Hello and help

Hi 

I am so sorry to read your post ! What a difficult time you have endured .

On reading your post I wondered if they have mentioned immunotherapy and if you know a bit more about your cell type ! If it is then there is some very positive results coming through from America . People with MSI and lynch syndrome in America can now have it as first line treatment . Not sure if it applies to you but worthwhile looking into . My friend used it for a spread from lung cancer which was literally extensive and responded very well .

Just wondered if you knew a bit more about your cell type . You might also like to join Bowel cancer U.K. and they can point you in the direction of a group for stage 4 patients who share a lot of information on current treatments /trials etc . I think you will find them pretty well informed . 
Hopefully they will be able to get the required information on your tumour type quickly and get a better treatment option for you .

We are fully here for you to listen at any time . You might also find our helpline useful when it comes to telling children . They would be able to get you the best supportive information and possibly point you all in the direction of some counselling.0808 808 0000.

Take care ,

Court 

Thank you so much for replying! When I was told it was curative I didn’t really seek out details, probably avoiding it. I have now requested all my reports and scans etc so I have more details. Apparently I was screened as to whether immunotherapy would be helpful but I don’t have that type of cancer. Currently awaiting test results to determine exact nature and whether it is resistant to all chemo. 

Once you get that information they will be able to tailor your treatment. Another member here  recently posted about a treatment I had not heard of before called Braftovi . I think ! The only reason I mention it some mutations work better with specific treatments . I had not heard of this treatment yet it seems to be tailored for braf mutations . Just to give you an example of finding the right treatment for you might give you a better response and the oncologist will be able to define that better !

I am so sorry you have had such a blow ! My mum was the same regarding information to begin with and I can see the benefits in that approach. I did however do a bit of reading around to see options and availability. I also had my eye on second opinions too ! 
What chemo are you having tomorrow? 

Even if you want to PM me at any time I am here to listen . 
Court 

Hello Willowfred

I'm the bloke that Court mentioned in connection with Braftovi. I had previously been on a regime of Folfox and some other stuff before that and neither of them did a dickiebird. Then an old pal of mine sent me a newspaper article extolling the benefits of Braftovi to the, I believe, one in six people that have a certain gene mutation  - and I'm one of them. 

I have now had seven fortnightly treatments. I also now have zero stomach pain. Zero. Tomorrow I will have another CT scan which I guess will determine my fate. Im surpressing the optimism in case the scan says something different to how I feel. My condition is inoperable so I'm rather hoping that Braftovi has saved the day. 

Hang in there girl, the fat lady ain't singing yet

Thanks both for your helpful comments. Tomorrow I’m starting Irinotecan, which my oncologist has told me may be completely ineffective if I have specific mutations but we are still waiting on the results to come back. 

Gaul I really hope your scan tomorrow comes back with some positive results. I will keep everything crossed for you. 

i should also point out I’m a bloke! I find choosing usernames almost unfathomably stressful and all the obvious ones were unsurprisingly taken. So I went with my favourite tree and my middle name!

Court if I can work out how to PM I will no doubt take you up on your kind offer. 

all the best 

I did that once on a cancer site along time ago . Used my sons name ! It was quite interesting for a bit !

All the best  and I am hoping the scan backs up the reduction in symptoms . Has to be a good sign surely! 

for some strange reason there is a subgroup of patients who do better with Irinotecan

Hope it goes smoothly and the correct information surfaces soon !

Friends request on its way !  
Should show up in your emails  !

Take care ,

Court 

Hi Willowfred,

I've been on this site since I was diagnosed the end of last year. Have only just started posting. I don't know enough to give any advice regarding treatment. I do know from reading other people's posts that there're many treatments. Sometimes it's about finding the right one. I'm so sorry that you're having to go through this. It's devastating and a lot to take in. My advice would be to take it one day at a time. Give yourself the time to process everything. Allow yourself to have a meltdown, completely normal. Take any help that's offered. Don't give up!

Cheryl x

Court, well everyone really...

Another rush job to the old infirmary yesterday with chronic bowel pain - after all the crowing I'd been doing about my perceived progress. Hmph. The day after the CT scan ffs!

They're starving me. Got a pipe up my nose and into my stomach with another bag suspended around my neck collecting the delightful proceeds. 

About 10 am this morning I got the visit from my Oncologist and another important looking woman. She/they had studied my CT scan. I went cold. I was told that my bowel was kinked. I was also told that they felt that they could do something about it. Then I was told that the tumours had reduced in size!!! . I had trouble taking this in so I said 'are you telling me good news?' 'yes I am' says she, holding my hand. Bravo Braftovi.

I've now got, it seems, several more days in here, hoping that I immerge stronger and for a bit longer on the planet.

I've been battling this bloody desease since September 2019 so I reckon I'm due a bit of good fortune.

So take heart those that can't see any light at the end of the tunnel cos I think that I may have just found it. So may you. 

Gaul

Dear Gaul,  

Reading this and all the posts here has made me feel very warmed. I am so pleased that you have had good news. Nicola. 

Yippee 

Thats incredible news ! So pleased for you and glad that” other important looking woman”  turned up to give you the good news ! Still loving your writing style you, you have managed to retain that throughout this !

I am sorry you have a hospital stay to endure and not liking the sound of the tube up your nose but also hoping they resolve the issue and get you home soon !

So pleased your friend found Braftovi . It’s even got a nice name !!

You have made my day !

Court