Opal

Hello all!  Been a while since I posted and I see several "Durvies" joined this immuno journey since I posted end of March.  So many of you put great and encouraging info out there. TX!! 
1st... Hi to Kleo..got you in my prayers everyday!  You keep on going! You mention no PDL1 but your lungs cleared up. Couldnt it have been Durva was working?
Bob M  -I'm behind you by just a few infusions, I'm up for #18.  Please keep us posted on how you are and what happens next when you reach the end of infusions. I feel pretty similar to you as far as mutation or lack of or lack of testing. How is your cough? I have one and hope its side effect of the durva.
Eagle, thanks for your encouragement to keep going and not fear scans. 
Hello to 2 Jersey girls😊
Here is my update since early April...in March I was having discomfort in my back near original tumor area so scans were done a week early. Small spot on my spine near tumor area. My Onc stopped Durval and sent me to RAD Onc, who BTW told me a year ago at radiation to eat eat eat. I have been doing so since and gained about 15 pounds and I'm still eating.  Don't think its the Durva. No lack of apetite here. 
Anyway the RAD Onc, he is wonderful!! said he wasnt convinced spot was "C" and was not going to radiate but sent me to IR.  Interventional radiology did biopsy and yippee, turns out not "C" but a minor fracture and I got a little cement. This episode set me back 2 infusions.
I am behind a total of 4 infusions because after my very first 2 fifteen treatments ago, I got awful rash and concern for pneumonitis went on prednisone and then a taper which took about a month.  This set me back 2.  
So after 17 treatments my new rash is slight and only on my forearms. I do get fatigue and dont have ambition and drive the old me had. But I try to stay positive and push myself. Sleep is awful. Anxiety is too. I have hard time not thinking "what if".  My leg, knee and hip joints are fairly stiff. (Note to self..I am a year older)But I thank God I feel as good as I do.  I did notice this went away when I was off Durva for the month. Must admit after a month of no infusions I felt really good. No short breath, cough or stiff bones or muscle aches. 
I get infusion every 2 weeks and typically can go shopping or out to dinner on way home so it really isnt anything like chemo. 
I'm due for scans next week. Scanxiety! I'm trying to stay off the internet because I dont like reading about OS etc.  I am trying to think this treatment will be as my Onc says "with curative intent".  And I'm not underestimating the power of prayer.
Here in the States its a holiday. Happy 4th! (Sorry this was long).
 
 
 

Hey Bob, thanks for your reply and good to hear from you! Only 3 to go!! Thats terrific.  Yes, Que Sera Sera. I do sing that tune often.  I'll have you in my thoughts and prayers. I look to hearing  from you and updates. You're sort of the leader here for me being so close behind you in number of treatments. 😎
Please keep me posted. 

Hello all!  Been a while since I posted and I see several "Durvies" joined this immuno journey since I posted end of March.  So many of you put great and encouraging info out there. TX!! 
1st... Hi to Kleo..got you in my prayers everyday!  You keep on going! You mention no PDL1 but your lungs cleared up. Couldnt it have been Durva was working?
Bob M  -I'm behind you by just a few infusions, I'm up for #18.  Please keep us posted on how you are and what happens next when you reach the end of infusions. I feel pretty similar to you as far as mutation or lack of or lack of testing. How is your cough? I have one and hope its side effect of the durva.
Eagle, thanks for your encouragement to keep going and not fear scans. 
Hello to 2 Jersey girls😊
Here is my update since early April...in March I was having discomfort in my back near original tumor area so scans were done a week early. Small spot on my spine near tumor area. My Onc stopped Durval and sent me to RAD Onc, who BTW told me a year ago at radiation to eat eat eat. I have been doing so since and gained about 15 pounds and I'm still eating.  Don't think its the Durva. No lack of apetite here. 
Anyway the RAD Onc, he is wonderful!! said he wasnt convinced spot was "C" and was not going to radiate but sent me to IR.  Interventional radiology did biopsy and yippee, turns out not "C" but a minor fracture and I got a little cement. This episode set me back 2 infusions.
I am behind a total of 4 infusions because after my very first 2 fifteen treatments ago, I got awful rash and concern for pneumonitis went on prednisone and then a taper which took about a month.  This set me back 2.  
So after 17 treatments my new rash is slight and only on my forearms. I do get fatigue and dont have ambition and drive the old me had. But I try to stay positive and push myself. Sleep is awful. Anxiety is too. I have hard time not thinking "what if".  My leg, knee and hip joints are fairly stiff. (Note to self..I am a year older)But I thank God I feel as good as I do.  I did notice this went away when I was off Durva for the month. Must admit after a month of no infusions I felt really good. No short breath, cough or stiff bones or muscle aches. 
I get infusion every 2 weeks and typically can go shopping or out to dinner on way home so it really isnt anything like chemo. 
I'm due for scans next week. Scanxiety! I'm trying to stay off the internet because I dont like reading about OS etc.  I am trying to think this treatment will be as my Onc says "with curative intent".  And I'm not underestimating the power of prayer.
Here in the States its a holiday. Happy 4th! (Sorry this was long).
 
