LexieCat

Hi D iane, sending you a big hug.  I agree with what LexiCat mentioned above.  You are always welcome here.  Your experience as a caregiver is so valuable to caregivers now.  We do have a LUNGevity Legacy Facebook Group for those whose loved ones have passed away from lung cancer: https://www.facebook.com/groups/51580140634/permalink/10165124375825635/
And if you would like to advocate for lung cancer, there are many different ways you can get involved: https://lungevity.org/for-supporters-advocates
Keeping you in my thoughts.

huj123,
I too have NSCLC Adenocarcinoma with an ERBB2 (HER2) Exon 20 mutation.  It is a small subset, so there aren't any targeted drugs approved at this time.  I had a second opinion at MDAnderson and he spoke of Trastuzumab Deruxtecan having very positive results in NSCLC HER2+ patients. It is approved in breast and gastric cancers and is seeking approval in NSCLC.  The trials available now are only 2nd line, but I would be sure to ask her oncologist about it.  I am starting my chemo next week and hopefully will see some relief from the back and hip pain - where my bone mets are - and not too many side effects of the chemo.  Keep fighting.

Everyone's different in terms of side effects--which ones, when, how long they last. It's certainly worth trying to see if relieving the mucous helps. I remember when I was pregnant, the only time I vomited from morning sickness was when I gagged while brushing my teeth, so you might be onto something there. Palliative care might be able to help, too. Be sure to run any OTC meds by your medical team before you take them, just to be on the safe side. Hope you get some relief soon.

Everyone's different in terms of side effects--which ones, when, how long they last. It's certainly worth trying to see if relieving the mucous helps. I remember when I was pregnant, the only time I vomited from morning sickness was when I gagged while brushing my teeth, so you might be onto something there. Palliative care might be able to help, too. Be sure to run any OTC meds by your medical team before you take them, just to be on the safe side. Hope you get some relief soon.

Had a quick question, how long does side effects such as nausea and vomiting last after the initial infusion date? I got my Covid vaccine 4 days ago and I’m still getting hit with nausea and vomiting. Today was only once which is better than the last few days. I kinda blame the mucus as it’s making me gag and I constantly keep spitting it out. 

Ale, have you mentioned these side effects to your oncologist? Mucinex should thin the mucous but they may have something better. Drinking lots of water is helpful too. I'm wondering whether the mucous is actually post-nasal drip. An ENT can look at your throat and determine if it is. Claritin (loratadine) really helps with mine. 
Hope you feel better very soon. You are a real trooper. 

@LexieCatim glad to hear everything is going good for you. I really hope that trial ends up working out so you can kick that baddie out. 
I do have both Zofran and Compazine which I have taken. Zofran doesn’t seem to work as well since everytime I throw up, I have taken the Zofran and it never works. I woke up today better, still a little bit of nausea from the phlegm being stuck in my throat but that’s it. Hopefully the day will be easier to get through today. 

Hey, kiddo,
I was just thinking about you and wondering how you were doing! The side effects from the vaccine should last only a day or so. My aches and chills were just the day after, and the following day it was all gone except for a sore arm (that lasted a couple more). Do you have any anti-nausea meds? (Compazine, Zofran?) Might be worth asking for some--you need to keep your food down. 
I got through the surgery for my trial (piece of cake--I went home the same day with one tiny incision at the base of my neck). They had to get the tissue samples from the lymph nodes--too tricky to get it from the lung tumor. In a couple more weeks (June 2), I go into the hospital for the 2-week process of depleting my immune system and then re-infusing the lymphocytes that will hopefully kick my cancer's butt.
Good to hear from you--keep hangin' in there!

Hey all,
it’s been a minute so I figured I’d give a small update. I’ve gotten through the main course of that virus besides the mucus. It’s gonna stick around for a while longer I know for sure as my pops still coughing it up too. 
I got my 2nd dose of the Covid vaccine and it’s been kicking my butt for the last day. Constant nausea and fatigue all day, it’ll pass I know for sure but the nausea mixes with the mucus and next thing you know my lunch is in the trash.
Next infusion is next week along with my port placement. I’ll give an update along with those two things. Stay strong y’all ❤️

Hey Barb!
It’s a weird anniversary someone outside our circle of friends here would understand so a big hug of congratulations to ya!!! That’s great!  

Exactly one year ago I had my 26th and last Imfinzi infusion. So far so good!!  

See, by the time you actually get your infusion, it will be anticlimactic, lol. You won't even be worried, you'll just be relieved to get started.
Any word yet from your neurosurgeon re the port?
 

Glad to hear you're OK--sounds like something you just gotta ride out. Feel better soon! Try to get some soup in you.
 

Okay, so i left the hospital at 4am. I have a viral infection pretty much, nothing to serious. They prescribed me antibiotics to take care of it. There was some virus or something my Dad brought home and he was a little messed up from it. Then it went to my sister and now to me, I’m okay other wise. Just really congested and coughing up mucus, i had really bad chills too. 

