Well it’s been nearly a month since I had my transplant. I am eternally grateful to my donor and wish only the very best for their family.
My new liver has settled in very well. I’m feeling better with every passing day. My specialists have all been very pleased with my progress.
However...
Life can be an arse. It can throw more hurdles in your path just as you think your are nearing the finishing line.
At my last clinic appointment I sat down with my specialist and he uttered the words “I’m afraid I have some bad news”
Apparently my old liver had cancer. This had spread to my lymph nodes before it was removed. The long and the short of it is, according to the knowledgeable ones, is the best I can hope for is slowing it down with treatment. Palliative care was the watch word of the day. That seems to be the approach they are heading towards.
I’m not one to roll over for anyone or anything. I’m not putting my hands up or waving a white flag. I’m not looking for empathy, sympathy or anything else other than maybe a bit of support and info from anyone that may have been through similar.
This is just another hurdle, another fight, I owe it to myself, my family and friends and to my donor and their family to fight this thing. I haven’t gotten this far to just give up.
So fuck you cancer. Do one.
Somebody bring me my Haribo.
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Identity75
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Something similar happened to me too, as in missing something that should have been picked up.
6 months after being diagnosed with cirrhosis, I fell ill whilst on holiday. Had an ultrasound at the local hospital and was told there was a substantial mass in my gallbladder. It wasn't cancer in the end but it could have been. Still can't believe no one picked it up after all the MRI, CT scans and ultrasounds I'd had before and after the diagnosis!?
Identity, after everything you've gone through, I'm sure this was the last think you wanted to hear. I hope you will beat it and wish you all the best.
I’m not really sure how it was missed, they did think at one point that the liver had cancer but the surgeon was of the mind that he’d rather not find out and give me the transplant because if they had found it I probably wouldn’t have received a tx and I’d have both things to battle.
The specialist that told me kept saying it’s very rare but to be honest I’d kinda zoned out at that point to get the gist of what he was saying.
Waiting now on an appointment now with the cancer specialists so will hopefully know more then.
Oh i see, but my way of thinking would be that i would have preferred to have been told first before enduring a tx , but thats just me .. maybe the thinking was post tx then tackle the cancer.
Well i can totally imagine you were all over the place when the specialist told you .bloody kick in the teeth or what but i would have not been happy for the truth not being told to me in the first place
I am gobsmacked as I am sure you were and are... I will keep everything crossed that you are given every shot at beating this ... Here if you need anything x
That's just not fair!!!! I really hope the specialists can offer you more positive news. You sound very brave and are approaching this massive hurdle in an unbelievably stoic way, I could learn a lot from you PMA!!!
You deserve to have many many bags of all varieties of haribo, to give you strength to say FU to the C!!!
So sorry to hear that Identity75, like a kick in the teeth after all you've gone through and such a bright future promised. Not fair at all and such a pity it wasn't identfied earlier and dealt with before it spread then you wouldn't have had to face this.
Keep smiling and get those haribo down you - are they eggs or flying saucers??
Man, I don't know what to say. I've been lurking on this forum for over year and have followed your story. I'm gutted by this post more than any other I've read. Couldn't even eat diner. It's not on. Go through all that and then to get that gut punch. Not on at all. Sometimes things just straight up aren't fair. One of your first posts was quite negative when you first discovered the cirrhosis from PSC. You gathered yourself, had a positive mental attitude it seems after that post and went ahead with assessment for transplant. You need to find that courage again unfortunately.
That's a boot right in the todger mate, fingers crossed for the meeting with the oncologists. I must admit I was slightly concerned that I hadn't seen you post after the Christmas dinner shot, but hoped you were just recuperating etc.
I too had PSC and a TX in 2006. Nearly 7 years later I was diagnosed with PTLD. I think that this means my primary cancer was different to yours but is still lymphoma (?). I had chemo over a period of about 8 months and now nearly 5 years on from the start of chemo I am free of the disease but still live with a tumour that is not growing and a few other manageable issues and I lead a full life. I know that some types of lymphoma are more serious or difficult to treat than others but chemo can help and arrest progress in some cases. I really hope that you are as fortunate as me.
Chemo has just about the same effect on the immune system as immuno suppressants, so needing chemo should not have too many bad effects on your liver (my immuno suppressants were stopped during the 8 months of chemo). I would want to know what my primary cancer is and all the treatment options. Hopefully there is a treatment that will manage the lymphoma and stop its progress. I was treated at the Yorkshire Cancer Centre in Leeds. A great facility with fantastic staff. Good luck.
