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.

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!

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!

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?

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!

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.