Topic: New Member - sister in law, only 40 with cc

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

Re: New Member - sister in law, only 40 with cc

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by PCL1029 Sun, 12 May 2013 15:16:32)

Re: New Member - sister in law, only 40 with cc

Hi,

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 … 886#p74886

Good luck and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member - sister in law, only 40 with cc

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,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New Member - sister in law, only 40 with cc

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

Re: New Member - sister in law, only 40 with cc

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 -

http://www.macmillan.org.uk/Cancerinfor … cites.aspx

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/cholangiocarcino … 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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member - sister in law, only 40 with cc

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-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New Member - sister in law, only 40 with cc

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member - sister in law, only 40 with cc

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.

Clare

In the stars now . . . .

Re: New Member - sister in law, only 40 with cc

Hi 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

Re: New Member - sister in law, only 40 with cc

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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New Member - sister in law, only 40 with cc

Thinking of you and your sister-in-law, dear Tyler.

Julia

"Time may be a great healer, but it's a lousy beautician."

Re: New Member - sister in law, only 40 with cc

Dear SIL, I am so very sorry to hear what your SIL has been going through. I have not heard of an injection for nausea but I do know there are some Meds that can be given like a suppository, unless those too have been tried. Please know that having your SIK is the absolute correct move to have made. I so wish for your SIL that they can find something to alleviate the pain and take care of the nausea. Sending you all prayers and wishes for a more comfortable
time.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member - sister in law, only 40 with cc

Dear Tyler,

I am very sorry to hear about your SIL and what has happened these last few weeks. I so know how you are feeling right now as my dad went through this as well. He was also taken into hospice care to help try and deal with the symptoms that your SIL is experiencing right now. I also agree that hospice is the best place right now for your SIL and that they will take great care of her there. My dad had nothing but good things to say about the care that he received in hospice, nothing at all was too much trouble for them.

Have the doctors there mentioned anything about a syringe driver? They put my dad on one in hospice and it helped him greatly. They felt my dads meds were not getting a chance to work due to his vomiting as he was bringing them up again so quickly. The syringe driver gave my dad his meds over a continuous 24 hour cycle directly into his body so he did not have  to swallow them. They were giving him anti nausea meds, pain meds and Haloperidol through that and I have to say that it worked very well for him. Plus he was getting pain injections as and when he wanted them too.

I know that this such a tough time for you all right now and if we can help in any way we so will. We are here for you Tyler.

Thinking of you right now,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member - sister in law, only 40 with cc

Sending good thoughts and prayers
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: New Member - sister in law, only 40 with cc

Dear SIL,

I am so sorry to read about your sister in law and the change in her condition.  My sister who was 41, died in March after only 5 months after being diagnosed.  You are doing all you can for her and the care she will get in the hospice should address all the symptoms she is having.  There are many different drugs that can be tried to help with things like vomiting and constipation if one does not work then another will be used.  Even when someone cannot be cured or treated, there is so much than can be done to help with the symptoms that they have.  There is no need for your sister in law to be suffering.

Gavin mentioned the syringe driver which can help enormously. It can be used just for anti-sickness or they can combine many different drugs in it to help with pain and agitation as well.  The dose can also be increased quickly if needed.

We cared for my sister at home for the last 2 weeks of her life - that was where she wanted to be.  I understand how incredibly hard this is for you and your family and there is nothing I can say that will make it easier.  But there are so many here for you - the support is incredible.  If there is anything you want to ask me and I mean anything then please ask. 

In my thoughts.

Clare

Clare

In the stars now . . . .

Re: New Member - sister in law, only 40 with cc

Hi
So sorry to hear of the diagnosis. I am 49 and was diagnosed in September and told in November that I was am inoperable. They told me Cheemo would not help to shrink the tumour as it has also spread to the liver, they feel that the chemo would do me more harm than good bc of my severe weight loss....about 5o pounds. I am on hydromporphone for pain. I also take senekot and Lactulose for the constipation due to the pain medication. The only other thing I take is Vidatox...I got this from a friend that got it for me in Cuba....it is called blue scorpion serum and is supposed to be good for cancer it is a homeopathic medicine....I don't know if it makes any difference but my Dr. said it cant hurt me so I take 5 drops twice a day. I have no pain and am up and about every day. They gave me 6-18 months....so far I am doing well and am just happy to get up every day and spend time with family and friends!! so far as I know there is no cure except for surgery! What I do is make the best of everyday! I eat as much as I can and whatever I can keep in no matter what it is. I wish you well!!

