All Bets Are Off

Well after the Wheel of Fortune and Radiotherapy Roulette I'm afraid that all bets are off. The results of my CT scan have confirmed what my body has been telling me these past weeks. The tumours have grown and there are also new nodules to my liver, lymph nodes and now both lungs. I'm waiting for an appointment with the lead onco but I already know that I'm not suitable for the nivolulab treatment and all that I will probably be offered is an older chemo of CAV or sometimes called VAC.

At the moment I'm of a mind not to go for this as I don't want to spend what time I have left going through all the side effects again for what may only be a couple of months extra if that. I will discuss this with the lead oncologist who has been very supportive over the past 4 years with both the cancer diagnosis. Although if any one has gone through the CAV chemo I would be interested in their experience.

I would like to thank you all for your good wishes but things are what they are and we must all live life as best we can because notwithstanding our cancer no one knows what is around the corner.

Scottish hugs to all

Rab.

21 Replies

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  • Hi Rab so sorry to hear your news. Cannot think of anything to say that will make a difference so just sending you my best wishes and hugs xx 😊 Elaine

  • Hi Rabi sorry to hear your news ,sending hugs and my thoughts are with you ,I cannot think of anything else to improve things either, it is what it is, like you said but maybe there is something to help your situation good luck with your next appointment .Diane.

  • Enjoy each day Rab. Xx

  • Hi Rab

    Saying sorry to hear your bad news just doesn't seem like an adequate response. I hope your onc. comes up with some sort of plan for you. I do sympathise with trying to decide on treatment to prolong against awful side effects but non of us have a crystal ball and non of us know how things might b for us. My beloved husband Neil had chemo and RT during his journey. Had we known he only had 10 weeks of life ahead of him after his diagnosis would we have put ourselves through all those side effects and stress? Truthfully I don't know but I think not. But we don't have a crystal ball and we each have to weigh up the pros and cons of what can be very dibilitating treatment against buying more time.

    I wish you well as you continue your journey and send you much love

    Netty

  • Hi Rab and sorry to hear your news. What about trying Tarceva/Erlotinib? I realise you are probably not EGFR+ but it does work sometimes for those that aren't....I was on it 23 months and it held it and was very easy to live with. I am now on docetaxel with nintedanib and had four cycles of docetaxel, only two weeks of nintedanib as NHS England didn't want to give me it. I had a scan yesterday and will find out on Monday if anything has been achieved. If so I will have another two rounds. I have not found it hard at all. Cisplatin and pemetrexed was much worse for me. I have been lucky that nothing has been too bad exept when I had radiotherapy to my hip in may for 5 sessions and I had terrible pain which was an inflamed nerve. However it passed and I am now pain free in my hip, so it was worth it.

    I have always said I will try any treatment and if its too bad I will stop it. In reality I think the treatment will come to an end for me as the next will be fourth line and they are not keen on that or any further lines.

    I haven't known anyone have VAC and would ask why not docetaxel which is recommended, but ask about trying Tarceva before that.

    Whatever you do , all the best.

    Julie x

  • Hi....just reading your post...i also lost my beautiful wife after only 10 weeks after diagnosis and again we would had turned down RT , Steroids etc if we had known as to say it was a bad bad 10 weeks would be an understatement....Take Care. John xx

  • Hi Rab sorry to hear about your news. Just thinking why you are not eligible for immunotherapy. FDA just approved Keytruda for all NSCLC but only those with the PD-L1 antigen. Maybe your onc could explore that.

    Best wishes,

    Peter

  • Hi Rab,

    That really is horrible news. I am sorry that the news is not better. I feel as the others do that there really is nothing to say that wouldn't be trite.

    Today it is a beautiful sunny morning and I hope it is the same for you. I am sending love and prayers.

    Lorna

  • Hi Rab, sorry to hear your news. I too do not know what to say except you could always get a second opinion? From my experience only, when I was told with my brain tumour (which I was diagnosed by an onco but not in her field of expertise), told me I only had a few weeks to live. My hubby and I went through our finances and sorted out things and even threw out most of my clothing etc. and had a good clear out to make things easier for hubby for the inevitable, to find when I spoke to another onco in his field of expertise, said I think we can do something about this and that was when I had the op on my tumour. Going back to lungs, I still have a nodule on my other lung that they wanted to take out and wouldn't be 100% sure until I was opened up so I said I don't want that. So I carried on and I have been monitored for 3 years regularly and I am fine and the nodule has not changed - fingers crossed as my chest scan is tomorrow - Saturday so I will see.

    I hope when you have your next appointment they have a plan for you and what the options are available.

    Stay positive and keep smiling as you do and let us know how you get on.

    With fondest

    Hoggy

  • I forgot to say to you Rab, that I have now got a new wardrobe of clothes and have been on a shopping spree since I had been told.

    Hoggy

  • Sorry that the news was not better. You comments since I joined the forum have always given me support and hope, when it was difficult to stay positive. What ever your decision best wishes thinking of you.

    Olic

  • Hi Rab,

    I was very sorry to read your post,with your knowledge I am sure whatever you and the lead onc decide will be your best option.Best wishes.

    Stewart

  • Hi Rab sorry to read your news, youve always been positive and a great support to everyone on this site, agreeing with all the other comments that its hard to know what to say except were all thinking of you and good luck with whatever you decide for any treatment you are offered

    Take care

    Julie x

  • Hi Rab, So sorry to hear your news. I think many of us are always in fear of that sort of news. I can quite understand you considering your options on treatment. I know we all attempt to beat this horrible disease, and you of all people have had a battle on your hands. I wish you all the best and thank you for all the past advice etc that you have given out to help others. xx

  • Hi Rab. I am so sorry to read your post. I hope the conversations with your lead onc are helpful. Sending you lots of love and my thoughts are with you.

    Janey_H

  • Hi Rab, Thanks for your post...hope onc meeting is helpful. You're right, no one knows how long the future is, (the day my husband was diagnosed, a passenger plane was shot down out of the blue over Ukraine). Nonetheless I am sure you are living each day as well as can be and hope you are celebrating the good days. Wishing you good energy and lots of good days and a bit of good luck too. Hugs Katherine x

  • Hi Rabbie, I was so sad to read your post, you are such an inspiration to us all, I do hope you get some options from your oncologist, I dont know what else to say except you are in my prayers.

    Margaret x

  • Just wondered if there are any clinical trials that you can try? Wishing you all the best x

  • So very sorry to read this Rab. You now have no excuse for not trying some alternative therapies. My heart goes out to you, but will inbox you. I gave a date fir a weeks time for chemo-desperately don't want, so stepping up my programme in order to avoid or worst case scenario minimise effects of chemo. Doctors nit always rught & I am a big believer in the power if the human spirit & the God you believe in to effect miracles.

    Huge Hug & you've still got that hole in one to do.

    Laura

    xxxx

  • Thoughts are always with you Rab...do what you and your family feel is right....your the only ones that matter xxx John

  • Dear Rab,

    I wish you peace and happiness and that you suffer no pain.

    We never know what's around the corner something just may come up.

    I truly hope so for you Rab. Take care of yourself and your lovely wife.

    With very best wishes for the future, Lot's of Love,

    Irene.xx

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