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Update is that Kim has had a head scan and that is clear. So not sure if the excruciating pain in her head when she stands is as a result of the pleural effusion. She still is so very confused bless her. They are talking about the draining the fluid from her lungs next. Catherine did your mother have bad side effects from the SIRT treatment. I know deep down that this is probably the cancer advancing in other places than the liver as she did have spots on her lungs from her last scan on the 23rd Sep. I keep reading posts and searching and then scaring myself some are fairly positive but others are not . I know this is a waiting game but she is not ready to go yet. She keeps saying to me ‘Are they not telling me something’ ?? My other sister has taken over sitting with her and her daughter is going to see her tonight. What else can be causing the headaches, is it the low oxygen and fluid on lungs?? Questions questions, I have asked the doctors and this is why they did a head scan but that has come back clear. I’m sounding desperate so I do apologise to you all . Just want her to feel better again and I want my sister back ( I feel she is distancing herself and the confusion makes its so hard). x
I couldnt get Kim into hospital in the end due to lack of beds. She did get to her appointment on Friday although they could not say if the SIRT had worked or not due to being on 4 weeks post treatment. Kim has apparently got fluid on the lungs but we were discharged to go home. The following day Kim had a nasty fall going to the bathroom. She is extremely fatigued now and as a result can hardly walk. Needless to say she fell and screamed out (she has been staying with her mother last 3 weeks due to the decline and fatigue). Anyway after phonecalls to out of ours doctors and seeing the palliative nurse she was finally admitted to hospital at 2am. They confirmed that the fluid in her lungs is creating respiratory problems her oxygen levels were low and they were concerned about this. Also since the falls when she does get up with help to go to the toilet she is complaining of an extremely bad headache. we are not sure if this is due to her fall or the fact her oxygen levels are so low. plans are now in place for hospice to provide a hospital bed downstairs and nurse to come in daily. They have said that although this is not the end stage we should be preparing ourselves and making her as comfortable as possible. Please please can anywhere share what they know about fluid on the lungs and oxygen levels decreasing. She is extremely confused and has been so for the last 2 weeks but is much more so. I am going to make sure I get to hospital in time to talk to the doctors when the do their rounds but is this really bad!! Please tell me your thoughts and how it is. Could it be that she gets her chest drained and her oxygen levels will get better. What questions should I be asking the doctors? I am so scared that she is all alone in hospital and scared. Is there still hope?
THanks Marion, I took your advice as spoke to Prof Sharma’s secretary today. I received a call back from one of the doctors on the team Helen and she advised that it would be worth admitting Kim to hospital so our intention is get the palliative nurse to organise this tomorrow. At least we can find out what is going on and she can be assessed and hopefully given the right treatment to bring her back to us instead of sleeping all the time xx Feeling worried but and anxious for tomorrow but better that someone is going to something x
Thanks Lainy I have done that and the side effects dont appear to be as severe but it might be the morphine as you say. I really hope so and we are not dealing with end signs that you have kindly sent me in previous emails. We are all hoping friday will give good results just hard to see her the way she is at the moment
Thanks for the info Gavin, Kim is now going in for her ‘work up’ on Tuesday next week as this will be followed by the SIRT treatment the following week. I have laughed with joy and cried so much today as this truly is our what seems to be our last hope. I just hope and pray that this treatment can either keep the tumours at bay or destroy them. She is very fatigued at the moment due to the high level of morphine we think but although scared she is excited that there is still hope x
Thanks Marion, we seem to be quite some way behind the US but I would welcome any comments from others for anything else that we might be able to ask or try for here in the UK. Still waiting to hear if SIRT an option.?
Went to Oxford today to see oncologist who was talking about an option for Kim to do a clinical trial
A trial looking at oxaliplatin and 5FU for advanced biliary tract cancers (ABC-06)
I also discussed the possibility of sirt and they are going to review again but because of ascites and her resection she might not be eligible. Without treatment a prognosis was given of about 6 months and they cant guarantee whether she will get the chemo option on the trial. Can anyone else shed some light on the trial proposed? Is this something that has been offered in the US? Kim is Stage 4 now and her liver has about 7 grape sizes nodules/tumours? . She also has lymph node involvement around the abdomen and ascites.
Bitter sweet day as her daughter had a GCSE results today which were fantastic.
