LexieCat Posted September 7, 2021 Author Share Posted September 7, 2021 Scans fairly uneventful. They DID use my port without a problem today, though somehow the saline leaked all over the back of my shirt during the scan--apparently one of the tubes had a defect. I remembered to fill out a request to have the image and report sent to my oncologist at Penn. After scans, met up with research nurse for blood draws and QoL questionnaire. She told me Linda has been discharged from the hospital again. I'll see the doc and get results of scans tomorrow. Link to comment Share on other sites More sharing options...
LexieCat Posted September 8, 2021 Author Share Posted September 8, 2021 Heard from Linda's daughter, Jenn, last night and she was NOT discharged--the nurse must not have been aware of the most recent issues. This is the first time I've heard Jenn sound really worried about her mom--she said she could see the concern on our doctor's face when he came to see her yesterday. She's lost weight and doesn't want to do anything but sleep. Link to comment Share on other sites More sharing options...
LexieCat Posted September 8, 2021 Author Share Posted September 8, 2021 Update--Jenn's daughter says her mom is doing much better today--she was sitting in chair eating a bagel. Whew! I'm off to see the doc myself now. I just got an email I have new test results in the portal. I'm resisting looking at them (could be scan report or could be labs from yesterday)--I'd rather get the news from the doc. Fingers crossed! Link to comment Share on other sites More sharing options...
Dona Posted September 8, 2021 Share Posted September 8, 2021 3 hours ago, LexieCat said: Update--Jenn's daughter says her mom is doing much better today--she was sitting in chair eating a bagel. Whew! I'm off to see the doc myself now. I just got an email I have new test results in the portal. I'm resisting 3 hours ago, LexieCat said: Update--Jenn's daughter says her mom is doing much better today--she was sitting in chair eating a bagel. Whew! I'm off to see the doc myself now. I just got an email I have new test results in the portal. I'm resisting looking at them (could be scan report or could be labs from yesterday)--I'd rather get the news from the doc. Fingers crossed! Ilooking at them (could be scan report or could be labs from yesterday)--I'd rather get the news from the doc. Fingers crossed! Lexie, glad Linda perked up enough to snack on a bagel. Let us know about those scan results! Dona Link to comment Share on other sites More sharing options...
LexieCat Posted September 8, 2021 Author Share Posted September 8, 2021 Well, the wisdom of waiting to get results from the doctor was once again proved. The report said disease progression. The doc, OTOH, told me that the radiologist appeared to be misinterpreting some aspects of the scan. Dr. Hong acknowledged the scan wasn't as "clean" as the last one, but he does not believe it shows progression of the cancer. He feels part of what is visible on the scan is pneumonia. He was surprised I didn't have a cough or shortness of breath. He'd spent quite a bit of time on the phone with Iovance discussing Linda's situation and he said he'd do the same with mine. The advantage of that is that they have information related to other patients in this trial, at other institutions. Meantime, he prescribed a 10-day course of antibiotics (Augmentin) in addition to the Bactrim I'm already taking. Hey, that's why this is a trial--they are learning what kinds of effects this treatment may have on patients and how to manage them, among other things. Obviously I would have been happier to have obvious continued response, but hopefully the next scans (in about a month) will be better. Link to comment Share on other sites More sharing options...
Tom Galli Posted September 8, 2021 Share Posted September 8, 2021 Lexie, I do really hope next scan provides clarity and shows a clear path to NED. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 8, 2021 Share Posted September 8, 2021 So it’s watch and wait with horse pills on board. Glad you didn’t peek ahead of time as you know the onc and the radiologist do not often agree. It’s impossible to make a call with pneumonia. Rest & fluids for you… Link to comment Share on other sites More sharing options...
LouT Posted September 8, 2021 Share Posted September 8, 2021 Wow Lexie, that's why I never look at my results anymore. Not because they may be bad, but even when they were good I thought they were bad. Anyway, I hope your doctor gets this pneumonia treated so the next scans can continue to show progress. Michelle is right, those are horse pills. I hate taking antibiotics. Get well soon. Lou Link to comment Share on other sites More sharing options...