 
 

Hi Barb1260, don't be nervous, it could very well work for you! Think positive and I will keep positive thoughts for you too.   Good luck.  T/P exit 2

Hi Barb1260, don't be nervous, it could very well work for you! Think positive and I will keep positive thoughts for you too.   Good luck.  T/P exit 2

Hey Bob, Opal here.. I'm 2 infusions behind you tho I started 8/30 I had a nasty rash and my immuno was held.  Happy to say that rash is gone but got blotchy rash on arms now. My lymphocytes are low too, but told not to worry.  I'm due for scans about April 15 or so. Here's hoping we both get great results.
Kleo.... wondering how your joint and back and side muscle pain is?  You arent only one getting weird stuff, I too have strange joint back and muscle pain and stiffness. Tylenol is not helping.  I get infusion this week and will be inquiring about this. Are these adverse reactions or side effects....or old age perhaps.  Hope you are doing good and not working too hard😉
 

Kleo, SO glad to hear negative!  And I'm sure you are glad that's over

Kleo, sending you prayers and all good thoughts tomorrow for your procedure. 

Kleo, or shall I say Dr Kleo, you are too funny but you were right on, it seems about flu shot and infusion too much at the same time. 
Sending prayers and all good thoughts for you on your needle biopsy. You won't feel a thing!
Eagle13, wonderful to hear about your CT results and targeted therapy!! 

Kleo, or shall I say Dr Kleo, you are too funny but you were right on, it seems about flu shot and infusion too much at the same time. 
Sending prayers and all good thoughts for you on your needle biopsy. You won't feel a thing!
Eagle13, wonderful to hear about your CT results and targeted therapy!! 

Kleo, I was taking Prednisone 70mg daily. Fairly high dose. I was fine on them. Except made me cranky, eat eat and eat more, and cry for no reason. Oh and sleep was limited. I've heard some people had worse side effects so probably everyone reacts differently. 
TRIPLETS lol! Then maybe I wouldn't get any side effects either😀 (from durva).
Keep us posted on rad doc visit. Sending prayers.
Bob,
Re the link on antibiotics, OK now I'm wondering about those antibiotics I took while my Immuno was on hold. So even tho it was only on Mon, Wed, Fri while I was on steroids. Wonder if that cancelled out 3 prior infusions. Shall I sing Que sera sera???😥
Next visit I'm asking about Biomarkers. I didn't have done either.
 

Bob, it took a minute but I get it!  Thanks for that!!
Eagle 13, after reading your reply I do recall reading that thru this journey. Thanks for the link. And for your story. 
 

Hey Kleo, you are passing me by number on infusions now. I would have been on schedule with you and Bob if I didn't have to stop for a month. I go Wednesdays or Thursday whenever I can get an appointment or "chair".
I'm pretty sure pneumonitis would show up on CT or PET.  I was put on antibiotics along with the Prednisone, they were being cautious, in case whatever showed on my CT scan was pneumonitis. Turns out it wasn't. Glad your spasms stopped. 
I didn't get any Durva basket either😞 so don't feel alone on that one. 

I got fingers crossed you won't need Prednisone and have to stop Durva. I begged they take me off the Prednisone.
Wish I was on West coast but on East coast.

Hey Kleo, you are passing me by number on infusions now. I would have been on schedule with you and Bob if I didn't have to stop for a month. I go Wednesdays or Thursday whenever I can get an appointment or "chair".
I'm pretty sure pneumonitis would show up on CT or PET.  I was put on antibiotics along with the Prednisone, they were being cautious, in case whatever showed on my CT scan was pneumonitis. Turns out it wasn't. Glad your spasms stopped. 
I didn't get any Durva basket either😞 so don't feel alone on that one. 

Kleo, I did resume the Durva on Nov 28. Going again on 12/
I too, wondered why you were getting PET and not CT. Think positive! Hey your tumor shrunk and that's great news.
Bob, can you clarify what you wrote in your post an hour ago about the flu shot? I got my flu shot on the same day as infusion #3! Yikes!  BTW I've been coughing too. Seems worse in the evening. I too am taking cough med. I'm happy so far 1 week since infusion and only an itch here and there
 
YIKES! same nurse gave me flu shot THEN did my infusion. May be the reason I got the travelling "rash"!?  
I think I am posting the whole message again. Not figured out how this work. 
 
Anyway you have been OK with Immuno so any reaction I'd think could be antibiotic. Good luck and thanks for your experience and pointers with this.😊

Kleo, I did resume the Durva on Nov 28. Going again on 12/13. 
I too, wondered why you were getting PET and not CT. Think positive! Hey your tumor shrunk and that's great news.
Bob, can you clarify what you wrote in your post an hour ago about the flu shot? I got my flu shot on the same day as infusion #3! Yikes!  BTW I've been coughing too. Seems worse in the evening. I too am taking cough med. I'm happy so far 1 week since infusion and only an itch here and there.