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Looking for advice as I have an Adenoid Cystic Carcinoma

ryan36
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Hi Everyone,

My Name is Ryan I am 36 years of age and was diagnosed with an Adenoid Cystic Carcinoma Cancer which is incurable around 2 months ago now. My first ct scan showed that where the original cancer was located in my bone in my jaw and in my gland had also spread to my lungs and liver. My Oncologist put me straight into Intensive Chemo which I was getting every 3 weeks, I have now had a further ct scan to check on how the treatment was going unfortunately the scan has shown that the cancer has got worse. My Oncologist has said he has no further treatments that he can provide me with to try and improve the situation. I have requested if there are any trials that I could potentially get on due to me being a young fit and healthy person. I feel at the moment I am in limbo where I do not know if I can get any further treatments to prolong my life or will I be left and my health to reduce due to the cancer over time. 

I am just looking for any advice or assistance I am honestly willing to try anything even to assist with anyone that is diagnosed with this type of cancer in the future to help them. Any grants or funding that could help me to go down the private route? I am lucky I have a wife and a baby boy who is 3 months old to fight for, I am a very positive person that is looking at all avenues to push forward.

Any help would be greatly appreciated.

Ryan   

  • Hi Ryan,

    Welcome to Cancer Chat. I know there's not too much I can say to help but I am sorry to hear of your situation and I can fully appreciate you looking for any and all information available. Your doctor/specialist would be the best person to advise on any potential options. We do have a searchable list of clinical trials on our website.

    It sounds like you are approaching things well and it's lovely to hear that you are happy to support others in similar situations too. I hope that this forum can provide some small help to you, and we're always here for support if you need it or even if you simply want to write things down and reach out to others. It can be a safe space to do just this, alongside speaking to those around you too.

    Take care and wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Offline in reply to Moderator Ben

    Hi Ben,

     

    Many thanks for your reply nice to have a space to interact with moderators, Nurses and people that may be in a similar situation to myself.

    The trials list is a kind of minefield when you search on it, do you knwo if there is someone that I can speak to regarding any of these as a possibility that I could join one? 

    I am looking through all avenues to learn more about my Cancer and the possibilities of any treatments that professional can recommend for me.

    It is so hard to find out information on my Cancer and also treatments that have been tried and tested on patients like myself. I do feel that with me being young fit and healthy that Profesors and Doctors would look at me as a prime example for trials/tests.

    Thanks again for coming back to me, if you know of any further places I can utilise to learn more about treatments I would be very greatful. 

    Kind Regards,

    Ryan

  • in reply to ryan36

    Hi Ryan, 

    If you have found a clinical trial you are interested in joining then you will need to speak with your doctor or cancer specialist but if you have any general questions about taking part in a trial or want to talk about whether a trial is likely to be suitable for you then you're welcome to get in touch with our team of cancer nurses on 0808 80 4040, Monday - Friday between 9a.m - 5p.m.

    They will also be able to answer any questions you have about your diagnosis and let you know about any charities and organisations that may be able to offer you further information and advice so do get in touch with them when you can.

    Kind regards,

    Steph, Cancer Chat Moderator

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