Stage 4 bowel cancer

tunc1982

Meeting with my Oncologist

So I've not actually seen my oncologist since my diagnosis. My last consultation was with another oncologist and was very much 'you're coping well so far, let's continue'. I didn't get a physical examination or anything.
Anyway, last time I saw my Oncologist it was obviously very doom and gloom, he could feel the "bobble" of tumours in my pelvis that were making me inoperable and incurable and was very much of the opinion things won't end well. (There were about 4 joined together)
He nearly fell off his chair when i walked into his office! He couldn't believe how well I looked. Nor could he believe how well I'm tolerating the Folfiri with no side effects. He was impressed with my weight gain as well and the fact I have zero pain or symptoms of my cancer. He then examined me and his words which will forever be engraved in my memory were "I don't normally like to say too much without CT scans, but I'm astonished to say I can no longer feel any of your bobbles"! He said I'm truly a fighter and he's really hoping my inoperable status will change one day. I still have a very long way to go, I'm not even half way, and I'm very aware things can change very quickly in the world of Stage 4 Inoperable Bowel Cancer, but for now, I feel like my body and the chemo is doing just what it needs to and I'll take this with open arms! It was so nice to have a joke and a laugh with an oncologist and walk out with my head held high feeling positive! I will keep on keeping on! And it goes to prove, statistics are just that. Numbers. Paper. Not real life. I have no idea what the rest of my cancer is doing (diagnosed with a descending colon tumour, bobble of 4 tumors in pelvis, extensive peri mets, 3 liver mets and 13 nodules on both lungs!) but I know we all need to have faith in the strength of our minds and bodies. They are stronger than stats. And also, despite my diagnosis I have the best quality of life at the moment. Stay strong!

tunc1982
Quote from @charleyb:
@tunc1982 your positivity shines! Such a great post! keep going and keep proving them all wrong!!

Thank you πŸ₯°

Catt79

@tunc1982 that all sounds amazing! I hope your treatment keeps giving such brilliant results. :x::x::x::x:

greyhound gal

I’m keeping positive, just like you @tunc1982 πŸ‘. I truly believe it helps. Keep on keeping on πŸ˜ƒ:x::x:

tunc1982
Quote from @greyhound gal:
I’m keeping positive, just like you @tunc1982 πŸ‘. I truly believe it helps. Keep on keeping on πŸ˜ƒ

We've got this. πŸ’ͺ. Positive thoughts only

cyclingjohnny

hi @tunc1982 I think your post is absolutely fantastic and very inspiring, none of us are statistics or percentages, we are all just trying our best to beat this b--tard of a thing, wishing you all the best for the journey ahead, cheers john.:x:

tunc1982
Quote from @cyclingjohnny:
hi @tunc1982 I think your post is absolutely fantastic and very inspiring, none of us are statistics or percentages, we are all just trying our best to beat this b--tard of a thing, wishing you all the best for the journey ahead, cheers john.

Thank you. You are absolutely right. And this forum has helped strengthen my resolve to stay positive!

Nats53

What a positive post @tunc1982 it definitely does help to stay positive and I’m so pleased the chemo is doing it’s job. :x::x:

kas52

TUNC1982 very positive indeed.I always say it helps,some way for sure.My husband is always si positive even we have ups and downs during treatment.Good luck.Hugsxxxx

Gypsy

What a great post @tunc1982 and I so agree with you. Hugs, Gypsyxx

Baxter2

Hi @tunc1982

Wonderful to read your post and the amazing progress you've already made on Folfiri! both Folfiri and Cetuximab have worked extremely well for me and hopefully will do for you too! Are you suitable for Cetuximab have they said?

Wishing you well and sending lots of love

Karen πŸ’šπŸ’œπŸ’™β€οΈπŸ’›

Bear G

Wonderful news @tunc1982
So very happy for you!
Big hugs
Bear
:x::x:

louise05

This is amazing. I think when people always say "think positive" they have no idea how much attitude helps! Congrats and I will cross my fingers for great CT results :x::x:

loubylou

@tunc1982 how amazing what a wonderful post to read ❀️

tunc1982
Quote from @Baxter2:
Hi @tunc1982

Wonderful to read your post and the amazing progress you've already made on Folfiri! both Folfiri and Cetuximab have worked extremely well for me and hopefully will do for you too! Are you suitable for Cetuximab have they said?

