Babs Posted September 19, 2020 Share Posted September 19, 2020 I hope everybody’s side effects are manageable. Mine were horrid this go round! I had leg, bone pain from Sunday evening and still woke up from it at 2:00 am today. This time my wrist even started hurtIng again where I broke it over Labor Day. I don’t take the extra steroids after treatment as my Dr is not a fan. Something needs to change for the next treatment. Either a reduced dosage or introducing the steroids. Any similar situations out there? Has anybody reduced their dosage? I am on Carbo/taxol/Keytruda ever 3 weeks. Thanks... Babs Link to comment Share on other sites More sharing options...
Sabacat Posted September 19, 2020 Share Posted September 19, 2020 So sorry to hear that, Babs!!! My second round is on Monday - will lyk how that goes, but I do get the steroids so things will probably 🤞not hit the fan till Thursday. Susan Link to comment Share on other sites More sharing options...
Sabacat Posted September 19, 2020 Share Posted September 19, 2020 My worst days last time (after Monday infusion) were Saturday through probably Tuesday. Hard to be sure because the reaction to the compazine accounted for a large part of the bad stuff and having it happen on the holiday weekend made it that much worse. This past week was pretty good aside from some mild headaches. Link to comment Share on other sites More sharing options...
GaryG Posted September 19, 2020 Share Posted September 19, 2020 Babs: Sorry to hear you are having a bad time. I had my 4rth infusion of Carbo/Alitba/Keytruda (Not Taxol) 2 days ago and I always take steroids one day before and 2 days after infusion. I did not notice any ill effects . I even think I have better appetite taking them. I will say though that this time around I am feeling less energetic and a bit sleepy. I hope things do not get worse going forward. Maybe that's why they limit Carbo to 4 times. Best GaryG Link to comment Share on other sites More sharing options...
JamesB Posted September 19, 2020 Share Posted September 19, 2020 34 minutes ago, GaryG said: Babs: Sorry to hear you are having a bad time. I had my 4rth infusion of Carbo/Alitba/Keytruda (Not Taxol) 2 days ago and I always take steroids one day before and 2 days after infusion. I did not notice any ill effects . I even think I have better appetite taking them. I will say though that this time around I am feeling less energetic and a bit sleepy. I hope things do not get worse going forward. Maybe that's why they limit Carbo to 4 times. Best GaryG Hey Babs, maybe that's why we are having a tough time.Gary I'm on the same protocol. I only got steroids day 1 and day 2 maybe 3 days is better? Or at least a better taper plan.I have been on them many times for my ears. Link to comment Share on other sites More sharing options...
GaryG Posted September 19, 2020 Share Posted September 19, 2020 Hi James. My oncologist put me on 4 days of steroid. I take 2 at home the day prior to infusion. I am given 2 before infusion. I take 2 each day 2 days after infusion Link to comment Share on other sites More sharing options...
JamesB Posted September 19, 2020 Share Posted September 19, 2020 3 hours ago, GaryG said: Hi James. My oncologist put me on 4 days of steroid. I take 2 at home the day prior to infusion. I am given 2 before infusion. I take 2 each day 2 days after infusion That sounds like a plan! I'm going to ask my doc about this. I had 20 mg the day of the infusion and then 8mg the day after. That's probably why I felt so good. Thanks so much for the info. James Link to comment Share on other sites More sharing options...
Babs Posted September 19, 2020 Share Posted September 19, 2020 6 hours ago, JamesB said: Hey Babs, maybe that's why we are having a tough time.Gary I'm on the same protocol. I only got steroids day 1 and day 2 maybe 3 days is better? Or at least a better taper plan.I have been on them many times for my ears. So James, we are on the same drugs sounds like. Carbo/Taxol/Keytruda. I always thought it was the Taxol which is the nasty one. Are you doing treatment every week? I have 20 mg steroids the day of infusion and then nothing. I wonder if I were to have steroids after the infusion it would just prolong the onset of side effects or actually lessen the severity. What steroid drug is everybody on? I take Dexamethasone on infusion day. All I know is something has to be different for next treatment. Babs Link to comment Share on other sites More sharing options...
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