A Setback

Hi Eintracht, having had a recurrence from being clear I understand how down you can feel after hearing the news, as well as a pinch of disbelief. We have spoken before Eintracht a long time ago, I was an unknown primary as well and first diagnosed in 2015 when it was in many nodes, became clear and had a couple of recurrences.

At the moment your team are being careful as they want to catch things early and start treatment again, if they think you need it. Keep in your head that even if it’s back you are not out of treatment options, are you? Correct me if I’m wrong but you had one year of nivo, you have not had ipilumamab another immunotherapy that works on different cancer markers, yet, and works on the whole body no matter where it is. Having said that, I know I’ve had a sign of relief when my recurrences have been confined to my nodes even if it’s in many and causing symptoms. Thankfully treatment changing has now coped with this.

I’m imagining that you want to get into the head space of carrying on and being positive. You are not out of options and other than the scan telling you it’s back you would not have known, or am I reading this wrong. So time to live your life again like before you knew but find out more about the next treatment you may be starting, which may well put you back to clear again (or perhaps stable with no symptoms is nearly as good). I know there are really down times and that’s very natural as I’ve had them and will still face them ahead but I’m hoping you just needed a pep talk and that this will help a bit. My profile will show you a bit about what I’m going through, I’ve failed Pembrolizumab after #57 but I’m on targeted therapy drugs for the 2nd time and have a clinical trial in my pocket for when these tablets give up, lots of uncertainties to push away.

Hi K8,

     Yes I remember our conversations in the past and I've continued to follow your profile to see how you are doing. A major setback for me and one I wasnt expecting - you slowly get used to scans being "clear". The chest/abdomen/pelvis scan showed one 7.5mm lesion on my right lung. Oncologist explained that it wasnt clear what is was but given the shape and colour he suspected it was cancerous. So, full PET on Monday with results Thursday. Hopefully hasnt gone to my brain. If it is unlikely but possible non-cancerous then happy days, if it is a single lesion with no others he is confident it is treatable with either surgery or radiation or double drug dose immuno. If there are other lesions then the double dose immuno is probably the way forward. He was surprisingly positive saying it was not a death sentence and all options were treatable nd he successfully treated patients with 50 or more lesions. As this is basically stage 4 I couldn't understand how he could be so positive given the survival rates. I'm sure they have to err on the cautious side and not give false hope?? Thanks for your reply, happy you seem to be doing fairly well. Can you remember when we first spoke who one of the other people in our conversations was who had gone to stage 4 but wsa now completely clear? I'd like to re-read his profile to give me some hope. Thanks again. Take care.Chris

It might be Tim90

Yep, thanks. Re-read Tim's profile - an uplifting story. Do you think my Onc is being overly positive? Would they really do that? He knows I suffer from anxiety about all this. I keep telling myself a 7.5mm lesion is not that big or out of control (as long as there are no others), but then the thought of cancer in my lung kicks in. Its too small to biopsy and the PET scan might not even pick it up (but its there).How can he be so positive when Stage 4 has such low survival rates (20-50%) I've read. He never even mentioned the option of he cant cure it. Take care.Chris