Community Member
5 months agoI will like to know what a treatment any of you guys did or going thru after lumpectomy and radiation. My oncologist wants me to join a research infusion combined with Keytruda but I was reading the side effect and I’m not sure about it . Any thought ?
Accepted Answer
Many community members have shared their experiences with various post-treatment options, and it's completely understandable to have concerns about potential side effects when considering research participation. The decision about joining a clinical trial is very personal and depends on your specific situation, so discussing all your questions and concerns thoroughly with your oncologist will help you make the choice that feels right for you.
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Community Member
5 months agoWhat is the other medication/infusion besides Keytruda that your doctor is suggesting?
Community Member
5 months agoBecause of 5 autoimmune diagnoses (pernicious anemia, autoimmune gastritis, autoimmune neutropenia, psoriasis and Sjogren’s), I was deemed no candidate for immunotherapy, as bad reaction concerns. My course of recommendations was first the double mastectomies as the cancer was so tiny but very aggressive, and aggressive doses 6 months intravenous chemotherapy (due to ended up unexpectedly spreading to one axillary node months post op), more nodal surgery to clean up area, oral chemo Xeloda for 3 months, 3 weeks radiation, and now a PARP inhibitor Lynparza, as preventative to hit my BRCA gene. Best wishes to you. Treatment is different for everyone and a journey. Initially I was monitored with 3 month CT scans and frequent labs, and now added PET scans.
Community Member
5 months agoHi Claudia it’s call (sacituzumab govitecan-hziy with keytruda is still under research but I was reading their side effect n I’m not to happy of losing my hair again 😭😭
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5 months agoHi Irene , in my case I had a lumpectomy with a sentinel lymph node removal bx n it was clean . I had a dot of the tumor left and the surgeon removed all that.
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5 months agoGina, I am getting Keytruda and taking Xeloda after surgery. Are you Braca1 or 2?
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5 months agoHi Claudia mine were negative
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5 months agoMine was a k truda every three weeks with two different chemo cocktails(every week for 4weeks,then every 3weeksforanother4weeks) -then the k truda is for another 6 months after radiation - every oncologist in this area (Michigan - u of m) says the k truda is the miracle drug and it’s what makes chemo so effective -it’s protocol for triple neg - My side effects are so so - lost my thyroid …. Apparently worth it as my tumor shrunk to non existence from 6.8 cm - Good luck
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4 months agoThank you Lou !!
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4 months agoIn hospital now struggling with adrenal insufficiency from Kaytruda. Had 6 treatments then everything went south. They think secondary or central adrenal insufficiency coming from pituitary is fried and no longer sending ACTH to adrenals to produce cortisol. Now looking at lifetime of hydrocortisone daily. Stopped Kaytruda was supposed to get until Feb 2026. My double Masectomy tissue transplant sch Sept 10 praying still can complete with all complications. Had keynote 522 just finished last red devil Aug 1 hope this helps
Community Member
4 months agoSorry to heard that Amy 😩
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4 months agoAmy, So scary and praying for you. I’m not permitted immunotherapy because of 5 known autoimmune diagnoses, thus it is contraindicated. I’m on PARP inhibitors now for the BRCA gene. So many different and scary journeys. 🙏
Community Member
4 months agoGina, Three sentinel nodes tested negative with my original surgeries, and I had the recommended double mastectomies with implants at the same time because my tumors were very small, spotted on a routine breast MRI, due to BRCA 2 history. Unfortunately, 10 months later I spread to a node and my treatment journey needs began and continues now as I’ve commented. My tiny triple negative cancer has Ki score 95 aggression. Felt it’s in my blood. I’m fighting and doing ok overall. 🙏
Community Member
4 months agoI've had keytruda. During regular chemo and then that alone after radiation. I get very little side effects from it. Including my hair has grown around 2-3 inches. It takes about 45 minutes and I'm out again. I do sleep a lot during the next 24 hours though.
Community Member
4 months agoKeytruda and immunotherapies are wonderful for those who can tolerate that treatment. My Oncologist will not take the chance with my autoimmune histories. The chemo nurses also told me that side effects are devastating if they occur. I’m blessed to have other preventive options that help me fight the BRCA gene. My prayers and best wishes to everyone. All journeys are unique to fit our needs and one never can predict certain outcomes. I worked 46 years as an RN, mainly critical care, and I have seen so much, but actually being a patient now having cancer, makes me appreciate the profession in a clearer light.
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4 months agoI did. not loose my hair but I have the hand and foot disease which is painful. I cannot open bottles and jars. Thank God I am starting my 8th and last cycle on Monday. I plan to push through.
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4 months agoChioma, I also had hand and foot blisters and severe neuropathy that continues. Having Pernicious Anemia for years initially impacted me with neuropathy as well. My feet required debrided and surgical boots. Mouth and lips blistered too, especially on Xeloda. Side effects can certainly be nasty but one needs to weigh out the entire picture of the greater good. Prayers and best wishes to you.
Community Member
2 months agoMany community members have shared their experiences with various post-treatment options, and it's completely understandable to have concerns about potential side effects when considering research participation. The decision about joining a clinical trial is very personal and depends on your specific situation, so discussing all your questions and concerns thoroughly with your oncologist will help you make the choice that feels right for you.
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