Stage 4 bowel cancer

Barbara

Watch and wait

The radiologist found it difficult to see any signs of disease on my latest scan, and says that at worst everything is stable. I discussed 'watch and wait' with the oncologist and we decided that if the next scan, in 12 weeks, also appeared to be 'clear' he will sit down with the radiologist and go through it in detail, then take my case to the MDT with a view to going on 'watch and wait' then. Although I know that it will eventually come back, and get me, this is all so different to the original prognosis on reoccurrence in November 2016 when all looked dire, and I am finding it difficult to process. And it has all been on bog standard treatment of irinotecan and capecitabine as I am RAS mutant. I think I would have to be off chemo for at least 12 weeks as apparently it is not advisable to scan to soon as it might be before there is anything to see. Any thoughts on this step?

HH79

Hi @Barbara I find your post gives me such hope and really inspiring! Enjoy it! I did watch&wait, it came back and when back on treatment. Enjoy this time!! And live in hope it stays away longer and you have another time off! One thought is long term, is maitenanace an option eg Capecitabine & Avastin? Avastin is private though. I’m a lot more ad on this. Lots of love :x::x:

Baxter2

Hi @Barbara,

All sounding so positive for you!! Amazing!

I've never heard about it being advisable to be off chemo for 12 weeks in order to scan?? I know there needs to be a few weeks before a PET scan, maybe 3-6 weeks depending on local policy. I have my CT scan on the alternate week I don't have chemo. Maybe someone has more knowledge on this ? @Charlotte Nurse Advisor can you offer any information on this?

K💜💙💛💚❤️

Barbara

@HH79. @ Baxter I think technically I am on maintenance chemo as it is not curative. Have discussed self funding no avastin with oncologist, but he is a bit sceptical as there are no biomarkers to say who will benefit, and only a few do. But we are keeping it in the cupboard as a possibility when all other options run out. Am very glad I didn’t start it (or care oncology clinic protocol)earlier as I would now be putting successful treatment down to them rather than standard treatment - and I would probably be bankrupt!
Not certain about the length of time between scans as first time we’ve discussed this, but the scan before my recurrence was after fuve months rather than six and I can’t help wondering if a month later would have picked it up and then I might have been operable! But no point in dwelling on might-have-been. One thing this disease has taught me is to live in the moment and don’t dwell on things..

Charlotte Nurse Advisor

Thank you for the tag @Baxter2,

Dear @HH79,

Essentially every individual case is different and therefore what others experience may not be similar to what is going on with you.

From what you say at present there is no confirmed evidence of active disease. This is obviously very positive news and as such there is no indication to continue with chemotherapy at this time. It is important when possible to give your body a break from the chemo drugs.

Whilst there is as you are aware a risk of recurrence it is extremely unlikely that anything would develop significantly enough to show up on scan before 12 weeks.

That being said your team will, I am sure, keep a close eye on things and treatment plans / follow-up regimes are subject to change if necessary.

With kindest regards,

Charlotte

Barbara

@HH79 thanks!

Jaap

Hi @Barbara. I see chemo breaks or watch and wait as a form of treatment itself.
As @Charlotte Nurse Advisor has said..it gives your body a break from the drugs.
A chance to get taste back (if it goes during treatment)..as a result of taste getting back, to put on some weight..as a result of no steroids = better sleep..no tiring trips to the hospital twice every fortnight either.
My mother is currently 4 months in to a chemo break..and has two more months until her next scan. A bit of "normality" for a further few weeks we hope.

Bear G

Couldn’t agree more with the above comments @Barbara - watch and Wait is still an active form of treatment as it allows intervention as soon as anything happens while giving your body chance to recover.

You know we’re in quite similar positions, I’ve been on chemo for most of the past 5 years as I have active disease, but have taken breaks from time to time. Sometimes these are because the side effects built up and sometybecsuse I had something going on like a big holiday.

When I read your update it was with a big smile on my face as it seems so positive, you’re doing amazingly well Barbara - no sign of disease, wow!

Big hugs
Bear
:x::x:

Barbara

@Bear G I'm still finding it difficult to believe - and I think the oncologist is too, as he preferred me to wait til next scan to go onto watch and wait. Am feeling much more positive now about watch and wait @Jaap and will be very disappointed if I'm not fit for it in September! And thank you @Charlotte Nurse Advisor for your thoughts which helped to give me a bit of perspective.

GD62

Hello @Barbara I'm so glad you are enjoying a chemo break and really positive to read about your NED or DFS at the moment.

Great joy to you and positive healing, lets hope they get you into remission long term.... hugs :x::x::x:

Barbara

@GD62 Not chemo break yet. If still no sign of active disease next time. Think oncologist doesn’t quite believe it. Nor do I!

KatieR

Hello @Barbara I have enjoyed learning about Mindfulness for several years
Especially reading the Padraig O’Morain books after seeing him being interviewed by Philip Schofield on This Morning ...
Some people refer to the Sword of Damocles as the constant fear of impending disaster or death but if you read more about it , You find this story “ Damocles envied the Kings health,wealth and prosperity So the King swapped places with Damocles and when Damocles looked up there was a Sword hanging above his head by a horse hair and he realised that the King was living with constant fear and terror ..Cicero then says he found the long lost tomb of Archimedes, and it inspired him. Fear of death and retribution is what made Dionysius ( The King ) wretched, says Cicero: Archimedes was happy because he led a good life and was unworried about death which (after all) looms over all of us.”
This is a good lesson for us all No amount of worrying is going to make things any better None of us know what is waiting for us around the next corner .?
So lets enjoy what we have today ..eat cake ,drink wine and be kind to ourselves
Cath :x::x: