New diagnosis, young, chemo, keto, ivermectin.

Hello TTTXXX 

I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer but by me replying it will be "bumped up" to the top of the group. There I hope it's seen and replied to by other members of the bile duct group.

Best wishes - Brian.

Hi

 my sister got diagnosed as well; both livers affected, so not operable. On chemo and immunotherapy 

Sounds very similar.  Hows she dealing / coping with the treatment? 
how old is she? 

She’s just hanging in there. She was started on gem/cis/durv, seemed to make her worse. They said she has a high burden of disease in her liver. She’s just 38

Oh gosh worse in what way? Growtth? Are rhey trying something different?  Yes my liver is rhe same.  
have u found the ammf charity yet? Theres a whole conference in may with lots of prof talking about trials etc.  you can go in person or virtually. 

Is she looking at anything else diet/alt meds/ or a change in chemo? 
so worrying for you all, its such an awful cancer

She has managed only 2 cycles of chemo with hospital admissions in between for sepsis. The inconclusive biopsy results and the lack of response to treatment are really worrying to us.

i read about ivermectin but she’s on the fence about trying it yet.

 I’ll take a look at the AMMF, thanks for that.

 Have you started on chemo yet?

I had sepsis when this started (they thiught ir was just a dodgy gallbladder and found it when trying to remove my gallbladder but had to stop). I was in hopsital for 8 days straight after rhe cancer diagnosis to get the sepsis under control) and rhat sorted that out. I had first of chemo before i left hospital and just onto second now. once rhe sepsis is sorted she will feel very different i am sure.  

what doc is she seeing where? 

I have stage 4 melanoma have tried immunotherapy but my cancer was too aggressive plus it caused other problems. I ended up with severe sepsis which was very touch and go. I'm now on chemo tablets and targeted therapy. It worked for about 3 months. Sadly now it's not working properly so starting to grow again. 

I have just bought some Ivermectin from India and intend to get Fenbendasol aswell. Need to work out the doses yet.  Who knows if it will help or not but I've nothing left to lose. 

I really hope you find something that helps you  x

Hi

 I’m so sorry for the late response, I’ve had quite a few going on. 
she’s under the HPB oncology team at Christie’s Manchester.

 How have you been coping with your chemo?