Mucinous 1c belt and braces treatment plan

[lynn6156]

Hi all,

Only adding this so anyone in the future can see what was suggested for this rare thing (I'm calling it Johnny - when I picture it I keep seeing that maniac moment from The Shining where Jack Nicholson axes his way through the door 'here's Johnny!' lol. Yep I'm losing the plot!

Anyway back to the point - first meet with very pleasant oncology consultant. Generally went as expected - we hope we've got it all in the surgery but due to the small spillage incident we suggest 6 cycles of Carboplatin only. No point in genetic tests, no statistics for overall survival or recurrance of this stage with or without treatment as it's too rare. No known trials for this stage (or possibly any stage) that she's aware of for mucinous. No suggestions of what we'll do if it comes back. Hey ho! So it's a kind of cross your fingers and any remaining bits of anatomy you have that surgery/carbo will sort this.

So - there we have it. I have to wait a short time while they liaise with my gastro enterologist as I also have Crohns disease and they want to be sure my small bowel will cope. Initial intro to the nurses/unit/bloods etc scheduled for 10 days time.

Lynn

x

[izzybruce]

Exactly the same thing happened to me burst three days before my op, had the six rounds of chemo, finished October scan in March, which shows no evidence of a recurrence in that area, so three monthly check ups for ten years, mine is muchinous, not much data for this type the bit I found on Google frightened the life out of me, asked onc but they didn't seem to know much, so they couldn't reassure me, xxx

[lynn6156 in reply to izzybruce]

Horrible isn't it. Before I knew it was mucinous I had all these plans about what I would and wouldnt have and where I would go. Now it seems all the choices are non existent except this one. Oh well....I'm hanging onto the fact that Sunfleury has done so well !

Lynn

x

[Sunfleury-UK in reply to lynn6156]

Will be thinking of you Lyn and wishing you hope & strength XX

[Petrolhead]

Hi Lynn

Good luck with the treatment. Certainly different oncologists have different views on treatment and maintenance regimes.

Did you look at that paper by Frumovitz and Brown 2014 ?

Regards Fay

[lynn6156]

Hi Fay,

Yes, thanks - I've read it 4 or 5 times now. It's definitely the most enlightening information on this and I mentioned the Folfox study to the oncologist yesterday but she shrugged and said there weren't enough patients to prove a case. We'll have to hope someone somewhere is working on this...

Lynn

x

[Caroles1]

Hey,

We are all in it together, I had 6 months carbo/taxol after op and before op 2 weeks draining of ascites,still 3 years clear, but regular checks,

We can do it girls!

Xx

[lynn6156]

Yay! Well done you!

If the power of collective thought could do anything you'd think there are enough of us in here to sway the odds in our favour!

Maybe we need Derren Brown - didn't he claim to influence the lottery numbers with crowd thinking.....

Lynn

x

[KiwiGirl04]

Hi Lynn

Good luck with your treatment, I hope you sail though it with ease 😊

Sarah xx

[lorraine71-Australia]

Hi Lynn.The word cancer covers such a wide range of cancers, treatment and trials are advancing all the time but the rare ones seem to miss out, I have ovarian high range stage 3 for near 4 years and my oncologist told me people are living longer with all the new research.

My last scan showed I now have a spot on my adrenal gland which is quite rare.I did google and and the news was not good this is way we should not google.

I've just started my 6th chemo treatment with Carbo/Caelyx I hope this might also zap the spot. I don't know the treatment or if there is any for adrenal gland other then a operation and still no good news.

The thing with cancer we are all so different when it comes to treatment and even our oncologist don't understand way so hoping your plain gives results..Take care Lorraine xx