Robert Macaulay

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.😊

Opal I'm glad you got to resume your durva! Hey that's a possibility that the rash coulda been from flu shot combined with treatment. Maybe freaked out your system!
Well now your treatments are opposite weeks from ours. You go Thursdays? Bob and I have somehow inadvertently synched our treatments...( Twinning. lol) We get them on Wednesdays. The next one is the 19th.😂 
I have some cough too. Mine's only in the mornings for a bit after I first get up. Then it goes away the rest of the day. I'm watching for anything new or weird. I guess pneumonitis woulda shown up in the pet or xray though. Wouldn't it?
 
So Bob...are you on an antibiotic now too or just the cough meds?
 

I see radiation doc on Monday but not sure she'll know anything. I see oncologist on the 19th. I kinda expected the right side to show something though after that pain I had. Could be cancer starting in my ribs... or could be inflammation I guess. It's the same general area that my last PET in May said had a very small uptake...they suggested it was post traumatic change...whatever that is. 🤨 
I can't worry bout those new little nodules yet. 3 of em have no activity sooo....... Not gonna sweat the little sh*t. LOL
Will update when I get with the onc.

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. 

Eagle I do get copies of all my scans. I get them before the docs do sometimes I think! LOL But I live next door to the imaging center so it's pretty easy to walk over and get them.
While I'm waiting to find out doc's interpretation of results, I'll just focus on the positive...the tumor has shrunk significantly. NONE of my lymphnodes are showing any activity anymore. 
 
It's the cancer cha-cha. 
 
 😁
 

Kleo
I have had eight so far and the next is due on Dec-19. I have never seen any of my scans and they have never offered to show them to me and most time i wait for the doctors to comment and let them do all the talking till they run out of things to say and i just nod my head and give them thumbs up. If i do have concern or question i will bring it up and i get out as soon as possible. As long as i feel good and they are happy the way  all my treatment has been going.Now this week after the infusion things took different direction with the cough and congestion and the advice for that was to get medical help.
There is one thing that comes to mind during the last infusion i never took any water  and even when i got home same thing no water and at 9pm the coughing started all the way to 4am and i think now this stupid move on part not having water and played big factor. Cough is down to just clearing my congestion and that is loosening up thank goodness.
I did wonder why they ordered the pet instead of the regular ct but there is no way i could answer that question. At this stage let the doctors do the interpretations and let them tell you the course of action if any,  And also you do not want to miss out on the Xmas  basket from Durvalumab.

Kleo
Feeling lot better today my Stomach muscles are still sore from all that coughing feels as if i did five situps in  succession. lol  When you are on Durvalumab i thought i read it is not advIsable to take Antibiotics ,I asked the doc if she had anything and she never replied so i said what about store bought products and she agreed.So couple of Mucinex a day and couples swigs of Robitussen will get me back to normal what ever normal is these days.  lol.
I got my curve ball thrown at me with the coughing  hours after the infusion and was fully expecting to be given Predisone and the treatment stopped. You just got a fast ball thrown at you today and i fully expect i will get one someday as all cancer patients do during treatment . I am expecting a phone call early next week as my oncologist is back and looks at my scan from yesterday and compares it to Oct-29 results I might also be whistling Dixie or my favourite  Que sera sera.
The positives is they done the right thing giving you the Pet Scan and both doctors will come up with a new game plan based on what they interpret from the skin flick.  lol
Get your appointment book ready for 2019 and away we go again. Hi Ho Silver
Bob

I always do this...I get my scan results before I see the doctor. That's bad really because then I interpret them myself! LOL Really you aren't even supposed to do a pet scan for 4-6 months post radiation because it can give false positives. Mine is slightly early...my 4 month mark is the 15th. I may have been prematurely PET-ed.😜 
So I could be freaking out for nothing here. Could be just post treatment activity...who knows. Wouldn't be the first time I overreacted. Remember in chemo when I got thrush & thought I was turning into a zombie? 🤣
Bob how many durva's have you had now? I'm only at 5 so far.
Opal...have you resumed durva treatments? 
 

Kleo
I have had eight so far and the next is due on Dec-19. I have never seen any of my scans and they have never offered to show them to me and most time i wait for the doctors to comment and let them do all the talking till they run out of things to say and i just nod my head and give them thumbs up. If i do have concern or question i will bring it up and i get out as soon as possible. As long as i feel good and they are happy the way  all my treatment has been going.Now this week after the infusion things took different direction with the cough and congestion and the advice for that was to get medical help.
There is one thing that comes to mind during the last infusion i never took any water  and even when i got home same thing no water and at 9pm the coughing started all the way to 4am and i think now this stupid move on part not having water and played big factor. Cough is down to just clearing my congestion and that is loosening up thank goodness.
I did wonder why they ordered the pet instead of the regular ct but there is no way i could answer that question. At this stage let the doctors do the interpretations and let them tell you the course of action if any,  And also you do not want to miss out on the Xmas  basket from Durvalumab.

Prayers Bob

Bob,
You are such a funny guy!! Glad you are in our corner!! 
 
