Roz Posted April 3, 2019 Share Posted April 3, 2019 In February, I went to see the broadway musical, The Band's Visit. The lyrics to one of the songs continues to run through my head. You will all understand why, so I'm posting the lyrics here. The Band's Visit the Musical - Waiting Lyrics Waiting. What's new here? You're waiting, I'm waiting 'Cause that's what we do here Same as we do every day For something, I don't know, to happen No, just something different to happen Just waiting for something to change Just a change ...: Sometimes it feels like we're moving in a circle Around and around with the same scenery going by But no one's complaining We're experts at waiting Time's like a river sometimes Time's like an ocean The sofa is my boat And I'm just drifting right along Time is like syrup (Just waiting for something) And I'm the bug stuck (To happen for) In the syrup (Anything to happen) Just trying to find out (Waiting to find out) What I'm doing wrong (What I'm doing wrong)You know what I think There's two kinds of waiting There's the kind where you're expecting something new Or even strange But this kind of waiting, you keep looking off out into the distance Even though you know the view is never going to change You wait.... Waiting, for something For anything to happen Just waiting for anything to Wait... Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 20, 2019 Share Posted May 20, 2019 Thinking of you Ro this week! Hope the clinical trial is a smash hit. We appreciate your trailblazer approach. Hold on tight to your hope! Michelle Link to comment Share on other sites More sharing options...
Roz Posted May 21, 2019 Author Share Posted May 21, 2019 Thanks Michelle! They called to say that due to a paperwork glitch I won't begin until tomorrow. So, I'm waiting, as usual! I'll try to update on how it's going once I begin. Treatment (after tomorrow) will be every Tuesday and then I go back in on some Weds for more labs. It's combo-Personal Cancer Vaccine + Tecentriq! Best, Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 21, 2019 Share Posted May 21, 2019 This sounds like a really exciting trial. I’m hoping the results are successful and what is learned can be applied to the other “mutants”. Spool up your Bellaruth CD. We need those nasty little cells to die. Thanks for paving the way forward for us! Michelle Link to comment Share on other sites More sharing options...
Tom Galli Posted May 21, 2019 Share Posted May 21, 2019 Roz, Sorry for the delay but I hear anticipation kills cancer cells! Anticipate NED.... Stay the course. Tom Link to comment Share on other sites More sharing options...
Roz Posted May 23, 2019 Author Share Posted May 23, 2019 One treatment down-Seven to go! It was an eleven hour day but now I understand why they make you wait 6 hours after the infusion. Apparently the side effects kick in about 4 hours after the infusions, which is what happened with me. Luckily, it all got under control with additional drugs and I was allowed to go home. I'm anticipating this may be my body's response each time, but at least now I know what to expect. Being on a clinical trial that is Phase Ib means that they are learning every step of the way. As Tom so eloquently said, I'm anticipating that this kills those cancer cells and makes them stay away!! I'll keep updating! Thanks to everyone who sent well wishes! Best to all, Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 23, 2019 Share Posted May 23, 2019 Wow Ro! You’re an Iron Lady. Thanks for keeping us updated- it’s very interesting. What type of side effects did you experience? Let us know how you’re doing a day or two later. All my “mutant” friends are hoping for a great outcome. Link to comment Share on other sites More sharing options...
BridgetO Posted May 24, 2019 Share Posted May 24, 2019 I'm really interested in how you're doing as well as bieng interested in clinical trials generlally. Thnks for keeping us posted Link to comment Share on other sites More sharing options...
Tom Galli Posted May 24, 2019 Share Posted May 24, 2019 Roz, I think I can hear those slimy cancer cells screaming from the immunotherapy assault. Stay the course. Tom Link to comment Share on other sites More sharing options...
Roz Posted May 24, 2019 Author Share Posted May 24, 2019 Tom, That would be totally amazing!! I sure hope you have accurate hearing! Ro Link to comment Share on other sites More sharing options...
LouT Posted May 25, 2019 Share Posted May 25, 2019 Roz You're one brave lady and I'll keep you in my thoughts and prayers. As others are saying, you're doing a great thing and I can't wait too see positive results for you. Lou Link to comment Share on other sites More sharing options...
Roz Posted May 25, 2019 Author Share Posted May 25, 2019 Thanks everyone! I appreciate it!! Ro Link to comment Share on other sites More sharing options...
Susan Cornett Posted May 25, 2019 Share Posted May 25, 2019 Go Roz! Link to comment Share on other sites More sharing options...
Roz Posted May 29, 2019 Author Share Posted May 29, 2019 Side effects update: since they are now pre-treating for some of the known side effects in advance, it seems better. When I get home, I run a fever and just take Tylenol. Usually there is extreme fatigue the day after and then just general fatigue the second day. Mainly, remembering to take breaks and to not overdo it seems to help. I think fatigue is related to many factors but I've heard from others that being tired is quite common. I'll keep updating!! I would say the hardest part is that you have to wait about 6 hours after the infusions for side effects. So you are basically at the hospital for 10-11 hours, mostly in bed although you are allowed to get up and move around within the area. It's definitely hard for someone as active as I am, and with both arms having IV's coming out of them, coloring isn't an option. You feel too tired to read...Anyone have any other ideas for ways to entertain myself, other than tv, or watching a movie on my laptop, I am open to suggestions. Best to all, Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 30, 2019 Share Posted May 30, 2019 Hey Ro- I get that type of fatigue on my inhibitor. Some days reading the newspaper is too tiring and I can’t focus. When I’m that tired I put in my meditation CDs or I listen to my “Insight Timer” free app for 30 minutes. After The meditation I feel a bit better. The breathing exercises from Dr Weill 3-7-8 sometimes works. Keep us posted! Link to comment Share on other sites More sharing options...
Roz Posted May 30, 2019 Author Share Posted May 30, 2019 Rower Michelle, Yes, I use the insight timer at night. There are a few very relaxing meditations on there. I have gotten into some basic yoga that works on breathing and opening up the spine (since that's an area that I need to focus on post surgeries)...I think the hardest part of the fatigue is that I work all day with children. Weekends are easier...Once school gets out, I think I'll be able to manage the fatigue better...it will look more like treatment day to rest day to beach day...repeat beach day as much as possible!! I think that will do the trick!! Best, Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 31, 2019 Share Posted May 31, 2019 Rinse and repeat those beach days! Sounds lovely! We’re heading to SJI, WA this September- I can not wait! Link to comment Share on other sites More sharing options...
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