New to the group

Sorry shoukd say does well xx

Autocorrect at its finest!!!

Thanks Jasper, you too! Best of luck with appts. 

Hi Luls

i was just wondering how your mom was doing?  I hope you got on ok with oncologist you were going to see.

I have now got two more chemos to go. I have got my fingers crossed my bloods are ok for my treatment Tuesday. They had to reduce dosage last time as liver enzymes were high.

I had my scan two weeks ago as I now have a small lump come up on my tummy. So fingers crossed the tumour has shrunk.

I do hope your mom is doing well after her operation.

It was so good of you to put your experience on here to give other people hope 

Hooe all goes well 

Jasper

Hi Jasper,

Mum is doing really well thank you. She had her 2 month check up a few weeks ago and Professor Davidson was really happy with her recovery. She is now 3 months post op and has regained her physical strength back. She did end up having an infection in her tummy and was sick for 3 weeks, but antibiotics eventually cleared that up. She has been on capecitabine for 2 weeks now, it’s a tablet form of adjuvant chemo, and she is doing well on this also with very minimal side effects (tiny bit of fatigue and slight dry skin). Thank you for asking!

Have you received your scan results or are you still waiting?

How did your meeting go with Professor Davidson at the beginning of August? Was he able to advise on the placement of your tumour?

I have everything crossed for you.

Hi Luls 

That is absolutely fantastic news about your mom.   
I am waiting results of scan.  I could not have my meeting with Professor Davidson as I had started chemo and he wants the results of scan . We are going to rebook.  I have one more chemo next week and hopefully will have had the results of scan then.  I am also editing for my medical records to come but like everything they have a backlog !!!

it’s so fantastic ti hear about your mom. I hope she keeps improving.

Take care

Jasper

Hi Jasper,

Thank you!

That makes total sense waiting for the scan results as he’ll be able to go over things in detail and have an accurate up to date image.

Please let me know if you need any more advice, I’ll try my best to help however I can. 

Congratulations on getting to your last round of chemo, that in itself is such a big achievement - shows your able to tolerate it.

Me and mum will be thinking of you, and best of luck with everything Jasper.

Hi Luls

i hope you and your mom are doing well.  I have not had the news I was hoping for with. My scan. Tumour but shrunk.  Will not operate. We have contacted Professor Davidson. He has got all my notes but I’m not holding out much hope.

Could you tell which oncologist you have been told to contact as I now need to have a back up to discuss what my options are. 
At the moment I can’t process it.  You keep thinking how long have I got as this is a horrible illnesses. One of the worst.

Hope your mom keeps improving 

All best wishes 

Jasper 

I am so sorry to hear that Jasper. It is a lot to take in but please don’t give up. Sorry, do you mean the tumour didn’t shrink? Did it keep the same size?

I really hope Professor Davidson gives you some different news, as like I said 2 other hospitals said it was inoperable, but he miraculously said it was! So I can only hope his eyes take a different look on it for you too. Please make sure he has visuals of your scans as that’s what he will assess. He may advise arterial phase scan if it isn’t clear if I’m artery. When is your meeting with him?

How are you managing physically?

Mums oncologist is Dr Gilmore at Royal Free Hospital. She specialises in Bile Duct Cancer.

Mum is doing really well thank you on her new chemo capacetabine which she has been on for a month now.

I know I mentioned this somewhere before, but when speaking to Professor Juan Valle at The Christie Clinic he sent off her biopsy to America to get tested which she had a positive IDH1 gene. He confirmed that there will be a new drug available in the UK for those who test positive for this and have had chemo previously.

Also, have you been tested for the FGFR2 gene? Again I pushed for this with mum, but she was negative. There are current drugs out for that now, and people are responding well to that.

Best wishes,

Luls

Hi Luls

The tumour has not shrunk bur nit git any bigger.  It’s such a lot to take in.  At the moment I’m not coping very well with it. I can’t sleep as things keep going through my mind.  Also I think it’s because I haven’t got any plan in action to focus on.  

We have sent everything of to Professor Davidson have now got to wait as it apparently had to go before a board of doctors to discuss. So not got any more information at the moment. Will definitely look into the gene tests.

Thank you for all your support. There is very little out there to help us.

Hope you and mom keep i. Good health

Jssper

Hi Jasper,

We celebrated the news of the tumour stabilising as we believed that the chemo done a good job at that stage. 

I’m sorry to hear your not coping well, I can’t imagine what your going through. I only know what it’s like through as a outsider but it really effected me knowing it was my mum. I really don’t want you going through this alone, I hope you have someone to talk to. My mum went into a deep depression and couldn’t even focus on reading the paper etc, and struggled on sleeping too. However she felt a smidge better after a walk. I’m not sure how to private message on here or if you can. But I’d like to give you my contact number or email address should you need any help or advice or just a ear to listen to. 

We as a family will be thinking of you.