Deb W Posted April 25, 2021 Share Posted April 25, 2021 Hi friends, I was so hoping Tabrecta would be the charm. After 10 days I had to stop. I had been having fatigue, body aches, nausea . It felt worse than chemotherapy because the side effects were dail. At least with chemo I knew days 4-7 were bad, but I could work my way back to normal. Not with this drug. He took me off of it for 2 days and put me back on at half the dose at 200mg. After taking the am dose on Friday all of the symptoms I had been able to deal with so far, but about 2 hours after taking a 100 mg dose but now developed a rash and vomiting and diarrhea and then passed out (luckily my husband was home). It all happened very quickly. I also had what felt like a migraine, but it was in the back of my skull and I've never had headaches there. My oncologist said to go to the ER and he would call ahead of time so that I would be seen right away. Well after waiting in the ER for 1 hour - not sure how they were triaging. We almost went to the community hospital 1 mile away, but I wanted to go where my doc was on staff - probably made it there in 30 minutes. I became so weak that I couldn't sit upright and needed help walking which was just so scary. My BP at that time was 85/34. The ER staff (at least where I was) didn't know much about cancer and or drugs used to treat and this is why it's so important to have an oncologist that is willing to coordinate the care so well with medical teams and the patient. If not, you can take your brochure with you that the pharma company sends, but who is thinking about that when you are so sick? I'm not sure what it's called, but my oncologist said he'd be contacting Novartis to add the adverse effects. So, no more Tabrecta. He'll be looking into Tepotnib, but I think they are very similar drugs and I never want to go through this again. Currently there are no studies on people switching from Tabrecta and then taking Tepotinib, but my oncologist is planning on working on that. There also might be another option - go back on Keytruda and have an infusion of steroid with it to protect the colon. Again there are no studies to know whether or not that will be effective. I'll be going for post hospital visit on Friday and he'll probably have some options. This was my experience with Tabrecta, and I know for many of you it is wonderful and I'm very happy for you. I did feel that it was important to write about mine. So I carry on as we all do. So glad to be home tonight. Deb Link to comment Share on other sites More sharing options...
Jesse L. Posted April 25, 2021 Share Posted April 25, 2021 I'm so sorry that Tabectra did not work out for you...I guess the only way to know though was to try it and see if it worked. Since others tolerated it relatively well, there wasnt any reason to believe that it wouldn't work for you as well. I hope you recover fully and well from the horrendous side effects you experienced. I can't say that I've had anything happen to me quite so bad, but in a strange way I had an incident happen to me recently that actually could have been worse. This last Friday afternoon I noticed that my left leg was swelling below the knee. I assumed that my knee was going bad again as it once did back in 2013. At that time the VA treated it as possible Deep Vein Thrombosis. So, back then they quickly checked my leg by ultrasound only to find that it was extra fluid draining down into my leg from a torn meniscus in my knee. Shortly after that I had my knee repaired through arthroscopic surgery and everything had been good up till this last Friday, or so I thought. This last Monday I went to the VA and insisted that I get x-rays of my knee and also just to be on the safe side, they did an ultrasound late in the day as well. Wouldn't you know it as I was leaving the parking lot of the VA just after 4 in the afternoon, I got a call from them telling me that in fact I did have DVT and I needed to get to a hospital ER immediately. There I was put on ELIQUIS to dissolve the clot that was causing the swelling in my leg. If that clot would have gone from leg to my heart and lungs over the weekend, I could have been pushing daisies by Monday. When I talked to my oncologist later this last week, she told me that the cancer they removed during my lobectomy and the chemotherapy caused the DVT. She went on to tell me that it was always a possible side effect, but no one ever told me that throughout my treatment. Scary stuff... In any case who knew that you would have such a horrible reaction? Well, I guess it's on to the next plan of action for you... Stay positive!! Link to comment Share on other sites More sharing options...
LexieCat Posted April 25, 2021 Share Posted April 25, 2021 I'm so sorry, Deb, That must have been truly scary. I've got clinical trials on the brain right now, but have you investigated any of those? There are some new immunotherapy treatments being tested (apart from the rather drastic treatment I'm having) that seem promising. Of course, every trial's eligibility criteria are different, but it never hurts to check. Hang in there--hope you are feeling better. Link to comment Share on other sites More sharing options...
LouT Posted April 25, 2021 Share Posted April 25, 2021 Deb, What a terrible incident to go through. So sorry to hear that your side-effects were so many and so intense. I guess when it comes to chemo the trials are never really done, each new patient is another test of efficacy and side-effects. Lexie mentioned other trials and that might be something that your Oncologist may want to look into and consider for your case. Please stay strong and I hope you recover from those side-effects quickly. You are in my prayers. Lou Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 25, 2021 Share Posted April 25, 2021 So carry on is what we all do— simple and profound way of saying there is no easy road, even in targeted therapy. Deb I’m so sorry you have had to go through all of that. It must have been frightening. It’s great advice to keep the medication information with you— I’m also sorry that your team didn’t provide you with a “in case of emergency” hand out. About a month into targeted therapy I landed in the local ED, of course the doc had no idea what I was taking so I handed them the info sheet the KU Team put together so the correct labs could be drawn. I hope your oncologist does have a better option when you see him later in the week. Please keep us posted! Michelle Link to comment Share on other sites More sharing options...
Jennedy Posted April 25, 2021 Share Posted April 25, 2021 Deb, I'm so sorry you had to go through that. Hopefully, yout oncologist has options for you Friday. I guess, I need to find my chemo data and put it in my purse. Hugs, Jenny Link to comment Share on other sites More sharing options...
