Rubbish Day

Hi AN

I feel as though we are in a similar path at the moment. I've just been to clinic after a CT scan following 2  cycles of my second line treatment of Sunitinib to be told that it's not working and tumours have grown. Got a third line treatment of Regorafenib which Im going to start after Bank Holiday. Oncologist also mentioned to consider I'll health retirement (I'm only 50) as drug only effective on 6 out of 10. After that only thing available to try is on compassionate grounds and Doctors have to go begging for them.. Part of me wants to curl up and cry and I have to push myself to do something while I feel well enough. Just feeling a bit lost at moment. Plus side I have a wonderful supportive hubby. 

Keep strong

Shall xx

Sorry hate predicted text meant to say HI WB not AN!!!!!

Oh WB I'm not surprised your eyes are leaking! I echo what everyone else has said.  You've still got hope in the next drug and hope that it works. Your treatment plan so far seems to be the same as mine  but in reverse! So I have everything crossed for you

Try and enjoy the cruise and just think abbot today. I hope the coven help to wipe those tears and pick you up. 

Xx

Hi Shal1969

It’s a hard place to be. I’m in a trial at the moment as we have reached the end of conventional treatment but I’m not sure for how long as my last scan result was not encouraging. 

I have had good experience of compassionate use in the past. My consultant did manage to secure me a new drug that gave me 15 months before the cancer started moving again. So there is hope. 

My consultant says if I come off this trial then she has other trial options up her sleeve. Part of me is sceptical - the one I’m on was supposedly my best hope so how much chance is there the others will do much good? Part of me is optimistic - you never know until you’ve tried. And at any rate, being treated in the trials unit is infinitely preferable to the mayhem of routine oncology clinics. 

But the whole of me is determined to make the best of any time off treatment. Nine of the last 13 months have been in active treatment. I’m so ready for a break. 

Xxx

Hi Shall, we haven't 'met' before, but I'm so sorry to hear that your treatment isn't working, and you're facing so much uncertainty and turmoil again. The very best of luck with your next line of treatment. I hope it'll keep you well and stable enough until something better can be found. Having a good cry is natural, but I hope you and your husband will still have lots of good times together. xx

Sorry to hear this WB.  I'm also starting Eribulin next week for 3rd line chemo, after it becoming resistant rather quickly.

Reading it seems we are quite similar.  I also have an alien boobie. Right one has been taken over, incredibly aggressive and rather intelligent.  They are talking about the possibility of.breaking through the skin etc.  As this wasn't the original tumour i find it slightly harder to deal with.

My onc has said she has a few more drugs up her sleeve bit also talking about compassionate drugs, immunotherapy and trials.

Have everything crossed this will work for both of us and is tolerated well.  Xx