katja
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Hi Christine,
The reason the whipple takes so long is because of the three complex joins the surgeon has to make. If your mother is having liver resection and it goes smoothly then perhaps the surgeon is confident that he can do the resection and the join quite quickly. Or he might take longer, try not to panic. It will be awful waiting but do try to give a little extra time – my dad’s surgeon didn’t call us until after he was out of recovery.Wishing your mum successful surgery and quick recovery
Hi Bill,
From what I can gather Gem/Cis is the standard care for recurrent or metastatic CC. There is no standard established for adjuvant therapy following successful surgery – my dad is currently on the BILCAP trial comparing Xeloda with doing nothing after surgery.Radiation has hardly been mentioned – one onc said ‘if surgery is successful there is nothing to irradiate’ but I think it’s a matter of opinion and I’d encourage my dad to give it a go if it was offered.
Your recommendations sound to be the same except you would not be taking the Cisplatin with the trial, but instead more Xeloda? Is that right? I believe Xeloda is usually more easily tolerated, but I’m unsure about effectiveness of Gemzar if not combined with Cisplatin. Which trial is it you have been offered?
Good luck with your decision – I agree with Linda in that I’d want to give as much as I could a go to try to stop it coming back as recurrence is a different story. Congratulations on your successful surgery. It sounds like you didn’t need a whipple which is encouraging?
Kate
Jemima,
Do they every mention chemo/radiation to shrink the tumour before surgery? Might be worth asking the surgeon, your mum could have some chemo and hope it shrinks the tumour away from the artery?Keeping fingers crossed for you.
Andie,
If your dad’s jaundice gets any worse A&E will admit him anyway – he wouldn’t have to fake symptoms – anything over 200 will probably be too much for them to ignore. Whether that will bring about stent change/unblocking is another matter.Does his consultant think it is reasonable to wait a month? So frustrating for you all, but unfortunately short of going private there is so little you can do to push it. Is there a number that you can ring daily to check on cancellations? Squeaky wheel and all that.
Yes, it’s positive that he feels ok but why can’t they see that everything will be put back? A doctor told us that it takes the same amount of time for bilirubin levels to drop as it did for them to increase.
Isisman,
I think some of the confusion you are feeling is related to the rarity of this cancer and the fact that there simply is no Standard of treatment after surgery (as there is for say, testicular cancer). There just haven’t been the trials carried out on enough people to say what can and can’t work. There are also different types of cholangiocarcinoma (schlerosing, nodular etc) which behave very differently.There does seem to be a Standard of treatment in the case of inoperable or recurrent CC – GemCis. However doctors are still obviously free to suggest ideas from their own experience.
I’m so sorry that you’re finding it so confusing, such a rare cancer is sadly not very well known or researched. This board does so much to drive things forward and raise awareness.
Michael, 3 months seems like a long time to wait, but I’m afraid that does seem to be fairly usual (it is in the UK) although my dad is having a CT scan the week before his chemo finishes (for the purposes of his trial).
Kate
Jemima,
Have you thought about asking if she can start the chemo and then have a break for the trip to france? I don’t think they particularly have a problem with these kinds of request. If it was my dad I’d prefer him to start as soon as possible – if it works well you might wonder if it could have worked even better?
I think it sounds so important that you go to France, it will work wonders for your mum’s spirit.
KateAndie,
So glad that you have a doctor who is definitely on your side. He’s right, no one has the right to pluck a prognosis out of the air, especially before the treatment. Will your dad be having gem/cis? Stay positive, you’re making your dad so proud I’m sure.
KateHi Isisman and Friend,
My dad’s case is also similar. He had the whipple of extrahepatic CC (near pancreas) on 13th January and 7 of 16 lymph nodes involved microscopically. Isisman, is your husband going to start chemotherapy? My dad is on a Xeloda trial. I hope he soon starts to feel better.
Friend, hoping that your friend is recovering well. Let us know what chemo/radiation is recommended.
Best wishes to you all
KateHi Linda,
Thanks for adding! My dad has just finished his fourth cycle of Xeloda, with no effects to stop him – he’s fatigued and has sensitive hands, no fingerprints. The last couple of days he’s been a bit shivery and faint, so we’re keeping an eye out for infection, but it has been really hot here (for us!) so maybe that’s it.
My dad is loving being a grandad for the first time – it’s been so good for all of us. Means I have only half an eye on the boards here and typing with one hand…
KateTotally agree about Mr Menon, a wonderful surgeon, and it’s amazing that they can now do it by keyhole.
Julygirl – what chemo did you have? I understand that in the UK the standard of treatment after surgery is just wait and see (no chemo) and the standard treatment for inoperable cc is Gem/Cis?
Did you enter a trial like my dad – Bilcap?Ash – hoping to hear what your options are.
KateThinking of you Gerry. Remember don’t be a hero, get those painkillers on board. And it’s really important to get upright (use the patient controlled painkillers when you see the physio approaching).
Looking forward hearing positive news.Hi Ash.
I know how you feel, it is terrifying and heartbreaking when you go through the diagnosis. My dad was diagnosed in December, and had surgery at St James hospital in Leeds. Prof Lodge is head of the team there; I believe he does the Liver transplants. He has saved many, many lives. We could not fault the treatment at the hospital, it was wonderful.It is important to find out a bit more about the diagnosis, and what treatment the specialist thinks is possible? My dad’s initial treatment at Bradford Royal Infirmary was very good, and they didn’t hesitate to refer him to Leeds when they thought surgery was possible.
We have been told that going private would not have speeded things up (although the diagnosis may have been marginally sooner) and the treatment would be exactly the same. My uncle who’s a GP says that the cost of going private would be prohibitive for most people, as you then have to pay for ALL your treatment, drugs etc. They also said that going private would not help because there just aren’t the private oncology facilities.
Let us know how you get on, stay strong. I always found it eased thing to keep reading and researching, but I suppose we all find our ways of dealing with it. Thinking of you.
KateI agree with everything above, do make sure your friend (and her carers) are prepared for how she will be immediately after the op – she may not be up to visitors that day, will have tubes, drains and wires all over and may be in pain (check the epidural is definitely planned).
She now needs to eat and get herself as well and strong as possible. My dad’s whipple was a near ‘textbook’ success with no leaks or infections and he was not allowed to eat for nearly a week. Vital that she tries with the physio to get mobile asap – this prevents lung infections even though it can be hard.
My dad is now having chemo on a trial but would only in the last few weeks have considered going back to work if he had to (3 months out of surgery). He was incredibly fit beforehand which helped, although maybe his standards of feeling ‘normal’ are different (dissapointed he can’t do his daily running/swimming etc).
Good luck to your friend – I hope she has as good a surgeon as my dad did at Leeds.
