Frightened for the future.

Hi There,

In July 2015, my husband was diagnosed with ‘squamous Cell Carcinoma’ at the bottom of his throat and spread to one lymph mode. As it is a very common cancer , his prognosis was good and were confident that it could be dealt with by radiotherapy and chemotherapy. As it was too near the voice box, they could not operate. After 30 treatments of radiotherapy and 2 bouts of chemotherapy. We were told on 8/1/2016 that the cancer was given an ALL CLEAR! What a joyous time and we were well aware that we were truly blessed. He had to go for visits and check ups, like everyone else for the next 5 years. His cough never went away, and we were told this was normal, when recovering from throat cancer. The check up still showed no cancer had returned. Then in March 2018, we noticed his cough was progressively getting a lot worse, we went back to the hospital, for an early appointment, as he thought he had something stuck in his throat. After a CT scan ( the first, since 8/1/16), they found that the neck and head cancer had spread to his lungs. At this stage, it was inoperable and terminal. The scan showed 4-5 sizeable lumps in total on both lungs, with a swollen lymph gland in the centre of his chest.

chemotherapy was given, after 9 weeks the ct scan showed the cancer was contained.  Another 9 weeks of chemotherapy, but unfortunately, after this cycle, the tumours had grown and the chemotherapy was no longer working.

Fortunately, a new drug has just come on the NHS and this was offered to my husband. This is called NIVOLUMAB. This drug builds up your own immune system fight the cancer. He has had only 2 treatments. He is not as active as he was under chemotherapy and his mobility is worse. He gets out of breath after walking a few yards.

Has anyone else heard of this treatment or is on it? I would be interested to know of your progress.

My husband didn’t want to know the outcome of his illness, ie., how long? I went along with his choice. We never talk about the future, as he can’t bear to. He says” when things start to happen, we will talk then”. I know it’s not good, but I try so hard to remain positive for him, by talking about what we will do in the future, or “when your better, we’ll go.......”. I’m scared and l feel alone. My husband and l met when we were 15yrs, married 43yrs, unfortunately I could not have children, but how l wish l had children to help us through this nightmare.

  • We are.from England and he is just finishing his chemo this week he has also had radiotherapy.

    This has I think reduced the size a little but now he has a clot on the lung.

    He can't have surgery and as he has stage 4 I have read that maybe 18 months if lucky is his Life expectancy.So what does the new drug actually do?

  • Hi jassyanne,

    we are also from England, Manchester.

    My husband is also stage 4, we have never asked life expectancies, because we find it easy not to know.

    As l said previously, the drug strengthens your immune system to try and kill the cancer, rather than rely on chemotherapy, which you can’t have long term. The drug is very tolerant, therefore you don’t appear t get the side effects like you do with chemotherapy.

    My husband was not eligible for an operation, as the tumours were too large.

    unfortunately, my husband has no energy and his mobility has got worse. He doesn’t eat much, which may be the reason he hasn’t got much energy....... God, I hope so.

  • Dear Petra,

    50! That’s heartbreaking, I’m so sorry. I thought it was bad for us , my husband is 63years. Whatever the age, when it’s you going through it, it’s hell on earth.10years about I watched a close friend, lose her 7year old son. That’s one of the worse things I’ve ever watched. Cancer is cruel.

    My husband, David isn’t too good at the moment . He’s hardly eating, can’t walk far, therefore losing weight. I’m so scared.

    life is cruel.

     

  • Dear Alma!

    I'm sorry your husband isnt doing so good. Can you get some high calorie drinks from your doc? Here they can prescripe them...it may gives him a bit strenght back!

    Thinking of yoy, Petra

  • Thank you for your reply,how large is your husband s tuna and has he got secondary.

    Also how long has he been diagnosed.

    My other half has a9 cm on right Lu g high up

     

     

  • Hi jassyanne,

    we were not given the size of my husbands tumours, but were told they are ‘sizeable’. He has 4-5 in total on both lungs.

    my husband is still no better, we go for his third treatment this Friday, I hope he will begin to feel better. I know we are under one of the best hospitals,

    it is secondary cancer, it spread from his throat. He was diagnosed in March this year, two years after being given the all clear.

    hugs.

  • Hi Alma!

    Just poping in to ask how your hubby is doing? I hope he feels a bit better?

    Petra

  • Hello Petra,

    We have had an awful three weeks, mostly as I have previously said, David has been so tired, losing weight, not eating, no energy. I have been so worried. 

    We went to see our specialist on Thursday, he understood the weight loss etc., as David had the flu injection, then right after had a terrible bout of flu. This would floor anyone, but in his case, it takes a lot to get over. As well as that, his calcium levels were high, that in itself, I believe, makes you very tired. The important thing is to start getting food down him, apart from the odd supplement drink. He had his third treatment of nivolumb yesterday. Today he feels stronger and in much better sprits, he’s had weetabix and a supplement drink, homemade pea soup later. The specialist did also mention with the new treatment, the more you have, and builds up the immune systems, then the stronger he will feel. That’s the plan, he said, no guarantees. 

    Lets hope and pray David follows the plan.

    Thank you so much for your concern and thinking of us, it means a lot. 

    How are you.

    xxxxx

  • Hi Alma!

    Glad to hear he is getting stronger, and let's cross our fingers he keeps on eating and then the treatment will kick in!!!

    I am doing fine, still some problems with my thyroids but it wont kill me. Another side effect from 3 years chemo and so is that on November 15 i will loose all my teeth :( , they all loose and Dentist said there is nothing else they can do, so first all upper ones and a week later the rest. Not what you want with 50. So it will be soup for a while.

    Petra

  • it is with heartbreaking sadness, I have to say, that l lost my most beautiful, precious husband on Thursday 6th December. He was at home with me, surrounded with love from all his family .

    The future without him is unbearable, but l know there are many that have and going through the same pain. God bless you all.