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    The Roy Castle Lung Cancer Foundation
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    Experience of Nivolumab?

    Hello all

    We are currently looking for patient experience of Nivolumab. It is currently being evaluated by the Scottish Medicines Consortium. If you have any comments or experiences you would be willing to share can you let me know. Feedback from anywhere in the UK welcome, it would be used as part of the Patient and Clinician Experience Session which is designed to look at the impact of treatment alongside research data.

    If you wish to post comments here or send me a private message, any feedback welcomed.

    Thanks

    23 Replies
    oldest • newest

    I start on Nivolumab on Tuesday next week. Let me know what I can do to help in anyway.

    Reply

    Thanks Mushta, If you are willing you could maybe post how you are getting on with Nivolumab or private message me. Direct patient experience quotes are very beneficial to a submission process. Hope all goes well tomorrow and thanks again for getting back to me.

    Reply

    Would be happy to help will update in next 24 hours

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    Thanks Mushta, greatly appreciated.

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    Later than promised so apologies.Had first treatment last Tuesday and so far all is fine, no side effects at all. seeing oncologist this Thursday for a quick check up and bloods and if he is happy on with the second dose.

    1 like
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    That's great Mushta, Thanks for letting me know. I hope things remain that way, You certainly sound positiveand in control, which for any illness is big help. Am I right in saying the dosage intervals are 3 weeks?

    Reply

    Every 2 weeks

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    Hi, I am starting Nivolumab on 21st March and have been told the treatment is given every two weeks.

    Reply

    That's great thanks Hazytron, We are struggling to gather direct patient quotes for Nivolumab. This is because it is so new to the UK market. So any patient experience would be very beneficial. We use the quotes to support submissions for the medicine and can help get the medicines passed for use in the NHS. So if you are happy to please could you let us know how you are getting on with Nivolumab.

    Reply

    Correct

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    Second dose completed and I already know the lymph lump is reducing

    Sadly they found a very small cell in brain this week and start radiotherapy Monday

    Hey Ho these things are sent to try us on with the show

    All the best

    MUSHTA

    Reply

    Hi Mushta,

    I am sorry to hear that they have found brain cells, I am assuming you will continue on Nivolumab? If there is improvement on the size of the lymph node then I would expect it to help with the brain involvement. We are often looking for drugs that cross the blood brain barrier, but as Nivolumab is not directly treating the cancer, but telling your immune system to fight the cancer, I would expect it to help. I hope the radiotherapy goes according to plan and wish you all the best for this week.

    Nicky

    Reply

    Thanks Nicky, yes remaining on the Nivo every 2 weeks. The Lymph which I could feel and which first led me to go to the doctor has reduced to a point where I cannot feel it any longer. We are at an exciting time with immunotherapy treatments and in a bizzare way it's exciting to be involved and help wherever I can.

    Everyone just needs to keep paddling for each other

    Update soon next Nivo next week

    X

    Reply

    Had my first Nivolumab infusion on Monday, 21st March. So far I am delighted to report that I am not experiencing any side effects. 

    1 like
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    That is great news Hazytron, Thanks for keeping me updated

    Nicky

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    We have now made our move from the Midlands to Devon quite challenging 2 days after we arrived we were back to the Midlands for my radiotherapy for 5 days. Anyway that's done and now had my 3rd dose of Nivolumab this week. All good no side effects the lymph node that had been prominent is still no where to be seen or felt, cough has gone pretty much and breathing getting slowly better day by day. So all good and we are hoping to maybe get off for some well deserved sunshine in May. Keep paddling 😎

    Reply

    Hi Mushta, Gosh you have been busy! Glad the Nivolumab is going so well. It certainly sounds like your symptoms are easing and allowing you to manage better. Thanks again for keeping me posted. I can definatly use the above post as a quote for the drug submission.

    Regards

    Nicky

    1 like
    Reply

    6th treatment this past Thursday all ok with no unusual side effects other than tiredness

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    Sorry been away for a break in Spain. Had my last infusion 2 weeks ago plus scan. Brain now clear which is a huge relief lymph node in neck completely gone and tumor on lung reduced 50%.We got the news 2 days before we went away so we had a good break.

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    Hi Mushta

    That is fantastic news and well timed before a holiday! A great quote for this weeks submission thank you.

    Nicky

    Reply

    Nicky i know you sent me a pm but i couldnt reply to it answer is happy to help just let me know

    Reply

    Hi Mushta

    That is great news, thanks very much. Maybe at a convenient moment if you are happy to, you could phone into the office and I could get some details from you.

    03333237200 (option 2)

    Thanks

    Nicky

    1 like
    Reply

    Nicky I should be back home on Monday so will call you early next week.

    Reply

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