Babs Posted September 2, 2021 Share Posted September 2, 2021 Update, I’ve been doing a clinical trial for the last 8 weeks and have my first scan next Tuesday. I’m pretty anxious about it and need as many positive thoughts, prayers etc. I can get! I have been tolerating the drug fairly well with the exception of 1 week where they withheld the dose due to some nausea I was having. Big deal! They admitted that they overreacted. I’ll post my results and I hope everybody else is doing well! Babs Link to comment Share on other sites More sharing options...
LexieCat Posted September 2, 2021 Share Posted September 2, 2021 Hey, Babs--best of luck! I'm getting my second set of post-clinical-trial scans the same day as you. My first scans were fantastic--I hope the trend continues. I hope your scans show a good response to your trial, too! I'm actually glad they are cautious with new treatments when it looks like we might be headed for trouble. They are dealing with a lot of unknowns, and nobody wants to injure a patient who might be headed for a problem. Glad your nausea cleared up fast and you were able to get back on course. Fingers crossed for both of us! Link to comment Share on other sites More sharing options...
Babs Posted September 2, 2021 Author Share Posted September 2, 2021 Hi Lexie, You are right as far as them being careful with the side effects. It was just kind of disappointing to not get dosed that 1 week. I have my fingers crossed for both of us next week! Are you still having fatigue? That’s been one of my side effects that is the most annoying. Babs Link to comment Share on other sites More sharing options...
LexieCat Posted September 2, 2021 Share Posted September 2, 2021 My fatigue is improving all the time now. I do get tired if I'm active, but I'm able to be active more, and longer, than I was. Of course, I'm not having any treatment right now. My fatigue is left over from my hospitalization for three weeks with very intense treatment--it was really brutal. But if this works like it's supposed to (and as the initial scan suggests that it's working), this is a one-and-done--no more treatments. That was one of the reasons I went for this particular trial. No more treatments was pretty appealing! I hope your fatigue improves with time. I forget what kind of trial you are on--do you have a link? Link to comment Share on other sites More sharing options...
Babs Posted September 2, 2021 Author Share Posted September 2, 2021 Yes, here is the link. The drug, Enfortumab has already been FDA approved for bladder cancer.. https://clinicaltrials.gov/ct2/show/NCT04225117 Link to comment Share on other sites More sharing options...
LexieCat Posted September 2, 2021 Share Posted September 2, 2021 Pretty cool--I always say, nobody wants to deal with lung cancer, but the science around the treatments is really interesting! It sounds very promising--will keep my fingers crossed and send good vibes for your scans next week! Link to comment Share on other sites More sharing options...
Babs Posted September 2, 2021 Author Share Posted September 2, 2021 Thanks and right back atcha! Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 3, 2021 Share Posted September 3, 2021 I’m crossing everything for both of you next week. No cure for scanxiety, at least none that I’ve really found, just keep moving forward….. Link to comment Share on other sites More sharing options...
LouT Posted September 3, 2021 Share Posted September 3, 2021 Babs, Fingers and toes crossed for your scans to be good. Keep your chin up and stay strong. You can handle this. Lou Link to comment Share on other sites More sharing options...
jack14 Posted September 3, 2021 Share Posted September 3, 2021 My deepest prayers for both of you! I also have a scan, next Friday, and will have to wait it out over the weekend, sigh. I finished my 23rd Keytruda infusion a couple of weeks ago for Stage 4 NSCLC. My oncologist has been doing serial CA19-9 marker tests since we began therapy, even though my cancer is in the upper lobe of my right lung with metastises to three lymph nodes in the left chest and axillary area,and nothing in the abdomen. The marker can be used as an adjunct with other than pancreatic cancer sometimes, like my adenocarcinoma. Anyway it has fluctuated, over the past, up and down by three or four points. However, it took a significant leap last test and went from 68 to 77. Anyway, we are hoping that the cancer hasn't progressed. But if it has, my Oncologist believes that, if my met amplification is over ten, then I may be a good candidtate for Crizotinib.Other than that, chemo or qa trial would be my next lines. Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 3, 2021 Share Posted September 3, 2021 Good luck Jack- your on the good wishes list too! Link to comment Share on other sites More sharing options...
