Rower Michelle Posted August 10, 2021 Share Posted August 10, 2021 So how are you feeling? Any improvement? Link to comment Share on other sites More sharing options...
LexieCat Posted August 10, 2021 Author Share Posted August 10, 2021 A little bit. Walking the line between not moving enough and overdoing it, which seems to set me back. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 10, 2021 Share Posted August 10, 2021 That is a fine line indeed, just keep going! Link to comment Share on other sites More sharing options...
LexieCat Posted August 10, 2021 Author Share Posted August 10, 2021 I got a call this morning from my NP at Penn letting me know I had an elevated TSH level in the labs they drew yesterday. I sent a note to my primary, and she is going to order a complete thyroid workup. Never hurts to check--apparently that can cause fatigue. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 10, 2021 Share Posted August 10, 2021 Definitely, for years Tim’s thyroid disorder went undiagnosed, fatigue was a huge issue but the doctors kept telling him to eat right & exercise. It was the third physician we saw who took one look at the ever growing symptom list to say it’s the thyroid! Little gland can cause big trouble so hopefully this is a tweak to get back in the game. Link to comment Share on other sites More sharing options...
LouT Posted August 11, 2021 Share Posted August 11, 2021 Lexie, Like Michelle I'm glad you are getting tested I knew someone with that issue and what a difference after treatment. She was like a new woman. First, I hope there is nothing wrong, but if there is I understand that treatment can be very effective. Please let us know. Lou Link to comment Share on other sites More sharing options...
LexieCat Posted August 17, 2021 Author Share Posted August 17, 2021 I'm finally starting to feel a little better/stronger. It's been tricky to do enough moving around to gain strength without overdoing it--which seemed to set me back every time. The last few trips to the grocery store have been much more doable--I didn't feel like I was gonna keel while checking out. My buddy Linda, though, is back in the hospital with pneumonia--the meds they gave her haven't helped. Her daughter tells me the doc is running some tests and bringing in some infectious disease docs to try to get a handle on it. So send her some good vibes if you've got any to spare. I also got a call yesterday from Ellen in NY. Apparently she had a rough time with the first two days of chemo, but then felt better the last three days. Today she receives her TILs and will then get the IL-2. Hopefully she makes out OK with that part of it. Seems like everyone responds to this TIL therapy differently. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 17, 2021 Share Posted August 17, 2021 Glad to hear you’re feeling better, it probably helped a lot that your health was relatively good heading into the trial. Of course we are all pulling for the TIL club members. Everyone is watching this trial closely! Carry on. Link to comment Share on other sites More sharing options...
Judy M2 Posted August 17, 2021 Share Posted August 17, 2021 Recovery is a slow process, and I know exactly what you mean by overdoing and getting set back. I do think that even the setbacks help with regaining strength in the long run. Best wishes to you, Linda and Ellen for good results. Your TIL trial is making news around lung cancer media. I may have even seen those photos of your lungs, lol. Link to comment Share on other sites More sharing options...
LouT Posted August 18, 2021 Share Posted August 18, 2021 Lexie, I've never been good at knowing how much to push or when to stop. But it sounds like you are getting stronger and that is good. So sorry to hear about Linda. I'll add her to my prayer list. What a terrible time to get pneumonia. We also appreciate hearing about others as they go through this trial. You never know when one of us may need it. Keep getting strong, you've come so far and it's good to hear you are progressing in the right direction. Lou Link to comment Share on other sites More sharing options...
LexieCat Posted August 18, 2021 Author Share Posted August 18, 2021 19 hours ago, Rower Michelle said: it probably helped a lot that your health was relatively good heading into the trial. Yeah, that's one reason I thought it made sense to go for it now and not wait till I'm further weakened by more treatment and/or the cancer. Right before I went into the hospital was probably the best/strongest I've felt since my recurrence last year--my last treatment was in March or April, so my body'd gotten a good rest. I used to think clinical trials were only for when you'd run out of all other options. My thinking on that has changed 180 degrees. Sometimes it makes sense to give the conventional therapy a shot first--other times it makes sense to try out one of the up-and-coming treatments. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 19, 2021 Share Posted August 19, 2021 One of the questions from the Cure Magazine Informed Patient Summit was “when is there a good time to consider a clinical trial?” The response was spot on ”It’s always a good time to do a trial”. If the trial looks promising that that’s the best course cause the standard of care can still be available. Your living proof to the new way forward…. Link to comment Share on other sites More sharing options...
Judy M2 Posted August 19, 2021 Share Posted August 19, 2021 Michelle, I watched that summit too. The doctors also said they want to remove barriers to clinical trials so more patients can participate. Link to comment Share on other sites More sharing options...
