Looking for opinions Please.

[Paderico]

Good evening one and all, just would like to find out if anyone has had experience with Lenvatinib? hope someone can help me understand the effects of this drug.... with thanks.

[Hidden]

Good morning,

I presume you have been prescribed this medication due to having primary liver cancer? If you are in the UK then you should have access to a clinical nurse specialist who will be able to go through the side effects with you, or your oncologist. Again - if you are in the UK please call our free helpline on 0800 652 7330 and we can go through some of your concerns. Alternatively email us on:

[e-mail]

regards

[Paderico in reply to Hidden]

Hello there and a very good evening, thank you for your most welcome reply, in fact I have just returned from Kings and yes after this blood test it will most possibly be on the cards but for Sorafenib... I think I do understand the medical aspects but not the emotional side of things... Just would like to speak with, and befriend someone in the same position.. Thanks again for showing some interest. (anyone out there who would like to chat with me?)..

[Hidden in reply to Paderico]

Good evening,

If you are to start sorafenib you should be given written information about the drug, what side effects you may experience and when to contact your medical team with regard to side effects. You should also have the contact details of the clinical nurse specialist - it is very important to keep in close contact .

The emotional side of starting on this kind of medication cannot be underestimated and a lot of people struggle with this side of things. The clinical nurse specialist may point you in the direction of the Macmillan centre (at Kings) where you would be able to talk to members of staff/volunteers. There certainly have been people on this forum who have experienced sorafenib so I hope you will get some responses from people who have actually taken sorafenib.

regards

[Paderico in reply to Hidden]

Hi Guys and THANK you for your words of help and advice I have had a reply from a member of the forum and a very nice post it was, thanks again. all my best wishes.

Paderico.

[alfredthegreat in reply to Paderico]

Hi Paderico.

I had HCC and cirrhosis (2 tumours)

I was on the TACE2 trial.

I had 2 sessions of TACE along with taking the chemo drug Sorafenib

I started taking Sorafenib one month before my first session of TACE.

The 2 sessions of TACE shrunk my tumours and and the Sorafenib was taken was to inhibit new blood vessels forming to feed the tumours.

I was on Sorafenib for three years. I started out on the full dose but after 3 months it was reduced to half dose because of certain side effects.

In my case I believe it held my tumours stable after shrinkage.

The TACE 2 trial ended abruptly. It was said that there was no conclusive proof that Sorafenib was of any extra benefit when used alongside TACE procedure.

I continued to take Sorafenib when the trial ended as I was not deemed eligible for transplant at this time and so I saw this as my only choice.

I took it until the dates of Sorafenib for the trial ran out.

When I stopped taking Sorafenib I entered liver failure from Cirrhosis and I was offered the chance to go for assessment for liver transplant.

I am now 18 months post transplant and doing very well.

If there is anything that I can help you with then don't hesitate to ask.

My very best wishes to you on this journey.

Alf.

[Paderico in reply to alfredthegreat]

Good morning to you Alf, it was so good to receive your reply, I feel as a terminal patient I get somewhat shelved at times, anyway my story is not dissimilar to yours and thank you for the offer of help, I appreciate it, I have had 5 Tace procedures and on my 5th time around I was prepared for a good result and expecting some sort of Micro/Radio therapy to follow and do the job for once and for all. (3-5 tumours in my Liver at any one time but Tace procedures worked very well) Then on the 5th managed to contract sepsis E-coli and an abscess on my Liver. Returned to Kings yesterday and was offered Sorafenib this I was told may give me a year to add to my lifespan, needless to say I am very scared, very upset and totally in the dark, O yes Alf I have read up on the subject side effects and so on but as thy say there is no substitute for experience. Thank you so much for listening to my rant and I will definitely take you up on your offer of being able to ask for some guidance with this. Congratulations you did yourself proud, I am so pleased that your transplant went well, all my very best wishes.... Cheerio for now and I hope to hear from you again.. Paderico.

[alfredthegreat in reply to Paderico]

Hi again Paderico.

What an absolute bummer for you (for want of better words!) to contract sepsis and an abscess when you were hoping that an end to the cancer was in sight.

Yes, our stories are similar. when I was diagnosed with HCC in August 2014 and cirrhosis a short while before, my choices were very limited. I was only 6 months from retirement and felt that the rug had been whipped from under my feet!

I was not eligible for a liver transplant as my tumours were multiple (2) and I was a child Pugh B. I wasn't eligible for ablation because one tumour was close to my portal vein.

I was given 5-6 months to live without treatment, If I were to have TACE and responded to the treatment then I could have up to 18 months.

If I were to go on the TACE 2 trial and take daily Sorafenib then I could (once again if I responded to treatment) have considerably longer.

It's a bit like Hobsons choice really isn't it?

I felt if that was the only choice available to me then that's the course that I would take.

I believe that making that choice was what kept me alive.

My tumours responded well to TACE and continued to shrink to the point where about a year or so later I was told that when looking at my tumours on scans it was difficult to tell with one of them whether it was a nodule that was the remains of a tumour or a hole where the tumour used to be, so that was uplifting news.

My cancer didn't travel outside of the liver. There was a bit of a scare after a couple of years on the trial that there was something showing on my lungs and that if it was cancer then I would have to come off the trial, luckily for me it turned out to be scar tissue.

I can't say that the journey on Sorafenib was easy and without it's problems, but I will say that faced with those same choices today then I would go down the same route.

I am here still to tell the tale. My life was extended and eventually I was deemed eligible for transplant.

I hope that this information is helpful to you and please feel free to contact me at any time.

All the very best to you.

Alf

[Paderico in reply to alfredthegreat]

Hi there Alf yet another uplifting post..

Thanks so much for sharing. " yes sir,....." 4 years ago I was also told 6months to 1year, HCC and Cirrhosis... then Tace and that kept me going... in my 2nd year again was told it had gone to my Lung but it proved to be the scaring of a collapsed Lung so got another 6months prognosis from that scan. All in all had a bit of a time I must admit

Now Sorafenib,, which I will give my best shot at, Your post has helped tremendously, my Consultant Oncologist at Kings seems to go for the "one more year option" Myself I am banking on reaching 3 long lovely years just as you have done. As we speak I am expecting a telephone call from my CNS to confirm blood test are good enough for me to carry on with the Sorafenib. So will let you know the outcome and then,,,,, well the game begins all over again..

Yet again Alf my heartfelt thanks, you are an inspiration at this stage, just knowing someone is there to chat and share worries with also I find the advice invaluable. Hope to spk soon take care.

Paderico.

.

[alfredthegreat in reply to Paderico]

Hi Paderico.

Medical science moves on at a faster pace now than ever before.

Who knows what treatments may be available for you even one year from now?

Five and a half years ago I didn't reach the criteria for transplant, 18 months ago I did.

Very soon under the new opt out scheme for donors more organs will be available for transplant so hopefully the goalposts on eligibility may be moved and people will be considered for transplant that wouldn't have been considered before.

Keep that positive attitude, it really does help in this battle.

Rooting for you all the way.

Alf