Episode 115: Cutting Edge Therapy: Cancer Cured After Years of Battling CLL | Brian Koffman

[bkoffman]

“After years of battling CLL, Dr. Brian Koffman underwent an experimental immunotherapy (CAR-T) that has now left him without a single trace of malignancy detectable in his entire body. This week's @HiddenForcesPod is the story of that miraculous journey." hiddenforces.io/podcasts/br...

He was interviewed by Demetri Kofinas in Manhattan for his internationally recognized podcast. Please give a listen. Very cool interview by a very cool guy who normally interviews Secretaries of Defense and leading scientists and financial wizards. His own story of his brain tumor is amazing.

Blessings for the holidays

Brian

CLLSociety.org

[Mystic75]

Fyi - I wasn't able to access it directly via the hyperlink in the post but I was able to access it through Twitter at the link below:

hiddenforces.io/podcasts/br...

[bkoffman CLL CURE Hero]

Try this link: hiddenforces.io/podcasts/br...

[AussieNeil Partner Administrator in reply to bkoffman]

Great way to spread a shared hope for us all and so much personally deserved as so well captured in the hiddenforces introduction.

I've edited your post so the link works. This site stumbles when extra characters other than a space or new line come after a link.

Neil

[bkoffman CLL CURE Hero in reply to AussieNeil]

Thanks.

[J_88 in reply to bkoffman]

Good to hear Brian. Are you technically cured now then?

[bkoffman CLL CURE Hero in reply to J_88]

Can't say I am cured, but I can hope. Got to get past U-MRD to get to cure,

[Sushibruno in reply to bkoffman]

I don't understand "cancer cured after years of battling cll". Why is this in the title if you can't say you're cured?

[bkoffman CLL CURE Hero in reply to Sushibruno]

The podcast audience is not a medically sophisticated group and I didn't get to approve the title. Its does pique interest. Another way to look at it is that I could be cured. Only time will tell, but I prefer not to use that language yet as it might hold out perhaps false hope or tempt the fates. Ask we again in 3 more years and after my next bone marrow biopsy.

[Sushibruno in reply to bkoffman]

Fair enough, thank you Brian for answering my question, i pray that you are cured, so we can finally say that there is a cure for this disease👍.

[J_88 in reply to bkoffman]

Brian how many years would it take for you to be considered cured?

[bkoffman CLL CURE Hero in reply to J_88]

At least 5 years and more likely not until when I die of something else that is not CLL.

[PlanetaryKim]

Excellent Brian! I retweeted it!

[bkoffman CLL CURE Hero in reply to PlanetaryKim]

Thanks. Demetri is a great interviewer and an amazing intellect.

[Mystic75]

Great Podcast!

[edelweiss]

Blessings to you and your wife Patty too, for all you have gone through in your treatment journeys and for educating us by reporting on your experience and through your excellent CLL Society website. We all have benefited greatly. Happy Holidays.

[bkoffman CLL CURE Hero in reply to edelweiss]

Thanks.

[MyRoc]

Thank you so much! Here’s to many more happy, healthy, productive and deeply fulfilling years.

[bkoffman CLL CURE Hero in reply to MyRoc]

THANKS!

[Peggy4]

Great listening. A merry christmas to you Brian. Thank you so much for all your hard work for us while fighting your own personal battles.

Peggy

[shoshanaz]

Thanks! I listened to this yesterday. I highly recommend it to anyone else. (I liked it so much that I shared it on FB, and made a donation right after.) Happy Chanukah!

[bkoffman CLL CURE Hero]

That is awesome. Thanks so much.

[colincll10]

brian what a fantastic result --im so very happy to see that you have overcome this and im hoping it isn't to expensive and that others may benefit from it in due course .

im three maybe 5 year in w and wait now which is ok meantime -- and number still low but secondary skin cancer I have to deal with now . anyway merry xmas or happy version -you guys do ower there good ol usa --colin w ( Scotland ) . I also hope that your family are all well they must be over the moon .. whooo

[Hidden]

Brian, I really appreciated your story. Going through many similar if not exactly the same challenges, it is re-assuring to hear the perspective from another person who has been dealing with it for much longer than I. Actually brought a bit more clarity to my own considerations and discomfort regarding the kind of surrender required in the midst of desire to still control outcomes through potentially life and death related choices that we face without having good statistical risk data. Uh, wish I could have expressed that better, but Thanks for what you had to say!

That interviewer though... I really wished he would have stopped interrupting, disrupting and tangentializing your narrative.

Wishing for uMRD forever for you!

[bkoffman CLL CURE Hero in reply to Hidden]

Thanks. As you know one of my mottos is that we often need to make life changing decisions with incomplete knowledge and conflicting advice.

[Jem67]

I have only just listened to this. Inspirational! Thank you. Joy (UK)

[bkoffman CLL CURE Hero]

Thanks

[bkoffman CLL CURE Hero]

Sorry to hear of that crunch. Will they cover other growth factors?

[bkoffman CLL CURE Hero]

What's your ANC? I can't understand why they won't cover it.

[HopeME]

How much is a shot? I recall the price was steep but I’d still get the shot and deal with the consequences later. I can’t imagine your insurance company will ultimately deny the shot if your CLL Specialist is telling you that you need it. I’m sorry you are going through this difficulty.

Good luck,

Mark

[bkoffman CLL CURE Hero in reply to HopeME]

Depends on the dose. According to GoodRX, Neupogen which is almost the same retail is >$1,200 and Zarxio is more than double that for the 300 mcg,. Remember I am not an oncologist and this is beyond my expertise.

[HopeME]

I’m glad you finally will received your shot. It must be incredibly frustrating to deal with this while trying to receive treatment but try to be nice to the nurses. They are simply trying to help and they aren’t responsible for any of the administrative decisions. Better days are ahead for you!

[bkoffman CLL CURE Hero]

Glad it all worked out. We are truly all in this together.

[SarasotaPaul]

Wonderful podcast. Great to know you're an advocate for all us in the CLL family!