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Primary liver cancer and Nexavar

kuchie401
Posts: 2
Joined: Apr 2009

My husband was diagnosed with stage 4 primary liver cancer in January 2009. He has a couple large tumors and several small lesions on his liver, and he also has a very large tumor on his left hip. He was put on Nexavar as a treatment. He has been on it for about 8 weeks now, and he had a CT scan which shows that the tumors have shrunk very slightly. I would like to know what the prognosis is for this treatment. From what I have learned from the research I have done is that this shrinkage is only temporary, as Nexavar will only prolong his life for a couple of months. Can anyone give me any further information on the topic of Nexavar and primary liver cancer?

Ndeke
Posts: 1
Joined: May 2009

Hello Kuchie401

I absolutely understand what you and your husband muyst be going through.. My husband was also diagnozed with stage primary liver cancer in early January. He has now been on Nexavar for a few months and also had his catscan - In his case the tumours did not shrink. His cancer didnt spread, and didnt grow much.. but it could flare up so his oncologist team is now checking for the next course of action - radiation spheres? , etc. We are waiting to hear back.

Nexavar from what our specialists have told us usually will stabilize the tumour, not necessarily shrink it - so in your husband's case, that's really good news..at least the tumours shrunk - I heard from my husband's oncologist that he has another patient that has now been on Nexavar for 2 years and is doing really well on it.. No shrinkage.. but no growth. Its a matter of seeing how long Nexavar will work on a person, and how well a person can react to Nexavar. Its only 4 pills a day - but its very poweful chemotherapy -

Nexavar is not a cure for liver cancer - but as you said it will prolong life - However, I am finding out that there are other options to look at as well.

The radiation spheres are a new type of treatment that has shown success - these are little spheres that get inserted into the liver and kill the cancer cells. They are called Seer Spheres.. My husband would have been a good candidate for it except that he has for the last month been very jaundiced. We dont know whether its from the tumour, hepatitis C, or because this last month he was taking Tylenol to ease the headaches - Tylenol apparently is very bad for the liver. We didnt know but we're monitoring his blood levels, etc. to see if they improve since he's been off the tylenol.

There's another new treatment that will be available in the next two months that also deals with radiation but its a very targetted type of radiation and will only kill the cancer but it wont touch other parts of the body -

What you are going through is hard... I understand.. Have faith and believe.. it helps.

I'll be glad to share information and support! God knows we all need it..

My prayers are with you and your husband.

tdm1991
Posts: 11
Joined: May 2009

My husband has beend newly dx with primary liver ca, mets to the bone. The medical oncologist is starting him on Nexavar. He is worried about the side effects? We do not have a prognosis as yet, have appt w/ md on monday.

Will be checking in from time to time for information. My thoughts are with all of you who are fighting this battle.

t.pothast
Posts: 3
Joined: May 2009

Our son was diagnosed with hepatocellular carcinoma at the beginning of the year. He was able to have a liver resection performed and the tumor was removed with good margins. We started chemotherapy in February and used a combination of drugs that included cisplatin, 5FU, doxurubicin and interferon. We went through 3 rounds of this therapy but it has begun to take a toll on his body.

Our doctor is now going to switch us to Nexavar. Based upon what I've seen here and through additional research Nexavar either at best stops the tumor or slows the growth. Has anyone had any luck with reducing the tumor over an extended period of time?

HayleyAnton
Posts: 2
Joined: Aug 2009

my father has also been diagnosed with hepatocellurlar carcinoma and he to has been put on nexavar. he has experianced some of the side effects such as diarrhea and tiredness but i am finding it so nerve wrecking. i can see he is worried and anxious and i am just trying to be strong for his sake. he seems so healthy right now and i cannot believe that he has got something so serious with him. can anyone tell me i you are following a specific diet as i do beleive that what we eat can play a role in helping one to heal oneself.

buckeyes40
Posts: 3
Joined: Sep 2009

Thank you for sharing your story....My father was diagnosed last week with advanced HCC and our family devastated. He took his first 2 pills of Nexavar this morning. How is your dad doing. Was his advanced when they found it.....I was thrilled to read about someone doing so well at 1 year out. Would love to hear more....it gives us hope!

