Old member returning in tough times

Blackcats

Sending positive wishes your way.

foxgloves

Best foot forward. It's something you just need to get through now  Thinking of you,
F

Lanky_larry

Been sat in the waiting room for nearly an hour, running really late
this is ruddy torture 

Blackcats

I really feel for you.  In my experience there is nothing that makes the wait less awful.
remembering to breathe is the best I could manage.  

Lanky_larry

Thank you everyone for the support - the chemo is shrinking the cancer - doing 4 more rounds then rescan. After that options are the stop chemo, or do maintenance chemo, ultimately they have the same affect on life span so quality over quantity..
Dunno - feel like we should be really happy it’s shrinking, but I feel like she was trying to say after the next 4 rounds he should stop and just enjoy life…

he is on the waiting list for surgeons to see his scans but apparently it’s a very long list so we’re not holding our breath. 

Should be feeling happy, the chemo is shrinking it, but feel exhausted and deflated.

daft really. But that’s the cancer rollercoaster.
im sat at home now after dropping him off for round 5 of chemo, trying to resist the urge to eat every bit of chocolate in the house 🤣

Sun_Addict

It’s good news the cancer is shrinking. The next 4 rounds may shrink it even further 🤞

If eating chocolate makes you feel better do it.

Blackcats

I agree with SunAddict about the chocolate ... I'll happily eat a couple of quality street and virtually keep you company

It's so strange getting results and updates.  I remember being told that there are 3 possible outcomes from chemo - cancer shrinks, cancer stays the same and cancer is growing therefore no longer responding to that blend of chemo.
shrinking is the best option in this scenario (not being in the scenario at all is of course the option we really want).  So give yourself time to process the best outcome possible.
if OH is coping well with the chemo and it's shrinking then focus on the next rounds and not trying to make decisions for beyond that.  You can still enjoy quality time between rounds.

I know it might not be possible or affordable but could you pay for a private consultation with a surgeon to get the scans reviewed?  Most of them will have private practice and it might be worthwhile having the review now the cancer has shrunk?  

Lanky_larry

Blackcats said:

I agree with SunAddict about the chocolate ... I'll happily eat a couple of quality street and virtually keep you company

It's so strange getting results and updates.  I remember being told that there are 3 possible outcomes from chemo - cancer shrinks, cancer stays the same and cancer is growing therefore no longer responding to that blend of chemo.
shrinking is the best option in this scenario (not being in the scenario at all is of course the option we really want).  So give yourself time to process the best outcome possible.
if OH is coping well with the chemo and it's shrinking then focus on the next rounds and not trying to make decisions for beyond that.  You can still enjoy quality time between rounds.

I know it might not be possible or affordable but could you pay for a private consultation with a surgeon to get the scans reviewed?  Most of them will have private practice and it might be worthwhile having the review now the cancer has shrunk?  

Thank you - that’s actually really good advice (sorry that sounds rude! I just mean I wouldn’t have thought of that!) 
I definitely think we could stretch to it, I will put some feelers out and see what it would cost and how we’d do it. Thank you 

(and also you’re right about focussing on now, I’m a !!!!!! for worrying about what will be at the expense of what is now - he is coping well with the chemo - CAPOX is a gruelling regime so we’re lucky *touchwood* he’s got off easily so far - it’s important I focus on the positive and don’t bring him down with my over thinking!) 

Lanky_larry

Had a response in a medical Facebook group that his mutation is an incredibly rare one - currently no research studies on it due to how rare it is. (Less than 0.01% of people with the mutation KRAS have his type so that’s been fun to find out. )

but I have the information now and can keep an eye out for trials 

CRANKY40

I was going to say the same as Blackcats about a private consultation. I would also claim PIP as that (when they get around to paying it) could maybe pay for private consultations or make them a little more affordable. Macmillan nurses are also very experienced about "all things related to" so it may be worth a chat with them. There may be some other things you are eligible for - practical things rather than benefits. 

If you want to see the hospital consultant call the secretary for him/her and ask if they do private consultations and if so where. I live very close to a big hospital and quite a few consultants also do consultations in our nearest Bupa hospital but will then refer you back to the NHS. 

Don't assume that the person that you saw would recommend stopping treatment after the next 4 rounds of chemo. As you've said MrL_L has a very rare mutation so they've probably got no idea what will happen either.