Ro

Bob are you doing CT scans or PET scans? I look great in the CT's! Tumor super shrunk and nothing else looked bad. 
 
Kinda bombed that PET today though. Dang it.
 🎵*whistles dixie"🎵

Kleo
Feeling lot better today my Stomach muscles are still sore from all that coughing feels as if i did five situps in  succession. lol  When you are on Durvalumab i thought i read it is not advIsable to take Antibiotics ,I asked the doc if she had anything and she never replied so i said what about store bought products and she agreed.So couple of Mucinex a day and couples swigs of Robitussen will get me back to normal what ever normal is these days.  lol.
I got my curve ball thrown at me with the coughing  hours after the infusion and was fully expecting to be given Predisone and the treatment stopped. You just got a fast ball thrown at you today and i fully expect i will get one someday as all cancer patients do during treatment . I am expecting a phone call early next week as my oncologist is back and looks at my scan from yesterday and compares it to Oct-29 results I might also be whistling Dixie or my favourite  Que sera sera.
The positives is they done the right thing giving you the Pet Scan and both doctors will come up with a new game plan based on what they interpret from the skin flick.  lol
Get your appointment book ready for 2019 and away we go again. Hi Ho Silver
Bob

Kleo
Feeling lot better today my Stomach muscles are still sore from all that coughing feels as if i did five situps in  succession. lol  When you are on Durvalumab i thought i read it is not advIsable to take Antibiotics ,I asked the doc if she had anything and she never replied so i said what about store bought products and she agreed.So couple of Mucinex a day and couples swigs of Robitussen will get me back to normal what ever normal is these days.  lol.
I got my curve ball thrown at me with the coughing  hours after the infusion and was fully expecting to be given Predisone and the treatment stopped. You just got a fast ball thrown at you today and i fully expect i will get one someday as all cancer patients do during treatment . I am expecting a phone call early next week as my oncologist is back and looks at my scan from yesterday and compares it to Oct-29 results I might also be whistling Dixie or my favourite  Que sera sera.
The positives is they done the right thing giving you the Pet Scan and both doctors will come up with a new game plan based on what they interpret from the skin flick.  lol
Get your appointment book ready for 2019 and away we go again. Hi Ho Silver
Bob

Heading down to the clinic this morning pretty sure i have Pheumonitis and yesterdays infusion just confirmed,  as the cough was getting  worse over the last two weeks. No big deal in the big picture.  lol
Bob

Good morning, 
I hope you were able to get some rest last night. Your trip to the er sounded terrible. I’ll remember your advice and take stuff with me if I have go.  Take care of yourself and get better. 
Paula
 

You're a trouper, Bob!  Sounds like that tumor isn't happy about having its happy existence disturbed.  Glad you went and had it all checked out.  Your visit to the ER sounds a bit like my re-admission for the crepitus I experienced after my surgery--after the four-star treatment at the time of surgery I felt like I was back in the Motel 6.  What counts most is coming out of it OK.  
Hang in there and hope the coughing is done soon.

Well that was a intresting long day ,The clinic that does my checkup both doctors were unavailible and were GP, So the nurse told me to go to emergency i cringed and away i went and checked in at 10-30.They took blood work and the young doctor came in and checked me over and i told her the symptoms and the drug she never heard of it and ordered a x-ray. Thy gave me a private room which i was grateful for this time of year.Four hours later the doctor came back and was sorry for the delay. My oncologist in Victoria was on vacation and the on call individual had not returned her call. One hour later and those four wall in the private waiting room were not looking so good but the oncologist had called back and wanted a CT scan done, within ten minutes  I had my IV  in and taken right in as soon as got there for the scan. Got taken back to my private jail cell and that was taken. No big deal they had two.Doctor came in after about ten minutes and had been in discussion with the on call oncologist. with the results. She said they would rather not use predistone at his stage as it would mean cancelling Durvalumab. All they could see on the scan was Pneumonitis around the my tumor and other than that both lungs were clear of Pneumonitis and i agreed with there decision as the blood work was all good and oxygen levels no concern.Over the counter cough medicine will be choice at bedtime tonight. I do not have another infusion till Dec-19 and bet they will wait as see the doc on the 18th prior.What i found intresting the inflamation was all centered around the tumor, and with my extensive medical knowledge i have to take that as good sign. 😎
If you have to go to the emergency dept take as much information with you, I had all this information but never thought i was being sent there.All in All long day but pleased with the outcome even after coughing for seven hours last night.
Bob
 

