The Roy Castle Lung Cancer Foundation
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Advice..please x

Advice..please x

In December 2011 my husband was diagnosed with early stage NSCLC . He went on to have a lower left lobectomy but adjuvent chemo was not considered necessary . The years passed and he was down to an annual appointment with the surgeon . However, on 13th June 2017, at what was due to be the last appointment, we were given the news that the cancer had returned and was now stage 4. In the intervening years he had also had 6 months of chemotherapy for CLL ( a chronic Leukemia...in remission) We proceeded to have a horrific experience with our hospital , who made my husband wait 20 weeks to see the oncologist as this man kept cancelling appointments. Finally, we saw the Oncologist who basically said that we would not offer my husband any treatment at all . This was despite the fact that he was in good health and asymptomatic. We arranged for a second opinion and happily the Royal Marsden offered to take my husband as a patient. Tests showed that my husbands kidney function was not very good ( GFR 34) so platinum drugs were considered inappropriate. He also did not have any mutations /PD11 so is excluded from immunotherapy . His CLL means clinical trials are also not possible. He proceeded to have 6 months of Vinoralbine which worked for a short time and then stopped. He has now had 3 rounds of carboplatin as the Consultant advised that NICE regulations mean you have to have platinum chemo in order to access other drugs further on. Nearly a year later, he remains pretty fit, has lost no weight etc. We don't know what he will be offered next ( keytruda is a definite no) but I wondered if anyone knows about Nivolumab ( Opdivo) ? ...do you have to have mutations to obtain this drug?

Also, no-one has mentioned brain mets to us although it appears to be common. How do they detect these mets? He has regular scans but never of his head...

Thank you for reading my somewhat rambling post

xx

9 Replies
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Hi Alice

Sorry to hear your hubby has been going hrough it all.

My lung cancer metastised to my brain. Iti was was found by 3 monthly scans. My MRI had contrast dye put through the cannula to show up the dye. If hubby hasn't had the con dye you could ask for it. If appropriate say you re concerned about not having had that!

bestt wishes

Hoggy x

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Hello alice111,

What a lovely picture of your family, I am very sorry to hear about your husband’s illness you have both been through a lot over the last few years. The diagnosis of Brain mets is with CT or MRI scan, sometimes with injection of a contrast medium, symptoms often can be vague and they include headaches, nausea, confusion, weakness /altered sensation in limbs and fits / seizures, if you have concerns about the possibility of brain mets talk to your oncologist who can arrange further investigations. Nivolumab is an immunotherapy drug, due to your husbands past medical history it would need to be discussed further with the medical team involved in his care if he would be suitable for this treatment.

If you would like to talk with someone please give us a call on the nurse led helpline Freephone 0800 358 7200

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Hi Alice, I am sorry that you, your husband and family are having to deal with this. I agree with the comments from hedgehoggy and The Roy Castle team. For peace of mind, ask for a brain scan for your husband.

Relatatives are emotionally, as much sufferers, as, is their loved ones with the Cancer. Ask for help and accept help when offered.

Hope and trust.

Daisy.

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Thank you all for your replies...I know this is a bit of a difficult question but do people ever survive for any length of time with stage 4 metastatic NSCLC? Our Gp said she has a patient , diagnosed 6 years ago, who opted to not have treatment who is still going strong. I wonder if this can be possible... I'm feeling very despondent at the moment I must admit. x

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I've met several patients who have lived for several years with stage IV lung cancer - stage 4 means it has spread beyond the lung and new treatments are being developed all the time. Also different combinations of existing treatments and different doses are being trialled so as more information is learnt about the condition, more opportunities for different treatment arise. Do ask whether there are any trials that may apply - but remember it's important to speak to your oncologist/consultant about the specifics of the patient and tumour as there is considerable variability in treatments dependent on a number of factors that need targetting. good luck.

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Thank you Janette xx your advices is encouraging xx

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Hi Alice , I think it is possible to survive past any predicted guidelines as it is down to the individual ,the power of the the mind is incredible .I definitely shouldn't be here but I am ,I have grade 4 cancer which may or may not have progressed to my heart they are unable to biopsy it ,I now have a pacemaker which has saved my life and my brain Mets seem to be under control .So take heart I am not saying daily life is not challenging but I am still here , hanging on for my friends and family ,I don' t want to go anywhere or leave my family yet .On bad days I just stay in and rest on good days I get out and about .There is no treatment for me just surveillance I have no mutatations for immunotherapy and really do I want anything if all is settled just trying to get off steroids that I was put on after radiotherapy for my head nearly 12months ago now .I am getting there slowly.It is hard not to feel despondent at times ,but for me I try to distract myself go out with friends do hobbies even housework ,clean out the cupboard under the stairs go to the local cancer centre and chat with people in a similar situation sometimes helps ,eat cake ,whatever works .Good luck Alice hope you can find a way forward through this yuk cancer thing .It's a life challenge none of us want .x

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Thank you so much for your very encouraging reply Diane ..I feel better for reading it. I'm sending you all my best wishes ...I suppose the old adage " Yesterday is history, tomorrows a mystery, so live for today" just about sums up the situation...and it applies to all of us regardless of health issues .xxx

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Alice your adage is wonderful, hopefully that is what we all do. Even though I have been clear for nearly nine years the fear is always there. I definitely live for today. Sending big hugs to you & your family xxx

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