me into remission.
That would be, er, bad?
It is true that the very recent treatment regimen has done a good job of shrinking tumors that were giving me major grief, and I'm not sure what to think about things if Velcade, Bendeka, and dex put me into remission. It means, on one hand, that I'll be kicked out of the trial. They don't want 'cured' people in it. On the other hand, well, remission.
Dancing on one side, limping on the other, just living day to day. Wonderful. Anyway, that's the most recent update.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's CAR T-cell therapy journey
Diana,
Ah, so the CS1 (aka SLAMF7) protein on the myeloma cell's surface is the target for the CAR T-cell therapy. That makes sense. This is also the same surface protein that Empliciti (elotuzumab) targets.
This is the trial:
https://clinicaltrials.gov/ct2/show/NCT03710421
Again, best of luck to you on this journey Diana.
Ah, so the CS1 (aka SLAMF7) protein on the myeloma cell's surface is the target for the CAR T-cell therapy. That makes sense. This is also the same surface protein that Empliciti (elotuzumab) targets.
This is the trial:
https://clinicaltrials.gov/ct2/show/NCT03710421
Again, best of luck to you on this journey Diana.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diana's CAR T-cell therapy journey
Yep, Multibilly, that's the link I have. They are hoping to have my blood 'cooked' by next Tuesday, with another round of tests happening the following week.
One step forward, one step back. In the meantime, I'm going to the Getty museum and the seashore.
One step forward, one step back. In the meantime, I'm going to the Getty museum and the seashore.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's CAR T-cell therapy journey
Thinking of you Diana and sending positive vibes. It is terrific that some of the tumors have reduced from the bridge therapy.
Eileen
Eileen
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Diana's CAR T-cell therapy journey
Fingers crossed and sending all of my best thoughts out your way, Diana! Here's hoping that this treatment "Slams" your myeloma once and for all.
Mike
Mike
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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