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Although I am no longer NED, the good news is that the change in my scans seems to be slow growing.
So, the docs decided that I should wait four months for my next scans. They can't do anything

apparently (biopsy-wise) until the nodules they are seeing are 1 cm solid. Since my other masses were KRAS and there's no targeted treatment for it, I'm hoping that these are slow growing enough for a targeted treatment to become available when I need it..

Trying to keep calm and "stay the course," as Tom would say!!

 

Take care everyone!

 

Ro

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Hi Ro

Thanks for sharing the results. We’ll take any good news.  Slow growing is the next best outcome.  It’s so frustrating when the docs say there’s nothing to do but wait.  I did a quick clinical trials.gov search for KRAS.  There could be some things worth checking out.  Some of the studies are listed as completed.  Looks like the research is almost there.   I hope you’re feeling okay- that’s what’s important.  Onward!

Michelle

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Aw, man, Ro,

That's gotta be disappointing and frustrating.  Still, as Michelle said, slow-growing is a heck of a lot better than aggressive and fast-growing.  

So your scans were today and you already saw the doctor?  That was fast.  I've always had at least a couple of days between the scan and the oncologist's appointment.

My scan is tomorrow morning.  No idea whether the results will be posted before my appointment Thursday morning.

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Lexiecat,

You hit the nail on the head. I think I had myself convinced that the nodules were going to disappear, so I was disappointed. It's also frustrating to know they don't know how they would treat it. Having a plan helps..but I have learned that isn't always possible.

Yes, I always see the docs the same day as I have the scans. I was going every 3 months for scans, but they are letting me wait 4 months this time.  I hope you get a good report from your scans and that all goes smoothly! I'll be thinking of you!

 

Ro

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Roz

This must have been one very tough day for you, But until the doctors can get better informed with a further scan in March 2019. You should be staying positive as they are not second guessing no point in you. 

Bob

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Thinking of you and appreciate your outlook (yes, you actually sound calm to me!). I know we can all share in your anxiety about this but here to support you as well.

I like what Bridget has to say ("Do what you love and what's significant to you"). Something I / we all need to keep in mind! 

@ Lexie - Again, thinking of you and hoping you will get good news following your scan.

Colleen

 

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Ro-

Bridget is like a yoda. Do what you love!  I’m reading Anti Cancer Living  by Lorenzo Cohen and Alison Jeffries.  There’a a LC survivor story by Diana Lindsay.  Diana is an advocate of “ The Joy Protocol”  

She wrote “ when you feel intense happiness there is a hit of endorphins, oxytocin and dopamine-all natural chemicals in the brain that make you feel good when you can let go of your worries and be joyful.  All of these substances all stimulate the immune system”

I’m rooting for you! 

Michelle

 

 

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Michelle,

I 'm putting both books on my request list at the local library. I really appreciate your support!!

I think what is hard for me is the whole concept of doing nothing while we wait for enough of a mass to biopsy-already knowing that it will be cancer again.

I've never been the type of person who isn't proactive. Yes, I'm working everyday in a job that I really love, but I still can't help feeling that there should be a way to prevent the growth of the cancer. Waiting for disease to come-just doesn't feel right..but there's no other option. 

 

So appreciative of everyone's words of support!

 

Ro

 

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Sorry about that Ro- the book is “Anti- Cancer Living” by Lorenzo Cohen PhD and Alison Jefferies.  They are from the MD Anderson Integrative Medicine Program.  

If you Google Diana Lindsay Joy Protocol & you will find a short video of her story.   In the meantime check out Tai Chi/QiGong.  It will give you something productive to wipe out those nodules!  

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  • 3 weeks later...

Ro,

Just thinking as I read thee thread. Have your docs considered precision radiation as a way to eliminate those small tumors. Radio oncologists are getting very aggressive in treating multiple small tumors in various locations. The medical term of art is “spot welding.” Just a thought. 

Stay the course. 

Tom

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Tom,

I'm not sure why but from the beginning, I was told radiation was not an option. Currently, there are subsolid nodules about 8-10mm, so they are "waiting" for them to be "big enough" and solid so they can do a biopsy. I will certainly ask my medical oncologist to explain why precision radiation isn't an option. I'm definitely not a fan of the wait and see approach. Thanks for your response. I'm going to email it to myself so I remember what to ask at my upcoming visit. I'm going for a second opinion appointment this month. I'll keep you posted!

Ro

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