Bad news

I don't really know what to say. I'm sending you all the love and support I have and the biggest hugs ever. X

I'm so sorry to read this thread, what horrible news. I really hope the chemo isn't too awful and you find you're in the 5% where it works. Such hard information to process. 

So kind of you to say to that immunotherapy works well for some despite no markers - I am one of those. I feel terribly guilty about it given your news Roobarb but Ginajsy, please do pursue if it's an option as I was told it was unlikely to work and I too had only a slight percentage match. They can't accurately predict who will respond yet. I'm nearly at a complete response - even my brain mets are responding. It's so hard that we're all so unique in this... 

I hope you can have some nice time out whilst you're processing all this Roobarb. Be kind to yourself. 

lots of love and hugs from me too.

So sorry to read this, i was in a similar position a couple of months ago re no available treatments but as always my oncologist came up with a new plan and i am having some radiotherapy. I hope the chemo helps and you dont get too many side effects. All the best. Lynn 2xx

Hi Heather 

I am still catching up after my break away from the community and I’m sorry I missed this awful week when you faced such a difficult decision. I’m glad you have a plan - and that the decision on whether to stop treatment pushed into the future for now. 

Having been through carbo/taxol and Caelyx/carboplatin I can tell you I found the former much tougher than the latter. Having subsequently been through two clinical trials, I can add that these can give you good results but also have a few added bonuses. The trials unit where I’m treated is extremely well staffed with very experienced nurses. I’m treated like a queen. Instead of waiting to see the doctor, the doctor comes to me. They keep an eye on all the peripheral issues too - for example picking up a kidney infection at an early stage and nipping it in bud and referring me to a haematologist when a scan showed I had a tumour growing into a blood vessel. 

I think facing up to the situation where there is no more treatment is something we’ve probably all thought about. I think it’s coming for me - not next week, probably not next month but I’m pretty sure over the next year. I don’t know how I’ll react. I’d have to be very sick indeed to turn down a treatment so I suspect it’s going to be more a case of accepting a situation than of me making an active decision. 

Good luck with the chemo. 

Lots of love xxx

Thanks everyone for their responses, Lynn 2 I hope the radiotherapy works a treat.  

I loved being part of a trial, I went into see the nurses after and we were all in tears.  So far no one in Edinburgh has responded on the trial I was on and they started with such high hopes but i I guess that is the nature of the job.  This does mean they might open another trial in 2020, so options!

I start Carbo/caelyx on the 13th which I hope means I will recover in time for Xmas day.  I did NOT thrive on Carbo/taxol so it’s good to hear you found this regime a wee bit easier, we shall see.....it’s chemo after all but hey ho.

anyway thank you to everyone who took the time to respond, it really helped x