Has anyone experience of this. My husband has NASH and has had 2 separate HCC'S, he now has some spots on his liver that have blood supplies to them, but not at present diagnosed as HCC.
Warfarin will be prescribed for the portal vein thrombosis, which we should get next week.
Looking for any information at all. Thanks.
Hi, my husband was diagnosed with cirrhosis five years ago and then portal vein thrombosis three years ago. He is 81 now but end stage and was refused a transplant. He was started on Rivaroxaban then Warfarin both to no avail sadly and has recently started Clexane daily injections. These are only available privately at £23 each. I am desperately hoping these will help but he still looks absolutely bloated. He has now developed stones in his bile ducts so he has yet another agonising problem. Hope that gives you some options, good luck Anne.
Thanks for this Anne. I am very sorry to hear about your husband, and the problems he is having finding a treatment that works. I was thinking it would be fairly straightforward to treat! Our very best wishes that the Clexane works and that there is a big improvement in your husband's health. Christine x
I have one 4cm HCC and a 1cm adjacent branch portal vein thrombus (PVT) which is occluded (I assume that means malignant). The PVT rules out transplant according to Barcelona rules. Surgical resection is controversial under the NHS, although it could be possible privately. It depends on how much liver is damaged I would suppose. Has your husband had treatment for the HCC? Have they mentioned TACE? Kind regards.
Hello Grank. Thanks for replying to me, and sorry you have a HCC. My husband has had various treatments for liver cancer. Radiofrequency ablation, TACE and microwave ablation.
I looked up the word occluded, and I think it means that the thrombosis is blocking your portal vein. What treatment have they given for this?
I don't know how much of my husband's liver is damaged,but resection has never been mentioned. Best wishes, Christine.
My liver is damaged by hereditary haemachromatosis, but my liver is compensated, meaning I’m symptom free.
My thrombosis is in a branch of the portal vein, not in the vein itself, and although it’s small it is most likely malignant. For that reason I’m not eligible for transplant or a resection on the NHS. The NHS preferred treatment is TACE I gather. I’ve been waiting since December 13 when the tumour was found on MRI. Resection is not uncommon (privately) providing enough liver is in working order.
I’ve had a telling off, we aren’t allowed to discuss diagnosis or treatment on here because we are all different. It would be interesting though to know where to go to for advice on various treatments. Do you agree?
Yes, it would be useful. I really hope you receive your treatment soon. It's very worrying when you're waiting. Good luck. 👍
A thrombosis is a blood clot and not, itself, cancerous.
It’s HCC with adjacent branch portal vein thrombus occluded which is just bad luck (it’s malignant). You are right, PVT is mostly a blood clot. I’ve had the HCC lesion since at least 2014 (found on ultrasound) but wasn’t told, it was ignored, hence the spread to portal vein branch. Now I’ve a fight on my hands. I’m following this thread with interest as I’ve stopped taking anticoagulants (I gather I was I overprescribed/didn’t need them) but I presume my case is very different - I don’t have a portal vein blockage.
Sorry to hear that your problem was ignored by your docs until it had reached a more difficult stage. Rooting for you.
Thank you. Feeling more optimistic today. I feel well. People keep saying I look well. Plus some great doctors have made suggestions regarding treatment. I’ll put my faith in them. Because it’s classed as metastatic the NHS won’t fund surgery, but luckily we saved. Keeping busy and trying not to overthink it.
I would suggest mdjunction.com for a forum where patients are free to share advice on treatments. There are very experienced and knowledgeable people on both the Alcoholic Liver Disease and Cirrhosis forums. You will not risk a telling off asking for help there.
Hi There. My diagnosis was NASH followed by HCC (2 tumours). Then damage to portal vein after 2 sessions of TACE. Then when I was eventually assessed for transplant I was diagnosed as having portal vein thrombosis. I had to have an injection in the stomach every day to thin my blood and help keep the portal vein open up to transplant and now I have 75mg aspirin to help stop any future problems. I think the injection was called Heptin or some very similar name. Hope this information is of some help. Best wishes to you, Alf
Thanks Alf all information helps. Hope you're doing well now. Christine.
Yes, doing well thanks Christine. I'm 5 months post transplant and feeling very well.Alf
Very good news. 👍
Hi Alf, were you able to get your Clectane injections on the NHS? Thanks, Anne.
Sorry for late reply. Yes, They were on the NHS. Addenbrookes arranged Heparin through my GP's surgery.
Thanks for the info Alf, I will now tackle my GP! Sounds as if you are having a great recovery, so very pleased for you, Anne x
Thank you Anne, It's been a long road but it's absolutely great to be where I am now! Very best wishes. Alf
Hello Remainer, I have had NASH cirrhosis, compensated, now for quite some years, having regular scans etc about two and a half years ago I was informed I had thrombosis in my portal vein. The whole idea of it sent me into melt down I felt so frightened, I thought I was a walking time bomb. I have been on warfarin for more than two years now, the blood clot is still there, but so am I. The consultants (liver and haematology) will no doubt keep a careful watch over it. The body is a wondrous thing and in a recent scan it has shown that smaller blood vessels seem to kick in and provide the liver with blood and bypass the clot, though I'm not taking any of this for granted long term. I have found taking warfarin, rather than apixaban which is a more modern alternative, is more controllable, so if your INR raises this can be controlled, but it's my personal preference and you should listen to the consultants what is best for you, we are all individual. Telling you to try not to be scared is really not enough, just take care and be aware, we are not alone with this, I never realised how many people it happens to. From what I understand, it would be more dangerous to have surgery to remove the clot, and may be some day a miracle will occur and it will go away, but I think it is a rare occurrence. Wishing you the best, I shall watch out for your news. K
Hi there kitkatkaz, I'm really interested in what you have to say on this subject, would it be ok to pm you later?
