Stage 4 bowel cancer

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EssDub

Bone Mets (spine/pelvis)

Had a bit of a draining day yesterday as I was admitted for suspected C8 vertebra involvement and pain management. That went ok (C8 was clear).

The problem was that I was due to have a major review chat with oncologist in the afternoon. (Sort of a D-Day for me and my wife to ask lots of questions, brief from MDT, schedule/plan further treatment, maybe even some answers!). The meeting was cancelled, but I wasn't really given any valid reason. (further rad to alleviate pain was sort of a delaying excuse in my book).

I REALLY had to battle to get to see the oncologist (tbh, I thought she was going home out of the door at 5pm). I had to push for information, suggestions, treatments, plans etc.
It really shouldn't be like this!!

I know I dont have the 'normal' liver/lungs mets, but surely there is some precedence for bone/spine mets!?
The main stumbling block apparently is what chemo treatment to go on CAPIRI v 5FU (I may have this wrong! - my head is not in a good place, and I'm no expert!)
But, it all depends on the biopsy report which we are still waiting for (biopsy taken on on 22 Jul!!!). Was hoping to get on chemo ASAP, but seem to be delayed at every turn.
Feeling very low (as is my wife), as it seems nothing is going to plan (might even say what plan!).
Just hope I've pushed enough to get things moving 🤞

Baxter2

Oh my, this all does sound very frustrating and upsetting for you both @EssDub. I'm so sorry you're encountering all of this! I'd suggest you have a chat with your hospitals PALS dept. (Patient and Liaison Service). They should be able to help. That's their aim as they don't want issues to escalate and perhaps to the level of a formal complaint. Another very useful and resourceful contact is often the consultants secretary's and also your specialist nurse.

Our lovely @Jane39 has some experience of bone mets which she may be able to offer advice about (thank you in advance Jane)

Please let us know how things go if you can?

Lots of love and my very best wishes,

Karen 💐🌼🌸🌺🌻

louise28

hi there, @EssDub so sorry to hear this. I think I mentioned Loz (Another user) before who has had radio for the spine and bone mets. I would use PALS too as when they get involved things do seem to move.

:x::x::x:

Jane39

Hi @EssDub
I am so sorry to read your post this afternoon. How frustrating and completely exhausting. I can completely understand how low you both must feel.

That doesn’t seem right that you are waiting for biopsy results from July ?

I had bone mets in skull, spine and pelvis ( plus liver, adrenal, distant lymph’s) in 2017.
I had FOLFIRI and Panitumumab ( similar to Cetuximab which are targeted therapy drugs). This regimen worked exceptionally well and got my bone mets to a sclerotic / healed position within 6 months. I had additional radiotherapy ( 5 sessions over 5 days) to the skull bones as my oncologist felt they were in a very dangerous area. All have remained stable since with no active disease.

I really hope that you have had some success today with news and a plan.
Keep pushing.
Keep us updated.

Best Wishes
Jane :x:

Thanks for the tag @Baxter2

EssDub

Thanks very much for your replies. On the positive side, there's no sign of any other mets (liver etc), and original bowel tumour has shrunk. Having another quick 5 bursts of rad for pain relief next week as well as the start of targeted chemo.I 🤞

Maybe I was just having a bad rant day!😜 But thanks so much for listening.

EssDub

Thanks everyone for your encouraging replies. I guess maybe I need to be a bit patient (in both meanings of the word!).
Next week will be a turning point I think 🤞

Jane39

Hi @EssDub
I am pleased to read your update that sounds very positive.
Good luck with radiotherapy next week.
We are all alllowed to have those days and I’m not surprised by what’s been / not been happening.
Take care
Jane