Palliative treatment

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Hi all, 

My partner has been diagnosed with head and neck cancer. They say it started at base of tongue but he also has a large tumour on his neck that is effecting his speech and nodules on his lungs. They have recommended chemotherapy, no surgery as it isn’t curative so it will be palliative treatment only.
There’s been a delay in starting treatment due to getting his pain under control (headaches) and dental issues (teeth removal) but should be starting on carboplatin next week with 5FU in a pump at home for 4 days. We haven’t really had a chance to discuss diagnosis/prognosis with the oncologist as after initial meeting he was booked straight in for chemo but then was unwell on meeting the oncologist the day before so that took over the conversation. Today we met his GP and he asked what we know about the diagnosis and I said not much really. He offered to talk it through but my partner said he doesn’t want to know. I feel like we should know all of the facts before starting treatment as I know it won’t be easy. Or maybe I just want to know so I can prepare.

Thanks for listening, torn between asking the questions but also wanting to respect his wishes. 

  • Oh Elaine that all sounds so sad. Your partner must be scared stiff which is why he is refusing to confront reality. 
    Personally I think you should know even if he doesn’t want to. As you pointed out, you need to prepare.  Would his GP talk to you? Could you manage the knowledge on your own? 
    Do you have family members /friends who could support you both? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hearts️ I can’t quite figure out how to reply on this but hopefully this works. He has filled in a consent form at the GP’s for me to able to speak with them on his behalf due to his speech problems as so much is over the phone these days. I did ask the CNS if he is classed as terminal for applying for PIP and she said not medically classed as terminal but the oncologist did complete the SR1 form so with the GP mentioning it I feel like there is more we could know about it. I do feel like I could cope with knowing and behave the same positive partner for him. I have excellent support albeit the majority are in Ireland and we are in England. My granny had mouth cancer and was too unwell/old for surgery, she did try radiotherapy once but decided not to continue due to quality of life. They haven’t mentioned radiotherapy for my partner so I don’t know if that’s down the road or not. 

  • Hi Elaine. So sorry to hear like Dani says I think it would help you so therefore help your husband if the gp will talk everything through. 
    I had both chemo and radiotherapy my chemo was 3 planned doses I had 2 but they were delivered at hospital intravenously. Not  like your husbands but best advise I can give take the anti sickness meds snd steroids as directed. If the anti sickness don’t work ask for others as often we are started on the cheesiest doses and there are a lot of others that can he given. 
    Also make sure you have  the phone number if his  cns or Macmillian nurse they are invaluable plus phone number of oncologists medical secretary.

    if he does have radiotherapy we’ve all lots of tips 

    Hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Elaine I have been treated for base of tongue cancer which spread to my lymph nodes in late 2020 this was treated with chemo and RT . this gave me the all clear for another year until someone ran into the back of my van which led to a neck dissection , which I had late 2022 and was all clear until 2 of this month when I was told it is back in my neck ,liver and both lungs . I am sitting here now on  Friday after having my Carboplatin and my 4 day pump will be removed on Sunday . The wording on my letter says I am being offered palliative chemotherapy , this is to stop or shrink the cancer and that is it , they cannot cure me but I was told there was cancer still in my neck after surgery . So it's not something new except the spread is unfortunately. I am remaining positive regardless . As someone said here Never Lose Hope . Storms make people stronger and never last forever . I hope this helps in some way All the best Regards Minmax

  • Hi All, 

    Just a quick update on my partner. He’s doing well and on 2nd round of chemo. They still hadn’t done the DPD test so he is on half dose of the 5FU so they did the blood test on chemo day but yesterday they called and it needs to be redone next week when pump is off. We’ve had few days of sickness about a week after chemo (refused to go to hospital when I rang the chemo helpline but did get better anti sickness and have an iv one at home if needed) and general fatigue. Hiccups and heartburn are a problem but got some meds today that will hopefully help as he hiccuped from 7pm to 7am last night. We spoke about diagnosis together and he’s positive so we left it at that. I did ask the oncologist about radiotherapy and she said it wouldn’t be beneficial but after chemo perhaps 1 or 2 rounds. 
    Hope you are all well xx

  • Hi Thank you for the update everything x for you and your  husband 

    hugs Hazelx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hello all,

    My partner has had 4 rounds of chemo now. Had a pet/ct after round 3. Today we had the results, they said the tumour on his neck was brighter. Am I correct in thinking this means more cancer cells? They did say some nodes in his lungs have gone but most haven’t changed. They’ve now decided to stop chemo and start immunotherapy, I asked how long for and they said until it stops working. He’s been quite poorly with the chemo and never even got to 100% doee so hoping this is gentler on him and they are giving him a week break to recover. Picc line will also come out as he won’t have the dreaded 5FU pump on and weekly nurses. He’s positive about the change so that’s good. Any advice on immunotherapy would be appreciated as still absorbing and won’t know more details for a week as they are giving him a rest in between. 
    Elaine 

  • Immunotherapy as you say is gentler on the body. Some people respond well 

    Have a look at this blog. Anson is a member here but he doesn’t post much 

    https://ansmackay.wixsite.com/uclgeography/blog

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Elaine I have had my 4 chemo and four pumps . I had a scan after 3 scans  and the oncologist said he didn't think the tumours were looking any bigger . I have a phone call with him next week to discuss this. I would be very disappointed if he tells me tumours are bigger on a phone call. All the Best Minmax

  • Hi Elaine, sorry to hear about your partner. My husband was diagnosed with tonsil cancer in January this year. Unfortunately by the time we had the results from his PET scan we found it had spread to lymph nodes in his neck, hypopharynx, a couple of lymph nodes in his chest and his right hip.

    It was absolutely heartbreaking to learn the news after we were told he was treatable and had a PEG inserted etc (lots of faults by the trust). I still cry daily and then move on with the day. Knowing your husband’s life is limited is really hard to get your head around and I probably never will. I think the term Palliatiave such a broad term and when we first found out he was palliative we thought this meant that’s it he has weeks to live they then present you with options and your mindset changes slightly- you have hope for more time.

    He has just had his third dose on Pembrolizumab and is doing ok, his bloods showed the Pembro has caused issues with his thyroid - hypothyroid so he’s now on tablets to control it. He is due to have his three month in scan end of June to see if the immuno has done anything but the consultant did say the scan can show increase in tumour sizes known as psuedoprogression. We hope every day that the immunotherapy is doing something and just try and lead this new normal life.

    Hopefully they will make the decision whether to continue or not at his six month scan not his 3 month (a little confusion at his last follow up appointment with his CNS as she said they make make a decision at his 3 month scan and stop if it is not doing anything. Yet the consultant told us 6 months at initial appointment) 

    I hope the immunotherapy works for your partner. I have learnt to take each day as it comes, to not look to far ahead and just try and enjoy life as best possible. Cancer has taken so much from us already we are determined that it doesn’t take away the love, laughter and the joy of us and our family.