Barb1260

Went to get the dreaded CT today. Wasn’t worried about it then because I was worried about just going to a medical facility. Now that it’s done I’m a big bunch of anxiety waiting for the results. Don’t think this will ever get better. But #23 on Thursday if all is good and tomorrow is a year since I went back to work. I think I need a medical vacation

Thanks Tom. CT next week, fingers crossed.

DFK-thanks and very cute!

Well here I am waiting for #22. Saw the onc. She also states CTs are better than PETs and she’s not worried about it. Asked her how will we know if I get to NED. “I consider you NED and you are all scar tissue”. Woohoo

DFK. Thanks! I’ve heard that before and you just made me remember that CTs are better. I will definitely get good details from the doc meeting. I was scheduled for a weekend in April at camp for cancer patients that the hospital rents every year. It too was cancelled because of Coronavirus. I was looking forward to canoeing dang it. Guess I may just have to go to the beach or at least the lake.

Hey Kate. In my head no uptake is the same as dead. I’m probably wrong but how else would NED show?

Just called to get the criteria. Because I was already diagnosed-gee ya think?-they don’t approve without good reason such as a bad CT or MRI or bone scan. When I said it’s to check if the Imfinzi is working she stated all the doc has to do is have a peer to peer explaining that and it should get approved. So back to my original plan-talk to the doc Thursday and decide if now or after 5 more infusions. Pain in the butt. Going to do my 3 miles to blow off steam. I had to call just to witch at someone there. JG roots ahowing

Not entitled to anything more than a CT every 3 months. They want to pay for both instead of just the PET if they find something.

Michelle-i was going to appeal but I may wait until the end of this Imfinzi which is May 7th and fight for one then as if I got one now it will be another fight then. I’m speaking to my case manager also and to the docs office Thursday about them doing a peer to peer. . One test-20 phone calls-ridiculous

So ticked off right now. Insurance denied PET again. Said unless CT is inconclusive won’t approve a PET. So now it’s another CT to be scheduled. How are you supposed to know if it’s dead or spread somewhere else without a PET?

Not sure what a JG is but praying for them both. Pizza is not a problem

Did I miss something?

Hi all. #21 done Thursday. Blood work ok. Just a little tired so made myself be lazy all weekend. Don’t know what it’s going to be like mentally after this is done.

Yay! Congratulations

DFK-great that you’re on the mend. The tooth thing is one of those side effects that is not mentioned. The onc gave me magic mouthwash. It’s awful. Not like the one I had for the radiation burn in my esophogus. This numbs the whole mouth. She said she has seen really bad mouth sores from other immunotherapy drugs but not from Imfinzi yet. Hopefully it will clear quickly as it is a slight case. I had thrush once a long time ago and it was much worse than this. One thing she finally said that she wouldn’t admit to before is that this is still considered a new drug and the list of side effects is not complete. Every thing is considered a side effect until it’s proven to come from something else. I just wonder what the long term effects are? not going to worry about it until I have to. My pillow is calling as I’m still feeling the Benadryl so good night fellow Durvas, have a restful sleep

Thanks Tomm. Good luck on #22. I remember when I was happy to make it to #13, halfway there. Doc says it’s thrush from the inhalers so rx called in.

Good morning all. On my way to #20. One question please-can this immunotherapy cause thrush? Like someone started a fire in my mouth

DFK-hope you feel better soon.

Ok call me dumb but what does FABNO stand for?

You guys 🤣

Michelle-guess it was the heels because it’s much better today. Didn’t see the onc today but got #19. And I lost 1 lb so woohoo-gotta celebrate the small things.

Tomm you are almost there!!!

Tomorrow is #19 unless the onc wants to send me for scans. All of a sudden yesterday when I woke up my hip was painful when I walk. Doesn’t hurt otherwise. I’m thinking it’s overuse from walking or wearing heels 👠 for the first time in over a year on Monday. My fear is this is now in my bones. Tired of worrying about every ache.

Hi Opal. My doc says no. The nutritionist agrees that it does cause weight gain as everyone in the practice on it is complaining about gaining weight. Que sera sera

Sillycat-glad you’re doing well. My port gets wonky but at the last infusion a new older nurse said to turn and tilt my head away from the port. The line runs right up into the crease of my neck and she said probably gets a little kink in it. It worked! And to think nobody else thought of this and it’s been a problem almost every time. Now if she has any wisdom about how to stop this weight gain I hope she shares. I eat like a bird and walk miles most nights and still it doesn’t matter. My major complaint about this Durva journey. #19 tomorrow. May 7th is the last and I cannot wait. Enjoy the Y-