Kleo

I’m willing to sell tickets to that show down tomorrow!  Anyway, I’m looking at the June 2019 American Society of Oncology Association. (ASCO) abstracts.  It appears as if your medical team is humming along with the new chemo immunotherapy protocol. Typically administered when there is no PDL-1 or targeted mutation.  Early studies suggest good results in PFS.  
Ask the doc to show you which abstract is most applicable and have them provide you with a copy.  Sounds like this is going to be worth it in the long run.  
Good luck-lock and load.  

Tecentriq is alot like Durva...targets PDL1. I don't have any PDL1 expression. Why am I taking a medicine that targets something I don't even have!?? Seems silly to me. I said that to my onc last time and she said sometimes it works even without PDL1. So does Durva apparently….that's why they give it to everyone regardless! But it didn't work on me... 
I don't know I just feel like the PDL1 immunos are not my thing. I guess we will battle it out tomorrow...LOL
 
JaneLee….my onc told me the bad shoulder pain I got during durva was probably bursitis..? couldn't lift my arm at all. Then it went completely away after I stopped the durva.
That's just ME though...I'm pretty weird! 😏
 
 

Tecentriq is alot like Durva...targets PDL1. I don't have any PDL1 expression. Why am I taking a medicine that targets something I don't even have!?? Seems silly to me. I said that to my onc last time and she said sometimes it works even without PDL1. So does Durva apparently….that's why they give it to everyone regardless! But it didn't work on me... 
I don't know I just feel like the PDL1 immunos are not my thing. I guess we will battle it out tomorrow...LOL
 
JaneLee….my onc told me the bad shoulder pain I got during durva was probably bursitis..? couldn't lift my arm at all. Then it went completely away after I stopped the durva.
That's just ME though...I'm pretty weird! 😏
 
 

Kleo
Don't feel like this is the right stuff for me.
 I bet he will convince you otherwise. 😎

Hey Kleo I'd try a hit of that Gerflooberglobbin over here but I'm still pixellating on the Prednisone, it sounds a little German to me though, somethin like Der Gooberflobbin is akickin se poopinhockin outen mein poopinhopper, but in all honesty and seriousness am sorry to hear about the pain with the new treatments, seems if it aint one tham dang it's another right?

Haahaaahaaa! Bob you are so funny!🤣
Yeah they just approved that Tecentriq/ Avastin combo with chemo here. So that's what they are trying...even though I don't have PDL1😣 
I'm gonna have a lil chat with my onc Wed. Don't feel like this is the right stuff for me.

This is off topic but I just gotta say it......this chemo/immuno cocktail is BLEHK!😣 
 
Anyway...when I was on the durva...my biggest problem/side effect I saw was that it caused me joint and muscle pains in my back and arms. Sent me to the ER twice they were so bad. So now they are giving me this...Tecentriq stuff...and I'm having joint/muscle pains again..but all over. Even my legs! So how do I know if it's the immuno again or the taxol or whatever else they've tossed in my salad!?
Too many thingies!
I'm grouchy today....sorry 😉
 
 

I think they are just tossing the dang alphabet at me! Here try this new Gerfloogerbaghin...it'll help.

I think they are just tossing the dang alphabet at me! Here try this new Gerfloogerbaghin...it'll help.

Haahaaahaaa! Bob you are so funny!🤣
Yeah they just approved that Tecentriq/ Avastin combo with chemo here. So that's what they are trying...even though I don't have PDL1😣 
I'm gonna have a lil chat with my onc Wed. Don't feel like this is the right stuff for me.

Grouchy is acceptable. Sorry about the pain.   I’ve only had 4 infusions and I have pain in my foot joints occasionally  which I had for years then it went away during chemo and radiation.  Never figured that out  
 

Kleo
What you are receiving was just approved in Canada three weeks ago. Gerfloogerbaghin sounds Scottish

Charles
Sorry to hear about your condition it was about the same time infusion#8 or 9 that i had to go to ER major cough and they could see inflammation on the lung, They held off on predisone and i noticed on my next blood work my white bloods cell count went off the charts.Still have chest infection that shows on the CT the doctors are aware..
Stay the course
Bob

Hey Charles, You've really been through it!  I'm pulling for you. Hang in there.
Kleo, when I lost my hair, I thought I looked like an old baby. I also thought if hair loss were the worst of it, chemo would be a breeze.

Hi Kleo. The Durvalumab/prednisone relationship has seen better days. I think the max daily dose they came up with is 10 mgs. If I could take that daily to ward off the bad stuff I would but I don’t think they would do that yet. We are still guinea pigs on this stuff. Sorry about your hair. Mine is not growing in too fast. I didn’t order the button for my back to be able to pull the hair out of my scalp🤪

Barb....I never got dizzy either. But I did have really bad muscle/joint pain. 
Hi Charles! Sounds like the durva doesn't play well with you at all either! Gee whiz!😣 
Now just to pass along what my nurse told me... Supposedly they've figured out that the durva does not do well with the prednisone. Or any steroids really...at high doses. But especially the durva and prednisone. I was on all kinds of steroids for the muscle joint pain. Big ol doses of prednisone! Now whether she has the right info...I don't know. Don't wanna start nurse rumors! Something for people to look into though. 
And whether that had anything to do with my durva not working for me...who knows. could just be I didn't have the PDL. 
 
I shaved my head!   I look like a q-tip.😁
 

Kleo
 8 hour infusion and i thought 6 hours was bad enough. 90 minutes now with Durvalumab  total in and out there. Heading out in thirty minutes.
 
Bob
 

Kleo- Glad to see you have kept your sense of humor through all of this...Tomm-Tom (I truly lol'd over that!)

Well that 8 hour infusion was fun! Not......🤣
Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
Tom....Hi! good to "see" ya!
I just responded to TWO Tom's in one post.  
A Tomm-Tom.😎 
 
I'm so talented.

Well that 8 hour infusion was fun! Not......🤣
Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
Tom....Hi! good to "see" ya!
I just responded to TWO Tom's in one post.  
A Tomm-Tom.😎 
 
I'm so talented.

Well that 8 hour infusion was fun! Not......🤣
Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
Tom....Hi! good to "see" ya!
I just responded to TWO Tom's in one post.  
A Tomm-Tom.😎 
 
I'm so talented.

Well that 8 hour infusion was fun! Not......🤣
Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
Tom....Hi! good to "see" ya!
I just responded to TWO Tom's in one post.  
A Tomm-Tom.😎 
 
I'm so talented.

Well that 8 hour infusion was fun! Not......🤣
Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
Tom....Hi! good to "see" ya!
I just responded to TWO Tom's in one post.  
A Tomm-Tom.😎 
 
I'm so talented.

Well that 8 hour infusion was fun! Not......🤣
Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
Tom....Hi! good to "see" ya!
I just responded to TWO Tom's in one post.  
A Tomm-Tom.😎 
 
I'm so talented.

Kelo,
I don't taste it, I put it in capsules and took it every 8 hours. If you keep taking it you will build up a tolerance and can take a larger does. Thc kills tumors too...
keep us posted