New Member – sister in law, only 40 with cc
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SIL….so sorry to hear of the current developments. My heart goes out to your sister in-law. Hospice should be able to address the nausea however; the vomiting is very difficult to address. It will take an aggressive physician to perform a bypass procedure – it can be done subcutaniously – in order to eliminate the increasing, relentless vomiting. I hope with all my heart for your sister in-law not to have to suffer; hospice is the right place for her.
Hugs and love,
MarionHi All
Thank you for your kind messages – I have been offline for a few weeks. Your information is very useful.
The update isn’t very good, I’m afraid – she has deteriorated quite significantly. The pain meds are causing serious issues with her bowels – are you aware of an injection that can alleviate the constipation, apparently it’s expensive but in certain situations is can be very beneficial? The laxatives aren’t working effectively and other options are too risky due to the ascites (very swollen abdomen) and other complications. Her weight loss & vomiting continues and she has been moved into a hospice in an attempt to control the pain and manage the associated complications. The outlook isn’t positive but one day at a time is all you can do. It’s such a painful and traumatic illness.
I’ll ask the doctor for the name of the injection and post it online for your reference.
Many thanks, xx
Hi Tyler,
Welcome to the site although I am sorry that you have had to find it. There has been lots of great advice already. I am in Glasgow and found this site and the UK AMMF site that Gavin mentioned to both be invaluable when my 41 year old sister was diagnosed with inoperable CC.
Please ask anything you want and tap in to all the support for her and you here.
Hi,
I was told it may taste better by adding honey to the bitter melon juice. But I have never tried to juice it; instead I cook it as a dish with sliced fish or pork and do it quite often.(2 times a week or so.)
God bless.
Hi Tyler,
I am so very sorry to hear about your sister-in-law. I had chemotherapy (Gemzar) after a whipple procedure, so I don’t have much information about the combination of chemo that your SIL is on. I did, however, alter my diet in small ways. I stopped eating red meat and any processed food. I discussed this with my oncologist and he supported my diet change.
I also did Reiki all through chemotherapy and acupuncture which I still do. I spoke with a counselor and went on anti-depressants to help with sleep and appetite and anxiety.
While I would not attribute my health to these practices, I think that they helped with my mental state by allowing me a sense of control which in turn benefited me in other ways.
Best wishes to your SIL and she is lucky to have you to advocate for her.
Hugs,
-Randi-Hi SIL,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your sister in law. But I’m glad that you’ve joined us here as you are in the right place for support and help and I know you’ll get a load of both from everyone here. I too am in the UK, in Dundee, and my dad was treated here at Ninewells in Dundee.
No wonder the last 6 weeks have been a whirlwind for you and I know that your head will be spinning still with having to take everything in that is happening right now. I know that after my dads diagnosis it took a while for everything to sink in, but you are so doing the right thing in coming here and seeking further information. The more info you have and learn the better informed you will all be when it comes to decision making, and I know that your sister in law will so appreciate what you are doing for her.
As to ascites, they are quite common with the cancer and here is a link that contains more info on them –
Yes as the others have said the ascites can be drained and this will help your sister in law feel much better, but they will need to be drained again and again as the fluid will keep coming back. And we were told by my dads Mac nurse that the fluid can come back quicker if it is drained off. My dad had ascites but he never got it drained.
Have you heard of AMMF? It is the UK’s only CC charity and you will find a ton of info there that is purely focused on CC and everything to do with treatment centres etc in the UK. Here’s a link for you –
http://www.ammf.org.uk/cholangiocarcinoma/treatment-options-2/
I know that you’ll find a ton of UK related there.
Has your sister in law sought or thought about seeking a further opinion on everything? She is entitled to do that under the NHS and her GP should be able to refer her to a centre or oncologist of her choice.
As to a strict diet along with hemp oil during chemo, I have no thoughts or knowledge on that at specifically. But I would stress that going down a certain road without taking medical advice on that would not be advisable IMO. The Gem/Cis combo that your sister in law is on is a very common combo for this cancer and there are a ton of posts here on the site about it.
I hope that you will keep coming back here and let us know how everything goes. We are here for you and will do our best to help in any way if we can. Ask any questions that you have and we’ll answer as best we can.
