recovery

kattie

My husband finished 8 weeks of radiation with once weekly chemo the first week in December. He was diagnosed with a tumor on the base of his tongue and one lymph node involvment at the end of August. He has feeding tube and din't lose much weight. He still cannot eat, however. Around the first of January he developed a fugus which the doctors thought was thrush. Nothing has cleared it up, so an infectious disease doctor has changed the medicine to one commonly given to HIV patients who have fungal problems. My husband is getting more and more discouraged. As am I. Are we expecting too much too soon? How long has it taken other people to begin feeling good? We'll probably have the first pet scan this month. That's scary too. How do you handle it all? We pray and we try to stay strong, but it's a constant worry.

snickie

Hi,I've had cancer on the base of my tongue and lyph nodes as well.Last year. Had chemo and radiation and in Nov had a neck dessection. I've had a feeding tube as well,for about 3 months I guess. Eating takes time. I still do not have all my tastebuds or saliva glands back. My neck dessection cause more problems with eating. I've lost alot of weight but am steady now. It's probably been....4 months since the tube. I have found organic food to be the best but I'll still eat whatever I can so I do not loose anymore weight. I also had to deal with thrush! Even with medicine the durn stuff didn't seem to go away. The dentist might help with that. It takes time to heal. I'm still in the healing stage but I'm also working. Chocolate tastes bad can't eat anything acidic,no sodas and of course it's still hard to swallow. Physical therapist should be able to help with that. I'm at work and have no computer at home and it's time for me to go but,I'll get somemore info to you. I can't remember the gargle I use but it helped a bit with the thrush and it helps with dry mouth. I'll get the name for you. I'll keep you in my prayers.

snickie

Hi katie, It's me again. I have some info for you hope it helps your husband. Try biotene to gargle with,it's not too stringent and helps a bit with dry mouth and thrush. My dentist suggest I use Prodentx for my gums and that helped a bit with the thrush as well. I take a vitamin,Lysine (not sure on the spelling) which is for mouth and throat. If your husband is allowed to take it you can find it in any grocer or drug store. Keep a chin up hon,it takes a few months to heal. I found changes each month,not weekly. I have a lot of faith and that is what gets me through. Also,for me,if I do not expect the best and try not to think of the worse. My last pet scan (January) showed the cancer to still be present but very,very tiny and it had not spread. Take what you can.:) Try to find something to do when he has the strengh-a trip to his favourite store,rent a favourite movie something that use to be normal before all the headaches. For me that helps a bit too. My blessings for all of you.

Sdawe

Kattie: My husband was diagnosed with base of tongue cancer and had surgery, reconstruction, and 7 weeks of radiation ending June 7 this past year. His recovery did not seem to begin until 10-12 weeks after radiation. He kept his feeding tube for 12 weeks after he finished and eating is still a challenge but has gotten much better. He has lost 35 pounds (small guy as well)but he eats a lot differently than he did. When they told us 6 months after treatment to feel some normality they were correct. He uses all the Biotene products, takes Salagen for saliva issues and with time has come to feel somewhat normal again. The first Pet Scan was read incorrectly which put us in a tail spin but turned out to be nothing. The surgeon said each Pet Scan was a chasing the tail episode because it is so sensitive (but of course necessary). Please let me know if you want to talk off line with any detail....it is quite a journey and if we did not have help would have struggled more. Take care, Suz

oneburns

Kattie, my husband just finished radiation the last week in Dec. of 30 treatments and one large dose of chemo weekly,then sent home with a pump and chemo for the duration of radiation. He had 7 days of round the clock chemo to start, home one week, dehydrated,and back in hospital for four weeks. He has feeding tube,port for chemo. He had a scan in Jan. the tumor was shrinking,and one next week. Four months I have feed and he tries to eat and says it is terrible. He had a nasal cavity tumor which the Dr. said is very rare,but it had eroded bone and the cranium before it was found. I know how worried both of you are as we are living the same experience. Time just seems to pass on bye very slowly. My husband sleeps a lot and that is a worry also, along with the dry mouth and eyes watering as they were affected also. If I can be of any help to you,I will put you in prayers too.

alliecat

oneburns said:

Kattie, my husband just finished radiation the last week in Dec. of 30 treatments and one large dose of chemo weekly,then sent home with a pump and chemo for the duration of radiation. He had 7 days of round the clock chemo to start, home one week, dehydrated,and back in hospital for four weeks. He has feeding tube,port for chemo. He had a scan in Jan. the tumor was shrinking,and one next week. Four months I have feed and he tries to eat and says it is terrible. He had a nasal cavity tumor which the Dr. said is very rare,but it had eroded bone and the cranium before it was found. I know how worried both of you are as we are living the same experience. Time just seems to pass on bye very slowly. My husband sleeps a lot and that is a worry also, along with the dry mouth and eyes watering as they were affected also. If I can be of any help to you,I will put you in prayers too.

Hi there-
My name is Allison I am 37 year old 2 1/2 yrs ago I was diagnosed with tongue cancer I had a simple surgery to remove the tumor I was told all the margins were clear of cancer( don't ever fall for that).... my Dr in Wa DIDN'T recommend or suggest chemo or radiation 3 months later it spread like wild fire before I knew it I was having a neck dessection followed by 36 rounds of radiation and 9 chemo.
Yes it has been a VERY long road I was in and out of the hospital I couldn't swallow because of sores in my mouth and throat from radiation I had radiation burns that took over 1 yr to heal
I had a feeding tube I lost 35 Lbs and I started at 125 Lbs and eating was very difficult. I had phyiscal therapy plus feeding therapy I am finally feeling pretty good. I want you to know you can survive just stay focused and keep your spirits high you will make it through this don't ever give in or give up
God Bless!

Allsion K

windwalker

alliecat said:

Hi there-
My name is Allison I am 37 year old 2 1/2 yrs ago I was diagnosed with tongue cancer I had a simple surgery to remove the tumor I was told all the margins were clear of cancer( don't ever fall for that).... my Dr in Wa DIDN'T recommend or suggest chemo or radiation 3 months later it spread like wild fire before I knew it I was having a neck dessection followed by 36 rounds of radiation and 9 chemo.
Yes it has been a VERY long road I was in and out of the hospital I couldn't swallow because of sores in my mouth and throat from radiation I had radiation burns that took over 1 yr to heal
I had a feeding tube I lost 35 Lbs and I started at 125 Lbs and eating was very difficult. I had phyiscal therapy plus feeding therapy I am finally feeling pretty good. I want you to know you can survive just stay focused and keep your spirits high you will make it through this don't ever give in or give up
God Bless!

Allsion K

Hey all,
I am a survivor of testicular cancer but my friend has base tongue cancer and he is having problems with mucus in the back of his throat and getting it up...Is there any help for this? Oh, he has a feeding tube etc...
thank you for your time,
david