Love to hear of anyone in a similar situation or been through these options themselves x
Thanks Gavin in bits right now but gotta stay positive and have spent the last few hours going through other journeys on this amazing site which give hope x Feeling blessed to be part of such a supporting caring group
You are a legend!! welcome back. Hope you recover well and fight the good fight!!
Thank you all for you kind words. I totally agree that it my sisters decision and we will do what we can to support her. Just heard today that she has an appointment in Oxford this Thursday to discuss clinical trial options. Her view is she will go and find out more information and I have said to her we will support her in whatever decision she makes.
Please send Duke our love and best wishes from the UK. He has always responded to my posts and helped so much in trying to get some answers to this disease. My thoughts and prayers are with you and your family at this time and I am so grateful to him for taking so much time out for others,. Thank you Duke and hope you are ok x
Kim had a scan in August and just got results a couple of days ago. The cancer has spread in both left and right lobes and in one lymph gland. It’s hard to believe that within 3 months the cancer has spread so quickly when only last month we were looking at a stable condition. The next stage is to look at what clinical trials are available that can help. Shocked at how quickly this cancer grows x what happens now? Just how quick is this cancer. She has ICC and how can one minute it be completely stable and then the within 3 months able to spread so quickly. Reaching out to see who else has been in this situation and what treatments have helped at this particular stage which is secondaries. How fast does it grow and what happens if she doesnt select chemo? Deep within me I know she wont give up but it is a year exactly that she was diagnosed and recently wrote the following blog:-
A year ago today I was told I had a 9 cm tumour in my liver, however I strongly believed I would be okay. 2 weeks later I had major surgery in which 4/5 of my liver was removed. Nothing could have ever prepared me for that operation, emotionally or physically. But at this awful time, I was totally blown away by the kindness and support of my wonderful family and fantastic friends. I was going to get through this!!
Then in December came the news that made my blood run cold! The cancer had returned. After six months of chemo there were signs that the tumours had shrunk so not totally given up hope yet.
Here we are year on and 2 days ago I was told my cancer had grown and spread and there’s not much more to be done. I’ve been so lucky to have such great support and love. I hope you all reading this never take a person, a day, a moment in time for granted. A lot could change in a year and the thing that stands out the most is the love, kindness and generosity I have been shown.
I know I am loved and for that I am grateful xx
Please help me as not only a loving sister but patient carer what I can do to help? I am at a loss right now and need some help and guidance xx
I want to fight and keep pushing her to take on the clinical trial but am I doing the right thing? I cant imagine our lives without her and that is such a self egotistic view but what do i do?
ALso wanted to say a big thank you to you Melinda Bachini for sharing your story,
You are an inspiration to us all. I only hope that the UK will offer something like this in the future. My sister has finally had a MDT review so at least she is being noticed now which will strengthen her case for more treatments/clinical trials in the future if needed.
Thanks Marion, Catherine and Gavin. Catherine I have been following your posts as there are some similarities and so thank you for responding as it has given me such hope. The one thing the UK doesn’t seem to do is blood work? Is this something that is mainly carried out in the US? Should I be asking for this?
We just seem to go by the scans. My sister is in a good place right now although she doesnt want to raise her hopes too much and is hoping that the scans in August will be able to offer more clarity especially the MRI.
I watched the video of Melinda Bachini’s journey which was so inspiring and have forwarded it on to my sis. I have no idea as a caregiver what my sister is going through and I do know that I have to be sensitive to her needs and wants but she is happy for me to continually search and gather as much important information as I can to help beat this cancer so. This is why this site is invaluable and am so grateful for the quick responses from you. Thank you x
Thanks Catherine and Marion
I will wait to see what the Surgeon says in her meeting in May and will ask about a re-section again. Although it is only now after 6 months that she is gradually recovering from this major op.
I guess it is hard as I have now finished the last treatment with her and it feels so much more like we are doing something when she has the chemo. It just highlights to me that I have still not accepted what is happening to Kim and I have to at some point come to terms with her prognosis. However she is my soul mate, my light my everything and I refuse to give up on her. She is a quiet humble person and does not want to kick up a fuss where as I want to scream at the world and ask why her.. Then I found this website and without you guys I would not have the courage to ask and question her oncologist so for that I am so very grateful.
Forever grateful and all in my prayers