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 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 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