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    The Roy Castle Lung Cancer Foundation
    3,149 members • 1,790 posts

    Wheel of Fortune Update

    Hi all, I haven't been on the site much as I've been finding this chemo combo quite tough, had lots of side effects with fatigue, rashes, mouth ulcers etc. I finally received a copy of my CT report and Basicall my main tumour has reduced slightly but the lymph nodes have increased slightly, so I'm going to say it's stable just now.

    I am due to have my 4th and final round of chemo tomorrow but yet again my white blood count is down at 0.7 and I need it up to a minimum of 1.5 so it's of go hospital first thing tomorrow for another blood test to see if it's ok to go ahead with treatment tomorrow afternoon.

    I've also read that the Scottish nhs has just given the go ahead for Nintedanib, an immunotherapy drug, to be used to treat some patients. I believe that NICE may follow suit in May. Here is a link

    scottishmedicines.org.uk/SM...

    Wishing everyone the best.

    Rab.

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    Hi Rabbie

    Good to hear your not doing to bad on the chemo, what type are you having? Hope your bloods start behaving and get to a good level for you.

    Have read a lot about nintedanib sounds promising tho my dad has squamous so waiting and hoping something will come out to help him.

    Good luck with treatment this afternoon x

    Reply

    Hi Knic thanks for your support. My first cancer was squamous and I had Cistaplatin and Vinorolbene for that. This time around it's a carcinoma type classed as NSCLC but it has SCLC similarities so I'm being treated with Carboplatin and Etoposide. I've just phoned and my white cell count has gone up to 1.8 so it's off to enjoy the delights of chemo on this nice sunny day.

    Cheers Rab.

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    Hi rab and sorry to hear you're struggling with chemo. Nasty stuff! Hope you manage to get your last one today. I did see nintedanib was approved in Scotland. My next cheom would be docetaxel with nintedanib as although its not approved here my oncologist had enquired and he could get it from the drug company on compassionate grounds. There are a few here on it with Docetaxel. hope you get your chemo finished and recover to enjoy the summer.

    Best wishes. Julie xx

    Reply

    Thanks Julie,glad you have a chance at Nintedanib as it seems promising, hope you are enjoying the sunshine.

    Rab.

    Reply

    Rabbie

    Lovely to hear from you, sorry chemo experience has been a bit of a bumpy road. Hoepfully your blood results will improve and you will get round 4 in.

    Glad to hear nintedanib might be an option. Julie, glad your consultant has found a way to access it, until we hear the results of the NICE decision.

    best wishes to all,

    hope the sun is shining to the North and South of the country and all you who are enduring chemotherapy have positive moments in the sunshine.

    best wishes

    Lorraine

    on behalf of the Information & Support team

    Reply

    Hello lovely Lorraine, thanks for all your support.

    Rab

    Reply

    Sorry to hear that you are feeling rough with the chemotherapy, I did too but did start to feel a lot better when I came off it after the fourth session.

    Wishing you all the best

    Sally

    Reply

    Thanks Sally.

    Reply

    Better wishes Rabbie, hope u start to feel better soon, I'm on Atlantic trial PDL1 it's immunotherapy and so far so good, take carex

    Reply

    Cheers Sheeni,

    Glad that your trial is going well. Long may it continue.

    Reply

    Glad you got the go ahead to treatment and hope you start feeling better soon keep us posted!

    Reply

    Hi Rabbie,

    I have been wondering how your treatment has been going.Were you able to start your 4th round of chemo?Best wishes.

    Stewart

    Reply

    Hi Stewart, hope you are still keeping well? Yes my white cell count did get up to 150 by Wednesday morning so chemo went ahead in the afternoon. I'm finding it tougher going than the combination I had with my first cancer, in fact I've been fatigued and in bed most of today. I'm due another CT scan in a few weeks and an appointment with my oncologist on the 23rd May so let's see what the prognosis is then.

    Cheers Rab.

    Reply

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