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Road bum

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What exactly do you think when a Doctor starts talking about odd things?  Things like, “ maybe clinical trials”, or, “hospice “, or, “quality of life”, and others. 

I know their is a possibility of clinical trials but I don’t want to up root my wife to travel somewhere for a treatment that might not work anyway. Not real sure I’m ready to be a test rat. 

I have had chemo three times in the last three years. Carboplatin, cisplatin, taxol, Taxotere alimta, and Keytruda. I’m not sure I got them all but my brain is mush after all that. 

I guess my question is where do I go from here?  Is their anything else that I can do?  I’m not looking for heroics but their ought to be something. 

Thank you for your time and consideration.

Ron

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Hello Ron, 

If there's one thing that has stayed with me as a result of your posts, it's RESOLVE.  You've got such an amazing attitude, let's see if we can find a way to turbo charge your system.  I had a few ideas out on my morning walk for your consideration: 

*Is it time for a second opinion at a "big guns" cancer center?

*Has your oncologist taken your medical record to the tumor board to ask the question of what's next and  dig deep into the creativity box 

*Is IV Vitamin C an option? 

*Call the GO2Foundation" at 1-800-298-2436,or email: support@go2foundation.org  Ask for a referral for a lung cancer specialist. 

*Call the Lungevity Help Line, ask them for a referral too.  Find your new A Team.  

As for clinical trials, they aren't what we used to think they are; especially if they are later stage (i.e. Phase III).  I totally understand the lab rat thing, however, one of the ladies in the Lung Cancer Living Room on YouTube reported she was a "clinical trial junkie", she's been through more than a dozen trials and twenty years later, she's still here to talk about it.  Another one of my ALK peers has been through 7 clinical trials.  In a way, clinical trials are science short cuts for those of us who have receive a lot of treatment.  

I'm sure others will chime in as well.  Please keep us posted.  We're here for you. 

Michelle 

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  • 3 weeks later...

Hi, Ron.  If you want to learn more about clinical trials, there is a clinical trial finder and also you can get matched with a clinical trial navigator that can help you know what to expect during the process.  All of that information is here: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials

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  • 4 weeks later...

Kristen, to be honest I haven’t checked the link you gave me except for a cursory glance.

I am due for a cat scan on the 14 th and then I will see the Doc the following Monday. 

I haven’t been on any chemo since August so we will see where we are a week from Monday. My Doctor has assured me that their are still a few options for treatment.

i suppose it all hinges on what the scan shows.

Thank you for thinking of me. I kind of left you all hanging after I asked you for help and I’m sorry.

i did check on the clinical trail register and went thru it twice but I didn’t find anything I fit in.

So right now I’m placing my bets on my Doctor. After that we will see.

Ron

 

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Ron-

So good to hear from you!  Please don’t feel like you have to apologize. You’ve been an inspiration here.  My prayers for you on the 14th-  each time I go for the scan I try to lock & load mentally. I keep saying it’s not what  if there’s a clinical change but what comes next.  So glad you’ve got a doc that’s willing to use whatever is in the arsenal.  Hugs to you. Michelle

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