CSN Login
Members Online: 4

nexavar

airaony
Posts: 2
Joined: Nov 2007

My husband was diagnosed with primary liver cancer April 07. He has lost 45 pounds but, eats very well, even with chemo which the doctor have taken off, no real response to it. His surgeon told us that he needs a liver transplant because the tumor is to big. No cancer has shown up any where eles. We are now waiting to hear from Henry Ford Hospital for a consultation to see if he is a canidate for the transplant and to get on the list. His oncologist is starting him on Nexavar and I am very concerned about the side effects. Have anyone had a positive reaction overall.

I am also asking for prayer for him and my family

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

Hello!!!! I have primary liver cancer called angiosarcoma of the liver. It will be 5 years in January... There is no cure for mine and I can't have a resection or transplant, and no known treatments. I have been taking chemo, (all different kinds) for the last almost 4 years, as a hit and miss situation. I have also had 2 RFA'S done. I don't know anything about nexavar, but I do know God. He is my Saviour!!!! I give all the Praise and Glory to Him for my being here!!! I will pray for you and your husband and family. Never give up! Tell your husband to keep on fighting and keep the faith..God is the GREATEST PHYSICIAN!!!!!!! In Gods Love...Barbara

hopefulone
Posts: 1048
Joined: Jan 2007

Hi. I'm sorry I can't help you with info on the Nexavar, but I can with the prayers. My hubby, stage IV colon cancer with liver mets, just underwent liver resection 2 mos ago, after 9 chemo treatments with avastin, xeloda and oxalplatinum. We were told inoperable for a very long time. His treatment plan was very aggressive, and we were very fortunate that his side effects were minimal. Everyone (thankfully) does not experience the severe side effects that some of these drugs can cause. Keep that in mind when doing research. It's very hard, but you have to outweigh the good against the bad. We are still facing some tough decisions. Good Luck and God Bless and keep us posted.
Diane

airaony
Posts: 2
Joined: Nov 2007

I want to thank you both for your kind words and prayer for my husband. My husband is now becoming reaquainted with god and I am very thankful for that. I will pray for your healing and comfort as well. Oh, we did hear form Henry Ford Hospital he have an appiontment on Wed to see if he qualify as a candiate for a transplant. I will keep you all posted. thank for your kindness I needed it!!!!
Sandra

bollard020202
Posts: 3
Joined: Apr 2008

There are other factors besides the size of the tumor that will allow or not allow surgery. Often if a tumor is very large surgery is not an option at all. If the remaining liver is not healthy complete liver failure can occur after surgery. You don't mention if your husband has healthy liver function. My fil has advanced primary liver cancer. His tumor was quite large when it was found. Surgery was never an option. the smidge of liver he has left is apparently extremely healthy however so he was put on nexavar - but only to slow down the growth. It gave him bad side effects and did not slow down the growth of his tumor. It was a waste of time. the tumor nearly doubled in size over the treatment with nexavar. His doctor did "misrepresent" the drug in the sense he said there are practically no side effects but there are. Dad lost his sense of taste. He suffered from severe blistering on his hands and feet. He experienced fatigue and upset stomach. the worse was the complete loss of taste and the blisters on his hands and feet. He no longer takes it. Is is also extremely expensive. Dad has medicaid and his share of the monthly expense was $4000.00. The major studies on nexavar did not show an increase in survival rates. It did give users 6-8 weeks more life. But those folks had good liver function left. I don't know if there are sufficient studies or any studies on folks who have liver cancers who's livers are not in good shape. the terrible thing about liver cancer is how much the human body depends on the liver for health. as the tumor grows the liver will be impared. Advanced liver cancer has huge impacts on all sorts of bodily functions. Dad now has it in his lungs. That was from December 5th, 2007 to March 28th, 2008. He is following the numbers - 3-6 mths. I hope your husband has much more time than that. I hope if he is placed on the transplant list he will survive long enough for a transplant. I hope you know the odds are not in favor of that. There are too many in need and not enough donors. As seems to be the case with most transplant situations. I believe in God and I believe God is always in charge - not the doctors. I hope good things for you and your husband - I know I have said too much already but since I have I will continue and say one thing more. I would take the nexavar only if I were a candidate for a transplant. I would look into radiofrequency ablation if I had a chance at transplant. It is a procedure used to slow down growth and in your case might give your husband enough time to have a transplant. If you haven't heard of it here is the small gist. they use a device like a fork. It is inserted into the tumor and heated. The heat "melts" the tumor cells. Now this is the simple gist. It has side effects and possible complications. It also has restrictions as to who qualifies for it. I think out of all the research I have done in the last 3 months this kind of treatment is the most promising. It allows precise killing of tumor cells and leaves healthy cells alone. The doctor who "invented" this procedure works in Cleveland. I don't know where you live but I sure would look into this as a possible option. Good luck to you and yours.

