Hello LMTU (and hello to all others been a bit since I have posted but felt the need)

I am sorry that you are going thru this however I am glad you are reaching out to this site - doctors - and doing research. My father had quite a large tumor on the base of his tongue that was stage IV and had spread to his lymph glands. I have read Dr Joshi's posts ( a GREAT doctor!!) and your link as it makes since to me since I did hours and hours of research to help my dad.

I think the link you posted is the way to go. Obviously you must go on the advice of your doctors BUT my dad had 7 or 8 weeks of chemo - cisplatin - once a week - took about 6 hours - and at the same time had radiation for 15 minutes a day for 5 days a week for a total of 33 rad treatments.

These medications take their toll but the tumor not only shrank but he now has no evidence of disease just as teh link you posted suggested - no surgery needed even though the tumor was extremely large to start. The key is to get plan of action as soon as possible!! get prepared and do your homework!! My dad was scared beyond belief but he stayed tough - should you go this route I would be happy to send you several tips I learned from this board and other place that made his life better. He is ten months out now and still has some saliva and taste but issues but is sooooo happy to be alive and no surgery. Stay in touvh and keep learning!!!

Hi Helping Dad

It's great to hear that your dad is doing so well.

May he continue in good health!

Julia

Hi Guys yesterday, I have had it confirmed it is Squamous cell carcinoma, about half the base of my tongue. And I have a very swollen left lymph node now the size of a small walnut and aching.

The doctor says if I have chemo and radiation I have a 50/50 chance of surviving past 5 years, I should really have all my tongue cut out, but hopefully I wont need it, if the chemo/rad works.

So I have no idea what to expect now, any one else lived through similar, what I do now, from reading these forums, I’m going to hell and back with this treatment, so I do hope it does work, after all that .

Please Help with any advise you can give me?

Kind regards Jon

Hi Jon........I also had the same as you. My glands were all swollen so after my biospy they removed over 50 lymph nodes of which 2 were cancerous and then came the roller coaster ride without the fun. At the base of the tongue a chunk was removed, 26 radation treatments (too weak to finish any more) two months after that I had a peg (stomach feeding tube), 3 weeks in rehab and now am a survivor. Two weeks after Christmas will be 4 years since what I call the big operation. Yes it is to hell and back but first you have to stay calm because it is a long process and to panic is not good, stress is not good. At this point I no longer talk like Donald Duck, the feeding tube was my life line for 2 years and 2 months, I have taste buds that change from minute to minute, very little saliva along with dry mouth. I could go on and on but many people on this forum have gone through much worse. Jon, we're HERE to tell out stories and try to help each other. It's like climbing a ladder, one step at a time. There was a time when I couldn't swallow water now I'm eating quite a bit but just have to be very careful and eat slowly so as not to choke. Radation did cause me lose 29 lbs which I just cannot put back on but little by little they'll creep on. So, one step at a time and we're all here for you so don't hesitate with any questions. You'll do just fine. Oh.......almost forgot ya better be ready with the humor gene cause you're need lots of it along with the positive attitude.
Best of luck to yo...............Joan P.

Hi, Joan P well I am about to go into this Roller coaster ride I don’t know how it’s going to affect me as I live and work in Thailand I have no idea how I’m going to work with this treatment but if I don’t work I don’t have money here even though I love the work country and could not get work in my own country as I went bankrupt in my late 50s so I a friend was working here and I got a job so easy and just love it have a wonderful house in the country and life could not be better even though I have always had a good life apart from the early 2000s but that is over now this.

I’m trying to get as much information and buy what I can in readiness for this night mare treatment I’m going to go through I hope I pop out the other side in one piece keep chatting and let me know how things are with you.

Kind regards Jon

Well my day has arrived I start treatment on 31st october what do you think i will start with as far as discomfort ic an get ready for


Do you think I will be able to work also with this treatment i have to spend a week in hospital for Chemo do you think i will be to weak to work after that does the nausea medicine work ok, what one do you think is the best you used.

What do you think i should do have a PEG tube or not.

Dear LMTU, I'm sure you will come through this. God bless and best wishes for the future.

Regards David.

Hi LMTU

Whether and how much you'll be able to work really depends on how you respond to treatment. The same goes for anti-nausea meds.

To PEG or not to PEG? That is the question, and it's probably best answered by your doctor.

Halloween sounds like a horrible day to begin treatment. I hope everything turns out well for you.

Julia

LMTU,

By the time you read this you will have had your first treatment. I hope that all went well.

Just speaking for myself, the nausea medicine worked very well and I never experienced the vomiting and dizziness my Mom went through in the '80s during chemo; unfortunately, I can't remember the name of whatever it was that I took! The chemo I had was probably far less intense than what you will be experiencing (mine was once every three weeks for six sessions) and I never had to be hospitalized. I wasn't working at the time and think that I probably could have for the first three sessions but not full time during the last three. Chemo has a cumulative effect, so each session is adding more chemo to that which you have already stored up. (This was for breast cancer. I didn't have chemo with tonsil cancer.)

Your doc should be the person to advise you about having a peg.

You seem to be very happy in your new community and I hope you've made a few new friends who will look in on you when you get back from the hospital and treatment.