Dona Posted September 8, 2021 Share Posted September 8, 2021 2 hours ago, LexieCat said: Well, the wisdom of waiting to get results from the doctor was once again proved. The report said disease progression. The doc, OTOH, told me that the radiologist appeared to be misinterpreting some aspects of the scan. Dr. Hong acknowledged the scan wasn't as "clean" as the last one, but he does not believe it shows progression of the cancer. He feels part of what is visible on the scan is pneumonia. He was surprised I didn't have a cough or shortness of breath. He'd spent quite a bit of time on the phone with Iovance discussing Linda's situation and he said he'd do the same with mine. The advantage of that is that they have information related to other patients in this trial, at other institutions. Meantime, he prescribed a 10-day course of antibiotics (Augmentin) in addition to the Bactrim I'm already taking. Hey, that's why this is a trial--they are learning what kinds of effects this treatment may have on patients and how to manage them, among other things. Obviously I would have been happier to have obvious continued response, but hopefully the next scans (in about a month) will be better. Hey, no progress is good in this case, so take every silver lining, right? So, Lexie he must've thought maybe pneumonia, even without the normal symptoms? I guess that's a "positive " for now? Hang in there! Link to comment Share on other sites More sharing options...
LexieCat Posted September 8, 2021 Author Share Posted September 8, 2021 This doctor isn't an oncologist, he's a surgeon who trained in this TIL therapy as a Fellow at NIH. So I sent my oncologist at Penn a note and told her the gist of what I got from my conversation with the doc. Told her she might want to call him to discuss, as I wasn't sure I'd get everything right. I dunno--it's hard to imagine I have pneumonia with no symptoms, no fever, etc. My temp at my doctor visit today was 96-point-something. BTW, I asked about a third dose of COVID vaccine and he said no problem. Same with flu vaccine. Since I got the Moderna shot and I'm not considered immunocompromised at this point, I will probably wait till the booster for Moderna is approved--should be soon. Meantime I can get my flu shot. I also asked about Shingrix, but was told the anti-viral I'm taking right now protects against that. His recommendation was to wait till I was done with the anti-viral. Link to comment Share on other sites More sharing options...
LouT Posted September 9, 2021 Share Posted September 9, 2021 Smart move to get the oncologist involved. When I first met me wife (more years ago than I'll admit to) she had recovered from pneumonia and months later went through a period of tiredness and such. It turned out that she had a recurrence of the pneumonia because she would never take all of her antibiotics all the way through the prescription. But, other than fatigue, she had no coughing or other symptoms. I'm not saying you have the same, but just that I have seen it before. Lou Link to comment Share on other sites More sharing options...
LexieCat Posted September 10, 2021 Author Share Posted September 10, 2021 I sent a text to my surgeon (Dr. Shersher) about the latest scan, just to update him, since he's been following my progress. He actually took the time to look at the scan and he, too, does not think it shows disease progression. He agreed that the antibiotics and repeat scan in a month was the way to go. He expressed hope that this was just a blip in the road. So for now, that's what I'm hoping. Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 10, 2021 Share Posted September 10, 2021 Hope is the name of our game…. Hang tight! Link to comment Share on other sites More sharing options...
Dona Posted September 10, 2021 Share Posted September 10, 2021 9 minutes ago, Rower Michelle said: Hope is the name of our game…. Hang tight! That's 2 physicians stating no progression! I'll take that anyday. Hoping for a positive scan in a month! Link to comment Share on other sites More sharing options...
LouT Posted September 11, 2021 Share Posted September 11, 2021 Lexie, Crossing all digits for you. Never thought I'd say that, "I hope you have pneumonia.". Lou Link to comment Share on other sites More sharing options...
LexieCat Posted September 25, 2021 Author Share Posted September 25, 2021 I was just updating some health info for my iPhone and I noticed a message from my oncologist at Penn that was sent a few days ago--somehow I missed it. Anyway, I'd told her the most recent scan was being sent to her and that, contrary to the radiology report, Dr. Hong (running the trial) didn't believe it showed disease progression. My oncologist said, "I reviewed the scans from 9/7/21 and agree that this could be due to scarring or inflammation. I will look out for the 10/12 scans." So that's sort of encouraging. Dr. Hong isn't an oncologist, so it's good to have Dr. Marmarelis's take on it. Incidentally, Linda (my buddy in the trial with me) is FINALLY doing better. After consulting with Iovance (research sponsor) Dr. Hong put her on Prednisone. She's at home and feeling MUCH better. Her appetite has returned and she's putting on weight. She had a scan the other day and Dr. Hong called to tell her the cloudiness (they couldn't even see her lungs in the previous scans) was clearing and that the steroid seemed to have done the trick. I think he will wean her off the Prednisone as soon as he can--apparently it can interfere with the immune response the treatment is supposed to enhance. But very relieved she is home and feeling better. She asked for Ellen's number (in NY) so she could call her, now that she finally feels up to the call. Link to comment Share on other sites More sharing options...
