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

oldest • newest

Inula

3 years ago

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

jujuju

in reply to Inula

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

hedgehoggy

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