Judy M2 Posted June 15, 2021 Share Posted June 15, 2021 Glad you're tolerating your infusions. Hope they stay tolerable. Demerol stops those shakes in their tracks. Good thing they're watching you so closely. Thinking of you! Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 16, 2021 Share Posted June 16, 2021 Never has the term potential taken on such importance. You’re a modern day Wonder Woman! We’re all thinking about you-every day. Link to comment Share on other sites More sharing options...
Tom Galli Posted June 16, 2021 Share Posted June 16, 2021 Wonder Woman indeed! I'm anointing you Airborne Ranger! I really hope things are going well. We are praying for you daily. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted June 16, 2021 Share Posted June 16, 2021 Yay Wonder Woman! I know you can do this! Link to comment Share on other sites More sharing options...
LexieCat Posted June 16, 2021 Author Share Posted June 16, 2021 The depleting/conditioning of my immune system concluded uneventfully. Other than serious fatigue, no real side effects (so far, anyway). Sunday night I was transferred from my room on Pavilion 5 to the Trauma ICU. They have multiple ICUs here, and the ones for COVID or other contagious conditions are elsewhere. For the first day or so I kept griping that ICU is a lot like prison—only you get more freedom in prison (and cooler-looking clothes). The nursing staff (nurse/patient ratio is 1/2 here) have been fantastic. Two nurses (one on Pav 5 and one here) have made Starbucks runs for me. There’s one in the lobby and they wouldn’t let me pay them back. This is a brand new ICU so everything is bright and pretty. The soap dispenser in the bathroom, though, peeled off the adhesive and could not be reattached. But after Dr. Shersher (my lovely surgeon) came to visit me, he walked out and courteously ORDERED it to be fixed NOW. He also ordered them to give me a bottle of hand sanitizer to keep at bedside because of the danger of “cytokine storm.” Of course, anY order from Dr. Shersher is always gentle and courteous, while being insistent. He gets stuff to happen. My new cells were infused Monday. It’s the IL2 that can cause the severe effects they are worried about, so I had a bit of trepidation. There is a bit of IL2 mixed in with the new cells, and after that infusion (3 bags, 30 minutes for each), I did have some mild chills for a bit. Kinda like after my second COVID shot—minus the aches. Getting the IL2 “straight” would prove to be a different story. First infusion of IL2 was Tuesday morning. Everybody had to go over with me yet again all the POTENTIAL risks—some pretty dire. The infusion itself took 30 minutes. About an hour later I felt like I was in the Polar Bear Club. Not only was I chilled to the bone, I was violently shaking all over. They gave me injections (yay port) of Demerol and morphine. The shakes.stopped almost instantly. I vomited twice (an amount equivalent to two spits), and that was it. Second IL2 was that afternoon. Everyone’s impressed and happy about how well I’m doing—hopefully I can make it through all six IL2 infusions. If I can’t, they will stop the IL2 and everything should still work. Link to comment Share on other sites More sharing options...
LexieCat Posted June 16, 2021 Author Share Posted June 16, 2021 On 6/14/2021 at 4:58 AM, TJM said: Curious if the have a target WBC? The nurses tell me they want to see it at 1. Link to comment Share on other sites More sharing options...
LouT Posted June 16, 2021 Share Posted June 16, 2021 Lexie, So glad to hear that any of your side-effects were pretty easily controlled. I hope it keeps up this way all the way through and you are mostly comfortable, even in the "less than" prison environment. Have they discussed when they would expect you to see results? I know you once wrote (or I read somewhere) that some results were seen later than expected. Lou Link to comment Share on other sites More sharing options...
LexieCat Posted June 17, 2021 Author Share Posted June 17, 2021 Not sure what you’re referring to, Lou, about results being later than expected, unless you are thinking of the timeline for FDA approval being pushed back I/e not yet gotten a date for scans. Incidentally, since my last two treatments are tomorrow, I’ll be moving back to the 5th floor (Oncology Unit). Hoping to chat with the other trial participant and give her the important info. I COULD be going home Friday or Saturday—cross your fingers! Link to comment Share on other sites More sharing options...
LouT Posted June 17, 2021 Share Posted June 17, 2021 Lexie, I'll go back through your posts...perhaps I misunderstood, but I thought in one of the studies positive results kicked in later than expected. And my understanding was that this is a treatment normally tried on a different type of cancer and that could be a factor in how quickly it would react. I'll take another look around and see where I got the idea. But, despite that, it's good that you will be going home soon and I'm hoping all good outcomes for you. Lou Link to comment Share on other sites More sharing options...
LexieCat Posted June 17, 2021 Author Share Posted June 17, 2021 Ah, gotcha, no, that’s right. Doc says scans will be monthly at first as we assess whether the treatment is helping. I was disappointed this everting to hear they are pospostponing the final treatment till tomorrow morning. The treatment today went really well—I had the severe shakes for only about 45 minutes, since they did Demerol, Morphine, then Demerol. As usual, it knocked me out for a couple of hours later. But they’re concerned about my respiratory status and so they gav e me Lasix to try to get rid of some of the fluids. Hey, even if I can’t get the last treatment, though, I got the vast majority and missing the last one shouldn’t make a difference. Still, as nice asx everyone here is, I’m looking forward to getting sprung from ICU. Link to comment Share on other sites More sharing options...