Re: New Member - sister in law, only 40 with cc

I also want to add that I had a permanent stent put In in November and that stopped the jaundice and for the most part the vomiting. I too had so much trouble and pain with the constipation. Finally I was put on liquid lactulose and 72mg twice a day slow release of hydromorphone. I have been on those doses for 4 months to date and am pain free. Every now and again I get a little pain from the constipation and I take 2 extra strength Tylenol and a 4mg break through hydromorphone and it is gone within a half hour...I am actually feeling better now than I was in Nov-Jan so something is working!!! I am maintaining my weight but not gaining. I eat small meals often throughout the day. I have been travelling from Nova Scotia to Toronto and Ottawa and am planning a road trip with friends from Nova Scotia to Bangor MAINE which is about a 7 hour drive. I rest when I need it but try to be up and active as much as possible. Has your SIL had a stent put in? That made a big difference with the vomiting for me. The weight loss all pretty much happened before I was finally diagnosed. Please if you have any questions that I can help with let me know....best of luck to you all...

Re: New Member - sister in law, only 40 with cc

Bonnie, you are totally amazing! You are a Super Hero of the best kind, what an attitude, an excellent example for all. You remind me of our Kris who has the same kind of attitude. If you don't mind Kris.......Kris says I am not sick, I just have Cancer! You girls just blow me away. You have no idea how many people you help with your attitudes. Keep up the good work and I always look forward to your posts.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member - sister in law, only 40 with cc

Dear All

I wanted to thank you all for your kind words and information.  I would like to provide an update and let you know that my sister in law has deteriorated rapidly and her time will end soon.  The CC was too far advanced when diagnosed for any constructive intervention to take place.  The Hospice team have been wonderful, it is such a caring and supportive environment for patient and their family and friend support network. 

When I glanced at the new introductions board I had a question - is there an area on this site that lists CC specialists by region?  It might help if visitors to the site could access this information - or maybe this information is more appropriate on another site?  Just a thought.  Once you have been touched by the CC journey it seems a waste to let knowledge of specialists etc not to be shared to spare those newly diagnosed from having to start from scratch.  For example, Prof Lodge in Leeds, expert in CC - how do people find such experts if they are not referred?  It's just a thought.

x

Re: New Member - sister in law, only 40 with cc

Dear SIL,
Im so sorry to hear the update about your sister in law and the change in her condition. But as Bonnie said "make the best of everyday" is the most important now.

Hugs,
Hugh

Re: New Member - sister in law, only 40 with cc

Dear SIL,

I am very sorry to hear about these developments with your sister in law. My thoughts are with you all at this moment in time. Yes hospice so do provide a comfortable caring environment for all concerned. My dad was in hospice care for his last few weeks and both he and I have nothing but great things to say about the care that he received whilst there.

Yes we do have an area on the site that you mention and it was created by the members here sharing either theirs or their loved ones medical team and info etc. It can be found here -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

We do also have a list of major treatment centres on the site but that part is US focused, but the above link contains much info from other parts of the world. By all means feel free to add anything that you wish to the above link as it will be very useful to UK members.

If we can help at all in any way then please just ask and we'll do what we can. Yes this is the time to treasure all these days and moments and once again, my thoughts are with you all right now.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member - sister in law, only 40 with cc

Dear SIL, I am so sorry to read of the latest developments on your SIL. The   most important thing is her comfort and I do hope they are keeping her comfortable. I have a list of things to look for as you reach the end of this terrible journey. I would gladly send you by private email the list if you wish. Above all keep telling her that you love her, remember the hearing is the last to go. I am praying for her to have a peaceful journey.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

24 (edited by clarem Sun, 23 Jun 2013 16:06:31)

Re: New Member - sister in law, only 40 with cc

Dear Tyler,

I am sorry to read about your sister in laws deterioration.  It must be incredibly hard for your family.

Hospice care will ensure she  is truly comfortable.  Treasure every minute.

Clare

In the stars now . . . .

Re: New Member - sister in law, only 40 with cc

SIL....My heart is with you. I am sorry to hear that your sister in-law's disease has progressed to this point.  As the others have mentioned, Hospice will provide your sister in-law with the comfort and dignity she deserves.  You, her loved ones, will be able to cherish forever the opportunity and the preciousness of your togetherness. 
Please know that our members have established a list of physicians and treatment centers
http://www.cholangiocarcinoma.org/punbb … hp?id=3126

Our Randi is in the process of cleaning it out (so to say) and hopefully soon, we will be able to display this ongoing, member established thread in a more prominent and easier to access place.
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER