Hi badgolfer, I had the same diagnosis 11 years ago. the options were a six an half hour op or go home with a supply of morphine. He said I would not be able to talk or eat. I can't eat and my speech leaves a lot to be desired, but I still manage golf, angling and driving my sports car. Life is good and I have enjoyed every minute and hope enjoy a few more years. I am 82 and in not bad shape. I cannot understand when you may have no choice. Colin

Hi Marv

Thinking about you and hope your surgery went ok? Would love to hear from you when you can.

Regards

Carol 

Hi. Well, I had the surgery on May 17th. I had about 60% of my tongue removed, which was less than they thought would be. I had a flap made from the skin on my left forearm. I was in ICU for three days then transfered to an extended care facility where I still am until go home in four days. So far, the biggest setback is a damaged vocal cord, I can pronounce words fairly well but can only talk in a whisper and I run out of breath after about one or two words. I an still have a trach tube. They won't take it out unt could have I have swallow studies done. Turns out that your vocal cords help determine where things go when you swallow, They said that taking out the trach could cause aspiration. There are things that can be done to improve it but they want to wait on even temporary repairs for at least two months to see if it corrects itself. Has anyone else had this problem?

Thanks for the support. It made a big difference in helping me make my decision.

Hi Marv,

   Pleased that you are post op and only lost 60% - the same as me.

The Prof. that was my surgeon wanted to put a PEG i n after about 6 days - but his team got me

a reprieve for another 3 days. I found the trachea tube  annoying and in the night it would come out about 5 or 6 inches. I just pushed it back in.

  I preferred the PEG which is just as well as I still have it. Do you have problems saying words beginning with G?   Did they remove your soft pallet?  (the back of the roof of your mouth just above the tongue)

Was the flap added to your tongue. I know some people had reconstruction with their Ops.and all seem to be OK.

  I had very little mobility with my tongue after the Op. but has slowly improved over the years, I hope yours will be OK.

.

Really good to hear from you.

Regards

Colin

Hi Colin,

Fortunately, my soft pallet was ok. My flap was added to my tongue. They gave me exercises and I'm getting better at moving it around.  I can kinda stick it out now and I can move it from side to side and up and down. They said it would improve as the left side built up strength to move the right side. I don't have trouble with my K's but I tend to slur my S's. All things considered, I'm very happy with the way I pronunce words. People hearing me for the first time can usually under me even thouhg it's almost a wisper. 

Now, if I can get my one vocal cord moving, my speech would be about 80% to 85% as good as it was. I can only say a word or two before I have to catch my breath because the one cord doesn't move.

I do still have radiation coming up and realize that could cause further damage. As for eating, I'll be evaluated for that in the next two weeks. A lot depends on the vocal cord.

I was lucky enough to get one of the best surgeons around and to have a wife who's been right there every step of the way. I told her that I owe her for all that she's doing. She said my honey do list is growing by the day.

This certainly isn't something that has a quick fix and has no gurantees along the way no matter how well you think things are going. I hope things continue to improve for you.

Thank You,

Marv

Hi Colin,

Just wanted to update you on what's happening. I still haven't got my voice back yet. They're going to wait until after radiation to do the temporary fix if it hasn't corrected itself by then. And, I'm finding that my ability to eat isn't improving. I can still only eat very soft foods. My tongue just doesn't have enough mobility to move things around well. Also, My swallow is no where near as strong as before the surgery. I have to wash even very soft food down with water after a few bites. Eating is no longer a pleasurable experience. It's now a chore. 

As time goes on I'm finding that there are more adjustments to make than I thought  there would be but, I do have more ability than they predicted I would have. I'm trying to be more positive but find that there are times when I have a hard time doing that. Especially with radiation coming up. A lot of people on the boards say radiation did more damage than the surgery and that some of it is permanent.  It sounds like you have learned to adapt very well. You must be someone with a positive attitude about life. If you have any suggestions for preventative mesures to minimize the side effects of  radiation, I would appreciate hearing about them. 

I hope things continue to go well for you.

Marv

Hi Marv,

You have not long had a very invasive operation.  It seems to me that you are recovering from it at an amazing rate.  I would guess that within six months or so things may well be back to almost normal.

As you know , my surgery etc was eleven years ago. I am unable to eat at all and still sound like the village idiot. I am just happy to be alive.

The radiation therapy  (I had six weeks of weekdays - the last two weeks twice a day) was no problem at all. I also had chemo once a week.

You could get something like mild sunburn on the site, but that is no problem. During the radiation you feel nothing at all.  As I said before, if you suffer from mucus build up be sure to have a good cough up prior to the radiation as they bolt your face mask to the bench as you lie on your back.

Don't worry about the radio therapy its no big deal.

At the moment I am sitting here with my breakfast bag of liquid food going in via my Peg. It takes 1 hour. (its about the12,500th time)  Just be happy that your outcome is so much better.

Hope all goes well for you.

Colin

Hey Colin,

It was great to hear from you. well, I thought things were going well for me. I started having pain on the remaining side of my tongue and it was going up into my ear, It felt just like the cancer on the left side. I finally convinced me doctors to do a CT scan. It showed a tumor almost one inch by one inch in size that extended into the new part of my tongue and went into the back of my old tongue. This occurred while I was having radiation. They did a biopsy yesterday and found it to be cancer. The surgeon said he had never seen it reoccur or grow this fast. He said because of where it was, he could not recommend surgery. I talk to a radiologist on Monday about radiation and chemo but, based on what the surgeon said and what I've read, it doesn't sound promising. They said they don't know of any current clinical trials that I could try. The surgeon said, left untreated, I have about two months.

I'll let you knw what happens 

To anyone out there who has had this surgery and is still around to read this, count your blessings. Be greatful for each day you have.

I hope you continue to do well,

Marv

Hi Marv

 I am devastated to read your news and feel your pain,emotions,anger and frustrations. I will be thinking and praying for you and hope that your treatment will continue so they can extend yyoue life. I read that one man on here was given very bad news but then the treatment shrunk the tumour on its own and he’s still here,so there’s always hope

bless you 

from Carol

xxx

Hi marv,

   Like Carol I am devastated to hear your news.

My first thoughts are to try a second opinion. If the growth rate is that fast then action is required

right now. If you have to lose most of your tongue then life being unable to eat is not that bad and 

definitely better than the alternative.

   I find it hard to believe that the new growth has happened that fast. I was told my growth was

fast and virulent so they operated within two weeks. I had been in  a lot of pain (tongue,teeth and ears)

for about three months prior to the biopsy and confirmation that it was cancer.

We had been on holiday for three months in the USA and I had a biopsy there which came back negative

The doctor was unhappy with this but we were due to return to the UK.

       I hope they will be able find a course of action that will overcome their dire prediction.

  Our thoughts are with you.

      Colin

Hi Colin and Carol,

I got a second opinion. The doctor said pretty much what the first one did. That he would not recommend surgery under the circumstances. He described the surgery required as morbid. He too said radiation and chemo were my best options. I talked to a radiologist also and he said the same thing. I had a new mask made and they're going to redirect the radiation to focus on the new site. I'll also have three sessions of Cisplatin. They're eight hour sessions. Three hours flushing my system, two hours of chemo and three more hours flushing my system. It's to help prevent kidney problems and reduce nausea.

If I do nothing or the treatment doesn't work, one doctor gave me two months. Another gave me six months. I always thought if I heard something like that I would want to go out and do all the crazy things I wanted to do but hadn't. Instead I find that all I want is normalcy. I don't want excitement. I don't want adventure. I just want my normal, everyday life back.

Anyway, I'm glad you are doing well and hope you continue to do so. 

Marv

Hi Colin and Carol,

I got a second opinion. The doctor said pretty much what the first one did. That he would not recommend surgery under the circumstances. He described the surgery required as morbid. He too said radiation and chemo were my best options. I talked to a radiologist also and he said the same thing. I had a new mask made and they're going to redirect the radiation to focus on the new site. I'll also have three sessions of Cisplatin. They're eight hour sessions. Three hours flushing my system, two hours of chemo and three more hours flushing my system. It's to help prevent kidney problems and reduce nausea.

If I do nothing or the treatment doesn't work, one doctor gave me two months. Another gave me six months. I always thought if I heard something like that I would want to go out and do all the crazy things I wanted to do but hadn't. Instead I find that all I want is normalcy. I don't want excitement. I don't want adventure. I just want my normal, everyday life back.

Anyway, I'm glad you are doing well and hope you continue to do so. 

Marv

Hi Marv,

      Pleased to hear there is a plan of action for you.  As you are now aware RT is no problem.

 The chemo for 8 hours sounds exhausting. I hope you will be able to read or watch TV especially for the two flushing periods.

  I assume they will start the treatment immediately as the tumour is fast growing. I wish you

well and that the treatment will be successful .