Babs Posted September 4, 2021 Author Share Posted September 4, 2021 Thanks everyone! Jack - Crossing my fingers for you also! I will look forward to good news from all and to be able to report some good news. Link to comment Share on other sites More sharing options...
jack14 Posted September 4, 2021 Share Posted September 4, 2021 Thanks Link to comment Share on other sites More sharing options...
LexieCat Posted September 4, 2021 Share Posted September 4, 2021 Yup, ditto from me--I'll have three sets of fingers crossed (and hope I don't need to sign anything in the meantime). Link to comment Share on other sites More sharing options...
Babs Posted September 8, 2021 Author Share Posted September 8, 2021 We’ll I had my scans. CT and bone scan. Tumor has shrunk by almost 1 cm and no metastasis anywhere! I’m beyond the moon excited since the last few scans before this trial was always “slightly larger”. My DR said technically she will call it stable because unless it’s changed by 30% or more it can’t be considered anything else. I’ll take it. The plan is to continue on this trial and scan again after 2 more cycles. Lexie, do you have any results yet from your scan? I’m thinking about you. Babs Link to comment Share on other sites More sharing options...
Judy M2 Posted September 8, 2021 Share Posted September 8, 2021 Congratulations, Babs! Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 8, 2021 Share Posted September 8, 2021 Great news! Carry on….. Link to comment Share on other sites More sharing options...
LexieCat Posted September 8, 2021 Share Posted September 8, 2021 34 minutes ago, Babs said: Lexie, do you have any results yet from your scan? I’m thinking about you. Yeah, kinda disappointing. Glad I didn't read the report first, which opines that it shows disease progression. My doc disagrees--thinks the radiologist was looking at things wrong. Anyway, there is a cloudy area that wasn't there last time, which my doctor thinks may be some kind of pneumonia. He was surprised I haven't had a cough or other pneumonia-like symptoms. In combination with the difficulties experienced by the other patient in the trial (whose scans are so cloudy they can't see her lungs), he's wondering whether this is an effect of the treatment--maybe autoimmune. In any event, he gave me a short course of additional antibiotics and scheduled the next scan for a month or so from now. Link to comment Share on other sites More sharing options...
Tom Galli Posted September 8, 2021 Share Posted September 8, 2021 Babs, How about that! Tumor shrinking; no progression, simply a wonderful scan. Celebrate and... Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted September 8, 2021 Share Posted September 8, 2021 Oh, geeze, I meant to congratulate you on your results--they are fantastic! Sorry about that--I'm still trying to process the ambiguity of my own scans. I'm super happy for you! Link to comment Share on other sites More sharing options...
LouT Posted September 8, 2021 Share Posted September 8, 2021 Babs, Great news on your scans! I love to hear this and can't wait until the next scan. Lou Link to comment Share on other sites More sharing options...
Babs Posted September 8, 2021 Author Share Posted September 8, 2021 Thanks everyone! Lexie - I’m sorry you didn’t hear something a bit better! I would definitely go with the Doc vs. the radiologist. My Doctor and I talked at great length about pretty much the same thing. She said very seldom does she agree with the Radiologist and small things like maybe you took a bigger breath this time as opposed to the last scan. I hope the next scan shows improvement. I’m rooting for you. Babs Link to comment Share on other sites More sharing options...
BridgetO Posted September 9, 2021 Share Posted September 9, 2021 Babs--great news! Lexie--I'm sorry to hear your results were ambguous. Must be really disappointing after all you've gone through on the trial. When is your next scan? I'll be crossing all fingers and toes for a clearly positive result. Link to comment Share on other sites More sharing options...
catlady91 Posted September 9, 2021 Share Posted September 9, 2021 Great news Babs! It's a sign that the treatment is working. Wishing you all the best and hope that the tumour will keep on shrinking. Lexie sorry to hear about your ambiguous results. My mum's oncologist told her that reading scans can be very difficult and not to stress too much about it. It's easier said than done I know. My mum was told in Feb that the cancer came back based on a PET scan. They then did a CT scan and there was nothing there so a team of doctors and radiologists had a big meeting and they carried out further tests. They confused the inflammation and scar tissue for cancer. So scans can be confusing and hard to read. I'm wishing you all the best Lexie. I know that you're strong and determined. Link to comment Share on other sites More sharing options...
TJM Posted September 10, 2021 Share Posted September 10, 2021 Awesome Babs! Link to comment Share on other sites More sharing options...
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