Hello everyone,

My name is Alysha and I am new to this site and new to any support forum. October 2014 my 23 year old sister Kayla was diagnosed with stage four tongue cancer that metastasized to two lymph nodes in her neck. About two to three weeks after the diagnosis and three days after her 24th birthday my sister underwent surgery where she had the right half of her tongue removed along with all 112 lymph nodes from her neck. They gave her a trach and made her a new tongue with the blood vessels and skin from her left forearm. Surgery took a total of 12 hours and she was in the hospital for a total of 8 days where she had to relearn how to talk and eat with her new tongue. But she did great after surgery and then we met with the surgeon who told us that the cancer tried to invade the nerves in her face and was also only found in the two lymph nodes but was extracapsualar and was trying to bulge out into the surrounding tissues. So he suggested chemo on top of radiation and was to be started 6 weeks after the surgery to allow her body to recover.

Well she did not start treatments until 8 weeks post-op because she was a candidate for a clinical trial or experimental drugs but because of the delay in treatment and them messing up by sending the wrong labs and biopsy specimen my sister opted out and started the basic Cisplatin and would get three treatments of it ontop of 6 weeks of radiation. So 8 weeks post op she finally started her treatments. Radiation started first and within the first few days she had gotten exhausted pretty easily and the first chemo was not that bad. About a week and a half into radiation she developed mucositis and her had pretty severe pain. After her second chemo treatment she had hit a wall and developed pretty severe nausea and vomiting ontop of severe pain where she had to be admitted to the hospital for a week. They finally gotten her pain under control but she had the nausea and vomting, at that time she had already lost 20 pounds since surgery due to the lack of nutrition related to the nausea and vomiting but the doctors did not want to put a feeding tube in because they did not want her to lose her ability to swallow. She was discharged home and still had the nausea and vomiting but improved so they continued the treatments and she finally finished them.

As of Feb. 17, 2015 she had her last radiation and chemo, and we were excited as could be since she would not have to drive an hour every day of the week for radiation and she could finally rest. Well they decided she had to still get daily IV fluids at the hospital. About 3 days later she became very lethargic barely able to keep her eyes open to respond to a text message and became so weak where she could barely walk. She went to the hospital where they pumped her full of IV fluids and did a CT scan of the face due to the right side of her face becoming swollen. they put her on oral antibiotics and sent her on her way home since she would have to follow up the next day anyways. The next day comes around and she is worse and ontop of the lethargy, weakness she had begun vomiting again. Once we arrived to the hospital she gets her IV fluids and starts to develop a temperature, after talking with the radiologist he suggests to admit her. Upon this admission they do some labs and the next day they confirm that she had gram negative bacilli in her blood and she became septic which they believed to be caused by her infected parotid gland. Well she was in the hospital for over a week and received IV antibiotics and then developed diarrhea. They finally discharged her and she would continue the IV antibiotics at home and decided since the diarrhea persisted at home for her to send a specimen to the hospital. Well after she sent her stool to the hospital they confirmed that she had developed C-diff and they put her on more antibiotics which made her even more nauseous. She finally completed all antibiotics about a week and a half ago, but her nausea and vomiting still persists.

Sorry for the novel I just wrote, I thought I would provide her background story. I am just wondering if anyone else had experienced severe nausea and vomiting? My sister is a month and a half out of treatment and is still struggling. She has lost almost 50 pounds within this time frame and is having a real hard time with everything. She has an appointment on Monday with her oncologist and we are getting frustrated because she has seen very little to any improvement. Granted the pain is better at times but the vomiting causes more pain. Any advice would be more than appreciated.

Thank you,
Alysha