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HCC / No chemo available?

Jayne2
Posts: 3
Joined: Dec 2009

My sister was diagnosed with fibrolamellar hepatocellular carcinoma in August 2008 and had a liver resection in October 2008. She was told that this was curative treatment and that no further treatment was needed.
Follow up MRI scan in May 2009 was clear but MRI & CT scans in November 2009 showed numerous lung metastases on both lungs. There are 25 in total measuring less than 1cm each.

They have now decided that it wasn't fibrolamellar but HCC. As there are a number of metastases, they have said that surgery is not an option. Have also said that this sort of tumour is not chemo or radio sensitive. Not sure about this as have read stories on these forums of others getting chemo. Is it just that the chemo not available in the UK??

Have got the possibility of laser surgery with Dr Rolle in Germany. Has anyone got any comments / information about this? Anything gratefully received!!

leanjohn
Posts: 18
Joined: Dec 2009

My Dad was given the same results. Surgery is not an option and Chemo and radiation is not an option either. He has started Nexevar. It's suppose to help slow or stop the tumors from spreading. He just started the medication in December and seems to be tolerating it well so far. We don't know if it's helping yet, but I pray we get some good results. I will pray for you and your sister.

Lea

slg
Posts: 200
Joined: Jan 2010

Hi Lea,
Just wanted to connect with you regarding the Nexavar. My husband just started taking it. Do you know anything about the results from anyone who has been on Nexavar for a while?
slg

zack1
Posts: 11
Joined: Mar 2010

My husband has been on Nexavar since Dec 2010 and we are still waiting to see what results he will get as well. Due for MRI again March 12, at Mayo. Very anxious. Not a canadate for Liver Transplant due to size and to many tumors.
Diana

slg
Posts: 200
Joined: Jan 2010

Hi,
Would love to hear what the results are on the Nexavar. Where are you located? We are in SF. We are trying to find out more information regarding Nexavar from patients who are taking it. Just may have to start our own Nexavar Disscussion Board for Liver Cancer. Are you interested?
SLG

zack1
Posts: 11
Joined: Mar 2010

My husband Doug was being treated at Mayo but was informed because he is not a transplant candidate our ins was considered out of network so we have had to transfer back to Shands Hospital in Gainsville, Fl. They did a MRI on him Sunday and we return for the results Mon 3/15/10 to receive our results. We will know then if the nexavar has helped or not. Will let you know. We are so tired of these ins companies playing with his life. Yes we would be interested in a discussion board for the nexavar re: liver cancer. We fill so alone in our journey and its like nobody can help.

slg
Posts: 200
Joined: Jan 2010

Good luck with the MRI results on Monday. I look forward to hearing from you.

zack1
Posts: 11
Joined: Mar 2010

3-6 months. no change. sorry

ljw1121
Posts: 22
Joined: Oct 2009

On Monday the 22nd I'll get my 2nd scan results. Wish me well. I'll let everyone know the results. And I also agree that we need to be able to discuss and find out more about Nexavar patients!!! LMW1121

leanjohn
Posts: 18
Joined: Dec 2009

My Dad has been on Nexavar since December 2009. We had his MRI in March and the results are about the same. The "cancer number" has remained the same as well. I don't know how much his cirrohsis plays into this. He has HCC and Cirrohsis. No one can tell me anything!
I am sorry to hear about your results. I will continue to keep faith and hope for the best for you and your family.

slg
Posts: 200
Joined: Jan 2010

Hi Leejohn,
Are they testing your Dad's blood for ALT and AST #'s? And the Alph Feta Protein?

SLG

leanjohn
Posts: 18
Joined: Dec 2009

I know the cancer markker number was at 1985 and is now at 1465 with the Nexaver. I will ask about the other numbers at the next appt.

AnnaA
Posts: 6
Joined: Jun 2014

Hi,

I live in New South Wales, Australia. My brother has recently undergone his fourth operation for Fibrolabellar. His first was in 2007. The last three have been in the last 14 months. After his most recent surgery the doctor has said they can't do anymore surgery :(

I am now on a search to find other patients (particularly in Australia but not restricted to), doctors, families, anyone with a connection to this cancer to share stories, treatments, information and anything we can to help each other. I have started a blog on blogspot under the name Fibrolamellar Australia with my first blog attempt called 'The Beginning' outlining my brothers story with this cancer. I have also started a Facebook page called Fibrolamellar Australia and a group under the same name, all in the hope of connecting people and information. At the moment, we don't know of any other current Fibrolamellar patients in Australia apart from my brother.

Please have a look, like and share if you would and please help me connect people together. There is such a small amount of information out there and it isn't well connected. Perhaps this way we can join the dots and get our loved ones some help that works.

 

Thank you

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