| Joined: Jul 2019 Posts: 4 Member | OP Member Joined: Jul 2019 Posts: 4 | My wife has had two infusions of Keytruda. She had a gingival squamous cell carcinoma resected in 2019 with clear margins and no follow-up chemo or immunotherapy. Had course of radiation. Had recurrence in early 2020. Surgery postponed due to covid, but on the day before she was going to start chemo, they started doing surgeries again...and she was at the top of list. Had her jaw removed, 43 nodes all negative, margins clear but lympho-vascular infiltration. Within 3 months, had a dermal metastasis to the area just behind her ear and a recurrence near the TM joint extending to her orbital bone.
Started Keytruda a month ago. Had 2nd course last week. Her pain seems to be worsened a couple of days after the treatments. I figure this may be a reaction to her immune system attacking her tumors. Is this a common reaction? Get better with more treatment?
Wife has gingival SCC, T3N0M0, surg 6/18, removed gums, seg mandible.Margins clear but close, poorly differentiated. Mandible fract at surg, titanium plate. Some speech and swallow prblms since. To start radiation soon.
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | My husband was in a phase 1 trial of immunotherapy a few years back. He never had pain from the infusion. What the doctors were watching for were things like rashes and other unexpected changes. A few of the forum members did get Keytruda but I don’t recall anyone mentioning pain after infusion. I would strongly suggest that you contact your wife’s doctors and discuss the pain with them. They will be able to reassure you if it’s nothing or they will be able to bring your wife in for further examination. Very often, patients and caregivers need to advocate for themselves. Is there perhaps a help line at the hospital that you can access if you can’t get hold of the doctor immediately?
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Hi Michael,
Sorry to hear about your wife. I finished keytruda/pembrolizumab in March after having 10 infusions after my surgery. I didn't have any pain, but I did end up with a few of the rare side effects. You need to let your wife's team know ASAP that she is in pain. Immunotherapy shouldn't give any pain at all
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | my husband did Keytruda just a few months ago. No pain. no side effects. wouldn't have known he was doing chemo and Keytruda at all.
Spouse of 58 yr old with BOT cancer Stage 4a HPV16 positive 3 chemo treatments cisplantin 35 radiation treatments 7000 cGy former smoker/chewed tobacco for 38 yrs. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
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