Kleo

Could just be cannolis....I kinda been on a cannoli kick. 😁

Update....saw the doc today. Asked if this muscle pain spasm stuff was likely related to the durva. She said she really didn't know. Could be durva or could just be an injured muscle or rib. She asked me if I wanted to stop treatments. I said no! LOL It looks to me like the durva may be helping to shrink the tumor so I'd rather just continue treatments and see if this muscle stuff goes away or continues. I asked if it comes back bad again, can we try a steroid and does she think it might help? She said absolutely. Soo...game plan in place at least! Now that I've been wrapping my ribs, it's really eased up. I can move. And sleep. I'm good for now. I've noticed that every 2 weeks at my checkups, I've been gaining a pound! What if durva actually makes me fat!!?? Wouldn't THAT be a hoot!? 😆

No Bridget I'm not sleeping very well. 😕 I did a little better last night because I wrapped the area, took the valium and tylenol and tried not to move too much. Only woke me up once so that's progress! Had to go put air in my tire yesterday...brought tears to my eyes just doing that! I bet everyone at the gas station thought...boy that lady sure is upset about that low tire. LOL Why does my car only have issues when I feel crappy!!?? Broke down during chemo too! Dang car is out to get me.🤨

Thanks Tom! They tested magnesium at the ER...it's in normal range. I'll ask the doc if I can add a supplement. I've tried superhydrating with water and electrolytes as durva may cause dehydration. I've tried Flexeril, Valium, Loracet, Lidocaine rx patches, ice, heat....etc. It's almost as if I've got a locked or strained muscle that continues to contract or pull or whatever. I've now got sports wrap and am wrapping it around my torso where the muscle pain is...that allows me a little more mobility. It's been 2 weeks now....I've never really had a muscle issue last this long without easing up some so it's kinda freaking me out. A little. LOL

Ok I guess I have an update. Still the persistent muscle spasms/pain. Yesterday i got kinda worried and since cancer around here is CLOSED on the weekends...lol ..I went to ER. They checked everything. Ekg, bloodwork, chest xray. All came back clear. So no idea still if this is a side effect from durva but I'm starting to think so...only because I've never had spasms last this long! We're still trying to find something to control/stop the pain and spasms. Anyone with info on managing muscle spasms or pain from treatments please chime in! I've got valium and loracet. Not even touching it. The xray did show that the tumor is half the size it was compared to my September ct right before starting durva. I've only had 3 doses! don't know if that's the durva or maybe lingering radiation...maybe both.....but I'll take it! 😁

So someone posted this link on another thread. https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/ I just browsed through it to see what side effects they were having. At least now I'm not AS worried about my back spasms/pains...looks like it's happened to others too! 😝

Hurray Bob! I'm so happy it's agreeing with you! 😁

Haahaa I'm here Bridget! I just don't have anything interesting to report. 😝 I go in today for my 3rd infusion. Nothing as far as side effects yet really except I have gotten some nasty muscle spasms in my back. Might not even be related. Could just be a side effect of getting old! LOL I think Bob gets his scan results this week so maybe he'll check in after and let us know how it goes!

Ok now y'all got me scratchin and lookin for rashes. 🤨

Hi Opal and Welcome! I've only had one infusion so far but haven't noticed anything rashy yet! I guess it's too soon to tell maybe...? My second infusion is tomorrow...I'll be watching for any changes. I have heard that Keytruda can cause skin irritation and Durva is so similar that I'm not surprised. Scanxiety! EEP! Got my fingers crossed for a good scan for you!

I'm drinking water! Ok and coffee too but that is just flavored water in my book. LOL I've only had the one infusion so I guess there hasn't been time enough yet for side effects to show up. Hopefully none will! 🤞

Eagle...I'm glad they got you sorted out! I asked my onc if they did any genetic testing on my samples. She said no...that's only done if it's metatastic. wha? But....it spread to my lymphnode so isn't that still metatastic? Locally metatastic maybe? I dunno. I think right now they give the durvamulab regardless of PDL1 levels. Anyway I'm happy to hear the tagrisso is working so well for you!

Hi Sundance .... How long have you been on durvalumab? I've only just started on this treatment (one infusion so far).

I didn't lose my hair- but I didn't get the taxol! I'll be glad when your hubby gets the chemo over and done with too and y'all can join the Pacman party!.😀

No nothing much really yet. I was a bum yesterday. I just couch potatoed all day....but that's probably not the durva...that's more likely just me being lazy!😁 Today I've been out walking in the hood and went out for pizza with my son. Doing ok so far! Hoping it stays that way! Doc has me coming back just for a checkup & bloodwork Wednesday.

Haaa.....what....were there girlie magazines? Tools? Car parts? LOL 😜 I did get a welcome bag the very first time I went for infusion for the chemo. Had fluffy socks and a blanket, some lotion and candy and a book or something. I'm doing the immunotherapy at the same outpatient infusion place so I'm not a "New" patient anymore.

No...? Did you get a goody bag Bob? What was in it?

I have officially been infused. LOL I was pretty nervous. I ate a bag of cheesy poofs during the infusion....nervous snacking I guess. I got the orange cheesy powder all over everything. On the blanket and the chair....the nurse. It was even in my hair.🤣 Picture Pigpen from Charlie Brown..only orange. LOL Infusion was an hour, prep was an hour...so not too bad. Kinda nice to only get ONE bag-o-drugs after all the bags of stuff they had to give with chemo before! They didn't weigh me prior though. But I'd been weighed the week before. Recommended dosage of this stuff is 10 mg per kg.... I got 475 mg so that sounds about right I guess! So far so good...🤞 -

Nope. I think it COULD be...but seems like the nurses that aren't working in the infusion center aren't comfortable accessing them. They will use it for my pre-infusion blood tests though.

Haahaa!!...if I didn't have a port- I totally think that would happen. 😜

Soooo...Bob, not only are we on the same treatment schedule, we are actually getting our infusions on the same days now!?🤣

Got my start date finally! This Wed October 10. Eeep! Excited but nervous. LOL

I still haven't started mine. 😕 Gotta wait for the CT scan this week. Bob you didn't have side effects for chemo?! Wish I could say the same! Why do they always gotta have the icky side effects? Nausea, vomiting, neuropathy, hair loss, fatigue, etc. I wanna discover one that has some cool side effects. WARNING: May cause the sudden ability to fly, enhanced telepathy, increased speed and agility, night vision, extreme intelligence, etc. LOL I think I watch too many X-Men movies..😄

Bob I think we are treatment twins here...😁😁 Just got my CT appt for Sept. 26. That puts me at the end of October then for my first treatment. By then you'll have had several treatments so you're gonna be like my Yoda guide through this stuff! 😏

Wow! Expensive stuff! I'm lucky as well I get it covered under a local charitable organization called Baycare. I STILL don't have my start date though! Saw my onc today and she's ordering a CT first, follow up in 4 weeks...THEN I start. I think she's going on vacation so that's probably why I'm delayed. I guess there's no rush huh? October it is.... LOL And YAY for no funky side effects Bob!