Hi All,My Darling Sister Gail is now about 3 months post Op. She has remaining lesions in her abdomen, lymph nodes and maybe liver. Over the last few weeks she has been experiencing what she describes as sharp contractions of her abdomen which are really knocking her for six. Has anyone experienced anything like this? On a positive note she is feeling okay otherwise, though tired, and has started Chemo last week. She is on the ABC02 trial though has been asigned to Gemcitabine only. A mixed blessing really after I read here that the Cisplatin element of the combined treatment is not well tolerated - I think she would have given up if the side effects were severe. At present she has had very few side effects from the Gemcitabine apart from being tired. Much Love to all. Chris XX
Re: Partner recently diagnosed with cc - Western australia (3 replies, posted in Introductions!)
Hi Emma, so sorry to hear of your partners diagnosis. I'm afraid Im fairly new to this wonderful site also and so maybe can't be of as much use to you as some of the wonderful senior members. My Gorgeous Sister was diagnosed 3 months ago after a minor op to remove gall stones. The Gall bladder sent to lab was found to contain cancer cells even though nothing had shown up on several deep scans. She was advised to undergo re-section surgery as this provides the best chance of a 'cure'. As advised by many here - do get a second opinion as to whether surgery could be an option. /as it turned out our Surgeon could not gain clear margins and the cancer was found to have met to abdomen and lymph nodes. My Gail had her first chemo (Gemcitabine) last Tuesday and did fine until today (6 days later) when she has been Nauseaous and feeling very poorly. How has your partner tolerated the Chemo? Has he had side effects at all? One thing our Research Nurse banned was live yoghurt by the way, as even the good bacteria can cause illness during Chemo. The best advice I can give to you both would be to do a search here of Jeff and Peters posts. Both are amazing survivors of this terrible illness and were given - a long time ago - the standard '6 months'. There is hope for us all. Fight til you can fight no more and then some!. Much Love to you and yours. Chris
I'm so very sorry to hear that your Dad's so poorly. As another UK carer I've been following your posts in particular. You've both been very couragious I Think. God bless you both. XX
My Sister Gail was diagnosed approx 6 weeks ago after 2 attempts to remove her gall bladder. She had a resection 4 weeks ago where part of her liver, intestine and rest of her gall bladder were removed. The surgeon explained that some lesions remained which could not be removed. She has some spread to her Lymph nodes and fatty tissue. During the surgery she had a stent placed unsuccessfully - the bile leaked into her stomach and burst through her surgical scar, a drain was placed from this area to a bag. She underwent ERCP approx 2 and a half weeks ago where a metal stent was placed but the bile continued to flow from the catheter in her scar, albeit at a slower rate. She was told she would have to undergo ERCP again to see what was going on. This morning the bile slowed right down (from the drain). I asked a junior doctor yesterday if the bile that was not redirected to the bowel was causing damage to Gail as there seems an inordinate delay for ERCP and he said that Gails body had formed a fistula from the leak to the scar area and therefore the bile was contained to this.
My Gail has no energy, she is sleeping most of the time and is very nauseous. We feel her recovery from the initial surgery is too slow ( we want her to recover and gain some strength and spirit back in preparation for the chemo. I have tried to get more information with regards to size and type of cancer but as we are in England it seems that medical staff are appalled at the idea of patients/carers arming themselves with knowledge - as if it's not our business!!! They are fobbing us off with vague answers which is v. frustrating!
Can anyone tell us if the nausea and sleeping are normal 4 weeks after surgery? Is it a result of the surgery or the cc? She is in very little pain at present, she only has paracetamol occassionally and is on no other meds except anti nausea jabs or tablets occassionally yet this remains a problem. Any advice would be very much appreciated.
Dear Everyone, I am so very lucky to have found this site and you all. Before I posted I browsed here a lot and have read many of your stories. You're all going through so much yourselves and yet you've time to comfort and advise. I am holding you all dear, for you are truly Goldenhearts. Much, much love. XXXXX
My Beautiful Sister (she is actually my cousin but we have always been as close as sisters) was diagnosed with this dreadful cc about 6 weeks ago (I say about because time has become disjointed and abstract since that day). My Gail is 47 years old and has always been a lynchpin of our very close extended family. Always the first there in a crises - she would give you her very last penny without having to think about it, a wonderful sense of humour, and the most empathetic person you could know.
