Mam diagnosed with CC Klatskin Tumor December 2015
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Can your Mam see another Doctor with her insurance?
I just want you to know that when you are really ready, I do have a list of the signs that an end is near and all you need do is email me through the site and I will send them to you. This could be way down the road I just wanted you to know. I feel it is actually not scary if we know what to expect. So much for that Doctor he should give up his practice. He gives you the bad news then lets you now he does not know what to do! I feel terrible that there is no medical person you can turn to. It’s like the middle ages! I am so wishing you the best!She was suffering badly with indigestion and she was put on medication called sucralfate which has eased the reflux and indigestion but belching and pain in her lower tummy seem to have taken over. I asked the question as to whether the oncologist had treated anyone with Mams condition before and he just said he’d seen it before but that he had no success treated it and that it’s not a cancer he would like his mom to have. No one has explained exactly how this disease progresses or what to expect I’ve never felt so lost in my life. I only really know information I’ve gathered myself in relation to this from research on the Internet.
CRB…..perhaps the pain is related to indigestion? Has anyone explained the process of Klatskin (hilar cholangiocarcinoma) tumor progression? How many patients have been treated at the public hospital your Mom had been cared for? Is it possible for you to contact GI departments of other public hospitals?
Hugs,
MarionI don’t know how you do it! Added pressures are not needed or welcome. OK, would a Physician be willing to just consult over the phone with a Doctor in UK? We do have a few members in Ireland and I am hoping they will chime in here.
Hi Lainy unfortunately my mam doesn’t have private health care and her medical card only covers public hospitals in Ireland. I wish I had the funds to get her care in the UK but unfortunately I don’t have the means to do this. So I’m left to fight with the medical profession here every step of the way so that can I keep my mam alive as long as possible
Dear CRB, I am not sure how your Medical Care operates in Ireland but is it possible to get Mam in to a place in the UK where they have much more experience with CC?
CRB wrote:Hi Marions
Thank you for taking the time to reply. My mam had metal stents put in just before chemo started the first week in December but she has always being in and out of hospital with infections every 8 weeks or so since her first bout of jaundice. Today she is complaining for the first time of pain, she says it’s like a stabbing pain in the bottom of her tummy anyone experience this and if so what might be causing it?? Mam has regular bowel movements everyday and eats small but regular meals. She thinks the porridge with flaxseed in the morning seems to set her off so she’s cutting that out to see if it makes a difference.
I take her temperature multiple times throughout the day and it’s within normal range. The Oncology doctor here discharged mam to the palliative care team so we don’t have any appointments etc anymore just the palliative care team try and manage symptoms with medication. The hospital won’t run any scans etc as they say there’s no point as no matter what shows up they won’t be chasing it so it’s not beneficial to either mam or them.
I’m at my wits end trying to deal with them all and in Ireland you don’t have any other optionsCRB…..I am so sorry to hear of the late stage diagnoses and the ensuing problems with chemotherapy treatment. Being this cancer occurs rarely and symptoms most often mimic that of other diseases, physicians do not suspect cancer to be the cause.
Does your Mom have an internal stent. If so, then the infection may very well be related to the longevity of the stent. You may want to make sure to take her temperature (daily) and notify the physicians anytime it raises above 100.5 F.
The belching may very well be related to narrowing of the intestinal tract. Speak with her physician for clarification of this issue. Does your Mom have regular bowel movements and what type of food does she think causes her to belch? Some need enzymes to aid with digestion; others try to eat small meals throughout the day. Moving around throughout the day as well as immediately following a meal intake should help as well.
I am looking for others to chime in as well.
Hugs,
MarionHi All,
I’m from Ireland and my Mam was diagnosed with CC Klatskin Tumor December 2015. Unfortunately her tumor is not resectable and she was only given 1 day of Chemo as she nearly passed away on the 20th December after it. There is no knowledge in Ireland in relation to treatment of CC Klatskin Tumor and if it’s not resectable and you can’t have Chemo well there are no other options. I just feel totally lost. Firstly Mam first got sick in May 2015 which was her first yellow jaundice and a radiologist said all indicators pointed to this exact cancer and said she needed urgent further tests however the hospital we were sent to for an ERCP went down a rare syndrome called Mirizzi Syndrome. We were never told even though I repeatly asked whether cancer was suspected and I was told no over and over again, that nothing had come up in any of the tests to suggest this. Mam didn’t get a correct diagnosis until December 2015 and by then the tumor had encased the hepatic artery 360 degrees and wasn’t resectable. We were then referred to the Oncologist for palliative chemotherapy and this started on the 16th December but unfortunately Mams immune system wasn’t able for it and she nearly passed away on the 20th December. Chemo was no longer an option for us even though her tumor markers had reduced by 70% from 1 day the Oncologist wouldn’t even consider trying to work with a lower dose etc. Even when I bring Mam to hospital for IV antibiotics for infections around every 8 weeks she gets an infection it’s a constant battle to get her looked after. The Oncology department have discharged Mam from there care to the Palliative care team who have no admission rights in the hospital so no dept will take responsibility for Mam when she has to go to the hospital, frustrating to say the least. I have given up on the medical system doing anything for my Mam at his stage.Mam is suffering badly with belching lately, does anyone have the name of any medication which helped with this as she is embarrassed going to church with it and that’s what she loves to do every morning is meet up with her friends in church.
Any advise would be greatly appreciated.
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