My best wishes to you and your sister in law,
Gavin
Dear Tyler,
I am sorry to hear about your sister in law however you have definitely come to the right place. I spend a lot of time looking through various posts to see what has worked for some and what others are trying.
Not being an oncologist I can’t give advice however am happy to pass on what we are trying with my father whom also has stage IV metastatic CC.
He is currently on chemotherapy (in the middle of second cycle so very early days). He is doing a trial with GEM/CIS and panitumumab (the drug being tested in the trial).
On top of this I also give him vitamin D twice daily ( tested his vitamin D levels and they were low likely due to malabsorption after his whipples operation). From an alternative / natural medicine side I also juice a bitter melon daily (tastes terrible however do a search on this site for this Asian fruit and you will see why I thought we might as well try it)
Other than that we do not routinely try alternative meds or herbs and everyone is right in that you should check with oncologist first. Many oncologists seem not to like high dose anti-oxidants with chemotherapy as it may make chemotherapy less effective hence I am wary of these.
I also agree that the patient needs to eat healthy and would not suggest drastic diets as it is important they keep their weight up to be able to tolerate the chemotherapy.
I wish you SIL all the best of luck
Hi Tyler,
I am sorry to hear about your sister-in-law, but I would like to welcome you to this site. As for strict diets and herbal remedies, I don’t really agree with them. I think a well balanced diet is the best thing you can do for the person with cancer. If you choose to use an herbal supplement or strict diet, I would first ask her doctor if it was ok because some might interfere with chemo or be harmful. I know my daughter’s oncologist did not want us doing anything drastic or even slightly out of the ordinary in regards to diet, supplements, or herbs. As for the ascites drainings, I don’t have any experiences with that. I do know that most patients that have it drained do feel much better, but it usually comes back and needs repeat draining. You may ask as many questions as you like. We are all here to help! I wish your sister-in-law all the best.
Hugs,
-PamHi,
I do not know about the benefit of combining diet/hemp oil with chemotherapy therapy.
I do know GEM/CIS will have about 28-33% of chance to shrink the CCA. (partial or complete response to the treatment.)
I regard cholangiocarcinoma is always terminal no matter it is metastasized or not , no matter what stages I am in, even I have a clean PET or CT scan at this time , since there is a 50-75% high recurrence rate. But it does not mean I will be gone soon. I regard CCA as a chronic disease and that is why keeping up to date knowlege about this is important.
Palliative does not mean no hope,but did indicated what the doctor’s judgement and reflection at the time of diagnosis for the “immediate and current state of the disease”.
Therefore the intent for the oncologist to prescribe the GEM/CIS at the time of diagnosis is for palliative;but if the chemotherapy works well, then if the tumors are responding well to treatment; then things will be changed and so will the term of “palliative care”.
read the attached link, that may be an example of hope.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=74886#p74886
Good luck and
God bless.Dear Tyler, welcome to our remarkable family, sorry you had to join us. You must be a wonderful Bro-in-law. I am so glad that your SIL is not having any trouble with her Chemo Cocktail. Sorry to say I am not one to talk about alternative Meds. But, please do NOT do anything like that without talking to the ONC first. Nothing has ever been proven and it could disrupt the treatment she is receiving. I guess I just feel if these alternatives worked, more DOCs would be recommending them. The only extra thing my husband got were Vitamin B12 shots once a month for energy. We do know that surgery is the only real cure at this point for CC. We also know that good strides have been made over the last few years and we are expecting more in the next 3 – 5 years. The best thing the family can do is to support her decisions, be strong, good attitudes and a little humor thrown in doesn’t hurt anything. Please keep us posted on her progress, we truly care.
Hello All
My sister in law was recently diagnosed with terminal metastatic cc with turmour in the intrahepatic artery. The last 6 weeks have been a whirlwind and I am seeking advice from people who understand the symptoms to enable the family to better support her. I am in the UK.
She has just completed #2 Chemo (Gem/Cispl) and appears to be doing Ok so far. I would welcome advice/info from anybody who combined strict diet/ hemp oil with chemo treatment. I believe both science and alternative medicine have a role to play.
She had a drain last week for ascites and I wonder how often this is likely to occur? I have so many questions but don’t want to ramble. I’m grateful this site exists – thank you all.
Tyler
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