Lindsay

Good Morning Durva Club! It seems we have a lot to celebrate! Congrats SillyCat on completing your Durva, I hope your scans come back excellent, please update us once they are back!!! I just made it to the halfway point, and I'm so excited, it seems to have gone a lot faster than I anticipated. Mind you, I'm only going once a month, so I don't feel my life has been THAT interrupted. (Thanks COVID) I'm also happy to report that I've had very minimal side effects which has also been a blessing, I'm hoping these next 6 months don't change that. I'm curious what the next steps have been for some of you after you've completed treatment. I've talked with my onc about it, and it seems that it depends on how much of the tumor is gone/dead. I'd love to hear some real life stories of what to expect next.

Hi AngelL First off, I'm sorry that you're now part of this club. Secondly, I echo your sentiments of not being able to find anyone our age-ish going through this. I'm 32, and was diagnosed with Stage 3B adenocarcinoma at the end of last year. I've been through radiation, chemo, and started my immunotherapy at the beginning of April. It's hard looking at the stats of this disease, they're dire, but remember we're different. We have age on our side, or at least that's what I like to think. I stumbled across Lungevity during one of my MANY google searches on what my chances were to beat this thing. I found this article https://lungevity.org/news-blogs/blogs/10-steps-to-surviving-lung-cancer-from-survivor and for some reason it really struck me. I keep it on my phone as a constant reminder that I can only do so much, and constant worry isn't going to help. I also like to check in on the groups here with people are going through the same treatment as me. It gives me hope to hear their stories, one way or another we are going to be a statistic in all this, why not think that we'll be the lucky ones who make it? It's super scary, I know, but there is a whole group of supporters here who can be an ear to cry to, a place of hope, and most importantly connection to someone who understands exactly what you're going through.

Congrats to all of you guys. I love reading all these positive stories!! It really gives me hope! Tomorrow is treatment day for me, I’ve lost count/it’s too much to do the math on what treatment I’m on with the switch to monthly! Lol I think this is treatment 5 of my double dose?! either way doing well, no real side effects aside from a sour stomach in the morning. 🙈

Hey all! I hope everyone is doing well. I had a question about side effects, wondering if anyone experienced these. I find about a week or so after treatment I get light headed often and have to remember to ground myself before standing up too quickly. Anyone else? I’ve also noticed that I bruise super easily now. None of them hurt, but my legs look like I’m a 4 year old who’s been climbing trees and running around all day!

I'm currently going through a very similar treatment - chemo/radiation/immunotherapy (durvalumab) I strongly suggest checking out the group on here specifically for those on Durvalumab. I wasn't considered a good candidate for surgery, and so far have show good success on this therapy. After chemo/radiation I was down about 40% and I just had my first scan after starting Durvy and I'm down again! I started at 5cm and am now 1.8cm with 9 months to go on treatment. My team has always talked about curative intent and I'm going with what they are saying. Trust me, googling the stats that are our there are depressing to say the least, but immunotherapy is relatively new in the lung cancer world, and there are lots of great results coming from it. There's a great post on here that I came across that actually lead me to the forums: https://lungevity.org/news-blogs/blogs/10-steps-to-surviving-lung-cancer-from-survivor. It really put things into perspective for me. All the best to your mom, she's luck to have you looking out for her and finding any helpful information.

Hi Jan, You're certainly in the right place. I found this group a little later in my journey and am so happy you've found us now! As has already been stated there is a lot of information on the internet, but nothing beats talking with people who are going through it with you, or have gone through it already. This is a great place to ask questions, celebrate successes, and find comfort on the hard days. Stay connected, and ask all the questions!

Good morning! I wanted to share my CT results with you guys. This was my first scan since starting treatment in April (I'm getting treatment monthly, so this was #4 for me, which I guess would be #8 if I was going biweekly) and my tumor is down to 1.3 cm. I started at 5 cm back in December 2019 when they found it, chemo and radiation took it down to 3.8 cm, and now I'm down even more. I'm so happy with these results! I had hypothyroidism before starting any of this journey and my levels were jumping all over the place, but seem to be leveling out now which is good. No other side effects to really report aside from a sour stomach in the mornings which my onc is not too concerned with. Treatment #5 is on Thursday, then more waiting!

That’s awesome Barb! I just had my first CT through treatment on Tuesday, and will get my results next week! Grahame, nice to hear you’re seeing results too! I’m doing my treatments every 4 weeks, I go for number 5 next week, which I guess technically would be #10 given I have a double dose. Good luck to you!

haha Yea, it's not the greatest, but it is what it is. I'm hopeful the Durva will do what it needs to. Had good results with chemo and radiation so far so hopefully that momentum keeps going! I've been in the Durva thread, and have been chatting away there too!

Well, blood work was good, and I will do treatment number 4 tomorrow! Got some good information on the change in protocol to 4 weeks, and it sounds like this might be the way forward with some of the studies. Which would be nice to not have to go in all the time and be such a regime! No real side effects yet, when did you all start to notice any?

Thanks everyone! MB - you're right the well wishes are different coming from those in the same boat! I do hit all the criteria for ROS-1, aside from that I also heard it's higher in the Asian population. I did look into Crizotinib and in my province it's not currently funded. This is a link to a news story about it - https://calgary.ctvnews.ca/calgary-cancer-patient-pays-6k-for-month-supply-of-life-prolonging-drug-1.4770670 Right now it's a compassionate care drug. The plan is to follow the Durvalumab study and see how that goes, hopefully I get some good results.

I am so happy I found this group, thank you all for the support and responses to my concerns. I look forward to continuing reading all of your experiences and sharing mine along the way. It’s nice to have the support of those going through or who have gone through the same thing. treatment number 4 will be in a couple weeks for me. Fingers crossed the blood work is good and we can keep going!

Thanks Roseann! so far I’ve been feeling good. I get a bit of a discomfort in the center of my chest but no shortness of breath so they’re not too worried about it. We’ll see how things continue, I’ve only had 3 treatments total - 2 regular and one double. I just hope the math works out that it ends up being the same treatment in the end. I’m sure I’ll be in here lots with questions as things move along. I’m not too sure what to expect side effects wise, it seems like some of you had some and some hand none!

Thank you all! Michelle - thank you for pointing to those groups, I've been enjoying reading some posts in the Durva group, there are so many positive outcomes it's reinvigorated my positivity. I've not heard of Crizotinib so I'm not sure if it's here or not, I'll have to look into it and talk with my Onc. Suzan - It certainly is a punch to the stomach. I was doing well all through chemo and radiation, then when COVID hit and I started immunotherapy I went down a spiral. Finding this forum has really helped, I have wanted to find a group of people to share information with for a long time, I was very happy when my googling lead me here! Best of luck to you in your journey as well we will get through this!

Thanks for the intro! I was looking at this thread earlier and have found lots of great news stories! It’s been helpful to read and gives some hope! I was wondering though if anyone has had a change to their treatment frequency due to COVID? I’m now going for a double dose every 4 weeks.