Tom Galli Posted June 17, 2021 Share Posted June 17, 2021 Lexie, Great to hear from you and I know our community enjoys your updates but please take it easy. We are all looking forward to you making ICU bail! Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted June 17, 2021 Author Share Posted June 17, 2021 So, they have decided to cancel the final IL2 treatment. They are afraid if they do it, it might push my breathing to the point where I’d have to be intubated—something nobody wants, least of all me. He doesn’t think six treatments are some magic number—at that point, it’s more like something for good measure.. So I’m a teensy disappointed, but I think it’s the right call. It also shows they are more concerned about my swell-being than hitting the high note in the trial protocol. This shouldn’t affect the validity of the study. Link to comment Share on other sites More sharing options...
LouT Posted June 17, 2021 Share Posted June 17, 2021 Lexie, Wow, things move fast in this trial. I sure can understand your wanting to get "sprung" though. I'm pleasantly surprised that you were able to provide so many updates during this time and appreciate hearing them. Have they settled on when you are going home? Lou Link to comment Share on other sites More sharing options...
LexieCat Posted June 17, 2021 Author Share Posted June 17, 2021 Not until my wbc is 1. Link to comment Share on other sites More sharing options...
TJM Posted June 18, 2021 Share Posted June 18, 2021 5 hours ago, LexieCat said: Not until my wbc is 1. Did it get to zero? Just curious. So essentially you have completed the trial? That's really awesome. Just the fact it's so quick is awesome. Focus on the WBC for now. I remember how suspenseful the wait was with my son. Peace Tom Link to comment Share on other sites More sharing options...
LexieCat Posted June 18, 2021 Author Share Posted June 18, 2021 I forget—it didn’t get to zero. Link to comment Share on other sites More sharing options...
LexieCat Posted June 18, 2021 Author Share Posted June 18, 2021 Here’s a longer post from the CaringBridge site: So last night I got word that they were ditching the sixth IL2 treatment. I’ve been having breathing problems and the fear was that if they had the sixth, they would wind up having to intubate me—which NOBODY wants. I think it was absolutely the right call because last night was the roughest/scariest I’ve had since I’ve been here. I was getting plenty of oxygen (levels were 97-98) but I FELT like I couldn’t breathe. There was a lot of phlegm and raspiness and I could barely get 5 words out at a time. I was seriously freaking out a bit. One of the nurses had a great idea, though. The beds here haven a percussion/vibration feature and she asked if I wanted to try that. It was brilliant. The percussion loosened things up a bit and also calmed me down so I could sleep. So even though I got wakened every hour (when it had to be re-set), I finally got some rest. This morning I feel 200 percent better. Coughing easier, breathing easier, able to speak full sentences without pausing. Waiting to see doc now. I’m hoping I can move from ICU to Pavilion 5 soon. My WBC counts have SLOWLY started to increase—today it’s .09 compared to yesterday’s .06. They want it at 1 before they send me home. Just saw two of research docs—they want me to spend one more night in ICU. Probably a good idea. Plan is to move me down to Pavilion 5 tomorrow am. Link to comment Share on other sites More sharing options...
Tom Galli Posted June 18, 2021 Share Posted June 18, 2021 Lexie, Thanks for the update. Sounds like you are getting great medical care and I completely understand your desire for a prompt ICU and hospital release. I'm cheering on your bone marrow to max out in WBC production. Stay the course. Tom Link to comment Share on other sites More sharing options...
TJM Posted June 18, 2021 Share Posted June 18, 2021 Your WBC is like a fish. Your the fisherwomen. Once you get a nibble, the fish will set the hook. You just gotta reel him in Peace and luv Tom Link to comment Share on other sites More sharing options...
Lisa Haines Posted June 18, 2021 Share Posted June 18, 2021 Great to hear your update and that today has you feeling much better! You have been in my thoughts and I had been wondering how things were going. We will all continue to send you lots of positive thoughts and think you are amazing! Hoping each day from this point will be better and better....💜 Link to comment Share on other sites More sharing options...
Tom Galli Posted June 21, 2021 Share Posted June 21, 2021 Yesterday, Lexie moved to a regular room. She is recovering as expected and is on supplemental O2, but her breathing is stable. Her doctors are pleased with her status at this time. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted June 22, 2021 Share Posted June 22, 2021 hi Lexie, I'm glad to hear you're out of ICU. I hope you don't have to go through any more scary stuff! I'm thinking of you every day. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted June 22, 2021 Share Posted June 22, 2021 Thinking of you, Lexie! Link to comment Share on other sites More sharing options...
Cin Posted June 22, 2021 Share Posted June 22, 2021 Just chiming in to say I'm thinking of you and am glad you can breathe easier now. Link to comment Share on other sites More sharing options...
LouT Posted June 22, 2021 Share Posted June 22, 2021 All kinds of good wishes going out to you Lexie. I hope that you are off the supplemental O2 soon and can wait to see positive results from the protocol. Lou Link to comment Share on other sites More sharing options...
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