gavin
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Hi Caton,
Welcome to the site. Sorry that you had to find us all here but glad that you,ve joined in with us as you are in the best place for support and help and will get loads of both from everyone. Thanks as well for sharing everything that is going on with you and I am glad that you were able to have your surgery as so many are not. And from what you say, your surgery went very well indeed with excellent results, superb news!
Here is a link for you that I think will be of use to you –
http://www.ncbi.nlm.nih.gov/pubmed/26127906
And as to have the chemo after surgery, that is a tough one and one that I can not share any personal insight on as my dad could not have surgery and did not have chemo either. We have many members who have been through this situation and I know that they will be along soon to share their experiences with you. Have you had a look at the chemo board that we have on the site? It can be found here –
http://www.cholangiocarcinoma.org/punbb … .php?id=16
You will find loads of great info there as well from our members. Please feel free to post any questions wherever you like on the site, but I think you will get more responses to a chemo question for example if posted in the chemo part of the site. But please do not be afraid to ask as many questions as you like and post away. I look forward to hearing much more from you!
My best wishes to you,
Gavin
Hi Jessica,
Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through right now. You sure do have so much to deal with right now don’t you. Congratulations on the birth of your second child, that most certainly is to be celebrated. No wonder you are overwhelmed with everything that is going on in your life right now, that is an understatement to say the least.
That is great that you were able to have the surgeries though and excellent news that they were both a success. I hope that your recoveries from them both will be smooth and as quick as possible. If we can help at all then please just ask and we will do what we can. I’m glad that you have joined in with us here although so wish that you hadn’t had to find us. We are here for you and we care.
My best wishes to you and your family,
Gavin
Hi Kathy,
Thanks for the update and it sounds like things are improving for you, excellent news! It could well be as you say that this chemo went better for you due to you being in better shape for it this time or it could be that you can tolerate this chemo better than the Gem/Cis. Others who have had experiences of both will hopefully chip in and share their experiences with each with you. But real glad to hear that you are doing better now hoping that your scans and test in Sept come back good as well.
My best wishes to you,
Gavin
Hoping too that this is something that will be done in the UK as well but I worry about costs for this and with NHS budgets being squeezed I fear we may be quite some way behind on this. Does anyone know how much it costs for each test?
THanks,
Gavin
Hi Carol,
Take a big hug. And you know that we are always here for you and we so know how you feel and how much you hate this cancer.
The pain injections that your dad is getting in his tummy are what my dad got as well when he went through hospice and they helped him enormously. He got them as and when he needed them but did not need them too much. Hopefully they will work for your dad as well and there is so much that can be done to control pain.
I really hope too that hospice can get to grips with the constipation issue as I know that if they can then your dad will feel so much better. My fingers are crossed for this to be done as soon as possible. Like you we are all hoping that your dad can catch a break with everything and from mine and my dads experiences I so know how tough this is for you as well. Thinking of you and your dad right now.
Hugs,
Gavin
Hi Katia,
Thanks for the update and I will be keeping my fingers crossed for him for next Tuesday as well. That is great that he has put on a bit of weight lately and also about the stent working, excellent news on both fronts!
Please let us know how the talk with your dad and the onc goes regarding testing if you can.
Hugs,
Gavin
I forgot to say as well Aussie, have you tried doing a search here on the site for the treatments that you mention as that may throw some posts up.
I found this –
Decitabine – http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/decitabine
zacitidine –
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/azacitidine
Hope some of these are of use to you.
Gavin
Hi Aussie,
Apologies for missing your previous post on this issue. Sometimes posts do get missed with all of the traffic on the boards and hopefully someone will be able to help you with these questions you have. Personally I am not sure of the answers to all 3 of your questions so would not like to take a stab at an answer to any of them. I do hope that someone will be able to help you further with them though.
I assume though that based on what the Foundation One test results showed that your mums MIL’s onc recommends that she start on Azacitidine or Decitabine? Also, molecular testing for CC is still quite new and not too many patients will have had that done I would say, especially outside of the USA. Hopefully some who have had it done will be able to share some more about their results and experiences of it with you. Sorry that I can’t be more specific with my answers to your questions.
My best to you and your MIL,
Gavin
Hi Carol,
Thanks for the update on your dad and great to hear that his spirits are still good. Glad as well to hear that hospice are keeping a close eye on your dad and hope that the meds they gave him do the job. Your dad will have got a good boost today with Murray winning his first game! Hope that the sun and the heat is not too much for him as well.
Hugs,
Gavin
Hi Diane,
Many thanks for all of this info and I look forward to hearing how everything goes with the trial. Please keep us updated on how things go and I wish you every success with the trial, fingers are crossed for you!
Hugs,
Gavin
Dear Shaika,
I am so very sorry to hear of the passing of your dear husband. Please accept my sincere condolences. Please know we are here for you and my thoughts are with you and your family right now.
Hugs,
Gavin
PS- No apologies are ever needed for asking questions on here. I just wish that we had all the answers! And you are so doing everything that you can for your dad, please don’t doubt yourself!
Gavin
Hi Katia,
Just got time for a quick response. Not too sure about where, if or how common molecular testing is in the UK or the EU but this thread by Kevin may help as he was able to get a sample from him mum collected here in the UK by Foundation One and sent to them. Thread is here, hope the link works –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13064
Personally if it was me then I would speak with your dads med team about this as what harm could it do? They may also be able to give more info on this and how to go about it from Belgium. I had a quick search around on google for testing from the UK but could not really find too much. Hoping that others will be able to offer some more input on this one
I so hope that all goes well for your dad and his op on Thursday, please let us know how things go for him and know that I am keeping my fingers crossed for a successful op.
Hugs,
Gavin