Durvalumab

[Roz]

Kleo,

I don't think there are any words that really help when dealing with all of this. Just know that there's a whole group of us here that are routing for you and continuing to send positive vibes and support your way. Waiting for your update after you see the onc...

 

Best,

Ro

[Robert Macaulay]

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

[Roz]

Bob,

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

 

Ro

[Kleo]

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"🎵

[Robert Macaulay]

Kleo

My oncologist is female and around forty years younger to me and i think she prefers to order ct scans for me at his time.Now that could change as the clinic she works is in the process of installing a new pet scan machine and is supposed to be operational in Jan-2019 and i am not putting my name forward to be a test pilot that might come soon enough.

Any results in this game are better sooner rather than later.

Bob

[BridgetO]

Kleo, what a drag! Let's get that durvalumab working, here!  I'm rooting for you, too.

Bob, glad you're feeling better and don't have to suspend the durva. 

 

[Kleo]

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? 

 

[Robert Macaulay]

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.

[Eagle13]

Here is a good link that describes the PET and the differences from a CT.

https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan

My personal experience has been insurance wont approve the more expensive PET unless the Dr has a pre-scan approval discussion with the ins company Dr.  The PET is newer more advanced technolgy where the CT is the main stay.

You should ask for a copy of each scan from each provider along with the radiologist report.  Its your medical record.  I have personally taken my scan results to get second and 3rd opinions from no kidding top notch experts.  

Don’t be afraid to demand the genetic biomarker testing.  This is what changed direction for me after the Durva was not working.

 

🦅

[Kleo]

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. 

 

 😁

 

[Robert Macaulay]

Kleo

You jogged my memory on antibiotics and could not find any information that says not to use with Durvalumab anywhere and i think it was the nurse at the infusion clinic same as have you had flu shot today. This seems to be the same infection i had this time last year and the doc gave me a fresh supply of antibiotics and they worked just fine.So if i do not reply in the near future you will know the reason why.  lol

What you mention about your tumor and lymphnodes  is similar to the information the docs give me and the seem happy and who am i to argue.

Bob

[Opal]

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. 

[Robert Macaulay]

Opal

Yes i found out. The nurse asked me prior to infusion did you have flu shot today. and i would reply no.

They Do not like you to get a flu shot and a infusion on the same day as if there was a reaction they would not know which one to treat. Makes sense to me now.

I think the same applies to antibiotics now that i am not sure and just took one two hours ago.I use DermA-E  itch relief lotion and works treat  overnight.

I bought small room humidifier as the heat is now on all day in the house and move it to which room i am in and sure does help my cough after i got by this weeks episode.

Bob

[Opal]

Kleo, I did resume the Durva on Nov 28. Going again on 12/

15 minutes ago, Robert Macaulay said:

Opal

Yes i found out. The nurse asked me prior to infusion did you have flu shot today. and i would reply no.

They Do not like you to get a flu shot and a infusion on the same day as if there was a reaction they would not know which one to treat. Makes sense to me now.

I think the same applies to antibiotics now that i am not sure and just took one two hours ago.I use DermA-E  itch relief lotion and works treat  overnight.

I bought small room humidifier as the heat is now on all day in the house and move it to which room i am in and sure does help my cough after i got by this weeks episode.

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]

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?

 

[Robert Macaulay]

Kleo

Had some antibiotics prior to starting Durvalumab from the Doc  for previous congestion very similar and they cleared it up so she gave me some more when i was on chemo in July.  Right now just the antibiotic,  I also found out on the Durvalumab website that  Mucinex is compatible and Tums as i take them for calcium levels.

Right now i feel  my breathing is back to normal, But watch that cough as that is how mine started just little in the morning nothing to worry about  till the congestion got worse and i now believe i got a infection similar to earlier this year but it sure was a wake up call .

Bob

[Opal]

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. 

[Robert Macaulay]

Opal

pneumonitis will definitly show up on ct scan as i got one on wednesday this week as they were concerned about pneumonitis with my symtoms,  and thank goodness that was not the case except for some inflamation surrounding my tumor

[Opal]

Bob, I had inflammation too. I believe that's why they kept me on steroids longer and added the antibiotics.

[Robert Macaulay]

Opal

My onclogist is back Monday and she will have look at the scan, The on call oncologist did not want to prescribe  Prednisone as he would have to stop the drug for the little amount of inflamation shown on the scan. So i take that as good sign at least till next week.😎

Where are located west coast ?

Bob

[Opal]

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.

[Kleo]

Opal...I've had prednisone before and it didn't bother me much. Everyone must react differently!

Well heck I wish you could get your infusions lined up with ours...then we could be durva TRIPLETS!😂 Heehee.

I go tomorrow to the radiation doc. She'll have the recent PET results. Really though I'm not even sure that anything can be done at this point but watch and wait. None of this new stuff is big enough to biopsy I don't think.  Dangit I wish they'd done the biomarker testing in the first biopsy. 😕

Bob tell the doc you can't suspend durva because it'll mess up our treatment twin schedule.🤣

[Robert Macaulay]

Kleo

I think i will pass on the antibiotics,   https://www.theguardian.com/society/2018/jun/02/cancer-antibiotics-immunotherapy-treatment-study

Bob

[Kleo]

Yikes! Yeah unless it gets real bad...I think pass!😫

[Eagle13]

7 hours ago, Kleo said:

...... Dangit I wish they'd done the biomarker testing in the first biopsy. ......

Kleo-

I too wish they had done the biomarker testing on my biopsy.  My biomarker testing was done on the fluid pulled from the thoracintesis.   I also had blood pulled that confirmed the finding from the biomarker testing.  In my opinion it can be done from bloodwork.

🦅