Hi Everybody....
Thought I'd start a new thread cuz the other one is getting too long.... 
. After my 4th infusion of Keytruda, I went on a week long jaunt with girlfriends to the Oregon Coast....felt great the whole trip! I wish I trusted a drug that doesn't make me suffer....preferably just a little suffering, like tired for 3 days, but so far all I get is itchy hands. I'm scheduled for my 5th infusion on the 18th....ah, but not before the dreaded scan which I have on the 11th. Next Monday....4 days....96 hours.....but who's counting? I've spent a lot of energy separating what's important to me, and dumping the things that aren't.....but a good scan is one of those things I can't shake off my important list...LOL.
Anyway...we'll find out if the Keytruda is working, no change is as good as shrinkage....it's hard to tell by just feeling (either with my fingers or judging from inside out)....I've been breathing so much smoke for so long, that a headache is part of the day, and feeling like someone is sitting on my chest is a 24/7 thing. BUT....I'm energetic, and things don't feel different than they did 3 months ago, so that's positive.
I tend to get gabby when I'm nervous....can you tell? But Matt....I'm not ceiling fan nervous......yet. And I'm not letting my mind drift into the "what if's"....that took a lot of self-training!!
p
Comments
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update on Larry
My husband is down to 5 rads left. He was supposed to have his last infusion yesterday but they said they were out of meds. They will call him when they get it in and he will have to go in for the final infusion. Docs said that it has been working and that they can tell it has shrunk, God willing it is actually gone. We wont go for PET intill mid November. He is down 57 pounds and doesnt have a lot of energy,but is drinking smoothies daily that are loaded with fruit and protein powder with high calorie for building mass. He is doing great on water intake, no issues there. Only thing that is really bad is the mucositis. He has that build up which is a constant battle. We do the water/soda/salt mix 5 times a day and also episel from the doctor works only briefly to dislodge the mucos. We will be done completely by Wednesday, and he can start healing. Its been such a hard road, I hope the next few weeks will be about the same and then we can start to recover.
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Happy thoughts
Sending happy thoughts your way! We just finished a phase 1 clinical trial and it was unsuccessful. Started a new one yesterday, primer dose given, so far so good, they will sock it to him next week. The good thing is even if the clinical trial did not work the progression is slow, it's all about buying more time. There are so many clinical trials going on right now. We are looking at one at UCSF and there are several in Los Angeles going on. Cutting edge science let's hope all of our hard work produces results and also saves some lives! Keep on keepin on Phrannie!
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My husband is,beginning weeklarrydsparks said:update on Larry
My husband is down to 5 rads left. He was supposed to have his last infusion yesterday but they said they were out of meds. They will call him when they get it in and he will have to go in for the final infusion. Docs said that it has been working and that they can tell it has shrunk, God willing it is actually gone. We wont go for PET intill mid November. He is down 57 pounds and doesnt have a lot of energy,but is drinking smoothies daily that are loaded with fruit and protein powder with high calorie for building mass. He is doing great on water intake, no issues there. Only thing that is really bad is the mucositis. He has that build up which is a constant battle. We do the water/soda/salt mix 5 times a day and also episel from the doctor works only briefly to dislodge the mucos. We will be done completely by Wednesday, and he can start healing. Its been such a hard road, I hope the next few weeks will be about the same and then we can start to recover.
My husband is,beginning week 4 of 6 of radiation for HPV related tongue and throat cancer. The thick mucous is becoming an issue. He complains that he,can't breathe and that it is his lungs that are affected. I'm telling him it's tge phlegm and mucous but it's not coming from his lungs. Am I wrong? He thinks so. Thank you.
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congestionduster said:My husband is,beginning week
My husband is,beginning week 4 of 6 of radiation for HPV related tongue and throat cancer. The thick mucous is becoming an issue. He complains that he,can't breathe and that it is his lungs that are affected. I'm telling him it's tge phlegm and mucous but it's not coming from his lungs. Am I wrong? He thinks so. Thank you.
My husband complained of similar problems. He was concerned the congestion was coming from his lungs. I would consult your health team. My husband's team reassured him it was stemming from his throat and not his lungs.
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Phrannie
I hope all is well with you. I am pulling for you. You are such a wealth of information for this forum.
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Well......HECK !
I really hate to type this out, but got to be a big boy. I started one week before Phrannie on Keytruda (June 19th), and had my 4 infusions then on to have my PET scan. Twas so looking forward to know of some sort of positive change in the Melanoma tumor. Being that Keytruda was designed for recurrant Melanoma, I couldn't wait to hear the results of the PET. Oncologist walked in and said I would not be on it anymore. After 15 weeks of being in the treatment, my tumor had doubled in size ( from 2.5 cm to 5.0 ). Needless to say, my wife and I were in shock. The new protocol will be Yervoy plus Opdivo for I don't know how long. Possibly harsher side effects, but after being through Cisplatin and Radiation 9 years ago for left Tonsil and the misery that brought on, I should know about harsher side effects. So.......I start it next Thursday morning, and will go from there. I REALLY HOPE your outlook works out better. I don't know you, but you are in my thoughts.
Larry
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Man, that sucks!
So sorry to hear about the trial not working out but trilled to hear there is a new protocol to trial. Fortunately, we are blessed to have these new options and we know there is great hope the efficacy grows as more is learned and therapies are refined. Best to you.
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Phrannie, I came by just to
Phrannie, I came by just to find out how you were doing. Hope you get good news. I remember you helping me when I was going through treatment. Thanks so much. I am now an official volunteer for MDA over the phone, and once a week I am working as a volunteer in the infusion room at my local cancer hospital. Felt that bringing others joy is the least I could do. Take care.
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