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Sticking my neck out, and saying hello...

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

Been a turtle for awhile up here on the Oregon Coast.... figured I better check in, and catch up on everyone on the board.  I just finished my 15th infusion of Nivo, and scan results from August are in....  No evidence of cancer in my brain MRI...  my oncologist did not say disease.. he said cancer... so does that mean I am NEC?  I don't know.. but I'm sticking with that... NEC.

The chest scans show that I am still "stable" so okay... NEC and stable I am.  Still only have joint pain (getting used to it) and fatigue ( lazy? ) some days I just want to sleep 12 hours... or just lay in bed for that long....

So,just read Footstomper.. that you were going to start radiation on Luke... So how does it go friend?  I asked for the three lung mets I have to be zapped ... when I started the Nivo.. and was told no... unless I was in a trial.. it still was experimental, and they will not do it.  Beginning to think that my oncologist beleives me so boring that he doesn't understand my great desire to be PRO-active in treating my cancer.  I have to admit I think with no side effects, and no progressions that I too have a "placebo" medication... so they figure why bother with her.....

I am not complaining... only commenting...I think we have half the ocean's bounty of smoked salmon to take home this year.  Will spend a few days catching up on everyone.

Thanks....  Pam

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

So happy you shared that. 

Smoked salmon?  Sounds yummy!  What's the address?  ;-)

Donna~

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I think the radiologist isnt so sure, but I asked my Oncologist to go ahead with it (it was his idea) and so we are. I see the radiation doc tomorrow, and then we'll see how we proceed. It is still VERY experimental, my wife ( a research oncologist/epidemiologist) could only find one overview paper which talks mainly about results in mice....I'll post on here how I get on.

"I have to admit I think with no side effects, and no progressions that I too have a "placebo" medication" Are you sure you dont have a placebo disease?

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Good to hear from you Pam! And with good news, to boot! Keep it up!

Hugs

Jojo

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Just wanted to say HI Pam and glad you stopped in. Salmon.. yumm..

Hope everything continues to be on the up and up for you!

Hugs, Jan

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

So the radiation is stopping onMonday, the day before my next infusion. The Rad is convinced I have enough radiation in my system (they had been giving me 3x the normal dose) and they are worried about damaging my lungs. We'll see. I speak to my onc on Tuesday

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

get that MMJ thing squared away yet? I still say thank god for it.

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

I cannot get MM ... figures... my oncologist also works at the VA ... so cannot write one.  He gave me OPVIDO instead... since I am so symptom side effect free (other than joint pain) I have not continued the quest.  Rest assured, if I ever have to return to a TKI... I will lobby every medical person for a perscription.  California may legalize it anyway.. so who knows?

Lots and lots of cancer patients benefit from MM.  I intend to become one if I have to.

 

 

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