Aggressive recurrence

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Hello all. 

Completed carbon-ion therapy late April for my 4th recurrence. 

While waiting for the MRI follow up I felt something was not right and advanced the whole thing.

They found growths in back of my throat, in a bone in my ear, many in my neck. 

Waiting biopsy to confirm but that's a formality in my opinion. 

The pain is now ramping up. I'm already on oxycodon and supplementing it with paracetamol with codeine, ibuprofen, diclofenac and anything I can get my hands on basically. Rotating them.

I will see the professor (surgeon) on Tuesday to see what can be done. 

My question is has this happened to you? It usually popped up in one place and was dealt with with surgery and the last with re-irradiation as it was inoperable.

This time it's everywhere in my head and neck. Suddenly and growing fast. My ENT said she never saw something grow so fast. Only one, back of throat, grew 5mm in 6 days. I wonder if this is the final countdown. It feels like it. No idea where the primary is

I don't know actually what I'm asking. It's just moving sooo fast and of course the doctors, with one exception, are moving sooo slow. 

I guess I'm wondering why if I broke my leg, they'd fix it same day. With this I know they will discuss with tumour board, make plans for whatever treatment and I will probably start treatment in 4-6 weeks.  This is what my experience has been so far. 

In light of the fact that I can literally see them growing daily do you think they might do things a bit quicker? It's beginning to close my throat, I can't eat, drinking anything is massively painful. I am losing my will, I'm falling asleep randomly and feel constantly tired. 

Anyone ever been fast-tracked? I'm always told that I'm not the only one with cancer and they are busy. I feel like I am dying rapidly. It would sound dramatic but this isn't my first time. It's the 5th and by far the most painful and fast and it's in many places.

  • Hi  

    I’m so sorry the situation is dire. The only thing I can think of is this vaccine trial that’s in all the media today. But I suspect that takes time you don’t have. 
    I think you could be looking at hospice care to at least keep you comfortable 

    That seems the reality of it 

    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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  • Larrykins I’m so sorry your desperation and fear is evident. I don’t think you are being dramatic at all you are seeking information and comfort which is completely natural.

    im sorry that I don’t have answers to your questions but maybe your CNS could help.

    On a practical level your symptoms do not sound well controlled so maybe seek a referral to macmillan nurses. Dani’s right hospices can help with symptom management and psychological distress while you are awaiting the outcomes of investigation and discussions around this. Of course you are not the only person with cancer but you are suffering and that is a very unhelpful thing to say.

    You are in my thoughts and for what it is worth sending love and a hug.

  • Thank you. 

    I'll see what can be done Tuesday. My oncologist here wants to begin chemo and immunotherapy right away. 

    Psychologically it's a disaster. I'm not in the UK and here is a bit lame. A lot of sympathy but nothing real. 

    Tbh I have all the tools. Been around the block on the Psychological front. I'm stuck and paralysed though. I can't 'go for a walk' 'hit the gym' 'meditate' 'call friends' etc. I just can't. It's all consuming. 

  • I am so sorry to hear of your situation.  Words fail me seeing the turmoil you are in.  Sending good vibes.

    Peter
    See my profile for more details of my convoluted journey
  • Good evening Larrykins, so sorry to be reading this, you have been through so much, im sure you will be treated very quickly due to your history, as Dani mentioned the new vaccine might be an option for you, let's hope so. You deserve a break. I wish you all the very best.

                                                               Chris. x                  

    Its sometimes not easy but its worth it ! 

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  • Hi Larrykins 

    So sorry to read your post , You are definitely not being dramatic…. I tried all the pain meds nothing worked . the only thing that took the edge off was Fentanyl patches I stayed on them for months .

    I hope your Cancer Nurse Specialist or the Mcmillan team could support you in finding out more information.

    Hopes for treatment to start soonFingers crossed

    Debbie

  • Thank you. I wish they'd get a move on. 

    My doctor wants me to get to hospital already because my throat is closing up. I know though that that is a one-way ticket. I'm not done yet. I need more time to get my affairs in order. 

  • Thanks Debbie.

    The palliative doctor gave me patches two days ago but, even with a water proof cover, it just sweated off. 

    Always had the same problem with nicotine patch's. Unfortunately patches and me don't mix. Don't know if there is a secret to them 

  • Hi Larrykins, how about covering them with a grippy bandage to keep them close to skin ? just a thought ask the hospital for advice Im sure your not the first.Im really sorry to hear about your throat is there anything they can do to help ?

    You are in my thoughts x

    Debbie

  • I could try a bandage, didn't think of it. Was using the clear plastic ones.

    They are thinking about a resection of the growth in my throat but with the caveat that I will never speak or eat again. Not really up for that.

    The other option is the chemo and immunotherapy combined but it's taking so long to get started somehow. If that works it would shrink the tumours enough so I can swallow better. They were clear that it wouldn't cure me but it could make me more comfortable until that too stops working.

    I am finding new lumps in my neck daily, it's so aggressive this time. I really need the lab to prioritise the test I need to give me the correct immunotherapy. 

    I will endure whatever they will pump into me but I hope they find the formula soon. I don't have time. Waiting is literally killing me. I hate this so much because it feels so different this time. 

    Sleeping more and more in the day, tiring walking upstairs and weird things like hearing my heart beating in my ears, kind of tinnitus. Heard a massive whooshing sound this morning in the shower which confused me. Then I found out it was just the water hitting my back causing it. So odd and I can't explain it.