 Colin

Hi Marv

Like Colin I’m so pleased to hear they are going to give you another course of treatment.

The chemo is a bit rough but it’s worth it.  I had Cisplatin with another drug, It made me feel crap the day after but I wasn’t sick due to the anti sickness meds so please take them regularly. Try and keep in touch when your feeling up to it.

I wish you all the best and the treatment will be rewarding.

luv Carol x

Hi,

My treatment starts in three days for chemo and radiation and I get a PEG tube in a week.  I also get a PET scan in a week to see if it's spread into other areas. I'm glad they're starting treatment soon. Unfortunately, I'm not getting positive feedback about the outcome from any of the doctors involved. They don't come right out and say they don't think it will work. They just say it could and it's the best alternative. About three weeks ago I was getting to the point where I could talk and eat semi solid food. Now, with the swelling and never ending pain from the cancer, I can't talk because it hurts so bad and soon won't be able to eat at all soon because of the swelling. I'm in more pain and worse shape now than I was before I had the hemiglossectomy.

I've heard that chemo attacks fast growing cells first. If that's true, then these cancer cells should be the first ones to go. The cancer now extends into the floor of my mouth and causes swelling on the floor. I can tell a difference in size from two days ago and it's spreading from the left side into the right side. The doctors I'm working with are all surprised at how fast this grows. It's almost a noticeable daily change. Since it grows so fast, I should be able to tell if the treatment is having any effect at a certain point in the treatment. The radiologist said that if it continues to grow during treatment after a certain point, then treatment isn't working and may be discontinued. The oncologist said he has seen that happen but in only a few cases. I asked if he had ever seen cancer  grow as fast as mine was. He said no. He's been practicing over 30 years. 

So, That's where I am now. For anyone who read this I hope everything is going well for you. 

Marv

Hi Marv

Wishing you all the best for your treatment. I know it’s going to be very hard indeed but try and keep a possible attitude if you can. That got me through and I really believe it helps your body deal with all the trauma better.

I’ll be thinking of you as I know only too well the journey you have ahead of you.

bless you Marv

Carol x

Hi Marv,

I agree with Carol - you must try to keep a positive attitude. Life without eating will still be 

 worth living.  At 82 I am hoping for a few more years yet.  

 I realise that the fight you are facing must be daunting, but life is worth fighting for and

 I can assure you will still be enjoyable.

 Our thoughts are with you.

 Colin

Hi Colin

Any news on Marv?

I just keep,thinking about him. Bless him,

Hope your well

love Carol x

Hi Marv

if your reading this I’d love to hear from you 

sending my thoughts and hugs

Carol x

Hi Carol,

            The first thing I do each day is look to see if there is any news from Marv

so I am as much in the dark as you.   But if the news is bad I can understand him not

wanting to put it in print.  I just hope there is some other OK reason.

Regards 

Colin

Hi Colin

its very hard not knowing but can only hope he’s just getting on with his treatment bless him.

i sent a friend request a month ago but no response to that but I’m sure he wouldn’t have seen it with all his stress etc.

take care 

Carol

Hi Carol and Colin,

I'm still here. I just finished chemo and, have a little over two weeks more of radiation. When it's over, I'll have had 39 radiation treatments instead of the original plan for 25.. They said the first for weren't being counted because they didn't target the new cancer area and,because the cancer was growing, they increased the dosage and added two weeks. The chemo was really bad. Though it was going to kill me. I ended up in the hospital because of it. I also found out that they can't tell if the cancer has changed with a CT or PET because of the edema from chemo and radiation was so bad they cloud the image. They said it would take about three months after treatment before a CT scan or PET scan would work. I reminded them that that was past the time they gave me to live if it didn't work. I didn't get a response. My tongue swells up past my teeth and I can't close my mouth. That makes me a drooling mess until the swelling goes down.It usually only lasts a day or two.   

On top of all this, we went to see my my 94 year old mom yesterday. Within an hour of us leaving her she passed away. She was in great health until about a year or so ago, then went down hill fast from kidney disease. Fortunately she didn't suffer much. My brother took care of her at his place until the end. I, unfortunately wasn't a lot of help.

I hope you both enjoy the holiday weekend assuming you're in the US. It keeps me from being on the road half the afternoon to get to treatment and back for three days. Instead I'll be shopping for some suits that fit. I've lost 55 pounds and really didn't need to lose it. I look like a stick figure with a big head. 

Anyway, that's where things are with me. 

I hope you're doing well,

Marv