Durvalumab

[BridgetO]

Where are those durvalumab twins anyway? Kleo? Robert?

[Kleo]

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!

[LaurenH]

Thanks for the update, Kleo! In this case, it sounds like no news is good news! I hope you get some relief from the muscle spasms soon though.

Robert, we're thinking of you this week and hoping you can report good scans!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Robert Macaulay]

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

[Kleo]

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

[BridgetO]

yay for Bob and durvalumab!

[PaulaC]

Great news!

[Kleo]

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! 😝

[Roz]

Great news Bob! Hoping it continues to go smoothly!!

 

Ro

[Kleo]

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! 

😁

 

[Tom Galli]

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

 

[Kleo]

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 

[Robert Macaulay]

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

[BridgetO]

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? 

[Kleo]

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.🤨

[Joy Marie]

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

 

[Kleo]

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!? 😆

 

[Eagle13]

Watch the weight gain.  It was fluid build up for me, Pleural Efusion.  Mine was more rapid then a pound every two weeks though.

[Kleo]

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

[PaulaC]

15 hours ago, Kleo said:

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

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. 

[Robert Macaulay]

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.

[PaulaC]

On 11/18/2018 at 11:01 AM, Robert Macaulay said:

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.

Bob

I also had put on weight between stress eating and not being as active so my weight is fine right now. 

[Robert Macaulay]

Just received a box delivered by Fed Ex from the makers of  durvalumab  thought at first it was my drugs for tomorrows infusion as the doctor yesterday was saying she is the one giving approval now. It was a thank you gift with no expense spared, Water bottle. cream for itching, Calendar to mark any problems that might arise and nice red back to carry all that in with there logo very prominent. Oh well beggars cannot be choosers.

Funny thing while getting my last infusion there was woman in the chair next to me and kept looking over and was reading a magazine i could not talk as my right hand had the drip in .Shen then says to me you look like Robert De Niro and then called the two nurses over to reveal her great discovery and they agreed. I just shook my head and smiled. 

Never a dull moment

Bob

 

[Opal]

Hey Bob, would you mind sharing what the itch cream is? Maybe it is the answer to my rash.  As I'm still scratching here haha.  Actually seems my rash is easing up so not sure if from tapered steroids or almost 2 months since last infusion.  

[Robert Macaulay]

The one they sent is called Natureplex Maximum strength Hydrocotison Cream fast itch and rash relief. No idea how good it is as i use Derma -E Itch relief Lotion and it works great for me in minutes but i only have a itch no rash.

Bob