They can prescribe most medicine in liquid form.

Katy, forgive me for being intrusive but I am going to add my voice to BrianPK's and urge you to get a PEG. I am worried about you. Things are about to get a lot harder, and choking and nausea can't be overcome with any measure of willpower.

Extra weight does not protect you from a potentially fatal nutritional crisis.

I had plenty to lose but a week AFTER treatment, I was hospitalized for 8 nights with complications secondary to malnutrition. I had been unable to keep food down for 32 days and was in serious condition. They tried an NG tube, but within hours I vomited so violently that I discharged the tube. They installed a PEG as an emergency procedure, but I couldn't even keep PEG feedings down. So they installed a PIC line and fed me intravaneously until I stabilized. By then my potassium, blood salts etc. were so compromised that my heart and kidneys were at risk. It is an extremely dangerous situation.

Another serious consequence is that patients in nutritional crisis are often unable to complete their treatments.

The PEG is a temporary measure that can be a lifesaver. You will lose weight anyway, but you will do it safely and without risking your treatment. Please think about it!

If you do nothing else, please ask for a referral to the cancer center's nutritionist. Tell him/her exactly what is happening and ask for help.

Lynn

Just checking in with you all again. I have been able to start eating solids! No weight loss at all, I have maintained my weight. I am doing very well, other than the place in the back left of my tongue. We did a CT with contrast yesterday and I go back next Wednesday and Thursday to the surg and radiation oncologist. We will discuss whether the place is another tumor, or trauma from surgery. He might end up doing a biopsy, which will be surgical as it is beneath the surface.

Prognosis is I would lose my tongue if surgery is necessary since I am already missing most of the right and he would be coming from the left. He would need to cross the arteries. We are discussing radiation only and the success from that, or possible chemo w/ radiation if they do not feel radiation alone would get rid of the tumor and any small cancer cells remaining.

I do not know what most of this really means. I am processing the info and trying to wrap my head around losing my tongue or my hair. So many different things going through my head.

ETA: It took me ten days before I could eat solid food, I am up to about one full meal per day of solids. Everything else is Boost, Ensure or pudding. I have been drinking a ton of water and Boost so have been able to maintain my nutrition until I was able to swallow better. It is definitely possible to strengthen your muscles enough to regain swallowing ability. It was difficult, but I worked hard to make it happen. It really isn't easy still, but if I want something other than Boost I have to push through and make it work.

Outstanding Katy - your determination is noticeable and I applaud your results. Best of all you seem to be not letting the upcoming tongue surgery bother you psychologically. Your load would be weighing heavily on many, but you seem to be staying above it.

I know Christine will be especially happy with your weight maintenance. For her weight loss is a big thing.

Keep up the spirit, your positive, can do, succeed over all difficulty attitude is very motivating to all of us.

Tony

Thank you, Tony. I try not to let it bother me too much. Truth is, I break down sometimes, but my husband is amazing at having my back. He's truly been my rock through this. After two partial glossectomies and the neck dissection, I think we can make it through almost anything. I'm scared for radiation and the possibility of chemo, but I'm going to keep on pushing through.

I was so determined to eat. I did so good with the Boost that I kept thinking, I bet if I tried hard enough I could swallow something solid. It has to be foods that will go straight back, anything that is mushy just got stuck. I found a way though and I have ate burritos, hot dogs, steak fries, etc. Things that are kind of bulky but you can cut into tiny bites to make swallowing easier. It truly helped me and has been what I needed to maintain my weight. I've had more of an appetite the last three days than I did the first ten.

I hope I can be as strong and persistent once radiation starts.

I am so grateful for this group. I have learned so much information I would not have even thought to ask before.

They have mentioned the PEG, but only if I were not able to keep my own nutrition in control. If something happens that I'm unable to eat or drink orally once radiation starts, they will go ahead and PEG me. They do want to give me the opportunity to try first though. I'm very aware of myself and will be sure to keep close track of my health.

I thank you all so much for the support and welcoming me to the clan. Not a place any of us want to be, but I'm glad there's somewhere for us to be together.

I am concerned about the possibility of losing my entire tongue, does anyone have experience with this? What does it mean? Can anything be done to repair or replace the tongue? I know it essentially kills it so obviously it would not regrow or ever work again. I just cannot wrap my head around this possibility.

Hi Katy,
I see you are scheduled for radiation treatment. Hopefully , that's all that you will require. Try not to worry about whether any other surgery may be required in the future. A total Glossectomy is the removal of the entire tongue. This type of surgery is a last resort or salvage surgery for a recurrence of tumour.
You are no where near this.
Prepare yourself well for the radiation,I'm sure you will have read up and been given lots of advice already.
Don't worry about things that may never happen.
Kris and I have walked that particular road.
Take care,
Tammy

Katy,

Stay positive and push hard to keep in play the option of being treated with radiation and chemo rather than the surgery.
Treating cancer is a lot about a balance between killing the cancer and quality of life. You are so young that QOL issues are likely given more weight but you just need to be 100% all the options have been laid out and you are comfortable with the road ahead.

Best wishes
don

Thank you very much for the info.I'm pushing hard for radiation, or chemo plus radiation. I definitely don't want to lose my entire tongue if I don't have to. I should have more information Wednesday. I hate how the waiting makes the days feel like months. Nothing about this journey has been quick or pleasant. I'm thankful for all of the support and information.

There we do have a woman here who's had a total glossectomy she is doing insanely well, can taste and talk - hopefully this isn't necessary though. Hugs and good luck.