Topic: Is this the calm before the storm?

Hello all. Just a little update on my Mum's current health. She was diagnosed in March (although I think docs knew as early as Feb we were looking at Cholangiocarcinoma), and has had a stent fitted. The cancer is inoperable and she doesn't want chemo. Since recovering from the stent fitting she's gone from strength to strength and we are amazed at what she is able to eat. It's always small amounts but she appears to be able to eat pretty much anything. We were weighing her regularly, but have stopped as we felt it was counter-productive as she was getting really tense if she had lost weight. She isn't experiencing much pain (all controllable with paracetamol). I am delighted she's doing so well but also confused as her experience doesn't seem to tally up with many of the stories here. The doctor basically told her she had months to live. Should we seek a second opinion, or is this simply the calm before the storm? She's living with us now and we're just trying to make the most of every day we have with her.

Re: Is this the calm before the storm?

Hello,

I am happy to hear that your mum is doing well and hope that this continues for a long time.

my mum sounds similar to your mum in how she is doing physically, if you look back at my previous posts, drs have diagnosed mum with cholangiocarcinoma in the absence of a tissue biopsy, mum was rushed into hospital with severe jaundice where they identified a very long significant stricture in the bile duct, their tests lead them to believe strongly that it is cc but they have identified no tumour/significant mass.

we are in the process of getting further tests at a major hospital to see if there are any small tumours, get a good look at the pancreas and hopefully disprove cholangiocarcinoma, the oncologist feels that tests strongly show cc but they think it is at an early stage from what they know-stage 0-1, however mum is not a candidate for whipples surgery or any major surgery due to pre-exsisting health problems, so they have told us that care will be palliative in that sense and that they cannot cure it if it definitely is cc

my mum had the stent done about 1 month ago now and she is going from strength to strength, she is not jaundiced, she is eating little but often and only has the occasional pains but because she has a spine condition-she takes regular pain relief and that seems to be working well for her.

how was your mum diagnosed? If you are unclear on what they are saying, don't be afraid to ask for a second opinion-

I wish you look in whatever you decide to do xx

Re: Is this the calm before the storm?

Dear Sam, I am not a Doctor but it does not sound like the calm before a storm, not yet anyway and I would recommend another opinion. All though if she doesn't want chemo, there is not much else they can do for her except make her comfortable.  May I ask your Mum's age and where she is being treated. Did the ONC say anything about the MacMillan Nurses. I think in the UK they are like our Hospice here. You might call the ONC and ask for more of an explanation. Best wishes and please keep us in the loop.

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: Is this the calm before the storm?

Hi Sam,

Thanks for the update on your mum. From what you say, it sounds like your mum is doing really well right now. She is eating well and from what you say, it sounds like she is getting on with everything as best she can. My dads CC was also inoperable and after he had his stent fitted his pain was also controlled well with just paracetamol for some time.

You say that her experience does not tally up with many here, but many people have different experiences to others as well. By all means seek a second opinion if that is what your mum wants, but you say that she doesn't want to do chemo. Do you mean that your mum would look for another opinion to see if surgery is an option?

And making the most of every day right now with your mum and the family, I like the sound of that, a lot!

My best wishes to you and your mum,

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: Is this the calm before the storm?

Forgot to add, if your mum does want to have the services of a Macmillian nurse then her GP or Onc will have to refer her to them which they will do as soon as she asked for that. My dad had a Mac nurse and she helped a lot with many things and would come visit him at home whenever he wanted.

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: Is this the calm before the storm?

Thanks for all your replies. Mum is 79. As she's moved in with us now, we are about to move all her care arrangements like Macmillan and hospice to here in Bath, as all her support is set up at her home in Kent. We haven't needed any external support so far - just our local GP who has her signed on as temporary resident. Mum's not pressing for a second opinion on her diagnosis - I just wondered if her experience was par for the course. May I ask Gavin how long your Dad was OK after the stent was fitted? Mum's consultant seemed to suggest it would be OK unless it became blocked.
I think my Mum's positive attitude is helping enormously. She's always been someone who is able to live in the present and not worry about the future and it's coming to her aid now!

Re: Is this the calm before the storm?

Sam,

Is your mums stent a metal or a plastic one? Plastic ones can start to have issues with clogging at around 3 months and metal ones last longer, around a year or so before clogging can become an issue. Plastic stents can be changed when they start clogging and that procedure is very common.

My dad had a metal one, fitted in Oct of 08. By around April of 09 he started showing some jaundice again and felt not so good, then the jaundice just seemed to disappear and he felt good again. Jaundice reappeared around October 09 and that is why he couldn't do chemo at that point as his stent was blocked etc. You ask how long my dad was OK after having the stent and that is hard to give an answer as he had other issues as well along the way, especially with nausea and vomiting etc. But he felt good for some time and was able to eat and do things along the way. Hope that sort of answers your question!

Yes your mums positive attitude is a great help to her through this and I love hearing that! A positive attitude certainly helps and long may that continue!

My best to you and your mum,

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: Is this the calm before the storm?

Many thanks for your reply Gavin. Mum's stent is a metal one. They had quite a job fitting it - failed the first time, and it was tricky but they managed it second time. I really appreciate all the replies - I will keep you posted on her progress. Sam

Re: Is this the calm before the storm?

You're welcome Sam. Glad that they got the stent inserted and I so hope that it works well. Yes they can be tricky to fit sometimes but glad they got there on the 2nd attempt. And my apologies to you, it wasn't Oct 08 that my dad had the stent inserted, it was in Aug 08.

Best wishes,

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.