Best of luck to you,

Mimi

quote:

Originally posted by let me tell u:
Well my day has arrived I start treatment on 31st october what do you think i will start with as far as discomfort ic an get ready for


Do you think I will be able to work also with this treatment i have to spend a week in hospital for Chemo do you think i will be to weak to work after that does the nausea medicine work ok, what one do you think is the best you used.

What do you think i should do have a PEG tube or not.

I can only address the nausea. my regimen is:

1. one DEXAmethasone 4MG tablet 1 X a day for 3 days starting 12 hours after each chemo treatment. Note: 1 pill a day for 3 days & that's it for this one.

2. one ONDANSETRON HCL 8 MG tablet, every 6-8 hours after chemo or as needed. Note: i usally take for about 4 days and maybe on the 5th & 6 days i take one at night just to make sure i don't wake up with nausea. during the time i have used this drug one time i stopped it too early. didn't think i needed it, but all of a sudden i realized i needed it bad. i was using the tablet which dissolves on your tongue and in a matter of 5 minutes my nausea symptoms were gone. i told my doc that this has to be a miracle drug...... it's expensive... about 50 bucks a pill in the u.s.


good luck.

Well today was the day for my team of doctors to have their planning meeting, and how they are going to cure me with the minimal invasion of my salivary gland s and voice box and other healthy areas.

They have now made their assessment of the treatment and seem quite happy they can cure the problem, even though it seems to be quite a fast acting Mass from my Lymph Gland, they say that can be good as it’s the slow growing ones that are not so easy to secum to the treatment.

First I must have a few days in a private room for softening up the mass and then monitoring how it is responding then start with the radiation.

All in all I am more happy now as you can imagine when I started down this road, you think your dead or very near to it, but I think I can live with an 80% chance of living.

I also met some survivors as they have a sort of survivors club on a Thursday and what a treat to speak to other, who have gone through the same as me and a lot worst, some of them with more than 5 years well and free from any new signs of danger.

So I have now given them my half a million baht and hope they don’t want to much more after, at least I get a very nice suite for the money.

So I’ll let you know what happens next, what the doctors did say, is they will be aggressively attaching the Tumor and then giving me a lot of extra Drugs, to make up for any nausea or Pain, as my one worry is that I cannot talk and I am able to continue life as much as possible.

At the moment all the wonderful plans and diner parties, I had planned for Christmas are on hold, as this will be the end of the treatment and it can be a difficult time, we will see as they said every one responds differently.

I’ll keep you informed Thanks for giving me an ear to speak to. Going down this unknown river without a paddle

This message has been edited. Last edited by: let me tell u,

Good Morning John,
It is good to see that you are taking a more positive attitude to this problem, when you were feeling very low I told you that your glass was half full not half empty, do you agree with me now?
The survivor's club is a good idea, you will get a lot of help and encouragement from the other members. Many people who have survived a serious illness are very gratefull for the help they received when they were feeling bad and when they start to get back on to their feet again want to repay the debt by helping those who are "entering the pit" this is why your suvivors club and this foundation have many willing members.
Keep us posted John and I hope the treatment goes well.

Keep Smiling

John

Hi all,

Well I have endured a week of Radiation so far, not to bad apart from the mask and you feel sick after it, so I have ask the doctors to change my nasea tablets, trouble it the new ones are 500 each, I took 10,X 5000 baht, I was taking 2 a day though, so something else to add to the growing bill, to see how they will make me stop feeling sick and they worked, a friend took me to Sizzlers yesterday and I was able to eat all put in front of me, there was 3 of us and I picked up the bill 550, I would have never of thought to not go off the menu, only eat the soup and salad, they next time he said we will have Fish and chips for 169 each, including all you can eat, salad and soup, wonderful and tasty, I can tell you especial if you don’t feel like eating and drinking.

See what this week brings.

Hi all,

Well I have endured a week of Radiation so far not to bad apart from the mask and you feel sick after it so I have ask the doctors to change my nasea tablets trouble it the new ones are 500 each I took 10, 5000 bhat I was taking 2 a day though so something else to add to the growing bill, to see how they will make me stop feeling sick and they worked a friend took me to Sizzlers yestoday and I wa sable to eat all put in front of me there was 3 of us and I picked up the bill 550 I would have never of thought to not go on the menue but eat the soup and salade they next time he said we will have Fish and chips for 169 ear including all you can eat salde and soup wonderful and tasty Ic na tell you especiall if you dont feel like eating and drinking.

LMTU,

It seems like it all came together quickly. Great news!

You're eating and going out and have friends that care about you. Lucky guy! Maybe someone else can explain to me why you feel sick and nauseated after the radiation treatment. Is it fear, something psychological, or does the procedure produce nausea in some way to some people? I ask this because it's something I never felt. Radiation (to me) was painless; it's what it damages within the mouth that hurt later in the game.

I love the fact that you're more upbeat than before but sorry that you have finances to contend with. Your friends really don't expect you to buy them meals and there's no reason for you to offer. It seems that you have buddies that will be there for you when you need it. Allow them to do so. It appears that they're good people who have found a home away from home and who have built a camaraderie with other expats. You'd do the same for any of them! Please - take care of yourself first. It sounds as if you're going to make it through this thing and have good solid hope for the future, but the interim might be rocky. You can do it!

Take care,

Mimi