Lady Bug
Posts: 2
Joined: Jul 2009

My son was recently diagnosed with neuroendocrine cancer with mets to the liver and bones. He was on cisplatin and etoposide for two cycles with no improvement. According to the oncologist,he has a new tumor in his liver. Please give me further information on what your son is being treated with so I can present my sons oncologist with more options. Thanks

sunny01
Posts: 2
Joined: Aug 2009

My father was also diagnosed with Advanced liver cancer that has spread to his bones. He has been on Nexavar for several months and was also VERY concerned of side effects. He has very few if any. A slight itch on skin and diareah(spelling?) is all. Those are the main side effects and from what I have heard, most people tollerate it pretty well. Tell him not to worry but as I have experienced with my father... it is hard. My prayers are with you and your husband. Stay strong ;)

sunny01
Posts: 2
Joined: Aug 2009

My father was also diagnosed with Advanced liver cancer that has spread to his bones. He has been on Nexavar for several months and was also VERY concerned of side effects. He has very few if any. A slight itch on skin and diareah(spelling?) is all. Those are the main side effects and from what I have heard, most people tollerate it pretty well. Tell him not to worry but as I have experienced with my father... it is hard. My prayers are with you and your husband. Stay strong ;)

buckeyes40
Posts: 3
Joined: Sep 2009

My dad was diagnosed with advanced HCC last week. Our world has completely changed. Can you offer us any words of encouragement or hope. How is your dad doing?

gianatylr
Posts: 1
Joined: Aug 2009

My mom was told on her 60th birthday she had a 10cc mass on her liver that was HCC Carcinoma. The oncologist said surgery was no option. Nexavar will be delivered tomorrow. My mom is so nervous about the side effects it will cause. Her doctor projected approx. 11 months to live. My aunt who is a pathologist agreeded with the findings. Please let everyone you know to request Alpha Feta Protein test as part of their annual physical blood work. An indicator that something is wrong with your liver, ovaries or testes are revealed with high numbers. She had lab work done in April but that test was not requested. Had it been, perhaps the tumor would not be so big and perhaps surgery would be an option. I am still hoping for that miracle! My mom is so full of life and it is unbelievable how sick she really is.

buckeyes40
Posts: 3
Joined: Sep 2009

How is your mom doing? My dad started Nexavar last Wednesday. Would love to hear how your mom is doing after being on the meds for over a month. We are hoping for a miracle as well!!!

golfr12
Posts: 6
Joined: Oct 2009

I am 39 years old. I had no symptons and was diagnosed with advance HCC in November 2008. I had 9 cm tumor in my left lobe and small lesions in right lobe. I am getting care at University of Wisconsin. I had thermoarterial chemoembolization (TACE) and Therasphere (radiation) treatment. They both proven successful in targeting tumors and shrunk them to nothing. However, I am still struggling with tumor growth. Nexavar didn't work for me so I am searching for another agent. MY AFP during Nexavar kept escalating from 1200 to 1400 to 3400 after seven weeks. I stopped using it after my last CT scan. Anyone have any ideas what else to try?

golfr12
Posts: 6
Joined: Oct 2009

I was on Nexavar for seven weeks. I had serious abdominal pain and blistering in the feet and hands. Unfortunately, it did not work for me. MY AFP increase every four weeks. What has been his AFP score? I stopped taking the pill due to the side effects and best case, it will stop tumors not shrink them. Have you tried Sutent? I have heard it has worked also. By the way, how do I post a comment on the discussion board? I don't see how anywhere on this site?

likou
Posts: 1
Joined: Nov 2009

My dad has just started treatment with Nexavar. He was diagnosed with advanced HCC 3 weeks ago. It has been 1,5 month since the first CT-scan. Ever since he is getting weaker and weaker. Fortunately his weight stabilized but we are afraid of hepatic encephalopathy. Hope we see some improvement with the drug. Wish you all the very best...

Nanavic97
Posts: 1
Joined: Nov 2009

Hi,
my father in law was diagnosed with stage 4 yesterday and they have started him on nexavar also. Your husbands case sounds very similar. How is he doing? What were his most common side effects? Any words of advice, or websites/books you can recommend?

leanjohn
Posts: 18
Joined: Dec 2009

My father was diagnosed in November with stage 4 as well and was put on Nexevar. He is doing okay so far. He is fatigued and has a upset stomach from time to time, but is doing well overall. (so far) I went to the Cancer Institute and picked up some pamplets and books reguarding Liver Cancer. I forgot the name of the book I just recentyly bought, but I will post the name tomorrow. My prayers are with you and your family.

Hanabanana
Posts: 2
Joined: Apr 2010

My son is on Nexaver. We are praying (does that help...we hope so) and need to hear from someone on N that has surviverd and aside from Nexaver...what is he/she doing to stay alive and well?

NumOneMom4
Posts: 6
Joined: Apr 2010

My husband was diagnosed with HCC in January. He had radiofrequency ablation on Jan. 22 for one 3cm tumor on his right lobe. His six week postop MRI showed multiple lesions had popped up on both lobes. No chance of transplant now. They are going to do a sirspheres treatment next Wed. and he will start on Nexavar on the 24 of May. Anyone out there with any information on the treatment or life expectancy after treatment would be appreciated.
We go to the Medical College of Virginia for his treatment. The doctors tell us very little unless we ask specific questions. My husband signed up to be in a clinical trial, and sometimes I feel as if he is just a lab rat.