She has had Gall stones for many years but only two 'attacks', the first about 10 years ago and then an attack about 3 months ago which landed her in hospital.
After the usual checks and scans and antibiotics we were told that there was nothing 'sinister' but she would need to have her gall bladder removed. She was admitted to hospital a couple of weeks later for this op. The surgeon advised she couldn't remove Gails gall bladder as it was enlarged and 'stuck' to her liver and that a liver surgeon had best be present, for safety reasons, during the operation, we were again assured that nothing sinister was going on. Our Gail recovered fantastically from this surgery and was home within a couple of days. She has further tests and was back in hosp a week later for another attempt. After this op we were told that they had managed to remove most of her gall bladder and had sewn the rest up - again okay. She recovered from this surgery really well and was half an hour from coming home when the surgeon appeared at her bedside looking completely shocked and announced that lab results had shown that she had gall bladder cancer, the surgeon said she was as shocked as anyone.
Our darling Gail was told she needed a liver re-section and this was arranged for the following week.We were very hopeful as we felt that the cancer couldn't be very advanced if the previous scans etc had shown no signs and the surgeon obviously hadn't seen the cancer during the previous ops.
After my Gails re-section we were told that all the lesions couldn't be removed after all and that there was spread to Gails Lymph nodes and other lesions in her abdomen,
and that the prognosis was 'not good', she would have 6 - 18 months with treatment.
My lovely Gail has refused all but the barest information. She doesn't know the prognosis but only knows that the operation was not completely successful and she has been advised to start chemo within 8 weeks.
She is still in hospital after her re-section, the initial stent she had placed didn't work and her abdomen was flooded with bile which leaked from her surgical wound, then had a replacement (metal) stent placed 10 days ago, via ERCP, which has still not completely sorted the leak, she still has a catheter from her abdomen to drain the extra bile. She is due to go for another ERCP on Monday (3 days time) to find out what has gone wrong.
She has not recovered well from the liver surgery and hated the ERCP as she wasn't sedated sufficiently and was very sick and in a lot of pain from pancreatitis after it. She is so dreading this procedure on Monday, and it's aftermath. She has requested a general Anaesthetic this time.
We are of course, as a family, completely at sea at the moment. We are taking one day at a time and first of all want our Gail to heal from her surgery and try and get strength for the battle ahead. We have been able, for the last few days, to bring her home from the hospital for a few hours each day, as she is more relaxed and comfortable here.
Our biggest worry at the moment is that our lovely Gail has pulled the shutters down on us all. She will hardly talk and blocks out the world and us by sleeping (or just closing her eyes to cut us off more often than not) and we are so worried about this.
I know she is very scared of cc and the future and I think she thinks she can't let go for fear of upsetting (particularly) her husband, parents, and children, but 'closing up' I can see, is damaging her. She is normally the most outgoing, sharing, un-closed up person you could know and that person has all but disappeared. I am so concerned for her. Have you come across this response before goldenhearts?
What could and should we do and say which may help her out of her self imposed isolation? Can you help us?
If only Love could cure
Thanks so much for your prompt reply to my posting. Although my Sis has had a the op the Surgeon couldn't remove all the lesions and has had to leave some. There is also evidence that she has cancer in her lymph nodes which could not be removed. We're early days into this but the prognosis is apparently 'not good'. I am intending, of course, to explore every avenue possible. Thank goodness for this site and all of you. XX
Dear Jules, I have only just found this fantastic website and your info. My Darling Sister Gail, age 47, was diagnosed with Cholangiocarcinoma a month ago and had a resection 3 weeks ago. She is still in hosp and is in very low spirits and is reluctant at present to consider chemo so I am very excited to learn more about this trial. Can you give me any more info please?