MarvB, l’m sorry your wife is having a hard time. It is sometimes hard for caregivers because one feels so helpless. I don’t know how many radiation treatments you’ve had, but is it possible that the swelling in your tongue is a reaction to the radiation since edema is a side effect? Head and neck cancer is tough, my husband had dehydration, developed deep vein thrombosis in both legs to the extent that he was unable to walk for a time, as well as swallowing problems. It was, indeed, one thing after another. We (I include both John and myself because I wanted to fight the battle by his side) persisted. I was very conscious that we needed to make new memories. It brought us a whole year’s extra time and I dare say it could have been more if John had heeded the advice of the speech and language pathologist diligently. In that time, immunotherapy went from a Stage 1 trial to being marketed. Although it did not help John, I’m proud of the fact that we contributed by taking part in the Stage 1 trial. John saw a therapist all that time and I would like to think that he got the support he needed to go through some of the more harrowing moments during the treatments. I hope what I am saying can help to give you a slightly different perspective. I have you and your wife on my mind,


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.