Dad has nsclc!!

Hi all, I'm really new to all this chat room stuff, to be honest never thought I'd be in this situation! 2 weeks ago my world came crashing down, my dad was diagnosed with lung cancer!! Yesterday we saw his oncologist for the 1st time, been told it cannot be cured , however he will be starting chemo next week, after 3 cycles will re evaluate and consider adding radiotherapy to his treatment aswell. Dads cancer has been classed as locally advanced, with 2 thirds of people not seeing 12 months, I'm absolutely devastated!!!

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  • Hi Yvonne84

    I am sorry to hear about your father. It is positive that they plan to re evaluate after the chemo. Lung Cancer is a changing world at the moment, as I am sure the community here will tell you. Although there is no definitive cure, they are new medications coming onto the market frequently at the moment. These medications are to treat the mutations found in the tumour and can give valuable time for the individual and family. If they haven't mentioned mutations then ask if your father has been tested for them. The management of the symptoms of lung cancer has improved a lot, which in turn has a huge impact on the patients ability to have quality time. It is also worth asking about clinical trials that your father might be eligible for. Clinicians are usually very good at putting patients forward for trials. All clinical trials are listed on cancerresearchuk.org/about-...

    The community here are a great bunch, both with information and support and I am sure they will be a great help to you.

    Take care

  • Thanks for the reply, no nothing has been mentioned about mutations so will definitely be asking that question at his next appointment, thanks! He has been put forward for a trial but I think it's just to c how he responds to the treatment more than using a new treatment. It would be really good to hear other people's experiences and to have someone not so close to me to talk about things with x

  • Good advice. I was diagnosed stage 4 terminal last March. I am currently on a trial.

    Suzy

  • Hi there. I am really sorry to hear about your dad. Definitely worth asking about mutations at your next appointment.

    I was diagnosed with nsclc in May 2014 and like your dad heard that two out of three won't be here in a year....... Well I am and there is no reason your dad can't be too. I remember hearing something about statistics that stuck with me and that was 'it doesn't matter if the chances are one in three or one in a million - if you are the one'. Keep positive.

    My cancer had spread from the lung and was in the neck nodes on both sides of my neck (stage 3b). I was told it was inoperable, incurable and I would receive palliative care. I had no mutations. I have had four rounds of chemo (cisplatin, pemetrexed) which didn't have much effect. I then switched to radiotherapy and they gave me 30 sessions to the chest and neck. The scans after radiotherapy showed that the only remaining activity was in the main tumour and so I managed to get a surgeon to agree to operate and I had my upper right lobe removed in June last year. All scans since then have been clear. I am about to have a two week holiday in Thailand before my next set of scans. I am on three monthly checks for the first year and will then go to six monthly.

    I have been warned there is a high risk of recurrence - but didn't think I would get as far as I have so will take my chances from here. A lot of the treatment options for your dad will depend on how he responds, his general state of health etc. I was 43 when diagnosed and did a lot of running so was in good overall health which helped with the treatments they threw at me.

    I wish you and your dad all the best and I hope that my story has given you something positive to think about. One thing I have learnt is that cancer is a very individual story and what works for one, may not work for someone else - and doctors can be surprised by how someone reacts. It is an ever evolving situation and there are great steps being made in treatment options.

    Have to dash off now but happy to chat more if it would help you.

    Take care

    Janey xx

  • Hi Yvonne

    My husband was given 6 months when he was diagnosed in February 2014. Hasn't had chemotherapy for 18 months, 10 days radiotherapy for axillary lymph nodes in November 2015. Latest scan in January showed no evidence of disease. If next scan is the same will move to six monthly appointments. The doctors don't know who will respond and who won't. My husband was diagnosed as 3b and it is his third cancer.

    I hope your father responds to treatment and you have quality time together.

    Glenda

  • I would agree ask about mutations, I was diagnosed in November 2013 and told that on average people at stage 4 had 10 months to live. They found an ALK mutation before any treatment was started and this made me more optimistic as there were more treatment options available.

    There is also an American website called inspire which is worth looking at. Wishing you and your family all the best.