LouT Posted September 27, 2021 Share Posted September 27, 2021 Lexie, I guess the waiting game never really ends for us, does it? The news on Linda is looking better as is (maybe) the news on your scans...10/12 just seems so far away...but since you are feeling better I'd take that as good news and wait for the rest. Lou Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 27, 2021 Share Posted September 27, 2021 It sounds like things are moving in the right direction so now we wait (again) until the 12th. How often will your scans occur? Link to comment Share on other sites More sharing options...
LexieCat Posted September 27, 2021 Author Share Posted September 27, 2021 Every 6 weeks or so for the first six months. Then I think it drops back to every three months for the next four and a half years (assuming there's no progression). Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 27, 2021 Share Posted September 27, 2021 That’s interesting, that was the same monitoring protocol I had when the targeted therapy started. There must be some reason for that. It was a big deal to go to every three months. I was offered up a four month schedule but passed as I’d rather know sooner than later if there were any clinical changes. I remember the six weeks went by pretty fast. Link to comment Share on other sites More sharing options...
LexieCat Posted September 27, 2021 Author Share Posted September 27, 2021 Yeah, I'd rather know sooner than later, myself. The only thing that's a pain about getting the scans for me is that I have to go to the main hospital (not the cancer center) for that. And they have the world's most inefficient system. First you have to go to "patient registration"--last time they took me right away, but sometimes I've had to wait nearly half an hour to check in so I can proceed to the radiology department. I have to go a couple of hours early anyway for the dang oral contrast. I finally have a prescription for them to use the port for the IV contrast, but all told I could be there for 2-3 hours. Then I have to pick up my car and go park again at the cancer center and walk a block or so to the lab for the necessary blood draws. It was lots easier getting scans at Penn, but the trial requires that I have the scans done at Cooper. Link to comment Share on other sites More sharing options...
LouT Posted September 27, 2021 Share Posted September 27, 2021 Wow Lexie...inefficient seems a kind word for that system. You wonder if anyone looks at that and considers what it puts patients through. At least they can use the port. I will tell you, that after my multiple kidney surgeries in June (stones) and the IV fiasco at my last scan I'm going to be more militant about getting the best person and also drinking loads of water before the procedure. In your case having the port can really be a blessing for bloodwork. But, I'm guessing that if this trial works out the way we all want it to that the inconvenience will be forgotten. Hang in there. Lou Link to comment Share on other sites More sharing options...
LexieCat Posted October 11, 2021 Author Share Posted October 11, 2021 It's that time again. Scans tomorrow morning, then lab work, and I see the doctor on Wednesday. I'm feeling more trepidation about this round than I have in a while--I'm hoping it shows definite improvement over the last scans. I've developed a bit of a cough over the past few weeks, though it seems more related to post-nasal drip (sinus issues) than my lungs. I've also been kinda down this past week because I had to have one of my cats (yeah, Lexie) put to sleep. I'm actually not that much of a cat person and this hit me harder than I expected. She was 15, so she lived a good long life, but it feels kind of empty without her around. I still have her sister/littermate, who is what my daughter refers to as "aggressively affectionate." My buddy Linda (from the trial) has had her scan schedule thrown off a bit due to her hospitalization and difficulty reading previous scans. So she went for hers today and we will see Dr. Hong at almost the same time on Wednesday. We're hoping to maybe grab lunch--it's supposed to be in the low 70s that day, so maybe we can find someplace to eat outside. She's feeling quite a bit better, though she's still coughing a bit. I'm supposed to show up tomorrow morning by 8:15 to drink the oral contrast and once my scans are done I have to go to the main location in Camden to meet up with the research nurse to get my labs drawn. Good thoughts/vibes appreciated! Link to comment Share on other sites More sharing options...
Judy M2 Posted October 11, 2021 Share Posted October 11, 2021 Good luck and hoping for a positive outcome. You deserve it! So sorry about your cat. I know how hard it is to lose a pet, especially one you've had for so long. 💔 Link to comment Share on other sites More sharing options...
Tom Galli Posted October 12, 2021 Share Posted October 12, 2021 Lexie, I've got my fingers and toes crossed for great scans! And, I'm sending every good vibration I can generate. Funny, just before reading your post, I listened to that Beach Boy's classic. Stay the course. Tom Link to comment Share on other sites More sharing options...
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