LexieCat Posted April 25, 2021 Share Posted April 25, 2021 You can set up a Medical ID that can be accessed from your lock screen on your iPhone: https://support.apple.com/en-us/HT207021--it also provides that info during an emergency call. I have my doctors listed and my medications, as well as my blood type, organ donation info, etc. You could include a link to the drug website for newer/lesser-known medications. I'm not familiar with other smartphones (e.g., Android) but I'm sure many of them have something similar. Link to comment Share on other sites More sharing options...
Judy M2 Posted April 25, 2021 Share Posted April 25, 2021 Android has the same thing in Contacts. Just click on your Contact photo and scroll down to Medical Information. Link to comment Share on other sites More sharing options...
Tom Galli Posted April 25, 2021 Share Posted April 25, 2021 Deb, What an experience! I'm saddened you had to endure such a rocky road from Tabrecta. And add those problems to your ER experience! Well, lung cancer just sucks! So, we look forward to what's up next. The idea of Keytruda with steroids is novel. Read about this and discuss it with your oncologist. Contact me if you feel the need. Stay the course. Tom Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 26, 2021 Share Posted April 26, 2021 Oh Deb, I'm so sorry that happened! Glad you are back at home. Link to comment Share on other sites More sharing options...
Deb W Posted April 26, 2021 Author Share Posted April 26, 2021 On 4/25/2021 at 12:51 AM, Jesse L. said: I'm so sorry that Tabectra did not work out for you...I guess the only way to know though was to try it and see if it worked. Since others tolerated it relatively well, there wasnt any reason to believe that it wouldn't work for you as well. I hope you recover fully and well from the horrendous side effects you experienced. I can't say that I've had anything happen to me quite so bad, but in a strange way I had an incident happen to me recently that actually could have been worse. This last Friday afternoon I noticed that my left leg was swelling below the knee. I assumed that my knee was going bad again as it once did back in 2013. At that time the VA treated it as possible Deep Vein Thrombosis. So, back then they quickly checked my leg by ultrasound only to find that it was extra fluid draining down into my leg from a torn meniscus in my knee. Shortly after that I had my knee repaired through arthroscopic surgery and everything had been good up till this last Friday, or so I thought. This last Monday I went to the VA and insisted that I get x-rays of my knee and also just to be on the safe side, they did an ultrasound late in the day as well. Wouldn't you know it as I was leaving the parking lot of the VA just after 4 in the afternoon, I got a call from them telling me that in fact I did have DVT and I needed to get to a hospital ER immediately. There I was put on ELIQUIS to dissolve the clot that was causing the swelling in my leg. If that clot would have gone from leg to my heart and lungs over the weekend, I could have been pushing daisies by Monday. When I talked to my oncologist later this last week, she told me that the cancer they removed during my lobectomy and the chemotherapy caused the DVT. She went on to tell me that it was always a possible side effect, but no one ever told me that throughout my treatment. Scary stuff... In any case who knew that you would have such a horrible reaction? Well, I guess it's on to the next plan of action for you... Stay positive!! Oh, no! You should have been told about the possible DVT. So many things I think that are not told to us ... or sometimes not known by the professionals especially with all the new drugs coming to market. I should find out Friday what the new plan will be. Link to comment Share on other sites More sharing options...
Deb W Posted April 26, 2021 Author Share Posted April 26, 2021 On 4/25/2021 at 5:24 AM, LexieCat said: I'm so sorry, Deb, That must have been truly scary. I've got clinical trials on the brain right now, but have you investigated any of those? There are some new immunotherapy treatments being tested (apart from the rather drastic treatment I'm having) that seem promising. Of course, every trial's eligibility criteria are different, but it never hurts to check. Hang in there--hope you are feeling better. Thanks, we'll see what happens. I know yours sounds intense. I'll see what he has to say on Friday. He was looking into trials as well. Link to comment Share on other sites More sharing options...
Deb W Posted April 26, 2021 Author Share Posted April 26, 2021 On 4/25/2021 at 10:26 AM, LexieCat said: You can set up a Medical ID that can be accessed from your lock screen on your iPhone: https://support.apple.com/en-us/HT207021--it also provides that info during an emergency call. I have my doctors listed and my medications, as well as my blood type, organ donation info, etc. You could include a link to the drug website for newer/lesser-known medications. I'm not familiar with other smartphones (e.g., Android) but I'm sure many of them have something similar. Great idea. I'm doing it now. Link to comment Share on other sites More sharing options...
LexieCat Posted April 26, 2021 Share Posted April 26, 2021 Yeah, I needed to update some of the info on mine, so this was a good reminder. The nice thing, too, is that it's equally available on the Apple Watch. Unlike my kiddos, I don't have my phone on me 24/7--that's the biggest advantage of the Apple Watch, as far as I'm concerned. Link to comment Share on other sites More sharing options...
Judy M2 Posted April 27, 2021 Share Posted April 27, 2021 FYI, I also added my Covid vaccine info to my medical information on my (Android) phone. Figured that would be pertinent these days. Link to comment Share on other sites More sharing options...
LexieCat Posted April 27, 2021 Share Posted April 27, 2021 Ooh, great idea! I did just read an article, too, suggesting that you send an image of your card to your primary physician and ask them to include it in your medical records. One more fail-safe against losing the card. I sent mine off to my primary yesterday. But adding it to the phone doesn't hurt, either. Link to comment Share on other sites More sharing options...
Judy M2 Posted April 27, 2021 Share Posted April 27, 2021 I asked my PCP if they wanted to copy my card, but they said they just needed the dates and manufacturer for my chart. Link to comment Share on other sites More sharing options...
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