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REMlack

Car T therapy for squamous NSCL

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My husband is turning 50 tomorrow. We were not sure if he would be here for it...so I thank the good Lord he is. He was diagnosed about 3 1/2 years ago with stage 4 squamous NSCL. He started out with chemo then Opdivo. The Opdivo worked great for 2 years pretty much took it away and he continued to work. The Opdivo stopped working so he went on Tarciva, this did not work. Then it was on to Keytruda, not luck. Now he’s on Gilotrif, this seems to be doing something but not sure what yet. My husband is waiting to get on a Car T trial study and I’m wondering has anyone gone through this or have heard about it? We seem to have gotten to the end of our rope and I’m not sure where to go I guess.  I’m frustrated and scared and anxious about everything.  The doctors keep say to him “your not supposed to be here my friend, you are a miracle” but they don’t seem to be doing anything now. 

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Welcome REMlack.   Thanks so much for telling us about your husband's miracle.  

I have not heard of the Car kTS study but they keep coming up with new alternatives , I pray this will be a great one and he will get it and respond well .

Keep us posted.  

Donna G

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Donna

Lungevity has a place where you can check for all trials being run at that time, see if you are eligible, and do paperwork I believe. Lexie or someone will come along here shortly and give you a link for it. 

Judy M. 

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Hi REMlack and welcome. I've read about CAR T therapy but don't know anyone who's had it. It sounds like there are some remarkable results with it. I hope your husband can get on the trial.

All the best,

Bridget O

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Hi, REMlack, and welcome.  It sounds like your husband has already applied for the trial, is that right?  I don't know anything about it, myself, but let me know if you need any resources.  I'm a decent amateur researcher, lol.  

And tell your husband congrats on making it to his 50th--let's hope there are many more to come!  We have people here who have gone from treatment to treatment and finally hit on one that knocked the cancer out for years.  Hope you can do something special for his birthday.  :)

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Hi, ReMlack,

Here is a link that you may want to visit for information about CAR T-Cell Therapy:

https://www.cancer.gov/about-cancer/treatment/research/car-t-cells#side effects

And here is a list of questions you/your husband may want to ask the medical team when discussing a clinical trial:

  1. What are the benefits and risks of participating in an immunotherapy clinical trial?
  2. How will I be monitored while participating in a clinical trial?
  3. What are my responsibilities during the clinical trial?
  4. Are there any costs associated with my participation in a clinical trial?
  5. Where can I learn more about clinical trials?
  6. Who can I speak with if I have questions during the clinical trial?
  7. What happens if I decide I do not want to participate in the clinical trial at some point?

Please keep us posted on how you and your husband are doing! And let us know if you have additional questions or would like help finding information, resources, or support.

We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

 

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REMlack,

Welcome here.

I believe there is one place to go when everyone else runs out of treatment ideas -- Dr. David S. Schrump at the National Cancer Institute.  I saw Dr. Schrump's presentation at our National LUNGevity Summit in April.  He said his clinic is the place to go when other doctors run out of ideas.  Email [email protected] at the National Cancer Institute.  She is Dr. Schrump's medical assistant and describe your husband's diagnosis and treatments.  The NIH may have a study or a program in place that deals with cancers that Optdvo no longer controls.  Here is a blog about Dr. Schrump's lung cancer lab that just covers a small portion of research underway.

Stay the course.

Tom

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