Kleo

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

Personally, I'd tune into their podcast.  

Hey Kleo- The “twins”are gaining quite the following!  I admire your tenacity!  If there’s anyone who can boss cancer out the door it’s you!!  
Michelle

Stay positive!  Ask for a copy of the scan on a CD.  There are youtube’s on how to look at the scan yourself.  The PET should light up any cancer that is active.  I pray that your scan is clear.
🦅

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

I didn't get no durva gift basket! Man Bob you get all the goodies! 😁
I haven't gotten a rash or even itching all that much. I did notice my skin is extremely dry though. Back spasms have stopped and now it's just sore muscles...I can handle soreness just not that spasming crap!
My doc said I get a pet scan next month. Tis the season to get pet scanned...fa la la lala....🎄🎅

I went up to 208 pounds prior to my treatment in March this year on purpose. During the treatment stayed at 200 pounds.The last two full doses of chemo in July i lost all my hair and dropped to 172 pounds. Now steady at the 200 pounds mark since late August when starting durvalumab and decided to keep my hair short less grey hairs that way lol.

I just finished a bag of Halloween candy! 😳😂. I gained back almost 2 pounds but I’ve 40 pounds since April. I’m just glad I’m over the candy kick. 

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

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!? 😆
 

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!? 😆
 

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!? 😆
 

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!? 😆
 

My mom has fibromyalgia and muscle spasms through the years she's managed with her pain by using all sorts of things.  She has a TENS unit that people can now buy in drugstores.  She also used heating pads and cold packs.  Lidocaine patches help but recently she found a roll on type of Lidocaine that really works for her.  It's the Aspercreme brand.  Also at her physical therapy they used 'cupping' on her.  They are suction cups to be placed on or around painful areas, this has been like a miracle help for her.     Joy
 

You are definitely not alone.  I think we should get t-shirts that say "LUNG CANCER: Been there, done that, got the t-shirt". 

wow, Kleo, that sounds awful! I had muscle spasms in my buttock as a reuslt of a very weird side effect of my gyn cancer surgery. It wasn't contiuous, though, but would come on very suddenly, usually when I was out walking. It was awful, sometimes I wondered how I would get home. At its worst, It made me feel like banging my head. The only thing that made it tolerable is that it didn't last long, maybe an hour or two. Two things that helped it resolve sooner were sitting with a tennis ball pressed in the center of the painful area, and lying down with alternating hot and cold packs.  Sounds like yours is continuous, though. I can't imaging that kind of pain going on for a long time! Can you sleep? 

Sorry to hear that you could try Ibuprofen extra strength works for me.

Klein,
Look back over your blood tests and check the magnesium level (MG). You may find it low. Low MG can cause muscle cramps. 
Ask your doctor if you can start taking MG daily if your blood level is low. I take 750 mg/day and that wards off most cramps. 
Stay the course. 
Tom
 

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! 😝

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! 😁 

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

Hi All
Just got back from Victoria and my temperature light came on one hour into the drive lucky there was gas station nearby as the temp gauge stayed steady topped the bottle up and hoped for the best and that solved the problem the rest of the way down and all the way home.
Seen the Doc and her resident assistant and the were very pleased with the Ct scan as it showed no progression and the tumour shows slight decrease since the last scan in July, She also said my lung were still bit inflamed but that is from the radiation and is normal. Both were very pleased with my condition and blood work i only now see the doctor once month during infusions instead of bi-weekly. She has scheduled another Ct scan in three months time and told me not to bother coming down to the clinic as she will call me at home with the results.
One thing the resident doctor mentioned i thought was intresting this drug works for a very long time after your finished the treatment.On infusion number six this week and no side effects at all but he said the can come at any time so onward to the six month mark which is piece cake compared to a full dose of chemo. lol
Bob

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!