LexieCat Posted August 25, 2021 Author Share Posted August 25, 2021 My doc running the trial wanted me to see a pulmonologist, just to make sure I didn't have something going on with my lungs that causing my fatigue (my fatigue is much better now, so I think I'm headed in the right direction). The pulmonologist had me walk with him up and down the hallways for quite a while, wearing an oximeter while we chatted. At the end of our hike, the oximeter showed 96 percent, which immediately jumped up to 97 (it was 99 when we started). The pulmonologist said that considering my smoking history and the cancer, as well as the hospitalization, my breathing was "phenomenal." He told me that the rule of thumb is that it takes four times as long to recover as the time you spend hospitalized. His opinion was that I was deconditioned, but that I should continue to improve. He did encourage me to start trying some exercise. He was impressed with the results on my CT scans and was fascinated to hear about the trial. Ellen, our trial buddy in NY, called as I was driving back. The docs had to stop her IL-2 after three doses (which they felt was plenty), but she is totally wiped out right now. She thanked me for encouraging her, telling me that during the roughest parts, she kept repeating, "Teri says it will be worth it." She said that's the only thing that kept her going. Hopefully she starts feeling a bit better soon. I told her it might be a haul before she's feeling a hundred percent, but that I was finally feeling better. I texted yesterday with Linda's (in the trial with me here) daughter Jenn, who tells me Linda came home from the hospital (she was re-admitted with pneumonia) late last week with different antibiotics. She's still feeling pretty beat, too, but apparently has an appointment with our doc today. When we are ALL feeling better, the three of us need to plan a party or something. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 25, 2021 Share Posted August 25, 2021 That one word sums it up perfectly, phenomenal! Carry on. Link to comment Share on other sites More sharing options...
DMiller Posted August 25, 2021 Share Posted August 25, 2021 50 minutes ago, LexieCat said: My doc running the trial wanted me to see a pulmonologist, just to make sure there was nothing going on with my lungs, causing my fatigue (my fatigue is much better now, so I think I'm headed in the right direction). The pulmonologist had me walk with him up and down the hallways for quite a while, wearing an oximeter while we chatted. At the end of our hike, the oximeter showed 96 percent, which immediately jumped up to 97 (it was 99 when we started). The pulmonologist said that considering my smoking history and the cancer, as well as the hospitalization, my breathing was "phenomenal." He told me that the rule of thumb is that it takes four times as long to recover as the time you spend hospitalized. His opinion was that I was deconditioned, but that I should continue to improve. He did encourage me to start trying some exercise. He was impressed with the results on my CT scans and was fascinated to hear about the trial. Ellen, our trial buddy in NY, called as I was driving back. The docs had to stop her IL-2 after three doses (which they felt was plenty), but she is totally wiped out right now. She thanked me for encouraging her, telling me that during the roughest parts, she kept repeating, "Teri says it will be worth it." She said that's the only thing that kept her going. Hopefully she starts feeling a bit better soon. I told her it might be a haul before she's feeling a hundred percent, but that I was finally feeling better. I texted yesterday with Linda's (in the trial with me here) daughter Jenn, who tells me Linda came home from the hospital (she was re-admitted with pneumonia) late last week with different antibiotics. She's still feeling pretty beat, too, but apparently has an appointment with our doc today. When we are ALL feeling better, the three of us need to plan a party or something. I'm so happy to hear your feeling better. You are an amazing brave lady! Keep getting better! Link to comment Share on other sites More sharing options...
Judy M2 Posted August 25, 2021 Share Posted August 25, 2021 As I've mentioned before, it takes quite some time to regain your strength when you're deconditioned, but every little bit of effort helps. Your O2 is excellent, so that's good news. For me, just a short walk up to the corner was difficult and I'd often come back nauseous. One extra step a day. Rest when you have to. Maybe get some sun if you can tolerate it. That's what the physical therapist wanted me to do. Hoping all 3 of you get stronger and stronger. Link to comment Share on other sites More sharing options...
LouT Posted August 25, 2021 Share Posted August 25, 2021 Lexie, Look at you, recovering yourself and pumping up another person. That is such a great thing! Lou Link to comment Share on other sites More sharing options...
Lisa Haines Posted August 28, 2021 Share Posted August 28, 2021 Teri - It was great to see you on the LUNGevity Zoom today -- You look wonderful and I'm so happy to know that you are getting better each and every day. Hope Ellen has the same good results. I'm thinking of her daily and we do get updates from her every few days. I HOPE your fatigue level improves soon! ~ Lisa Link to comment Share on other sites More sharing options...
