Hi everyone,
I'm a mid sixty year old facing something I thought would never happen again, especially after a negative bx in 2008. Six months ago I was having soreness midway on the right side of my tongue. A concern because of previous history. My ENT physician thought the problem was from my teeth rubbing against the tongue, my dentist checked and determined it wasn't....back to ENT and a round of antibiotics and triamcinolone. Soreness became worse and lump in neck appeared. Biopsy results last week of recurrent cancer was quite a shock.
Now facing possible removal of half my tongue and free forearm flap. Scary to say the least. Also, removal of all mandibular teeth for later radiation therapy to both sides of neck.
Physicians and staff of Tumor Board at local hospital were very thorough with facts about treatment but would appreciate patient experiences and advice.
Welcome to OCF! You are in the right place to get info and support from fellow OC survivors and caregivers. If you can get a second opinion at a comprehensive cancer center that would be a good idea. Let me know if you need the list and I will look it up for you.
Twelve years later a recurrence. That's terribly bad luck.
The surgery is doable though as I've had the forearm flap procedure twice. Hemiglossectomy allows speech and eating to proceed in a near normal manner. It's no picnic but after a couple of weeks on both occasions I was feeling well again. The worst part for me in the tongue surgery was the uncomfortable tracheotomy. On a more positive note, you get intensive nursing care with a trache and it's all over in a week or so.
Wishing you well.
My husband just had about 1/3 of his tongue removed and a free forearm flap repair in July. His least favorite part was the tracheotomy after the surgery which was in for a couple of weeks. They followed surgery with radiation and chemo which we finished in September.
It was hard (really, really hard some days) but, the swelling is coming down now and he is speaking and eating well. Some taste is coming back too. His speech is different, but I have no trouble understanding him. He takes longer to eat than he used to as well.
I know when you are looking ahead it seems overwhelming, but just take it one day at a time...and sometimes one hour at a time. Soon you will be looking back at it and on you way to recovery.
One month post hemiglossectomy, removal of two positive lymph nodes with forearm free flap graft, removal of lower teeth, ng tube replaced by PEG in the past week, trach remains in place, I had a positive experience with hospital staff. Tomorrow I begin 6 weeks of radiation therapy 5 days/week with adjunctive chemo 1 day/week.
My tongue remains swollen. The doctors have said that my tongue will reduce in size by the end of radiation. Has anyone else experienced this? Speech therapy is not scheduled until the end of March.
I practice swallowing with 10 spoons full of thick pudding or yogurt, etc. 3 times a day. I am trying to maintain water and caloric intake but it becomes a bit too much on some days. I consume 7 cans of Jevity 1.5 daily and try to keep my water intake near 64 ozs. I am having difficulty in adjusting these throughout the day. Does anyone have advice on how to best manage this.
Thanks for any feedback.
on the diet - you are doing amazing. you can back off 16oz on the water. 64 is more than you need.
[quote=donfoo]on the diet - you are doing amazing. you can back off 16oz on the water. 64 is more than you need. [/quote]
An instant 25% reduction in water is not sound advice. The body doesn't adjust quickly, especially when under extreme stress.
Water can't hurt really (more bathroom visits..) I drink a lot of water daily.
Rads will not be fun but you will get through it. My tongue took a while to deflate even after rads... but a few years out its much better (almost normal)
hugs and welcome. Look up rads and see what you are in store for it helps to plan in advance for the worst and hope for the best...
Pay particular attention to the comment about the brain adjusting to water consumption. That is exactly why you wouldn't suddenly cut back, especially during treatment. You prevent the body from being able to function efficiently while processing the waste created by the toxicity of the treatment. The lymphatic system starves and even eosinophils can't carry dead cells through the blood.
Add to that the necessity of muscles and joints to maintain fluids, especially during treatment, which results in pain.
4 liters in an hour would kill just about anyone.
That does seem a bit excessive, don't it.
Regular fluid intake or hydration is about 6 glasses a day. Drink when you are thirsty, and add a bit if you are falling short. The problem comes when people drink coffee and tea and juice then try to add 8 glasses of water. It's all liquid. The jevity is a liquid and a food source. I would ask the dietician if it is considered both in terms of numbers.
Your urine is the true measure of adequate hydration. Always note the color. Clear is overhydration, darker is dehydration.
I had occasion to read recently that in addition to urine color, infrequent urination, dark, concentrated urine and/or constipation, signs of not drinking enough water may be:
Fatigue and/or mood swings
Hunger even though you've recently eaten
Back or joint aches
Dull dry skin and/or pronounced wrinkles
I also found out that as one ages, the brain signals that indicate you are thirsty slow down so that you may not realize you are thirsty even though you are, so it is a good idea to keep track of how much you should be drinking especially when recovering from oral cancer and radiation.
remember meds effect urine color. I am one of the most hydrated people known to mankind (not kidding) I take circumen in the morning and my pee is bright yellow...