Cheryl T Posted August 17, 2022 Share Posted August 17, 2022 Hi everyone, hope you are all doing well. I have been on Tagrisso 80 for 15 months now and got off relatively lightly with regards to side effects. A few pimples initially, but that was it. However, the past 4 months have been a different story. First a skin rash that lead to my skin just sheeting off me. Got that under control and no sooner did my nails become a problem. Once my pride and joy, my nails are now a bittle mess. Just have to keep them as short as I can. My big problem, however, is diarrhoea. I have had it consistently for the past 4 weeks. Imodium doesn't work, the white diet doesn't work, arrowroot drinks don't work so now I am trying Metamicil after reading it can also be used to treat diarrhoea. Has anyone else found the diarrhoea this bad? Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted August 17, 2022 Share Posted August 17, 2022 I don't have this side effect, but your doctor can give you prescription lomotil. Also, some people take a lot of imodium every day, I think I've read up to 8 pills a day. Also try to see if you've become lactose intolerant. If dairy is a contributing factor, OTC lactase pills can help a great deal. Be sure to drink plenty of fluids so you don't get dehydrated. Ugh, Tagrisso nails are the WORST. Mine are a mess, and no nail strengtheners have done anything. Right now I'm experimenting with Nail-Aid Keratin 3-Day Growth. For $3 and change I figure it's worth a try. Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Cheryl T Posted August 17, 2022 Author Share Posted August 17, 2022 Thanks, Judy. It was the length of time this has been going on that really concerns me. It is even preventing me from straying too far from home. The long walks have had to stop. I have been through that many imodium tabs I think I am paying the wages for the pharmacy assistant! I am drinking a lot of Hydrate, the last thing I want is to end up in hospital. If the metamucil does not work I will contact my GP, again. My oncologist does not seem concerned. Just tells me to take imodium. Justin1970 and Judy M2 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted September 6, 2022 Share Posted September 6, 2022 I bet if your oncologist had consistent diarrhea for the amount of time you have, s/he would be concerned. Is there a palliative care team you could reach out to for suggestions? I hope your GP has some more specific advice for you. I know some people take a LOT of immodium…. Hang in, Karen BridgetO, Justin1970 and LouT 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 7, 2022 Share Posted September 7, 2022 Cheryl, Sorry I missed your post about diarrhea. While I have squamous cell, when the new drug Tarceva (targeted therapy) hit the market doctors only knew it worked for a small number of lung cancer patients. They didn't realize it didn't work at all against squamous cell. But, my doc suggested we try Tarceva in combination chemotherapy with infused Taxol and Carboplatin. The little pill cost $5,000 per month and all it did was give me horrible acne and diarrhea. Really, really bad diarrhea; it laughed at Imodium! I asked the lung cancer community for coping strategies. A man who was also having combination chemo including Tarceva told me to start each day with a plain bowel of steamed rice (not the converted or parboiled Uncle Ben's type). It tried this and it worked. As long as I had rice as my first meal of the day, the diarrhea became "managable". Give it a try. Stay the course. Tom Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Cheryl T Posted September 8, 2022 Author Share Posted September 8, 2022 Thanks for your replies people. The metamucil seems to bulk me up a bit but is still not the answer. My GP suggested I try codeine. Last week I had a to take a 4 hour and return trip to the big smoke which really worried me. I took the codeine, starting 8 hours before the trip then 2 every 4 hours and it worked! But not something you want to do every day. Will save that for necessary times. In the meantime I have tried lomotil with better results than imodium. Will try the bowl of white rice for first meal, Tom, it can't do any harm. However, after 15 months it looks like Tagrisso has stopped working for me. The last 2 scans have shown growth of the main tumour by 1mm then 4mm, respectively. If the next scan shows further growth then my oncologist is suggesting hard chemo, which I really don't want. My integrative doctor has suggested I seek a second opinion so has referred me to an oncologist who specialises in lung cancer. So just waiting for that appointment. In the meantime I continue on the Tagrisso until my next scan in November. 🤞🤞 LilyMir, Judy M2, Justin1970 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted September 17, 2022 Share Posted September 17, 2022 It's good you're going to see a lung cancer doc. There's so much new happening that a general oncologist just can't keep up with it all. Keep us posted! Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Cheryl T Posted September 18, 2022 Author Share Posted September 18, 2022 Thanks, Karen. Still waiting for the appt. Fingers crossed he will have a few more ideas. Justin1970 1 Quote Link to comment Share on other sites More sharing options...
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