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

Alysha, others will know more than me about the issues your sister is facing. Christine will be horrified that she has been "allowed" to lose so much weight. I just want to say best wishes to your sister. Totally unfair to get tongue cancer so young. I also commend you for your comprehensive understanding of your sister's condition and your ability to tell her story so eloquently. I'm sure there will be people here who can identify with some of her problems. I didn't have the chemo with my recent treatment but radiotherapy alone made me feel sick.

Best wishes for the appointment on Monday. Be sure to express there what you have said here. Sometimes you have to get emotional for doctors to take you seriously. By this I mean that there is a sort of medical wall you have to break through sometimes to make them realise that you've had enough and you want them to have a big discussion amongst themselves and come up with some new measures.

Hello Alysha, my husband had radiation, no chemo but developed an infection 3 months and 13 months post radiation. Each time my husband got an infection the first symptoms where:
Thightness
Pain
Sick feeling
Progressive Swelling
Fever

We were told that post radiation Stephen would always be prone to infections so when the first symptoms start we head to the emergency. We get administered and he is then set up for a week of IV or combo oral antibiotics.

Kayla has lost an outsdanding amount of weight. Her immune system and nutrition are probably down. What are her hight and weight at now? I would not wait, I would go to the hospital and get more tests done and get her nutrition in ballance. Sorry to not be any more help.

I will seek advice from my brother in law, he is an obstetrician/emergency doc not a specialist but has some experience working with cancer patients as well.

Sophie

Welcome to OCF! Thank you for taking the time to thoroughly explain your sisters history. She has been thru so much. Luckily she is young and should recover from everything slightly easier than an elderly patient.

The weight loss is one of the reasons she is feeling so bad. She hasnt just lost weight, she also lost muscle which can become a bigger issue. I completely understand your sisters situation. Ive been down that road myself. It quickly becomes a viscous cycle where the patient feels nauseous so doesnt eat and drink which turns into becoming dehydrated and malnourished making them feel even worse. In order to help get your sister back on track, besides taking meds she must increase her intake. I know its next to impossible with the nausea and diarrhea. She should have anti-nausea meds and take them around the clock, even if she feels she doesnt need them any longer. When the nausea, throwing up and diarrhea starts its so hard to get anything to stay down.

Her daily intake needs to be at least 2500 calories daily and 48-64 oz of water. Since her weight loss is so much, she probably should be taking in even higher calories like closer to 3500 a day. You didnt mention a feeding tube. Im surprised this wasnt insisted upon when she began to lose so much weight. There are short term nasal feeding tubes that could have been inserted right in the doctors office. If she is still suffering from the nausea, diarrhea I would ask about this at the appointment. She should not go alone to these appointments, someone needs to advocate for her, especially in her weakened state. Im very concerned about the diarrhea. Everything that comes out needs to be replaced. If she isnt able to keep meds down then the doc should be prescribing diarrhea meds that come in suppository form. Ive had this happen to me and was admitted to the hospital for a week due to non stop diarrhea which led to malnutrition and dehydration (like your sister, this was after treatments ended).

I really am shocked at how much your poor sister has been thru! Nobody should suffer like this. Being relatively young for oral cancer and then to go thru such terrible side effects just isnt right. She is lucky to have you as her sister to help her. We are here to help you both get thru this.

Im also sending you a couple private messages (PM's). Look for a tiny flashing envelope next to the "My Stuff" link and click on it.

Welcome Alysha. Your sister has been through a lot, more than most. She is very fortunate to have such a caring and involved sister. She really needs your support now since she is so down. physically and mentally. Please keep us posted and we'll offer our opinions and experiences to help you both.

Don

Hi Alysha, here is some friendly advice from my family. Hopefully some of this might come in handy:

"Not sure emergency would accomplish much--sounds like Kayla's been there a lot already. For nausea, there are lots of meds:
ondansetron (usually one of the best),
metoclopramide,
ginger (boiled as a tea or eaten or in capsules),
dexamethasone (a steroid, used short term, often helps with pain),
haloperidol (an old anti schizophrenia drug used at small doses), are are all usually effective options.
But with bad mucositis, and chemo and radiation and surgery and c diff and antibiotics and pain, it is not surprising that there would be this kind of trouble. For the C. difficile, she could look up how to do her own fecal transplant from ideally a loved one who did not live under the same roof, although ideally, that would be done via a scope (you can take someone's poop, blend it with saline, and give it via an enema at home, but it may not get the good bacteria high enough to eliminate the c diff. (That ofcourse is from a family member with no communicable diseases)

The other options are acupuncture and pot, although pot is not ideal if you have mucositis and cancer in the head and neck.

Btw, this is more normal than Stephen's experience. It often is this bad, sadly! But it depends on what is primarily causing the nausea--the cancer? The chemo? The infection? The radiation mucositis? The c diff? The antibiotics? The fatigue? The pain? The mood? The taste? Swallowing blood? Bowel troubles? It really depends..."

Wow...
Well.
That's a shit storm... is she at a CCC?

That's always my first question. The fact that she had to travel makes me think she is, but the fact that this infection got to the point it did makes me wonder. She's very vulnerable due to the disease process itself plus the treatment. Whenever you have an open wound combined with radiation and chemo there's a very high possibility that infection can come into play particularly because her immune system is so compromised.

They need to get her infection under control. They need to stay on it. Sending her home may be their answer, but your family needs to be in their face DAILY. Making sure the are aware of what is going on with her.

Sometimes its easy to hand the reigns over to someone else thinking that they know what they are doing, but out of sight out of mind.

Sounds bad - but the squeaky wheel gets the oil. Your family needs to be SQUEAKY.

On your end she needs to bump up her nutrition. I know she is likely having trouble drinking and food sucks and taste sucks nausea is pervasive etc...

I know it's easy to give her ensure or whatever they recommend. But she needs more nutritional help. Buy a good quality protein, mix it with fresh juices and fruits add greens, peanut butter, flax. Whatever is healthy you can even blend in a multivitamin and some vitamin D, Vitamin C. She should have this a few times a day on top of whatever liquid nutrition she is taking. (personally the liquid nutrition you buy at the store serves it's purpose but its also full of sugar and artificial crap that is NOT healthy at all.

Fresh greens or even a green poweder (vege greens? Greens plus? Vega with greens) all of these are a great base for a smoothie. Then toss in fruits, etc...

She should have a deluxe waterpik. She can use it on the lowest setting with the tongue scraper and she should use it after every meal and after she has had anything other than water in her mouth. A thorough gentle cleaning will help her heal and prevent a recurrent infection.

Also septicemia can be DEADLY. She needs to really bump up her immune system and if symptoms persist she needs to be treated until they are gone.

Cdeff - is contagious to others too.

She's young. This disease can be highly aggressive in young people. And sometimes infection out of control can be just as deadly if they don't stay on top of it.

hugs.