Trish1615
Posts: 2
Joined: May 2010

My boyfriend started Nexavar treatment in December and died in February. It did absolutely nothing for him. I am angry at the company and the oncologist for giving us false hope. It was horribly expensive as well. However, if it has helped some, then that is wonderful. I just think the oncologist should be more cautious in what they offer up as "treatment".

mgp
Posts: 4
Joined: Apr 2010

My husband was also diagnosed with HCC in February. He started a trial infusion called MClone 12 with Nexavar. The infusions are easier than the Nexavar. That has really made a very active guy always tired. He had to stop working. So far only had one CT scan, and that showed no growth of the tumors, and some shrinkage. Tonight the tiredness is really wearing on his spirits, and we are on a rollercoaster. Best of luck to both of you.

Mako181
Posts: 13
Joined: Jun 2010

In June 2008 I was given 7 to 30 days at most to live after being diagnosed with stage 4 Liver Cancer. The AFP was around 37,000 and was retested because that number was off the charts. It came back in three weeks with 55,000, things were going down hill fast. They sent me home to get everything in order and spend time with my family. They did order Nexavar and said that I might not be alive when I get it, but I did by taking a nutritional shake and a lot of prayer. Today my AFP is around 150 and the cancer is not growing. I have had little or no side effects from the Nexavar and still take the max dose twice a day, alone with three shakes. I'm was due to get my six month CT scan in May but was pushed back to end of July so the doctor could see the sickest first. For the first time in my life I was glad to be at the end of the line.

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

WOW! I feel like I am not alone! I cant believe how many people's dad were diagnosed with HCC! My dad was recently diagnosed with HCC ia march 2010. He underwent a hepatic vein embolization in april and a liver resection may 21,2101. They removed the 13 cm tumor along with 70% of his liver with good margins. I still cant sleep very well at night and my dad has lost 30lbs from stress and decreased appetite. We havent followed up with the oncologist yet but i wonder if he will start dad on nexevar, there is no trace of the cancer anywhere else in his body. He is only 54 and I am 25, getting married in the fall and really want him around to meet his grandkids! I just cant believe this can really happen, perfectly fine one month, the next not sure how much longer you have! I love him so much and we are so afraid, he has never been sick a day in his life!! Im praying for all of you :)

slg
Posts: 200
Joined: Jan 2010

Please see the comment posted by itself regarding Nexavar and TACE for my comments and results from both.... Hope you find it encouraging.
slg

mgp
Posts: 4
Joined: Apr 2010

Hi Sarah, my husband was diagnosised in feb, but is unable to have surgery. it is soooo shocking. and my daughter will be married next fall too. sounds like your dad is in good hands. weight loss is very commmon, your dad may try the nexavar chemo pills too. they are strong medication but it might help.
prayers and good wishes to your family.

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

I have angiosarcoma of the liver...Lesions in the blood vessels of my liver...They gave me 3 months at most to live in 2003. I have had several RFA's done,(you can read about me at offutt9) I am still living and playing with my grandkids.I go fiswhing and am able to do anything I want. The RFA (radio frequency ablation) is an overnight stay in the hospital..I just wanted to let you what worked for me. But I give ALL THE GLORY TO GOD!!!!!

floydr1
Posts: 1
Joined: Jun 2010

Hi there!

My father was diagnosed with liver cancer this year in February of 2010. We live in Cincinnati OH and have seen many doctors who say that cannot do a whole lot for us in terms of therapeautic treatments. We have had 3 chemoembolizations, and now they are wanting to do Thera Sphere radiation. I am making an appt today at the Cleveland Clinic and I'm wondering who your doctor was? I would love to get a second opinion.

Thank you so much and God bless!

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

I saw Dr. Allan Sipperstein. He is a general surgeon. However after picking out Dr. Sipperstein to be my doctor, I had to make an appointment with Dr. R. Pelly and he referred me to Dr. Sipperstein.. Great Doctors...Great, and Caring Place to be,

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

I have angiosarcoma of the liver...Lesions in the blood vessels of my liver...They gave me 3 months at most to live in 2003. I have had several RFA's done,(you can read about me at offutt9) I am still living and playing with my grandkids.I go fiswhing and am able to do anything I want. The RFA (radio frequency ablation) is an overnight stay in the hospital..I just wanted to let you what worked for me. But I give ALL THE GLORY TO GOD!!!!!

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

http://cancerfocus.org/forum/showthread.php?t=3141

jeffaloujiro
Posts: 1
Joined: Oct 2010

My husband was recently diagnosed with HCC stage 4 with bone met. Right now he's undergoing Cobalt RT for his spine as the caner spread on two points of his spine.He was given months to live and Nexavar was the treatment the oncologist said however she said the result will be minimal if he is already at child's pugh b. We live in Manila Phil and getting nexavar is sky high expensive, with our currency it will cost us close to 1 million pesos. But we're looking for means as GOd is good. It's good to hear that there are a lot who can share there inspiring stories.

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