  • Hi Yvonne sorry to hear your devasting news my husband has nsclc . and is termiunal .Has had 4 cycles of chemotherapy .He cannot have radiotherapy .Saw oncologist yesterday good news tumour has shrunk and not spread .He has been offered maintainence chemotherapy 4cycles but this treatment is 15 minutes not as before a whole day . We keep positive an

    d try not to think to far ahead .We booked a holiday before all this for next week so good timing .Chemotherapy starts week after .We are going to Scotland next week with our 2 daughters to make some happymemories . Hope this gives you some hope .Hope to hear from you again wishing all the best Jeaniexxx

  • Hi Yvonne and welcome, all I can say is snap I think we might be twins my dad was diagnosed in November he is incurable but they are giving him Chemo to keep the cancer at bay so far so good it hasnt shrunk but it hasnt got bigger either. The chemo for him was not nearly as bad as we had feared (he loves the nurses they are wonderful) If you were given a Roy Castle Foundation DVD please watch it, it really does give hope and makes things not quite as scary the progress in Cancer care is coming along in leaps and bounds so dont take it for granted that this is the end, you will need and so will he need a positive frame of mind it makes all the difference. We certainly thought that the chemo ward was going to be full of people who were all depressed and unhappy the truth is very different wonderful people who enjoy a laugh.

    I wish you all the best for you and your dad.

    Lots of love

    Francesxx

  • Hi frances yes we got given that dvd, to be honest I didn't like the thought of watching it, I thought it might be a bit much but will be sure to watch it now! I was a little concerned that the cancer centre may be a bit depressing but we went there this week and it's completely different to how I thought it would be!! That's really good news that your dads hasn't grown any bigger, fingers crossed the treatment continues to do its job for him!!! X

  • Yes that was my concern about the DVD too so i watched it first before i showed it too Dad so that if it was doom and gloom i would have told him we had a faulty copy fortunately it was very informative and because it had normal people rather than consultants on it we thought it was great.

    lots of love

    Francesxxx

  • Ah that's great to know, thanks xx

  • Ah that's great to know, thanks xx

  • My husband was diagnosed 2/1/16 NSCLC adenocarcinoma stage 4. There is a blood test called guardiant 360. Ask for it because it looks for receptor sites on Cancer cells so they can use targeted treatment if you have those receptor sites. We have not started treatment. Watch out for blood clots, with tumors and chemo, high risk for clots

  • I am so sorry to hear this

  • Wow I'm amazed at how many replies iv had, all I can say is thank u all!! Some really positive things being said, gives me that little bit of hope!!! At the moment dad is quite positive and feeling ok in himself, guess I'm a little nervous as to whether chemo may change that and make him feel ill. Thank u all again for your positive thoughts!! Xx

  • Hi Yvonne, I am 41 and was diagnosed with stage 4 two weeks before Christmas. The emotions I've been through are immeasurable. Try not to look up statistics on the Internet a lot of these are old and out of date. No one has an expiration date. I have just found out I have a mutation so more trials are available. Check out the American website inspire the support like here is amazing. Plus questions you have can be answered by people who are actually going through it and they give great advice xxx

  • Sorry to hear about your dad, there are so many treatments out there please don't go by what you read in that on the Internet what I have found when I was diagnosed is that I would listen to other people that are going through it. I understand we are all different everybody reacts to different things in different ways....but cancer does not mean its a death sentence I know people that have had stage 4 there are still alive from 12 years ago when they diagnosed .... so please let's not give up on your dad sometimes they give medications that shrink tumors. it may not be a bad idea to get a second opinion just so you know in your heart your dads getting the right treatment please take care of yourself and let the medical people take care of your dad keep us posted good luck to you.

    I'm presently getting chemo and radiation I was diagnosed last May with stage 2 adenocarcinoma, I had surgery to remove the tumor and also had chemo afterwards to clean up any self loading round the last scan I had which was the second scan after surgery nodes in chest that were enlarged in mid chest which turned out to be Cancer,they consider this a very local reoccurrence so hopefully the radiation and chemo do the trick this time....just wanted to give you a little background on me. I've been there and still am please stay positive. M M

  • Thank u merilee, yes I'm defiantly finding that speaking to people that have been or still are in the same situation a lot better than looking on the Internet!! Talking to people on here a has given me hope that there is a chance the tumor may shrink and give dad more time! Thanks so much for sharing your experience it's much appreciated ! I wish u all the best xx

  • How's your dad doing ? I'm on here for my mum ! Going through the same fears at the same stage as you as mum not seen oncologist as yet just been told stage 3 or 4 and incurable . Very frightened of what's to come but determined to get her the best care and treatment ! Knowledge is power as they say .., here to support you as I need it too !!!! Xxxxx

  • Hi dads doing ok thanks, he started his 1st round of chemo last Thursday and so far so good had no nasty side effects, still early days tho! We were told dads is not curable but we hoping chemo will keep things at bay for a little while longer!!

    How's your mum doing? I am a massive believer in trying to stay positive, as hard as that is at times!

    I wish your mum all the luck in the world, always here for support if/when needed for you

    Best wishes

    Yvonne xx

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