BroFTW Posted March 24, 2022 Share Posted March 24, 2022 It turns out the happy news didn't last too long for my brother's NED. After review on the scans of the neck region, the doctor found 2 enlarged nodes, 25mm each. Visit to the oncologist on Tuesday. I am hoping that it is not the cancer, but hopes are slim at this point. Anyone with any experience on such occurances? Tom Galli, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 24, 2022 Share Posted March 24, 2022 Bro, Very sorry to learn of this development. I think many of us here have had recurrences after treatment. They are never good news. Stay the course. Tom LouT, Justin1970 and BroFTW 3 Quote Link to comment Share on other sites More sharing options...
BroFTW Posted March 29, 2022 Author Share Posted March 29, 2022 An update, oncologist suggested chemotherapy initially. Dosage 100mg cisplatin and 100mg irinotekan today, and then two weeks 100mg irinotekan for just one day. Has anyone met such such a scheme for this? Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
BroFTW Posted April 4, 2022 Author Share Posted April 4, 2022 Second dosage of chemotherapy tomorrow, irinotekan 100mg. Brother says that he can feel the lymph nodes are shrinking, which meand it is still sensitive to chemotherapy. Does not seem that any tissue is involved, hoping it will be sufficient only to be treated with chemotherapy. Blood results are good. @KatieBi I am not aware of such tests in my country, unfortunately immunotherapy is not available for sure. Justin1970 and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Nguyentuan Posted April 6, 2022 Share Posted April 6, 2022 Hello. I come from Vietnam. My mother just finished chemotherapy after 4 months with conventional chemotherapy + tecentriq. Everything is fine, very nice, the tumor is down to 90% and continuing to maintain with tecentriq every 3 weeks. The cost is huge and insurance doesn't cover it. The reason is that in Vietnam, people still do not put their trust in drugs whose effects have not been proven to be beneficial, for all patients. Most immunosuppressants are like that. So, crank back, it all depends on the unique condition of the patient. It doesn't always work and for everyone. If it's not there in Macedonia, it's not something to be afraid of. However, the good news is that your brother is in the limited stage, it can be maintained very far, my mother is in the metastatic stage. Let's nurture hopes and live the best days. With our family. Please pray for us. Tom Galli, Justin1970 and BroFTW 3 Quote Link to comment Share on other sites More sharing options...
BroFTW Posted April 6, 2022 Author Share Posted April 6, 2022 Hi Nguyentuan, Thank you very much for writing. The first thing I noticed reading the stories from different people ontbe internet is that indeed everyone's journey through this is quite different. Best wishes to your mom and your family. Justin1970, Nguyentuan and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
BroFTW Posted June 14, 2022 Author Share Posted June 14, 2022 An update. My brother is feeling great at this point. He is receiving the 4th cycle (cycle: 3 weeks, once weekly, cisplatin+irinotekan, irinotekan, irinotekan, one week rest). The funny thing is just after the first therapy of the second cycle he got covid. He did not have much trouble with that, just some vitamins and check ups, but he missed the 2nd and 3rd therapy. I said funny thing because after covid he stopped having any issues with nausea and intolerance to some foods. His diet improved greatly. I don't know how covid works, but that was a nice side effect. 😀 After the 4th cycle ends, he will have radiation (10 fractions) for the supraclavicular nodes, which are not enlarged now. Oncologist did not asked for any scans now. Will check with her before radiation starts. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted June 14, 2022 Share Posted June 14, 2022 That is great news BroFTW! I pray that the radiation goes smoothly. That is so strange about the Covid but glad that it helped with his nausea. Keep us posted. Pam LouT, Justin1970 and BroFTW 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted June 14, 2022 Share Posted June 14, 2022 I've hardly heard of Covid helping someone, but for whatever reason it did I'm glad for your brother's nausea and upset. I hope the rest goes as well for him as well. Lou BroFTW and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
BroFTW Posted July 18, 2022 Author Share Posted July 18, 2022 It has been a while since I visited around here. My brother is doing fine after the last chemotherapy. Eating well, no issues with nausea or other symptoms. Driving on his own, which he does even when he was going for chemo, but it is a long road and I'd take him to chemo. No scans have been made since the last CT scan in February, and that worries me a bit. In 2 weeks he is going for a radiotherapy simulation, and then on 15th of August starting with radiation, 10 fractions aimed at the supraclavicular nodes that use to be enlarged. I really hope 10 fractions and the lower intensity will not cause much side effects. Anyway, he's been having quite a good periods of no worries 2 weeks now, and a month ahead. Tom Galli, BridgetO and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Pstar Posted July 18, 2022 Share Posted July 18, 2022 Hoping that the radiation does it’s job for your brother and glad to hear he is feeling better. Scan will probably be done after the radiation. BroFTW and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted July 20, 2022 Share Posted July 20, 2022 Hi that's great news your brother is feeling better I really hope he continues to feel well all the best Justin Izzy and BroFTW 2 Quote Link to comment Share on other sites More sharing options...
BroFTW Posted August 30, 2022 Author Share Posted August 30, 2022 Update: Completed the radiation treatment, 10 fractions on supraclavicular region rigth side. No adverse effects so far. Control CT scans, neck, lungs and abdomen in 2 months. Brother is feeling just fine, driving and other daily tasks on his own. Eating is back to normal and even weight is back again to pre-cancer levels, which might be slightly overweight actually . He still takes some meds for the stomach, nolpasa, sometimes valium and now second time this year royal jelly as imunity booster. Hoping for some good news in two months. Nguyentuan, NikoleV, Justin1970 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted September 1, 2022 Share Posted September 1, 2022 Glad the radiation went well and hoping for good news in a couple months with the scans. Justin1970 1 Quote Link to comment Share on other sites More sharing options...
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