SteveD Posted March 7, 2021 Share Posted March 7, 2021 Just had a Pet Scan at five months after chemo and radiation that showed no reocurring tumor and I'm good from head to mid-thigh. I got through everything without too much trouble if you don't count the very painful esophagus, fatigue and a few other adverse effects. But when my doctors had me try out immunotherapy, I had very bad "side effects". We tried an infusion Dec 5th and it took three weeks to "recover". Then another Jan 7th and it's only now that I'm coming back from it. I have stopped Imfinzi and I'm in pulmonary rehab to try to improve my "shortness of breath", which got very bad after the latest treatment. Another something new was an episode of a-fib and continuing irregular heart activity. I wonder, with the radiation targeted so close to my heart, and the change in my veins after chemo, well, I'm asking the question whether the treatments have had something to do with it. Anyway, I believe I'm getting better now that I quit immunotherapy. One day at a time 'till my next scan. Starting to breathe better after regular, not-too-stenuous exercise and looking forward to Springtime and walks outside. Link to comment Share on other sites More sharing options...
LexieCat Posted March 7, 2021 Share Posted March 7, 2021 Hi, Steve, Glad to hear the good PET results! I'm sorry you've had such a rough time with treatment. It's so unpredictable what kinds of effects various treatments will have. Have you been able to get your vaccine yet? I know I'm looking forward to getting out and about more now that I'm nearing the immunity stage--and, as you noted, with signs of spring on the horizon. If nothing else, I'm hoping it will improve my mood! Hard to say, I suppose, whether the cardiac issues have anything to do with the treatments. One of the things that's so frustrating is that lung cancer shows up right about the age that a lot of us have other age-related things going on--in my case, cataracts, arthritis, and osteoporosis. Kind of a downer to feel like everything hits at once. Hang in there, and I'll do the same. Link to comment Share on other sites More sharing options...
Judy M2 Posted March 7, 2021 Share Posted March 7, 2021 Steve, so sorry you had so many side effects. I can relate to the pain of esophagitis. The good news is that it does heal eventually. I hope you get your SoB and cardiac symptoms figured out soon. But congratulations on your scan! We do go through hell to get there. Take care. Link to comment Share on other sites More sharing options...
SteveD Posted March 7, 2021 Author Share Posted March 7, 2021 No Lexie, I'm not getting the "vaccine". Too many conflicting experiences have been reported and my lymphocytes are low. How can anyone be comfortable with experimental vaccines when the actual threat is no more than the seasonal flu? And with so many well respected medical professionals speaking out? Link to comment Share on other sites More sharing options...
SteveD Posted March 7, 2021 Author Share Posted March 7, 2021 Thanks Judy, my esophagus has healed up nicely. Actually my labs all through the chemo and radiation were quite good. The fatigue seemed to clear up weekly, and with a few other troubles I got through it. The COPD and arthritis really flared up when I began the immunotherapy, but since I stopped that, I'm doing much better. Just have to work on my breathing now, and with a good diet and some exercise, I'm confident my immune system will recover. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 7, 2021 Share Posted March 7, 2021 Steve, while I appreciate everyone’s opinions on getting the vaccine, Covid is not the same as the seasonal flu in any regard. Also, these are not experimental vaccines. This science has been used for years in the SARS vaccine and others. Everyone should check with their medical team if they have any questions about the vaccine and if it is right for them. Link to comment Share on other sites More sharing options...
TJM Posted March 7, 2021 Share Posted March 7, 2021 Steve Not sure what all your symptoms have been but I started to "go backwards" around labor day. Short of breath, irregular heart beat, fatigue etc. Turns out I had an embolism in my left lung. Have been on blood thinners since then and doing much better. Something to consider. Oh....I'll take your shot if its ok? Peace Tom Link to comment Share on other sites More sharing options...
SteveD Posted March 8, 2021 Author Share Posted March 8, 2021 Tom, I've been on blood thinners too. You can have "my shot" both of them, be my guest. One of the two nurses/techs that did my Pet Scan got very sick for four days after her shot. In my weakened condition, I'm not ready to face an assault on my system, at least not until I improve. The imunotherapy had my immune system attacking healthy cells and organs. I will not entertain an unproven vaccine until I regain some balance in my immune system with a healthy lymphocyte count. Link to comment Share on other sites More sharing options...
TJM Posted March 8, 2021 Share Posted March 8, 2021 I wasn't judging Steve. Its everyone's decision to make. You have a lot more company than you imagine. I hit a blood vein with my shots and developed a scary looking and painful hematoma near my belly button. They switched me to the pills. Good luck Link to comment Share on other sites More sharing options...
SteveD Posted March 8, 2021 Author Share Posted March 8, 2021 Yes you are right Tom, whether to go along with a controversial vaccine is a decision each person should make. I'm just saying I've made a decision for myself based on intense inquiry with well respected medical professionals. Link to comment Share on other sites More sharing options...
SteveD Posted March 8, 2021 Author Share Posted March 8, 2021 Got it. There is no discussion allowed unless it fits the official narrative. Link to comment Share on other sites More sharing options...
LouT Posted March 10, 2021 Share Posted March 10, 2021 Steve, Sorry to hear about the many side effects, but happy to hear about the scans. I did not have any chemo, only surgery, but I can remember being breathless when I walked just a few steps and it took me weeks to get back to a healthier place. I'll never be a rower like Michelle, but I can do some fast walking for good distances and that works for me. Stick with your therapy and workouts so you can enjoy each day more and feel more comfortable after your treatments. Lou Link to comment Share on other sites More sharing options...
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