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Robert Macaulay

Durvalumab

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Hi Durva Club! 
Just want to give a heads up there’s a newbie over in the Intro section, Polly, recently diagnosed with Stage IIIb NSCLC about to start immunotherapy.  She sounds like she can really use a hug.  Can you guys take a minute to send a little welcome?  
 

Hoping all is well with this gang, it’s been a quiet week!  
Michelle 

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Hi Everyone,

I think Michelle's hello (Above)  was a wake up call for me to put a halt to my current pity party. As most of you know, I completed my year/26 doses of Durvalumab on January 22nd. 
 

Man was I flying high. I did it, I finished a whole year. I had a bunch of lunches to attend, I had a list a mile long of all these projects I had put on hold. I was a force to contend with. Even increased my bike riding to every day. My husband and I were finally making plans about taking a long extended vacation. The world was my oyster. 
 

THEN, I got sick with the flu....five days home from my last infusion and BAM, I was laid out, TKO. Headaches, sore throat, queasiness and nausea, vomiting, diarrhea, ear aches, my entire body shrieking in pain. Coughing non stop. Two visits to Urgent care and 12 days later, I am finally feeling a little human again but remain weakened with about half my appetite back.... dropped a total of 10 lbs, not the best way to lose some weight. I mention this prolonged "illness" because my lungs seem to be my weak link. I was able to shake most of my aches and pains with OTC medicines but this nagging hacking cough is really quite challenging and lingering. I have a PETSCAN in 7 days and my cough has to be resolved......I am praying so hard.
 

So what's all this verbose complaining about.....we’ll, for me, it showed me I'm never far from falling apart emotionally despite all the strides I've made in the past year. I told my husband I am so depressed, why now,? why so sick? Why, why, why, I just couldn't get off of it. Him being of the male variety was very matter of fact, "You got the flu, you need to ride this one out, you will be better". Maybe from his perspective it's as simple as that but when you're the "injured" party and can barely lift your head off the pillow for almost two weeks, the light at the end of the tunnel seems miles away.

If you haven't received the flu shot, I highly recommend you get it. As I mentioned before, I've never had the flu before so never took a flu shot. Well that cocky attitude didn't serve me well. These are different times and I will never refuse to take a flu shot again.

I love you guys, thank you for letting me spout my misery.

Take Care, DFK


 

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Hope you on the mend soon DFK. As a medical practitioner I always have a flu shot and recommend all my at risk and over 65 get their shot.

trust you will be back on your bike soon .

lots of fluids and 1 gram Vit C a day usually helps me plus lemon honey ginger drinks plus or minus a tot of brandy. We call it “ kill or cure” remedy

Grahame 

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Hi DFK-

The flu bites big ones.  I wouldn’t beat yourself up about it though. One of my LiveStrong LC ladies got the flu shot and she just dropped out because she got the flu anyway.  

I had an interesting meeting with my social worker recently, similar to your “why now” depression.  Her insight was we fight so hard to live “normal” lives with a big diagnosis that something pre diagnosis which normally wouldn’t have have caused us to pause becomes an uncharacteristic set back.  Another entirely unwelcome reminder that our bodies aren’t the same anymore. Take care of your mind as well as your body. Scanxiety stinks.  
A lot can happen in the next seven days to improve before the PET scan.  Prayers for you! 
Michelle

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Thanks everyone......put in a nutshell, I was disappointed because so many of my plans had to be shelved because of this unexpected flu. Plans that I had so looked forward to.

I have already paid for flights for Friday's PetScan for husband and I. Chances are, I should be able to complete it without a hitch, but that's predicated on my nagging hacking dry cough being resolved. I am optomistic. 
 

Take care everyone, DFK

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Grahame 

you may know about this drug used to treat malaria  "artemisinin" but is also used to treat cancer. Artemisinin is a chemical compound in a traditional Chinese herb called Artemisia annua, or sweet wormwood. Some research suggests that it may show promise in future cancer treatments. I got it for several months  in an IV, something else to look at.

  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872176/

DFK  Hope your feeling better.  Use a CBD oil tincture for fast results if it doesn’t bother your throat. A tincture is the fastest way to get relief, so it might be your best bet if you’re hoping to stop a cough.  https://www.wikihow.com/Take-CBD-Oil-for-Cough

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Thanks Tomm

I have friend based in Zimbabwe who is a naturopath and grows artemeta in their garden and swears by its properties. Thanks for link 

was not aware could use it in an infusion

grahame

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Tomm,

Interesting Abstract on Artemisinin. Can't say I understand the entirety of the article but I can grasp the importance and need for more clinical trials and pioneers like yourself who do their homework. 
 

I'm a newbie re: CBD products so appreciate the link you provided. 

Grahame,

Thank you for your input on controlling my hacking cough.....any and all recommendations are sincerely appreciated.

Michelle,

Your social worker friend is spot on. What makes us tough and resilient may also be our downfall, our Achilles heel. A little glitch becomes our nemesis. Never too old to learn new coping strategies, to better understand our fragility.

Take good Care all, DFK

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Flu sucks. Yep, get the flu shot. if you get the flu anyway after the shot, it will  be less severe, or that's the theory anyway, And the flu is depressing.  Your husband is right--at least partly- you will be better. I think there can also be an end-of-treatment depression effect. Kind of like post partum depression but no baby. We get focused on getting through treatment and it keeps the mind and body occupied. We have these frequent appointments, scans, tests etc, and then it all stops and now what? We can feel like we've been cut off or set adrift to deal with the new normal. It can be disorienting.  If it's affecting you, it will get better, too. In the meantime, feel free to come on this forum to complain, vent, grouse or whatever you need to do. We get it. It's OK.

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Thank you Bridget for your kind and encouraging words. It's no fun being sick that's for sure and I'm usually not one that gets TKO'd, both physically and emotionally at the same time. This flu sure as heck took me by surprise and really mopped the floor with me. But I am on the mend and feel tons better than I did a few days ago. 

Take care all, thank you so much for your support and caring, DFK


 

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

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Hi Barb..   Good luck today, I go for #22 in a few hours, I found this-->> 

https://www.oncnursingnews.com/conference-coverage/ons-2018/monitoring-adverse-effects-of-immunotherapy

May 29, 2018 - Schwartz suggested. She added that some toxicities have been reported that aren't yet included in guidelines, including lyphohistiocytic infiltrate around salivary glands that could be mistaken for thrush, or lichenoid reactions on the tongue. These can also be treated with steroids.

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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. 

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Good Thursday Morning to Tomm (#22) and Barb (#20),

The countdown is on. Wishing you both uneventful infusions today. 
 

Barb, sorry to here about thrush issues from inhalers. What is MD giving you for your Thrush? I am taking Trellegy, a steroid inhaler and yes, I'm suppose to rinse my mouth after using. I will try to be more consistent. 
 

I feel like part of the Lungevity side line cheering squad holding that paper cup of water.....wishing you both uneventful finish line crossings. 
 

Recap, got the root canal for abscessed tooth behind me, and the head cold with infected sinuses with piercing ear aches behind me, then finally am looking at the flu in the rear view mirror though residual annoying cough persists.... but I am determined to finish my PETSCAN tomorrow. Results to be discussed on the 20th with Radiologist and Oncologist. But hey surprise surprise, my dentist was concerned that my tooth decayed so fast since my last x-rays were done in December and I had no dental issues.....so he had another good look at all my teeth. Well, well, well, I have another tooth abscess and this tooth may not be salvageable.....I find out Saturday after excavation if it’s s a root canal or extraction. One of my wisdom teeth. Dentist said pretty common for radiation and chemo to affect bone loss, gum recession and promote tooth decay. I was beyond upset, had my melt down and made all the appointments that need to be made. It's been a rough month but I am taking care of business and it's all okay. 

Take care everyone, DFK
 

 

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Greetings to group. So #1 successfully authorised and infusion done and dusted. Mild flush is all I felt. CT scan yet to be formally reported but oncologist happy with what he saw and gave authority to proceed. Great news. Fortnightly schedule in place and presuming no significant side effects for two years maintenance according to my onocologist

whoopee 

Grahame

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Grahame,

Excellent on "dusting" #1. The mild flush, was that at the end of the infusion? Are they accessing a port for infusions or peripheral line? 
 

Just wondering because the first couple of Durvalumab infusions I received I did not like how the nurses "flushed" my line/port with their 10cc saline then 10cc Heparinized syringes with the Durvalumab still in the main line. I basically could taste the Durvalumab and it made me feel a little flushed and uncomfortable. I talked with the Manager of the treatment Center and told her protocol is A) Slow IV push saline over 5 minutes to clear my IV line of Durvalumab or B ) Piggyback a 50cc bag of saline and run it at the end of my infusion at the same rate as Durvalumab was infused to clear the line of Durvalumab before Heparinzing my port.. The nurses elected to do B ) and I never had the uncomfortable taste and of feeling flushed. It's a small matter but it made a difference to me. 
 

Congrats on getting this curative train off the platform. Polly should be joining you soon. I believe she's still waiting for CatScan results.

Take good care Grahame, So happy you have started. DFK

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Grahame,

Forgot to ask.
 

Here in U.S. the standard of care for Durvalumab after concurrent chemo and radiation with no progression is one year/26 doses.

You will be receiving two years/52 doses as maintenance? I know only of one other person who received two years of Durvalumab but she was in a clinical trial for two years and only received a total of 26 doses over the two years. She received her last Durvalumab in 2018 and today shows NED, No Evidence of Disease.
 

Thank you, DFK

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Hi DFK

12 months was my understanding from the Pacific trial. I saw oncologist Monday and was surprised with his description 24 months. We will see what eventuates. Just happy to have been granted access and that it gives me a greater chance of beating this thing. Remain positive anyway

grahame

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Hi DFK 

No port as yet. Was offered if my peripheral veins don’t hold up. Flush was at initiation. They gave  me small flush before start then 20 ml line clear then 50 ml saline post infusion flush over 10 minutes through pump. Feel fine now after infusion 

grahame

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Thank you for your understanding of Durvalumab duration. 
 

I am impressed with your nurses protocol in starting and ending your Durvalumab....exactly how it should be done with a peripheral line. I elected to have a port, my veins are tiny and I'm squeamish with needles. The port has worked out very well for me for lab draws and infusions. 
 

You've had a busy and monumental day. Rest well my friend and bask in the good fortune we are afforded with this miracle Durvalumab drug.
 

All the best, DFK

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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 
 

 

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Sweet and restful dreams Barb, you've had a long day......DFK😴

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Grahame,

Great that you're keeping a journal of how you're feeling. Not so great that you definitely noticed muscle aches and fatigue. I do believe there is a crossover of the after effects of chemo/radiation and the beginning effects of Durvalumab. There was for me.

I think you're awesome that you had a full day, got a totally new drug swimming in your system AND was still able to take the dogs walking. 

You sound like you are going to do just swimmingly fine. Enjoy your two week break and keep us updated. Fatigue and joint/muscle aches are the primary side effects of Durvalumab. Very annoying but for me, not hobbling. I combated my fatigue and muscle aches and pains with walking and bike riding every other day. It wasn't always easy but I bought into the philosophy, let the drugs take care of the cancer, my job was to take care of my body.

Take Care, DFK

 

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