Well that was a intresting long day ,The clinic that does my checkup both doctors were unavailible and were GP, So the nurse told me to go to emergency i cringed and away i went and checked in at 10-30.They took blood work and the young doctor came in and checked me over and i told her the symptoms and the drug she never heard of it and ordered a x-ray. Thy gave me a private room which i was grateful for this time of year.Four hours later the doctor came back and was sorry for the delay. My oncologist in Victoria was on vacation and the on call individual had not returned her call. One hour later and those four wall in the private waiting room were not looking so good but the oncologist had called back and wanted a CT scan done, within ten minutes  I had my IV  in and taken right in as soon as got there for the scan. Got taken back to my private jail cell and that was taken. No big deal they had two.Doctor came in after about ten minutes and had been in discussion with the on call oncologist. with the results. She said they would rather not use predistone at his stage as it would mean cancelling Durvalumab. All they could see on the scan was Pneumonitis around the my tumor and other than that both lungs were clear of Pneumonitis and i agreed with there decision as the blood work was all good and oxygen levels no concern.Over the counter cough medicine will be choice at bedtime tonight. I do not have another infusion till Dec-19 and bet they will wait as see the doc on the 18th prior.What i found intresting the inflamation was all centered around the tumor, and with my extensive medical knowledge i have to take that as good sign. 😎
If you have to go to the emergency dept take as much information with you, I had all this information but never thought i was being sent there.All in All long day but pleased with the outcome even after coughing for seven hours last night.
Bob
 

Seven hours of coughing- yuck.  I’m so sorry. Your ED visit sounds like mine last month.  Those poor docs have never heard of the super duper drugs we are taking.  I brought a encyclopedia of info with me & told the docs what labs to draw!  Good news on busting out of jail.   Check out belly breathing on YouTube.  It sure helped me with the pneumonitis.  

Well that was a intresting long day ,The clinic that does my checkup both doctors were unavailible and were GP, So the nurse told me to go to emergency i cringed and away i went and checked in at 10-30.They took blood work and the young doctor came in and checked me over and i told her the symptoms and the drug she never heard of it and ordered a x-ray. Thy gave me a private room which i was grateful for this time of year.Four hours later the doctor came back and was sorry for the delay. My oncologist in Victoria was on vacation and the on call individual had not returned her call. One hour later and those four wall in the private waiting room were not looking so good but the oncologist had called back and wanted a CT scan done, within ten minutes  I had my IV  in and taken right in as soon as got there for the scan. Got taken back to my private jail cell and that was taken. No big deal they had two.Doctor came in after about ten minutes and had been in discussion with the on call oncologist. with the results. She said they would rather not use predistone at his stage as it would mean cancelling Durvalumab. All they could see on the scan was Pneumonitis around the my tumor and other than that both lungs were clear of Pneumonitis and i agreed with there decision as the blood work was all good and oxygen levels no concern.Over the counter cough medicine will be choice at bedtime tonight. I do not have another infusion till Dec-19 and bet they will wait as see the doc on the 18th prior.What i found intresting the inflamation was all centered around the tumor, and with my extensive medical knowledge i have to take that as good sign. 😎
If you have to go to the emergency dept take as much information with you, I had all this information but never thought i was being sent there.All in All long day but pleased with the outcome even after coughing for seven hours last night.
Bob
 

Well that was a intresting long day ,The clinic that does my checkup both doctors were unavailible and were GP, So the nurse told me to go to emergency i cringed and away i went and checked in at 10-30.They took blood work and the young doctor came in and checked me over and i told her the symptoms and the drug she never heard of it and ordered a x-ray. Thy gave me a private room which i was grateful for this time of year.Four hours later the doctor came back and was sorry for the delay. My oncologist in Victoria was on vacation and the on call individual had not returned her call. One hour later and those four wall in the private waiting room were not looking so good but the oncologist had called back and wanted a CT scan done, within ten minutes  I had my IV  in and taken right in as soon as got there for the scan. Got taken back to my private jail cell and that was taken. No big deal they had two.Doctor came in after about ten minutes and had been in discussion with the on call oncologist. with the results. She said they would rather not use predistone at his stage as it would mean cancelling Durvalumab. All they could see on the scan was Pneumonitis around the my tumor and other than that both lungs were clear of Pneumonitis and i agreed with there decision as the blood work was all good and oxygen levels no concern.Over the counter cough medicine will be choice at bedtime tonight. I do not have another infusion till Dec-19 and bet they will wait as see the doc on the 18th prior.What i found intresting the inflamation was all centered around the tumor, and with my extensive medical knowledge i have to take that as good sign. 😎
If you have to go to the emergency dept take as much information with you, I had all this information but never thought i was being sent there.All in All long day but pleased with the outcome even after coughing for seven hours last night.
Bob
 

Got my pet scan appointment....Dec 7th! Now I'm gonna do the scanxiety thing for a week....🤨 

Kleo
Well the tube of itch cream they give you in the gift basket might last you two days and the plastic water bottle is now on its way to be reycle depot, They must have paid more to the courier to deliver the contents.
But to be fair they are covering all the costs for the infusions and clinic costs and without that i would not be getting this treatment at his time till the goverment  make the decision to cover this drug. I am good till February till the next scan.
My bet is they are waiting till nearer Xmas to give you your basket. Ho Ho Ho.
Bob

Kleo
Well the tube of itch cream they give you in the gift basket might last you two days and the plastic water bottle is now on its way to be reycle depot, They must have paid more to the courier to deliver the contents.
But to be fair they are covering all the costs for the infusions and clinic costs and without that i would not be getting this treatment at his time till the goverment  make the decision to cover this drug. I am good till February till the next scan.
My bet is they are waiting till nearer Xmas to give you your basket. Ho Ho Ho.
Bob