Wishing you the best of luck with this. I can only imagine the shock especially after showing such a good response to the drug, you and others. This could have been the cure to this cancer and no money to make it happen is just a terrible thought. Really makes you wonder how many cures there are out there that never come to light because of money.
My heart is so broken for you 💔. Let's hope and pray for a good outcome on staying on the drug with less travel, and that it continues to work! Can't wait to see you soon! Giving you a big hug!🤗
What an awful shock. And the irony. Finally a drug works well. Yes, it’s understandable that a pharma company has to be financially responsible, like all of us, but it’s just not a cool decision given your response to the drug. Basically somehow one person HAS to matter. Statistics and budgets are abstractions of data. The gap between who we are and how we live and how we are bought, sold and traded as data by corporations has to change. I understand it’s no-one’s actual fault, there’s no evil genius behind the scenes, and maybe that will make it easier to make changes down the line.
Honestly I have 0 clue how you kept your cool during the fire drills. Hospital fire drills are not quiet !! Me with my cptsd I’d be having a toddler meltdown at that point. Sucks I am sorry
@@MrsJoJoJones I couldn’t tell one bit. You handled that like a BOSS! You are a hella lot stronger than me. Not a ruffled feather 🪶… Bump in the road just like the fire drills… It’s all “noise” trying to distract you I’m not going anywhere 🫶🏻 ❤️
That does suck Jo 🥹. With your great response, I wonder if the drug company would consider supplying the drug for what they call ‘compassionate use’ if they have enough supply for a while… just a thought. It’s all the clinical trial requirements that cost the money, probably not the actual drug so much. Also, hoping there’s another equivalent drug out there that’s been developed in the meantime. Not a fun trip indeed. When that fire alarm went off… oh lordy did I feel so bad for you Jo. It’s not even Mercury retrograde! It’s Pluto retrograde tho’ 😜. Your doctor sounds lovely and the single patient IND sounds promising. I wrote the compassionate use stuff before I heard him say it. Fingers crossed it works out in the way you hope Jo 🤞🏻. Xx
This is NOT over !!!
F%#?!
Wishing you the best of luck with this. I can only imagine the shock especially after showing such a good response to the drug, you and others. This could have been the cure to this cancer and no money to make it happen is just a terrible thought. Really makes you wonder how many cures there are out there that never come to light because of money.
Willamette would be rad. I hope that works out at least. ❤❤❤
AMEN Agree🙌
So sorry to hear that bad news, must be devastating to deal with. Can’t really believe it ❤
My heart is so broken for you 💔. Let's hope and pray for a good outcome on staying on the drug with less travel, and that it continues to work! Can't wait to see you soon! Giving you a big hug!🤗
I cant wait to see you too!! I miss you.
@@MrsJoJoJones 😘soon!
Stress on your body and stress on you mentally. You are an amazing, amazing woman!
Hi welcome to my home its just stress! I live here! Actually this week proved that ill be a bit stress free for a little bit 🙃
What an awful shock. And the irony. Finally a drug works well. Yes, it’s understandable that a pharma company has to be financially responsible, like all of us, but it’s just not a cool decision given your response to the drug. Basically somehow one person HAS to matter. Statistics and budgets are abstractions of data. The gap between who we are and how we live and how we are bought, sold and traded as data by corporations has to change. I understand it’s no-one’s actual fault, there’s no evil genius behind the scenes, and maybe that will make it easier to make changes down the line.
Honestly I have 0 clue how you kept your cool during the fire drills.
Hospital fire drills are not quiet !!
Me with my cptsd I’d be having a toddler meltdown at that point.
Sucks I am sorry
I was close girl. I was close. 😅
@@MrsJoJoJones I couldn’t tell one bit. You handled that like a BOSS!
You are a hella lot stronger than me.
Not a ruffled feather 🪶…
Bump in the road just like the fire drills…
It’s all “noise” trying to distract you
I’m not going anywhere 🫶🏻
❤️
So sad they pulled something that works 😟
Seriously. 😒
Hej gurl
That does suck Jo 🥹. With your great response, I wonder if the drug company would consider supplying the drug for what they call ‘compassionate use’ if they have enough supply for a while… just a thought. It’s all the clinical trial requirements that cost the money, probably not the actual drug so much. Also, hoping there’s another equivalent drug out there that’s been developed in the meantime.
Not a fun trip indeed. When that fire alarm went off… oh lordy did I feel so bad for you Jo. It’s not even Mercury retrograde! It’s Pluto retrograde tho’ 😜.
Your doctor sounds lovely and the single patient IND sounds promising. I wrote the compassionate use stuff before I heard him say it.
Fingers crossed it works out in the way you hope Jo 🤞🏻. Xx
Haha i had to laugh about the fire alarm too or else id cry 😅😅