jemima
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Wow Andie….when it rains it pours (and I don’t mean the weather) !
Great news to have another option open to you, even if it is just a possibility. It is depressing (as a carer but obviously even more so as a patient) when the ‘experts’ are negative, even when they don’t have to be. I have certainly seen this with Mum. Why don’t they realise how their demeanour has an effect on people. So lovely to see the oppposite effect on your Dad…it can make such a difference.
Wishing you lots of luck with both Prof Lodge and CK.
JemimaHi Shari
It’s good to hear that you are feeling so well after your first cycle of chemo, and I hope that it stays like this all the way through.
My mum is on the same regime as you and has done very well on it. She has had 4 cycles so far and has had fairly minor side effects. Just some nausea (controlled by drugs), once a very itchy scalp, and once a rash on her arm. She’s had some minor hair thinning but you can’t really see it at all.
She is 78 and still lives at home by herself, is still driving, cooking, cleaning and helping (although less than before) with my children. Last Sunday she cooked lunch for 9 people !Good luck for cycle 2
Jemima
What great news and it sounds like you are really enjoying yourself. This is the sort of thing I can pass on to my mum which really cheers her up.
Keep the feel of sand between your toes !best wishes
JemimaThat’s great news Andrea. I am so pleased that you have got this sorted and either accommodation sounds good.
I will keep my fingers crossed for the weather but I am imagining that your son will be hoping that it does snow !I am pleased also that it has made a difference to your Dad’s emotional, and therefore also physical state as well.
best wishes and hugs
Jemima
Hi Mendez
Does he have the stents replaced regularly ? It sounds like it since it is a scheduled replacement. Where Mum has hers done they only replace them if it is needed, which does mean that she has to start feeling ill before they do it but she went three months with the first stent and it’s now five and a half months for the second.
I think they are reluctant to do them on a regular basis as each time you have an ERCP there is a chance of bleeding, infection, and depending on where the stent is going there is a risk of damaging the pancreas.
As marion says though there are plenty of people who have a lot of replacements !
best wishes
JemimaHi Andie
I am glad to hear that you have all decided to go and see what Prof Lodge has to say. No, we did not contact him although I did consider it. Instead I contacted Prof Davidson at the Royal Free. We got a very ambiguous response which we never followed up as the Paris doctor said No and then Mum started chemo which she felt was the best option.
You have spurred me into getting back in touch with him though as maybe Mum should go and see him and have another MRI. The consultant here said that the local MRI machines are such poor quality that it wasn’t worth it !I am sending you hugs and best wishes for the trip and keeping everything crossed for some positive news.
Jemima
Hi Andie
I agree with the others. You don’t want to get further down the line with ‘if only…’. If your Dad is wanting to go then you should. Since Prof. Lodge is experienced in CC he may be able to suggest other things too to help with your dad’s symptoms.
It must really have thrown your emotions up in the air reading that email, but even the smallest glimmer of hope must be seized with this disease.
Good luck !Jemima
Dear Andie
I am really sorry to hear that your Dad is not doing well. Is he still pain-free ? If that is the case then at least it is some small relief in all this. Is your Dad drinking enough ? Even if he is not able to eat much he needs to keep hydrated.
I am hoping for a better week for you, your Dad and your Mum. Thinking of you and sending hugs.
JemimaSorry to hear this about your sister. Those seven months must have been great and I hope that the gem/cis works just as well, if not better, than before.
Keep your cocoon cobweb-free and warm, I’m sure you’ll be there again soon.
best wishes
Jemima
Highsmith
So sorry to hear about your Dad’s situation. I am not sure that there is much I can say but at least once you talk with the oncologist you will have an idea of the next plan of action. Maybe if you can get the infections under control they will be able to do chemo as his bilirubin is OK.
Thinking of you
JemimaWell, finally some sense out of someone in the hospital ! I got mum’s consultant to look at the scans with a senior radiologist and they compared them to the scans from Paris.
Basically the lesion on the pancreas that the latest report said was a primary tumour is actually just a cyst and it was present on previous scans !
The latest scan does not show the Klatskin tumour very well (wasn’t that the point of the scan ?) but as far as he can see it looks about the same size as the Paris scan.
So not the positive reduction in size that we were hoping for but I guess at least no growth is a good thing.
The left side of Mum’s liver is continuing to atrophy but the right side still looks OK.
It was reassuring to have someone that I trust look at it all and it just shows what a difference it makes having someone decent look at it.On the downside Mum couldn’t have her chemo yesterday as her WBC count is down to 1. This is the first time it has happened since she started nearly 3 months ago so I guess it is not bad going. She is having 2 weeks off and then they will try again.
best wishes to all
Jemima
Hi Tom
Welcome to this fantastic site which doesn’t always have all the answers, but always has open arms.
I am sorry to hear about your situation. My mum was diagnosed in Feb 2010 with unresectable CC and is on gem/cis at the moment.
We looked into Cyberknife although didn’t pursue it for various reasons but we still haven’t ruled it out. Might this be an option for you ?
I have got my mum following the extra vitamins and supplements that Andy listed on the Alternative Treatments page (I think ?) and she is cetainly looking well on them.
Sorry I can’t help more but I send best wishes to you and your family. (I have one 3 year old and can’t imagine having three her age !)Jemima
Dear Varun
What a lovely post. Your mother sounds like she was an amazing person, and she was lucky to have you to look after her so well, and to have those 3 years together. You and your family managed to fill those 3 years with a lot of experiences, fun and happiness. Those memories are irreplacable.
best wishes
Jemima
Andie wrote:How lovely four girls. You will always have a shopping partner.Yes, I am looking forward to that stage. At the moment I am just a taxi driver for all their after school activities !
I’m not looking forward to the time when I say ‘ Well in my day…..’ or ‘You’re not wearing that !’ I am sure it will come all too soon but in the meantime I still think of myself as young !hugs
Jemima
Thank you everyone.
Basically Mum was first diagnosed back in february with a Klatskin tumour. No biopsy was done as when she was having her first stent fitted they did not have a biopsy brush available !
So from the scans etc they said she had a Klatskin tumour although it was more in the left duct than the right. Hence the left side of her liver is very atrophied. They said she probably had the tumour for a long time for that level of atrophy….. so, why is the tumour in her bile duct a secondary/metatisis (sp?) and the one on her pancreas, which they have only just found and is small, is the primary. It makes no sense to me, but then nothing about this disease does.I need to phone the hospital tomorrow and have a proper talk with them. I just have so many other things going on though that I am finding it hard to do everything.
To make things worse (or maybe it makes it better for her) mum has told my brothers that the oncologist has said that her tumour is smaller. She’s not lying to them, I think that she thinks that’s what was said. I haven’t said anything to her to the contrary.
Hugs to you all
Jemima