Yes, keep us posted!

Please update when you can.

Weather has been up and down recently. It was 75 degrees yesterday then dropped to low 60s during the night, which is probably why I have a sore throat. I feel as I’m getting side effects from Neulasta, my elbow joints are very achey and it doesn’t hurt too much but it’s noticeable. 
 
Went on my drive and had my fun. Now it’s time to rest, I feel very tired right now. But I also have a lot on my mind. I’ll just be resting and trying to eat something soon.

Day 1 is the day of infusion, so this is actually Day  3. So for me, Day 4 I felt like I was hit with a ton of bricks. Not sick, but exhausted. 
Your experience may be totally different, but that seems to be a typical pattern. If that happens, I wouldn't expect it to last more than 2-3 days at most. I doubt your sore throat has anything to do with chemo.
Glad you got to go out and have some fun!

About  Neulasta:  About 10 years ago I had Neupogen during treatment for a non-lung cancer. After each infusion I had to give myself daily shots for several days  Neupogen is a long-acting form of Neulasta, so you only have to have one shot after each infusion. Thte side effects of the two meds are pretty much the same, since they're the same durg.  The most common side effect is bone pain. I had  NO side effects at all. There  is some evidence that Neupogen is a little less likely to cause bone pain, but I don't know anybofy else that's had Neupogen.  I think that it's not given much, maybe they think iit's too hard for people to give shots to themselves. I guess they figured I was a tough old bird and could manage it.
One more thing. The reason Neupogen ie given is to prevent neutopenia (low neutophis, a type of white blood cell that fights infection.) Witth low neutrophils, your can easily get an infection not only  from  bacteria in the environment, but also from the bacteria that normally live on our skin or in our digestive tract. These  infections can become life-threatening quickly . Fever is often the only symptom.  So if you develop fever during chemo, contact your doctor or emergency room immedately. Don''t 'wait until morning". Most people on chemo get this advice but some don't, or don't take it seriously or it gets lost in a bunch of other  nfo.
Fortuately  I got the info. I had neutorpenia and had to go the ER twice. The second time, my neutrophils were zero. I got antibiotics and was okay.

Hi Mike,
Biomarker test can be done from a blood draw.  Durvalumab did not work for me.  I was not tested for PDL1 prior to the infusions.  I had 8 infusions and ended up with a Pleural Effusion.
I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test. 
 
🦅
 
 

Thank you everyone for your very helpful responses. 
I've not had a biomarker. The bronchoscopy was unable to take sufficient sample, I only have one lung, and a needle biopsy was regarded as too risky. 
My oncologist isn't very receptive to complimentary treatments. So I don't feel able to discuss with her. In any event, I have decided to hold fire on THC for the time being.
Kind regards
Mike

This info was in the chemo guides they gave me, the infusion nurses confirmed it, and if you google bodily fluid toxicity after chemo you'll find it. And it does flush out pretty fast, but they said to take precautions the first 48 hours.

Wow the docs never told me about the toxic part, thanks for letting me know @LexieCat! So far it isn’t bad, just a tad bit of heaviness and a slight nausea feeling, but I’ve noticed that mints help with the feeling of it. I plan on eating small portions for now and drinking nothing but water. 

The "heaviness" you feel is, I imagine, the extra fluids that were pumped into your body. Think about it--there was quite a lot of it. Try to drink a lot of fluids (sounds counterintuitive) so your body can start flushing out the drugs. Note that (just in case you weren't told) your bodily fluids (blood, urine) are toxic for 48 hours after infusion. So be careful using the bathroom, wash your hands well, and you might want to wash underwear separately from your other laundry. That's JUST for the first 48 hours. It's very important to remain well-hydrated to avoid kidney problems. My daughter works for Davita Kidney Health (a place that does dialysis services) and she constantly nagged me to drink plenty of water because not doing so during chemo risks kidney failure.
Getting up and moving around is good for preventing edema and flushing out the drugs, too.  Don't force yourself when the fatigue hits, but as long as you feel up to it, try to take walks or do a bit of exercise. 
If you feel restless right now, that's likely the dexamethasone. 
And remember, everyone's pattern and type of side effects can be a bit different. We can share our personal experiences (and those that seem common to others), but don't be too surprised if you feel different. 
But sounds to me like you got through this just fine--it wasn't as bad as you thought, was it?  

I KNEW IT!!!
Congrats, and enjoy a nice, relaxing time in the chair. When I was having chemo, there was a Starbucks attached to the hospital. I used to go grab breakfast and a gigundo cappuccino as a treat after my doctor/NP visit, just before the infusion, and bring it up to eat/drink while I was in the chair.
Remember to go easy on the anti-nausea meds afterward--don't wait till you're vomiting, but wait till you at least feel queasy before you take it. And if you have to take it more than once, be sure to take a little Miralax, to stave off constipation. Otherwise you might wind up miserable and believe me, you don't want/need any more misery.