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JimsMNL

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    ILLINOIS
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  1. She got the first round yesterday. It went well she said, other than they had to slow it down a bit because of it burning. She gets a port before the next round. She is feeling fine so far. I hope that continues. Not much else to report at this time.. I hope you all are doing the best you can.
  2. Gray, Im sorry to hear the news of your aunt. My MnL was just diag'd also. We just try and do what we can for her and carry on as normally as possible. I wish you both the best.
  3. So she is starting the Carbo,Ali,Key trio on Tues. Her Onc sez we gonna hit it hard. Not sure what that means, but i guess. Only gonna do 4 rounds of chemo to start, with a PET in there somewhere. Her PDL1 level was >50%, so i hope Key will rock it out with the help of that. They are gonna put in a port after the first round is complete. I was suprised that the Onc or the staff didn't press the nutritional needs part at all. She's getting a bucket of prescribed vitamins and such, but no talk of her lifestyle changes. Seems odd to me. Anywho, you all have a great afternoon and i will follow up.
  4. She has first appt with new Onc. tomorrow that will be giving her the chemo. It looks like its gonna be Carbo,Alitma,Keytruda combo. We think anyhow. My wife is fearful on how this is going to knock her down. She was kinda on and off sickly before cancer came in the pic, so im hopeful she will get in the game here. She thought the melatonin they gave her was for her blood pressure, so im semi optimistic this is gonna go well. Was told by the Onc. at U of I that her PDL1 levels are high, so i hope thats a plus, not sure the number yet, trying to find out. IMO she needs to make some big lifestyle changes, and im not sure that will happen. And i dont like seeing my wife being taken advantage of. Thats all i will say on that. Let ya'll know more later on. Have a good day everyone.
  5. MnL is home. Tumor shrank 1cm with the steroids. Scan looked good. I think MnL is on a steroid high and not thinking clearly and has my wife pissed off with demands. I will fill in the blanks tomorrow. Crazy shi_. Have a good night all.✌
  6. These are marked for her as "Potentially Relevant Targeted Trails" Her "Relevant Biomarkers" are the TP53 and it included the variant Q331H in the explanation, if that matters i guess. https://clinicaltrials.gov/ct2/show/NCT04293094 https://www.aprea.com/our-pipeline/
  7. You did it before, you can do it again. 🙂 I wish you the best.
  8. So, MNL is still in U of Iowa on a holding pattern. Breathing is MUCH better with the help of the steroids. They were going to rescan today, but pushed it till Wed. Still no start date on chemo, but looking likely to be soon. She is in very good spirits. Maybe a little steroid happiness😁 Anyhow, the cancer mutation results showed TP53 w/Q331H variant. Looks like there is 3 clinical trials going with that right now, so will look into those. No RNA mutants to speak of. Thats about all i got for now. Hope everyones doing as well as can be.✌️
  9. Thanks. I will start a new thread and let you all know how it goes. Thank you everyone for the welcomes and answers.
  10. I agree, and feel, as well as the Doc's do, that she will be ok without the stent right now. Just want the best outcome for everyone involved and you start to second guess. Esp. when all this info is coming in hot and heavy. A lot to dissect, and not much time to do it. So it feels anyhow.
  11. Her tumor is right were the tube splits to each lung. Not a good spot i guess. I dont know whether to push for the stent now or not. Confusing stuff.
  12. Yes on the triplet. They are now in a wait and see. The steroids are reducing the swelling enough for good breathing. They are going to hold the weekend and see what the tumor does size wise. They kinda got her, and everyone really, freaked out with, if the breathing worsens then its a breathing machine for a few days to try and put in a stent. Holy smokes. I say stent now wile the stentings good, but i dont wanna add to the confusion/anxiety of the situation. Aaaahhhhh.............
  13. I seen on other posts of what you all call a "triplet". That was the plan until the breathing got worse.
  14. Bio marker test is still on going. I hope there is a chance at a targeted therapy.
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