andie
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The clinic I got in touch with was the following:-
Dr Andrew Gaya BSc MD MRCP FRCR
Consultant Clinical Oncologist
Guy’s & St Thomas’ NHS Foundation Trust, Westminster Bridge Road, London SE1 7EH London Oncology Clinic
95 Harley Street
London W1G 6AF
Tel: +44 (0)20 7188 1459 (Guys)
Tel +44 (0) 20 7317 2563 / 2572 (LOC)
Fax: +44 (0)20 7009 4272And the reply I got when asked if Cyberknife suitable for CC was:-
Possibly, depends on the extent. Chemo will also be required. If you collect scans on a disc and a medical report I will see you for a second opinion.
Please liaise with my PA Diana on 020 7317 2563
Regards Dr Andrew Gaya BSc MD MRCP FRCRConsultant Clinical Oncologist
Hi Jemima, Your Moms story is very similar to my Dads regarding tumour location and the waiting game! He was due to start Chemo last week but his bilirubin level was 75. The previous week it was 45 which would have been acceptable for chemo. He is currently on antibiotics (he was told to start them whilst on chemo) and is waiting for an emergency slot to become available to sort out his stent.
Is your Moms stent plastic or Metal?
Dads eyes have started to develope a yellow tinge but apart from that he has no other symptons of jaundice. He does drink 3 litres a day which I think is helping him, like Marions said it is really important that they keep their fluid intake up.
Dad has also started taking a high dose Omega 3, I read somewhere that it helps with the chemo drug Cisplatin, which is one of the Chemo drugs they will be taking.
Are you planning on going to Paris to see if they can operate on you Mom? If so please let me know what they say.
Enjoy your Family holiday, Im sure it will do your Mom the world of good.
I contacted Dr Gaya regarding Cyberknife but he said Dad would need to have Chemotherapy first, not sure why as, I hadn’t sent a copy of Dads scans or reports, i ‘d just sent an email enquiring if they recommend Cyberknife for CC.
Good Luck for the next few weeks and lots of best wishes
Hi Julia,
Dad had his blood tested today so will know Monday if bilirubin has gone up or down. I think it’s gone up as his eyes have a slight yellow tinge starting to appear.
The next step will be his stent being unblocked, he may have to go to another hospital for this if they can’t slot him in at the birmingham hospital Because dad feels well I think he’d prefer to wait for Birmingham to do it but i’ve told him it’s important to have his stent unblocked so chemo can start and the longer he wiats the longer it will take to come down. They won’t start at anything above 50 as the normal limit is 35. Even if they can see it is going down 50 is the magic number!
The good thing is the doctor and nurses were pleased to see dad looking well (apart from slight eye tinge!) and eating well, I hope this continues.
Thank you for thinking of us.
Best wishes to you and your family
More waiting! Dad had blood test today, will know results Monday. They think his stent is blocking as dad’s eyes have now got a slight yellow tinge. They have told him to continue on his antibiotics though. Once the blood test is back they will try to slot him in for an emergency ptc if one is needed. This may have to be done at another hospital though if they can get dad in quicker. Dad not happy about the idea of another hospital as he likes and trusts the one in Birmingham but it’s more important to get the Jaundice down so Chemo can start.
Despite this setback the Doctor and Clinical nurse specialist where really pleased with dad, they were really happy he has put on weight and feels very well in himself. What is strange though is that he doesn’t have dark urine like last time he became jaundiced, though he does drink 3 litres a day so perhaps that is helping, or a lose of appetite.
Thanks for keeping us in your thoughts.
Best wishes to you all
Hi Gavin,
He will have a scan when he’s completed 3 chemo cycles, but at this rate I don’t know when they will start.
They did a EUS/Biopsy on 17 May and said from that it was still the same as previous images and had not spread.
My Dad is trying to keep positive and he is still doing things as he was before, he has never felt ill once during the last few months.