LexieCat Posted September 4, 2021 Author Share Posted September 4, 2021 Continuing to feel better every day. Last night I slept pretty much through the night--I think I woke for a few seconds here and there as I was turning over, but I didn't get up once and I slept for close to 12 hours. I needed that, I think--I've not been sleeping well since I got home. Waking up every couple of hours and having trouble staying asleep. I suspect just my moving around more, recently, is helping with my rest. As I mentioned on another thread, I go for my next scans on Tues (also have labs drawn) and see the doc on Wed. I'm a lot less nervous than I normally would be--I have a feeling the results will be good, and even if there's not a ton of improvement this time, I tend to doubt it will be worse. My comrades in arms (the other two women going through the trial) are having a rougher time than I did. Linda, who was at the hospital when I was, has been readmitted for the second time (two readmissions after discharge). She still has cloudy scans to the point where they can't see her lungs. The latest is that she is having severe GI issues on top of everything else. Her daughter tells me they put her on Marinol to improve her appetite, and that seems to have worked--apparently she had a pizza and then sent her daughter out for candy and pretzels, lol. Her daughter thinks maybe the treatments we got triggered an autoimmune response. But the typical treatment for that would be steroids, which can interfere with the TIL treatment, so they don't want to act too hastily. Hopefully they get a handle on that soon. And Ellen, up at MSK in NYC is finally getting out of the hospital, but with some supplemental O2. She's been weaning off the oxygen and hopes to be off it completely soon. She's got to stay nearby (she lives too far away from hospital to go home), so she will be at the nearby hotel where her husband's been staying, which has a suite. She's tickled pink to be out of the hospital, but will have to come back for checkups and labs for several days next week until she sees the doctor. If anyone has any spare good vibes to share, shoot a few of them their way. I gotta say, though--in spite of all the challenges, these two women have kept their spirits up and maintained a positive attitude throughout this whole ordeal. While we can't beat cancer just by thinking positive thoughts, there is a definite mind/body connection that can only help one's recovery. Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 4, 2021 Share Posted September 4, 2021 Definitely, you got it. We know there’s a lot of eyes on this trial and could bring lung cancer treatment into the next frontier. Glad to hear you’re getting stronger…. Hang tight. Link to comment Share on other sites More sharing options...
Tom Galli Posted September 5, 2021 Share Posted September 5, 2021 Lexie, I agree completely. There is a mind-body connection that affects recovery. It is good to learn you and Ellen are on the road to recovery. Stay the course. Tom Link to comment Share on other sites More sharing options...
TJM Posted September 7, 2021 Share Posted September 7, 2021 Hey GF. I've been radio silent for a bit for many reasons, bit I've thought of you often. It's funny how I feel guilty for being off line which makes it even harder to get back to posting. The mind is a funny place. Sounds like your improving. Also sounds like this treatment was a bit harder than you had anticipated. You and both your hero friends are in my thoughts. Fatigue is such a hard thing to explain to others because most of the time you still look healthy so fatigue becomes lazy. Anyway...you are a superstar. Never forget that. Peace Tom Edit: I also have my scan today. Let's ace em.... Link to comment Share on other sites More sharing options...
LexieCat Posted September 7, 2021 Author Share Posted September 7, 2021 Good luck with your scan, too, Tom! I have to leave in about an hour and a half to drink the (ugh) oral contrast. Hopefully I won't run into any port problems this time for the IV contrast. When I'm done with my scan, I have to meet up with the research nurse to have labs drawn for the study (as well as fill out some "quality of life" questionnaires for the study--I always hate those). Link to comment Share on other sites More sharing options...
Dona Posted September 7, 2021 Share Posted September 7, 2021 On 9/4/2021 at 2:57 PM, LexieCat said: Continuing to feel better every day. Last night I slept pretty much through the night--I think I woke for a few seconds here and there as I was turning over, but I didn't get up once and I slept for close to 12 hours. I needed that, I think--I've not been sleeping well since I got home. Waking up every couple of hours and having trouble staying asleep. I suspect just my moving around more, recently, is helping with my rest. As I mentioned on another thread, I go for my next scans on Tues (also have labs drawn) and see the doc on Wed. I'm a lot less nervous than I normally would be--I have a feeling the results will be good, and even if there's not a ton of improvement this time, I tend to doubt it will be worse. My comrades in arms (the other two women going through the trial) are having a rougher time than I did. Linda, who was at the hospital when I was, has been readmitted for the second time (two readmissions after discharge). She still has cloudy scans to the point where they can't see her lungs. The latest is that she is having severe GI issues on top of everything else. Her daughter tells me they put her on Marinol to improve her appetite, and that seems to have worked--apparently she had a pizza and then sent her daughter out for candy and pretzels, lol. Her daughter thinks maybe the treatments we got triggered an autoimmune response. But the typical treatment for that would be steroids, which can interfere with the TIL treatment, so they don't want to act too hastily. Hopefully they get a handle on that soon. And Ellen, up at MSK in NYC is finally getting out of the hospital, but with some supplemental O2. She's been weaning off the oxygen and hopes to be off it completely soon. She's got to stay nearby (she lives too far away from hospital to go home), so she will be at the nearby hotel where her husband's been staying, which has a suite. She's tickled pink to be out of the hospital, but will have to come back for checkups and labs for several days next week until she sees the doctor. If anyone has any spare good vibes to share, shoot a few of them their way. I gotta say, though--in spite of all the challenges, these two women have kept their spirits up and maintained a positive attitude throughout this whole ordeal. While we can't beat cancer just by thinking positive thoughts, there is a definite mind/body connection that can only help one's recovery. Sending positive energy to Linda, Ellen and YOU! Please let us know how your scans went today. Dona Link to comment Share on other sites More sharing options...
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