Deb W Posted December 8, 2020 Posted December 8, 2020 Hi friends, My oncologist told me today that if my next scan (in 3 weeks) is still clear I can take Keytruda every 6 weeks (double dose) in stead of every 3 weeks. I experience some side effects - a lot of fatigue (I can manage) and some nausea. When I asked what a double dose might feel like he said it won't be any different. I asked him if there was any research on how people were doing getting Keytruda 1 time every 6 weeks vs. 1 time every 3 weeks. I sort of think that a double dose might cause worse side effects. The 6 week regimen is a newer protocol and I asked him if he had other patients on the 6 week regimen, he said that he had 5 patients and none reported a problem....but he also said it is a rather small number. Part of me thinks if the FDA approved the 6 week treatment It should be o.k. If you've had this regimen, were your side effects any worse than having it every 3 weeks? Deb
GaryG Posted December 8, 2020 Posted December 8, 2020 Hi Deb: I hope the new plan works to perfection. I don't think an oncologist doubles the amount of Keytruda without following guidelines. I am glad you are ahead of me because I am learning a lot from you. Your good results also give the rest of us hope that we might get there. My last scan showed 2 nodes remaining of 1.2 cm each and I am hoping Keytruda and Alimta do the job. Do you remember how many rounds of Keytruda and Alimta (without Carboplatin) you had? Again good luck and I wish you the best.
Rower Michelle Posted December 9, 2020 Posted December 9, 2020 Hey Deb, You are correct in trusting your instincts here. The double dosing was FDA approved in response to the pandemic theoretically to reduce any potential exposure to patients who are stable. One of our LC group members tried the new protocol for only a short while before it had to be discontinued for extremely elevated liver enzymes. It took weeks and a liver ultrasound before she resumed the every three week schedule. I think you’re right to ask more questions about the rationale while taking a wait & see approach. Personally I’d wonder what the reimbursement model is for the double dosing regime too.
Deb W Posted December 9, 2020 Author Posted December 9, 2020 Hi Gary, I had 4 rounds of Alimta and Keytruda. Originally he said I would finish the Alimta in October (which it turned out to be 10-13) and then he changed it and said I would keep the Alimta until February. Maybe it was the tumor board that said it would be better to have me on it longer, but I began to have some problems with fatigue...it felt like I hit a wall. I took a 2 week break from treatment and at the next visit he dropped the Alimta. I felt like someone turned the lights on after the Alimta was dropped. Today I only had Keytruda. So this is the 2nd round with Keytruda only. I think if I didn't have the side effects I would have had the Alimta for 8 rounds. Now if the next scan shows anything new, I think the plan will be for me to go back on Alimta for sure. I have had two clear scans. There is density near a lymph node, but he said that is always going to be there and he's not at all worried about it. I hope it works as well for you as it did for me...also hope this information helps. I think I'll always have thoughts of another recurrence, but I'm not going to let it interfere with living my life. The are lots of people living with chronic conditions and have learned they can't worry so much or the quality of life is not would it could be. I think of it as self discipline with my thoughts....most of the time it works. Deb
Deb W Posted December 9, 2020 Author Posted December 9, 2020 Michelle - Thanks so much for that info. It just didn't make sense to me that doubling the dose would feel the same way - I mean it has to be harder on the body. Such a good point on the reimbursement - I wonder too. I was even thinking about keeping the 3 week schedule and having the infusion at one of their locations closer to home. My oncologist said that if I keep the 3 week schedule, I would only need to see him every 6 weeks. I don't exactly like enjoy my visits with the oncologist. I just open my notes and ask him all the questions I need answered and then it's finished. Thanks so much for your input. Deb
GaryG Posted December 9, 2020 Posted December 9, 2020 Deb: Now I remember why your onc dropped Alimta from a previous post (I think). Thank you for the good wishes. The reason I asked because my Oncologist did not have a definite plan for dropping Alimta especially when I still have 2 nodes. I feel a bit tired and sleepy starting the 4th day after infusion and it shows mostly on the tennis court (no couch available). Now I have a scan every 9 weeks so I am assuming Alimta and Keytruda are less effective than when Carboplatin is added. In any event I hope you remain NED for ever and live a life without worries. There are always meds for cancer but none for worries. Besides they don't help. Thank you always for your help and I wish you the best. GarG
LouT Posted December 9, 2020 Posted December 9, 2020 Deb, I'm always so lost in conversations about chemo because I have no personal experience, but I'm glad you are questioning this. Based on what Michelle reported it would be worth checking in again with your doctor. Lou
jack14 Posted March 7, 2021 Posted March 7, 2021 The only downside, that I can see, of getting this every six weeks verses 3, is not seeing ones Oncologist as frequently as might be of benefit.
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