katiaf
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Hello!!
Here is my dad’s story:
My dad had stage 4 BDC with peritoneal metastasis.His oncologist at the time wanted to treat him with gem Cis. We were extremely reluctant to go down that route. Classic chemo has no effect on peritoneal metastasis.
I had looked into a new treatment called PIPAC which is pulverised chemo into the abdomen.The oncologist said it would not work. We followed our instinct. IT WORKED on my dad’s metastasis. It is estimated that it prolonged his life by at least 3 months.
Now, I have just been told ( by the inventor of the PIPAC, professor Raymond) that this treatment will be available in the same hospital that said it would not work!!
Do Seriously look into this .
( if you search for PIPAC on this site, you will find our story )
Right, I don’t know where to start…
Dad stayed in hospital for 6 weeks! Yes, SIX weeks!! It almost killed his will to live.
He came back home to us last Saturday. He is receiving palliative care at home. ( in his case, flushing of the biliary bag, washing, …) Mum and myself are also looking after him 24/7.
Rather amazingly, it is like he is coming back to life, bit by bit! He had ascites when he left hospital and needed 2 punctions a week. Now, his belly is flat!!!
He stopped eating in hospital and then had an gastric occlusion .
He is now eating , slowly, small stuff, but went from nil by mouth to solid food in a week.
I don’t understand it fully other than he feels good here.
The ascites going away is really puzzling to me.Anyway, I will try and keep you updated on what happens next!
( also, for the first time in ages, his bile is green rather than bloody!!! And his jaundice is less and less obvious.)
However he is very weak. We use the wheelchair to take him to the loo.
Anyway, I must go!
All the best to you.
Hi everyone,
Thanks for your replies.
The news are not so good. Dad has just been admitted to hospital with yet again another cholangitis. I have no idea if antibiotics will work on him anymore as he has had so many.
This is so hard.O.K!!!!
A very brief update as I am at the airport and it is all crazy. But crazy good!!
Dada has had 2 PIPAC pulverization in his abdomen for the peritoneal metastasis.
Today the professor has confirmed|THEY ARE NECROTIC!!!!!!!!!!!!! YESSSSSSSSSS!!!!Ok. Gotta catch my flight. But this is huge hope for those with PC!!!
Hi Sherri!
I am so happy that the info about the PIPAC might be of use to you.
I have just found a rather recent article iwritten in English about the procedure.
It is with the inventor of the PIPAC and I find it incredibly fascinating. What a man!This Just might be helpful:
my mum has never been on chemo, but she has suffered with extremely painful cramps, mostly in her legs.
Ît turns out that she is very deficient in magnesium. Our doctor has prescribed her magnespasmyl forte and that is absolutely working. Maybe you could try this?Hi Gavin,
Actually Talked to one of the professors in Bochum regarding PIPAC and peritoneal mets for cholangiocarcinoma. They have already dealt with cc patients, so it is indeed an option and the pipac was actually developped to deal with peritoneal mets.
My question still stands about photodynamic therapy and mets. I was wondering if those were compatible. I am not sure.
Thank you!
Thank you very very much!!
You are all so kind, I am overwhelmed.
One thing that is bothering me now:
Maybe I did not understand well, but it looks like PDT is not advised for people with mets.
Though some of the studies I have looked at showed people with mets who had it.
Maybe after the results, they realised it was not a good idea?
I wonder, if the mets go away with the PIPAC, is it considered that you still have mets???And Gavin, did your dad have mets when he was treated?
Thanks again!
I will let you know how it goes.
The hospital that does it in Bochum , Germany is waiting for my dad’s report.Hi all,
here is an update on dad’s situation since the aborted operation:
( quickly summing up for people who might find this post whilst using the ” search” facility of this forum:
Dad’s resection ( his CC was presumed to be type 1) scheduled for Tuesday the 07/07/2015, was stopped as it was found that he has metastasis on the peritoneum. A new scan showed a spot on his liver and one on his diaphragm )On Wednesday, we learnt more about mets on the peritoneum and about how hard they actually are to treat. Until now that is…
An incredible new treatment called PIPAC shows extremely good results for those mets. Basically, a hole is done in the stomach, just like when you have a laparoscopy, and chemo drugs are vaporised directly on the metastasis!!!
This is an article that was written about it on the 30 th of June 2015.
Yes, it is in French, but do use Google translate and you will be blown away by it.
Here is a youtube video about it. This one shows the man who invented the process.
https://m.youtube.com/watch?v=daxKArtpjtQ
Marion,
I am speechless! Thank you so much, it would be such valuable information to have for people in Europe.
I fully agree with your last statement. Unity is strength.Many thanks,
Katia
Well once again My family and I are just so grateful to all of you. You are an incredible bunch of people!! We appreciate your answers so much!
I shared your answers with dad today and he will talk with his surgeon about the molecular testing, see if it exists in Belgium.
If not then Foundation One will be the way to go.His operation is no longer taking place on Thursday, as his surgeon will be operating on an emergency case on that day.
Dad’s operation has now been rescheduled for next Tuesday.
We think maybe that is not so bad as it means he will be able to put on a bitmore weight. ( he has put on 1 kilo since last time I told you all about him having trouble eating! The stent is working really well for him and his bilirubin levels were at 5 a week ago, coming from 29.5 5 weeks ago!!!.)Again, many many thanks.
Katia
Thank you Kris!
His bilirubin was at 29 when he got the stent! And believe it or not, at the university hospital in Liege, Belgium,were he was supposed to stay , they told him he could wait for another month to have anything done to him. He had said he wanted a second opinion and now he thinks that is why they just left him like that. When he asked them over the phone why they had not placed a stent during his first days of hospitalization there, they said that they had made everything according to ” his imperatives.” . That makes us so angry! As if my dad had had to tell them what to do!.
The hospital in Leuven. Where he will have his operation, was shocked when we said what happened in Liege. Shameful!!!
Hello there!
Sorry I did not reply to the last few posts. I have had quite a lot of things going on at the same time.
My family and me once again want to thank you all for you unvaluable help.
My mum last night said to me that she was worried about what people with cc can do when they don’t speak English . She said that we were so lucky that I speak English and was able to find the forum straight away. You certainly cannot find anything remotely comparable to this forum in French! I think that if I have the time at some point, I should write a blog in French so that our experience could help other French speaking persons.
Right, must dash!
Lots of love.
Katia
Thank you so much Lainy!!
He is eating more than a few days ago which is already so amazing! I will try and have him eating small and often, that is the best advice indeed.
From my own experience, I know that once you are used to eat not a lot, well, looks like your stomach is shrinking or something, as to get back to what you used to eat before is difficult.
We will get there, little by little!
