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.

  • Hi there ...

    I'm afraid we all live under cancers returning ... it just sits on our shoulder ... I can understand him wanting to live in the day, that's what I do since my grade 3 breast cancer .. I had shadows on a few organs about 6 months ago, and I don't want to know .. I just want to make the most of every day .. whatever time I'm given ...

    So I'd say, be honest, I know your trying to keep his spirits up .. but that word future has a completely different meaning once cancer touches us ... I look a couple of months ahead .. I live in the now .. and make as many memories as possible ... while still feeling l don't want to look too far ...

    But take heart .. some on here had that diagnosis and pushing those boundaries further then they imagined ... and doing things that keep them from over thinking ... so I'd say, live for today, whatever it brings .. hold his hand and don't be afraid to admit your both scared .. and share tears , hugs .. and make every day a memory day .. coz cancer wants these days to be full of fear, and it wants us to lay down and never get up .. well instead of looking down, l look up at the stars, and stick two fingers up to cancer .. 

    Sending you a vertual hug ... Chrissie

  • Hi Alma!

    I got Lung cancer and get Nivulunab since August 2016 now and it did save my life. My tumor didn't grow anymore instead it did shrink and is now stable..i hope it will work for your Husband too.

     

    Hugs Petra

  • Dear Petra, I can’t begin to tell you, how wonderful it was to read your message. It gives my husband and l such hope. How is your mobility and general health? Do you have a IV Drip once every 2 weeks.? Thank you so much for taking your time to reply. X
  • Dear Chrissie,

    Thank you so much for your reply. What you have said, helps me to understand more, my husband wanting to live in the day, as you have put it.

    i shall try and live as you do, a few months ahead. Good advice.

    lots of love.

    Xxxxxxx

  • Hi Alma!

    Yes i get it every two weeks, goes only one hour.

    My mobility and other health is good. I only did get problems with my thyroids as a side effect but take tablets now.

    I can say i life a normal life and try to enjoy every day, now i see so many little things they make me smile and don't bother with others who would have made me angry..just be.

    Best wishes Petra

  • What is Nevaluby.partner has stage 4 cancer lung and has had radiotherapy and just completing chemo.He can't have surgery but he is doing as well as he could be.

    I am scared that the cancer will start to grow again it would be great if we could halt it .And then we could manage his condition and he could cope

  • Hi Petra, 

    My husband also has it every 2 weeks. Did you feel better with the more treatments you had? He is about to have his third dose next week. I’m hoping he’ll get stronger. Were you active when you started having the treatment or poorly. Sorry to ask you all these questions.

    kind regards

     

  • Hello Jassyanne,

    Nivolumab is a drug, that has been used on clinical trials. It has now been bought by the NHS, as it has had such a success rate, and obviously, the price was right. I’m not to sure, as to what makes you eligible for the treatment, but l know there is only 22 patients on it at the hospital my husband attends. That is 22 NHS, there are lots still on the clinical trials.

    Apparently, Nivolumab builds up your own immune system, this then enables your own cells to recognise the cancer as the enemy, and therefore attacks them directly, and carries on, unlike chemotherapy. That’s how we were lead to believe . 

    We are just hoping and praying it works for my husband. 

    I hope I’ve answered some of your concerns.

     

  • Hi Alma!

    Ask as many uestions as you like i'm happy to help if i can.

    I was very down when i started , mostly from the chemo, very fatiqued and unwell and really was thinking i am going to die soon. When i started immun therapy the first thing i noted , there wasnt any sideeffects at first. So i feelt better very fast.  Then i started to get a very dry mouth the feeling like i had sand in it. But with plenty of water it was okay and did go away a few weeks later. And then so around a year later i did get a call from onc to come in fast...my heart was going a hundred miles an hour....but it was only that my blood did show that my Thyroid funktion is all over the place ( a common side effect) so they started me on meds..it took a while to find the right dose but now im fine. In this time i did put 10 kg on, what was good for me as i only had around 50kg before. I was counting now and i had 52 times Nivu now :)...hope it will go on for the next 10 years or so, as i am now only 50!

    Best wishes Petra

  • Hi Jassyanne!

    Yes Alma is right, it's a new drug, here in Australia we can get it since 2016, what did safe my life. Where are you from? Here you must have tried chemo before being alowed to get it. But i think is has changed here now and patiens can get it right away.

    There are other immun therapy drungs on the market also like Keytruda and for some people it has worked also.Please ask your hubbys doctor about it!

    Petra