Wishing you well and sending lots of love

Karen πŸ’šπŸ’œπŸ’™β€οΈπŸ’›

That's never been mentioned to me, I had a question mark on my notes that we spied when I had my PICC line fitted under the immunotherapy option (it was the reason I couldn't move my chemo to my smaller local hospital) but when I saw the last oncologist I asked her and she said I wasn't suitable. Should I ask about Cetuximab do you think? Might bring it up next month at my next oncologist meeting. :x: :x:

Baxter2

Yes @tunc1982, you should ask if you are KRAS 'wild type' or 'mutant'. Cetuximab is offered for 'wild type' which is around 50% of tumours tested. It's likely that you're mutant if you haven't been offered cetuximab. I would definitely ask though.

Either way, it sounds like you're doing amazingly well on Folfiri alone!

Sending love

Karen πŸ’šπŸ’œπŸ’™β€οΈπŸ’›

tunc1982
Quote from @Baxter2:
Yes @tunc1982, you should ask if you are KRAS 'wild type' or 'mutant'. Cetuximab is offered for 'wild type' which is around 50% of tumours tested. It's likely that you're mutant if you haven't been offered cetuximab. I would definitely ask though.

Either way, it sounds like you're doing amazingly well on Folfiri alone!

Sending love

Karen πŸ’šπŸ’œπŸ’™β€οΈπŸ’›

Ah ok, I've never asked anything about that side of things, it was all so negative at the time, I just nodded along and gave up hope. I feel so differently now, feel like I want to know more about the genetics of my cancer etc. I think your confidence with that side of things takes a while to grow! It's so overwhelmed at diagnosis, especially because it was near Christmas and we have two little ones to look after! Cancer certainly is a journey! Thank you for the advice and lovely words :x: :x: :x:

helena

Fan blooming tastic news to read @tunc1982, so uplifting! Love, Helena :x::x::x:

Baxter2

Good morning @tunc1982

I completely understand where you're coming from! I was the same at first and as I was told I wasn't going to survive the year pretty much accepted it and made plans for that. Only with the support of close family and friends, did I manage to climb out of the very dark place I was plunged into and take back some sort of control. I did this with the help of 1:1 counselling from Maggies, antidepressants and extensive research. You can do it too now that you're in a much better place emotionally. None of this is easy I know!

Lots of love

KarenπŸ’œπŸ’šπŸ’™β€οΈπŸ’›

P.s. maybe @helena can help you with this? :x::x::x:

helena

Hi @tunc1982 - I found myself in a very distressing dark place last year as I have an oncologist who seems to relish giving me bad news and I had always been a very 'passive patient' and just listened to whatever he told me and accepted it. After an extremely negative scan result and subsequent meeting with him (where he was over an hour late as usual) I descended into a dark depression and if it hadn't been for this forum and the wonderful forumites (they know who they are) I would have kept on going downward. I found an inner strength and took my head out of the sand, marched into the oncologists secretary's office and asked for an urgent meeting. This was the turning point for me emotionally as I was no longer scared of him, or placing him onto a medical pedestal - I felt as if I were in control and had gone from 'worrier' to 'warrior'. I questioned some of his decisions, I asked for specific details and I also told him, in no uncertain terms, that if he wasn't prepared to fight for my life and leave no stone unturned then he wasn't the man for me. I don't want to hijack your post, but I would urge you to question, question and question again. Knowledge is power. Love ❀️, light ⭐ and diamonds, Helena :x::x::x::x:

louise05

Just to say @tunc1982 , i had a chat to my oncologist about genetics. He told me that when only the basic punch biopsies at done, they might get a few indications of genetic things, but they tend to only do proper genetic testing with the tumour itself, i.e after surgery. So I think in my cases the biopsies I had when mine was found gave a few indications of possible wild type/mutations but the onc said this wouldn't change the treatment plan (I wasn't in the same situation as you though) and, i was just told my surgeons this week that genetic testing is currently now underway along with tumour info as I'm now post-surgery. The surgeon said if the oncologist wants to, he can also order more extensive tests after the initial results come back....

Having said this, I do think if chemo is a massive part of your treatment for longer term, and surgery not on table at the moment, i think any genetic info they can give is ideal really because some mutations do seem to be resistant to certain types of chemo (I have seen on the forum, so no idea which ones or what). It may be worth emailing your oncologist's sec or asking next time you have an appt.

lx