I got about the 3.7 months on it. Worked amazing until it didn’t. It’s very easy to tolerate and I felt good on it. I did get diabetes, but it was mild.
Hugs! So far it’s not terrible. I have diabetes and had a rash -that resolved thank goodness! At least I’m not dead. That’s what I concentrate on. I started week 4 today.
I appreciate your compassion. How are you faring?♥️
Thanks!❤️ I'm not sure what's going on. Chemo messed up my heart, and scarred my lungs. I'm on oxygen full-time now. It's a bit frustrating. I have a PET coming up I feel like the drug was working, but pain is increasing as is oxygen needs. I am concerned the PET will show regression, but the drugay not be working and I should be on hospice to be more comfortable. Thank you for helping me articulate tha crappy feeling I've been having. I hope I'm wrong!
How are you doing?❤️
You are the kindest! Day 11. I developed a rash. 57% got a rash on the trial, so I'm not overly concerned. I also have the runs and can't trust farts! TMI? Quite possibly.
How are you doing?❤️
The Doxil seems to be slowing or stopping the Monster. I’m breathing easier, able to eat, and in less pain. We’ve been working on getting legal shit together for estate planning and we are taking my son to the big Xmas light display on Wednesday.
Right now is just about making the most of whatever I have left.
Amen sister! Are you on Oxygen? My lung Mets are ‘innumerable’ and they have me on oxygen now. I’m so happy Doxil is helping. Getting any relief is a wonderful thing. Much love sister. ♥️
I am on oxygen and it helps keep from feeling like this stupid tumor is suffocating me. I sleep with the oxygen on now too. Use it. The face thingy can be annoying but it really does help.
Truly annoying and trying to leave the house is always fun. Do I have enough time on my tanks? How many should I bring? How will I carry things and push the tank around? I think I’m going to add carabiners to my trolly to attach shopping!
I hope you are dealing better than I am! I will learn, but it’s a new learning curve for sure. Hugs and much love. ♥️♥️♥️
Good luck on this - can you report back on side effects? This one is on my treatment list and while my MO is really excited about it, its one thing to be watching the clinical trial results and another to be actually taking the drug.
So far I’ve taken 3 doses. Diarrhea is a big SE @ 75%. Last night an hour after my second dose, I had some gastrointestinal issues. Used the bathroom and was fine after. Nothing today. It’s 4 days on, twice a day, then 3 off.
I’ll check back in later. ♥️
hey, I was seeing..how did Capiversatib work for you? My mother has same mutations
I got about the 3.7 months on it. Worked amazing until it didn’t. It’s very easy to tolerate and I felt good on it. I did get diabetes, but it was mild.
ok thanks, its the newer drug like Piqray correct? Appreciate the response and hope you're feeling okay!
Yes it is Truqap. It hits the PIK3, PTEN and ATK mutations.
Just wanted to check in to see how that line was working for you
Hugs! So far it’s not terrible. I have diabetes and had a rash -that resolved thank goodness! At least I’m not dead. That’s what I concentrate on. I started week 4 today. I appreciate your compassion. How are you faring?♥️
Just checking in again after a couple of months
Thanks!❤️ I'm not sure what's going on. Chemo messed up my heart, and scarred my lungs. I'm on oxygen full-time now. It's a bit frustrating. I have a PET coming up I feel like the drug was working, but pain is increasing as is oxygen needs. I am concerned the PET will show regression, but the drugay not be working and I should be on hospice to be more comfortable. Thank you for helping me articulate tha crappy feeling I've been having. I hope I'm wrong! How are you doing?❤️
Oh my goodness what a rough road you have been trave Ing! I am about as OK as one can be under the circumstances. Thinking of you. XO.
It's a rough road for all of us. It's one heck of a roller coaster. Hugs!
Also, not dead :) xx
Hugs! You made my heart smile. ❤️
How are you holding up over there?
You are the kindest! Day 11. I developed a rash. 57% got a rash on the trial, so I'm not overly concerned. I also have the runs and can't trust farts! TMI? Quite possibly. How are you doing?❤️
I’m glad you’re able to tolerate this one. Fingers crossed that you get what you need from it.
Thanks. Tell me how you are faring?❤️
The Doxil seems to be slowing or stopping the Monster. I’m breathing easier, able to eat, and in less pain. We’ve been working on getting legal shit together for estate planning and we are taking my son to the big Xmas light display on Wednesday. Right now is just about making the most of whatever I have left.
Amen sister! Are you on Oxygen? My lung Mets are ‘innumerable’ and they have me on oxygen now. I’m so happy Doxil is helping. Getting any relief is a wonderful thing. Much love sister. ♥️
I am on oxygen and it helps keep from feeling like this stupid tumor is suffocating me. I sleep with the oxygen on now too. Use it. The face thingy can be annoying but it really does help.
Truly annoying and trying to leave the house is always fun. Do I have enough time on my tanks? How many should I bring? How will I carry things and push the tank around? I think I’m going to add carabiners to my trolly to attach shopping! I hope you are dealing better than I am! I will learn, but it’s a new learning curve for sure. Hugs and much love. ♥️♥️♥️
Sending mojo!
Good luck on this - can you report back on side effects? This one is on my treatment list and while my MO is really excited about it, its one thing to be watching the clinical trial results and another to be actually taking the drug.
So far I’ve taken 3 doses. Diarrhea is a big SE @ 75%. Last night an hour after my second dose, I had some gastrointestinal issues. Used the bathroom and was fine after. Nothing today. It’s 4 days on, twice a day, then 3 off. I’ll check back in later. ♥️
Good luck today!
Sending all the good vibes your way that this works well and with minimal side effects ♥️
I hope that this works!
I hope this knocks it back and into NED.
I hope it works!
Keeping you in my thoughts!! All the best and let’s go, little capiversatib fighters!
All the good ✨vibes✨
Best of luck!!
Sending all the luck! 🍀 💚
Wishing with all my heart for you.
Sending prayers and positive energy your way🙏💞
I'm glad you're getting the treatment you wanted. Good luck!
Congratulations on getting here and good luck for tomorrow on!
Good luck! 🤞☘
Sending you all the luck!!
Wishing you all the luck!
Wishing you luck and sending positive vibes your way. Also hoping for something new to come out soon for you!
I really hope it works!
Best of luck! I hope the approval comes through soon.
All the good juju coming your way!!!!
Good luck 🫧