Hi Identity75, that's the most upsetting and awful news. After what you have been through, its just NOT fair. I will be praying for you when you have your oncology appt and hope they can give you a suitable treatment to kick this bu99er into the long grass.
oh my god i75 how sh.... y is that... scuse the swear but life can be c....
can't believe after all that... youve been through... theres me worrying about a slight thickening of bile ducts.....
i feel ashamed of myself!!!!!
we are all here for you... just if you want to sound off..... don't suppose you will be offered any emotional support.
don't know if you were reading the other thread about emotional support after transplant....the fact there isn't any... and i sure you are adrift with no support now.
i feel sure all us mad liverfolk will be here for you...
Cazer don’t be daft. Never feel ashamed because you are concerned over your own hurdles.
We all go through our own difficulties either on the road to tx or after. They are all equally as important and difficult for the individual in their own way.
Hope they are looking at ways of sorting your issue.
I’m really sorry to here of your situation. You sound like a fighter so best of luck
I showed your post to my daughter at Xmas and she was impressed.
I have asked her if her company can help you as she is a clinical scientist who prepares targeted treatment plans for cancer. This may be a route for you. Her company is oncologica.
So sorry to hear this, i too following your story i hate hearing this but you are going to fight this too. I was misdiagnosed by 3 doctors who all failed to look at the most common obvious signs of PBC i finaly found a good reputable liver doctor and got on treatment. I think medical malpractice is increasing unfortunately and its you and I and other ill people who pay the price. Hang in there and fight i will be praying for you and here with the others to give an ear and lean on.
Identity,
We send you our best wishes, we are sure you will be supported by everyone on our forum,
Hi identity75, I really can't believe what I'm reading, I was so excited for you when you had your transplant and were doing so well. I don't understand how they missed this, I was monitored regularly for nodules on my liver because of the risk of them changing cancerous and growing. I hope and pray that the oncologist can help but your determination to fight this is a huge part of this battle. Sending hugs and virtual haribo
Hi Identify 75. I'm so sorry to hear this. I'm annoyed as I'm sure you are that they didn't spot this. You are a fighter, I'm sure you will kick it into touch! You are one brave person. Always here for you . Take care and eat those haribo!
In clinic again today. Haven’t heard from oncology yet but my liver guys are going to chase that up for me. Did find out what cancer it was as there are various types that can attack the liver. Me being me of course pick one of the rarer ones and have/had bile duct cancer.
My theory now is the PSC caused the cancer and the cancer caused the liver failure.
Well I saw the oncologist today. Not much the wiser to be honest, chemo at this stage isn’t an option, with the immunosuppressants it would be more detrimental than good. They are going to monitor any potential spread with CT scans and cross bridges as and when. If chemo does become an option down the road it’ll be more palliative.
So onwards and upwards. Docs are all very apologetic and puppy dog eyed. They don’t know me. I’ll kick it’s arse and won’t stop. You come for me I’ll come right back at you.
(Take note anyone with any ideas of stealing my Haribo, same rule applies.)
So another update. The oncologist I saw called me this morning, he has apparently been discussing me with another oncologist in London who has been running a trial. Between them they have made the decision on a course of treatment, chemo based, that may have some benefit.
I would have to change the immunosuppressants that I am on but some benefit is better than no benefit.
So at least I’ve now been given some weapons to fight this fucker with.
You may find the charity AMMF really useful to contact, they focus on cholangiocarcinoma ( cancer of the bile ducts) and have loads of information regarding trials etc
I know you don't want fluffy bits so I'll try to be good.
I don't know what the position is on cannabis oil post tx. Ask your doctors because it's quite the Lara Croft with some cancers. Now this is going to sound daft but when I had cancer I pictured it so I could visualise fighting it whether that's for you i dont know.
I'm the weirdo of the group but not ashamed to admit I'm a practicing Pagan witch (it's working with nature not turning people into toads- unfortunately). It means I am in contact with many healing and prayer groups globally and I am more than happy to add your name if you agree. Some people don't want it.
So glad to hear you're as stubborn as me and refuse to give up. One of my greatest joys is proving doctors wrong.
I emphasise with you and offer any support you need.
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