Really useful information K - thank you. I'm writing about my husband, he's the one with NASH. Like you compensated at the moment, although recently (maybe whilst this clot has been forming), his tummy has been getting bigger. He's obviously having changes in his liver health, so we need to keep watch on things. I was hoping Warfarin would break down the clot, but that hasn't happened for you. I don't really know anything about Warfarin or thrombosis.
Take care, Christine x
Hello, my husband has HCC. We were told just last month that his latest CT scan shows a portal vein thrombosis. He was diagnosed with HCC 16 months ago. He has good liver function as he has a non-cirrhotic liver (he has a rare liver disease - nodular regenerative hyperplasia of the liver). On diagnosis 16 months ago, he had TACE within 3 weeks. He was so well after this that we were able to continue with our travels overseas - even walking along The Great Wall of China! He had a second round of TACE in Sept. '18 - again, he was clinically well and we travelled to Russia and Asia. And then we came home to get the results of his latest scan which showed that, whilst the TACE had been very effective in treating his latest 3 tumours, he had developed a PVT in a branch of the portal vein. This means he can have no more TACE. Also, he can't be started on a trial drug. He's currently being assessed for Sorafenib.
I hope things improve for your husband and send love to you both. Christine.
Is surgery to cut out the PVT possible?
We have been advised that there is no available treatment for PVT apart from Warfarin, Rivaroxaban and finally Clexane injections. My husband has tried the first two and started the injections two weeks ago so we are hoping for a miracle.
My husband was diagnosed with HCC 3rd January (recommended for transplant) but he was then told after the MDT on January 17th that he had adjacent Portal Vein Tumour Thrombus. Obviously this rendered transplant out of the question.
My husband has hereditary haemachromatosis and cirrhosis and so they are giving him a test to see whether he has sufficient viable liver for a partially section. He’s been waiting for the test since 17th January but it’s been held up/ lost in the system.
Subject to the test indicating he’s suitable for surgery, and he’s been told with his cirrhosis that it’s a wild card, they will give him a partial section in 7 weeks time. This would buy him time.
They haven’t offered TACE just in case he’s suitable for surgery.
Based on my husband’s diagnosis on January 3rd, his GP gave him only months without treatment. It’s heartbreaking. We have spent the last three weeks traveling from our home in North Wales to Birmingham for appointments and I feel we have got nowhere. With our only offer of ‘conditional’ treatment 7 weeks away it feels fairly hopeless.
I now wish we had spent the last weeks doing meaningful things together and with family and friends.
You are in my thoughts and prayers.
Oh Grank, this is awful. Why do any treatments take so much time to arrange? How can they "lose" treatment requests like this? I'm so sorry this is happening. When people are so ill every minute counts.
I am annoyed myself this week to not hear about my husband starting Warfarin, but it's nothing like your worries.
Please keep in touch whenever yoi can and I'm thinking of you both. xx
I am so sorry to hear about your husband and the way you have been treated, it is heart breaking. It sounds as if there are three of us currently having negative nightmare problems with our husbands with very little hope at the of the day. I understand there is very little that can be done to dissipate these wretched PVT’s. Don’t give up and keep on pushing. Thinking of you all with love Anne x
Please know we are with you in spirit and stand by your side. Much love xx
Thank you so much. I’m going to request a GP appointment to discuss my concerns. He told us that my husband only had months to live without treatment and more than a month has passed. Perhaps he can intervene.
It really helps to know there are people out there with similar problems rooting for us. This week is going to be critical for my husband Peeps, the team headed by “God” will be making the decision whether to operate or not. If they go ahead we have already been warned that either the ruptures and subsequent bleeding could be terminal or his liver will just give up. We still have the problems with the gall stones and the associated pain. It’s our wedding anniversary today so we made sure we went out for lunch and celebrated. Neither of us will be defeated. So lovely to have your support Remainer, much love Anne x
We hope you enjoy our anniversary. Please let us know how you get on. We spoke to our GP today and he’s trying to move the CT scan forward. He is also asking whether any maintenance treatment is available whilst we await possible surgery in 6 weeks time. He says the gap from cancer diagnosis to treatment is 31 days. Whether or not, he made us feel supported.
Lovely anniversary thanks! So glad to hear that your doctor is supportive and is trying to bring the CT scan forward. Thinking of you both and sending love, Anne x
How are things now? Do you have a treatment plan?
I can’t thank you all enough. It’s such a rollercoaster, but you’re all so supportive. You are in my thoughts.
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