I will let you know what happens Friday
Thank you and best wishes
Hi Julia.
I’ve just read your other post, so pleased your sister is doing so well, it’s wonderful news to hear.
My Dad is feeling very well and is carrying on with all normal day to day activities. You wouldn’t know he had CC if you hadn’t been told.
The main problem is the Chemo, or lack of! We went to see the Oncologist today and he’s referring Dad back to the liver hospital as his bilrubin is still too high for chemo (75). We have got to go Friday to see what they say. I presume it will be due to a blocked stent. Dad is getting anxious now though that he was diagnosed and stented in April and he still hasn’t has any treatment. Fingers crossed they can sort out the stent and start Chemo soon.
Best wishes to you and your sister.
Hi Gavin,
No problem it’s a pleasure to try and help.
I was hoping my Dad would be able to take part as originally it mentioned a June start but an email I received today mentioned it would be recruiting in September, so it will be too late as Dad will need to start his Chemo before then.
Hopefully it will be of help to someone.
It I recieve anymore emails regarding the trial I will update
Best wishes
Hi Julia,
Just wanted to say good luck and all the best for today, hope all has gone well for your sister!
Best wishes
I have been in touch with Miss Sharon Hughes, BTC Trials Co-ordinator
at Cancer Research UK & UCL Cancer Trials Centre and this is the reply I got regarding the ABC03 trialI am sorry to hear about your father
Mary, What wonderful news!!! I hope I am able to write the same thing in 4 years time too.
If you don’t mind me asking did Tom have any Chemo or just Radiation treatment? My Dad is due to start Gem/Cis soon but I was wondering if Radiation would be a better option.
Also what supplements does Tom take?
Thank you once again for sharing your wonderful news
Best wishes
Hi Marion,
Do you know when the ABC03 trial is recruiting? or any more information on it.
Kind regards
Hi Rick,
The doctors at both our hospitals like the level to be 50 before they will do chemo but they have said they may discuss giving my dad a lower dose chemo. We have to wait till Wednesday when we meet with the Oncologist to find out more.
I’m sorry I don’t have any other test results as when the nurse phoned to say he wouldn’t be having chemo she said it was due to his bilirubin levels and dad didn’t think about asking about anything else.
I will find out what antibiotics he is on when I see him tomorrow. I know he is taking 2 x 250mg a day as the doctor recommended a low dose.
He had his metal stent fitted April.
Thank you for all your help, it’s been great having someone to explain it to me and give advice. I am an only child and having to be very strong for both my mom and dad, and also fight most of his CC battles as at the local hospital they at times can be less than positive. Our local Liver hospital is great but the chemo is given at the local hopsital.
Best Wishes
Hi Rick,
Thank you so much for your information and kind words.
My Dad started antibiotics Thursday morning in preperation for his Chemo. The doctor had advised he be on a low dose whilst on chemo to try and help avoid any infections especially as he has a metal stent.
Thursday night they phoned to say his bilirubin was too high but advised to keep taking the antibiotics incase it was an infection. I’m keeping everything crossed they are back to normal next Wednesday and treatment can start. Dad had built himself up for the chemo so was on a real downer but he seems more positive about it today.
Best wishes
Kathyb,
I’m not sure about the level markings, perhaps the UK use a different system as I know another member from the UK mentioned bilirubin levels above 50 too.
When My Dad started to be really jaundiced the bilirubin levels were in the 100s, at the worst 600. After his stent they fell to 185 but since then he didn’t have any follow up bloods.
In the UK Chemo can’t start unless bilirubin level is 50 or below. At the moment Dads not got any dark urine or itching, nor yellowness.
Hopefully someone will be able to explain this as I would like to know too.
Fo the meantime he has been advised to take antibiotics prescribed for his Chemo and hopefully this will help if it’s an infection, if not blood will be done wednesday, if it’s ok chemo will start friday, if not pct to check and possible clean stent.
Best wishes
