Cancer spread to liver

Hi PollyH I'm so sorry, I won't pretend to know how you are feeling i can only imagine. I can't offer any advice or tips but hopefully someone will see your post who can. It might be worth checking out the liver cancer forum maybe there will be someone on there who can help, but if not we are all here for you however you need us. Sending a massive hug. Xx

Thank you Bungle 

X

Hi PollyH ,

I’m absolutely devastated to be reading this news, I’m so sorry you’re having to face this right now. Having said this I’m pleased to hear you’re feeling a little better now you’re receiving treatment & that you’re able to continue enjoying quality of life also. 

I think you’re wise to seek a second opinion, as many eyes on your case as possible can only be a good thing. We all know how treatment options can vary from team to team/hospital to hospital.

Obviously I’m not medically qualified in any way but if immunotherapy hasn’t been offered then I would ask why, I can understand chemotherapy being the first line treatment as I’m presuming that this will be aimed at shrinking the tumours affecting your liver or at the very least stopping their progression but would immunotherapy be an option after the chemotherapy is done?

I hope that someone will come along that can offer you some more constructive advice. 

As Bungle has mentioned it would be worth taking a look at the Liver cancer forum  just to run your situation by the folks over there, you never know they may be able to offer a little more insight. 

Please remember we’re here to support you however we can.

Just a thought, if you’ve any local cancer charities or a Maggies Centre close to you please see one of their benefits advisors & take some advice on putting in a PIP claim or something similar, something like PIP would ease any financial stain that can accompany any long term health condition. I can appreciate that it’s possibly not in the forefront of your mind at the moment but it’s just a thought. 

Sending you a huge healing hug.

Nicola 

Hello PollyH 

My heart gave a sickening lurch when I read your news; I am so very sorry and your feelings are completely relatable.  You must be in absolute turmoil right now and I hope your second opinion comes through very soon.

I was stage IV at diagnosis with a spot on the lung and underwent the chemo regimen that you are undergoing now first; there was always a question mark as to whether I would eventually have the chemo/radiotherapy as everything depended on how I responded to the six sessions of chemo.  I found the systemic chemo alright, it was certainly better and bearable than the chemo/radiotherapy that I did go on to have afterwards.

I was treated at the Royal Marsden in Sutton, and their treatment of patients is exemplary.  They are so well organised I have never had to wait long periods for appointments, results of scans within a week and during radiotherapy I would be out and finished before my husband had finished his coffee in the cafeteria.  When I finished within a week I was in the Chelsea Marsden having an ablation on my lung, and then a week later an ablation on the other lung as there was an area there that they weren't sure about.  In both cases I was put in a private room, I can only assume because other beds were unavailable.  One lung (four years later) still shows inflammation which they closely monitor.

The immunotherapy that is available for anal cancer in some places in the EU and the US is Retifanlimab (which is very expensive).  However, the UK is bound by NICE approval which may take some time, so is not cleared for treatment yet.  However, in some exceptional cases the manufacturer will supply it on compassionate grounds.  I say this not to raise false hope but any avenue is worth exploring, however slim the chance of success is.

There is another forum member on here who is having a different immunotherapy after her cancer returned, she started only recently and feels fine, I am hoping she picks up on your post and can share what she is having.

My knowledge of spread to the liver is really limited and I have no medical training but please bounce ideas off me if you think I can help; I am certainly familiar with the feelings of utter despair and sitting in front of a laptop trying to investigate what can be done to treat anal cancer that has spread.

Please let me know how you get on.

Huge hug

Irene xx

Hi Polly H,

I was sad to read your news, but knowing you are reaching out for a second opinion ,is a good thing.

A friend’s

friend, was looking at alternative treatments, and found T.R.A.C. Apparently they inject the chemo directly into the tumour. Came from Germany I think .

i think there is a trial in the Birmingham area.

All second hand info but hope it helps. Sending positive thoughts AGP

Hi Nicola

Thank you for your message. It just doesn't seem long ago that I was excitedly sharing woth this group that it was all gone. I have been told it is extremely rare for it to have come back and spread so aggressively and bad luck. I am conscious I don't want people here panicking,  as this isn't usual.

I did ask about immunotherapy and that didn't seem an option but yes I will go back and ask why. Ive found out today The Royal Marsden has now got my referral so hopefully I get an appointment soon. 

I have actually already started the process for the PIP application as Macmillan advised.my cancer team has sent the relevant SR1 to Macmillan finance who I understand put the application in on my behalf... I need yo chase on this. I also thought I would see about drawing down some of my pension. Sad but you do have to think about the finacial implications being off work has. 

Thanks

Polly 

Thanks AGP. Yes I have heard about TRAC Addenbrooke's don't offer it and when I asked yesterday they didn't known if it work for anal cancer.As it is still classed as anal cancer in the liver. I find it very confusing as I heard also of someone who had it after having bowel cancer that spread to the liver who is now 10 years on ! Maybe the Royal Marsden will be able to provide this...

Thanks for your support 

Polly

Hi Irene 

Thank you for your message and support. Im sorry you were also given the stage 4 diagnosis it's awful isn't it getting the news! I feel a glimmer of hope that you seem to be doing well 4 years on. I felt at the time of getting the diagnosis that it was all rather grim but do keep hearing more people living beyond their doctors original prognosis. 

Hopefully the Royal Marsden might be able to offer more options. At the moment I feel well and am trying to stay positive, get outside walking daily and eating well. I will also look at the liver cancer forum. 

I just feel quite overwhelmed about it all to be honest and keep thinking it must be a mistake 

Best wishes

Natasha

Hi PollyH ,

I saw your post and just wanted to offer a couple of names. Dr Katherine Aitken was my Dr at RM and she works with Dr Sheila Rao who spcialises in Lower GI stage 4 cases. Professor Cunningham runs the Chemo side of things and all are absolutely brilliant. Professor Kevin Harrington is a friend of a friend of mine and leads on Immunotherapy for HPV cancers of Head and Neck at RM - clearly v v linked to HPV cancers elsewhere. 

Sometimes having a name can help. You could also always book a private consultation and flip to NHS care there too.

All the very best for your treatment, Eve x

Hi Polly. I'm in the same position as you but a little further ahead. At my 3 month scan after completion of the 28 days chemo/radiation I was told that I'd had a complete response for the anal cancer but that I now had multiple lesions in my liver. Like you, surgery not an option due to the number of lesions. All I was offered was palliative chemo and I've completed 4 months on the same cycles as you (Carboplatin and Paclitaxel). At my 3 month scan the biggest lesion had shrunk by 60 % so I'm having a further 3 months. No real side effects and actually not ever had any symptoms. The only bothersome thing is that my neutrophils are regularly too low and they pause treatment for a week, which is annoying, but I can't really influence that. I've not asked for a second opinion yet, but will definitely do so after my next scan when chemo is finished as I'm not convinced my oncologist has any plans other than to watch and wait at that point, which isn't good enough as far as I'm concerned. So I will be really interested to hear how you get on with the Royal Marsden. Did you specifically ask your oncologist to refer you there for your second opinion? 

I'm still operating pretty much as normal. My stamina isn't what it used to be, but I'm still able to walk 5+ miles.

Tips - be prepared for changes to your taste. Mine goes wonky a couple of days after each infusion, and that lasts about 3 days. Also be prepared for delays to treatment if blood counts are low or if you've experience side effects that the nurses aren't happy about. You can't plan anything I find.

Please do keep in touch. And good luck!
Sarah x