tsch020
Posts: 1
Joined: Nov 2008

Hello,I am from China,My elder brother who is 30years old is now suffering from liver cancer recurrence after 6years' surgery ,unluckly it has now also spread to the lung,he received from the surgery 3months ago,then he is receiveing the chemotherapy,but the doctor said that this treatment does not work very well,he suggests to take the Nexavar,actually we know little about this medicine,so my brother is just to try this medicine now,Is there someone have the similar situation,would you please share your opinions to me, or is there better therapy on this case.

kuchie401
Posts: 2
Joined: Apr 2009

Hello, my husband was diagnosed with metasticized primary liver cancer in January 2009. A large tumor was found on his left hip, which when biopsied was found to be liver cancer. He has had Hepatitis C for about 20 years, so therefore he is not a candidate for liver transplant. His oncologist at Sloan Kettering in NYC has put him on Nexavar. I'm not real fond of this doctor because he doesn't give us a lot of information. I would like to know if anyone has had any luck taking this drug, because from what I understand through many hours of research, this drug is not very successful in the treatment of Primary liver cancer. It might add another couple of months to his life. My husband has been on the drug for about 6 or 7 weeks now with very few side effects other than diarrhea and extreme tiredness. He went today for a CT scan to check the progression of the cancer and we will get the results next week. If someone could please give me some information on the prognosis after Nexavar, and also tell me how long he can remain on Nexavar if it is working at all.

golfr12
Posts: 6
Joined: Oct 2009

I am 39 years old. I am Asian and was placed on Nexavar seven weeks starting in early August. I have advanced HCC. The Nexavar gave me blistering in my hands and feet. Painful blistering. I also had severe abdominal pain and fatigue. When I first used it, it gave me a low grade fever. I went to ER and they couldn't do anything for me but administer pain medication. I stuck with it hoping it could help me. From what I have been told, it will only stop growth with very little chance of shrinkage. However, I was hoping it would work for me because I heard it was more effective in Asians. I had my AFP monitored throughout the process but it only increased with each blood work. It went from AFP of 1200 (July) to 1600 (August) to 3400 (September). My doctors told me to stop using the drug after my last CT scan. I am now searching for other alternative agents. I heard of Sutent and Avastin. I need to do some research and discuss with my physician at UW Madison. If you heard of others, please share. I am still fighting this horrible disease.

DemiK
Posts: 2
Joined: Nov 2009

First of all, I am tremendously sorry for your husband's diagnosis. Much time has passes since you first posted your message, but I hope that he is still fighting this aggressive disease.
My father was just diagnosed with primary liver cancer and we have an appointment scheduled at Sloan Kettering for a second opinion regarding treatment options. Would you be able to tell me the name of the doctor you and your husband use(d) so I can avoid him?

Thank you for your time.

greenfuzzy
Posts: 1
Joined: Dec 2009

My wife was diagnosed with primary stage 4 liver cancer in May 09. Surgery was not a option as tumor also found on pancreas. She has been taking Nexavar since Jun. Only side effects rash, and hair loss. The rash went away when the dose was decreased to 3 pills per day.
The Nexavar seems to be working. Followup CT scan in Sep showed tumors had shrunk. Just did another CT scan today will know the results in a week or so.

My prayers are with you and your husband

labrierie
Posts: 5
Joined: Nov 2009

I had a 7 cm hepatacelluar carcinoma tumor with well defined outer circumference removed by having the entire left lobe of liver removed. My gall bladder was removed to prevent any surgery needs for that in the future. That is the cure for this type of cancer. However, I still had the hepatic never with cancer cells upon labwork after surgery. I have a 50/50 chance of recurrence and therefore if it comes back I am not a transplant candidate at all. I am a 40 year old mother and wife. My first thoughts were... I will try anything to take care of my cancer as long as insurance will cover it. Nexavar was highly recommended to me. I decided to try it because there are just not a lot of options out there. Also the right side of my liver is healthy at this time. The Nexavar has caused me only minor skin dryness so far. I have only been on Nexavar for 1 week and will keep updating as I progress. I am supposed to be on it for a year. I don't know if the cancer has spread or not will find out tomorrow and let you know what my treatment is from there.
Thanks,
I hope this was helpful. One thing I have learned is time is so valuable! I want my family and friends to know everyday all day long how much I love them!

prayingalot
Posts: 3
Joined: Jan 2010

Hi,
I just had part of liver and tumor removed 6 weeks ago. The rest of my liver is healthy. I did not understand some of what you said about lab reports after showing something. The surgeon said to go and live my life and they would do CAT scans every 3-6 months to monitor. The oncologist said Nexavar has been used with patients who have tumors but no studies on patients who had the tumor removed. He said it might work on keeping it from coming back or killing "loose" cells. I am trying to find people who have had their tyumor removed and took Nexavar. The side effects are very discouraging. I keep thinking it is better to put this in God's hands and not take Nexavar unless the tumors return. I am not sure what to do and I am wondering how yuo are doing? Thanks for any input.

transplant 2006
Posts: 3
Joined: Dec 2009

HI, Doctors found tumor in my husband's liver april 2005 and operated on at this time success. due to hep c was given a new liver in jan 2006, clean liver and again success. approaching 3 year transplant, what we thought a was a hip problem after mri turned out to be stage 4 liver cancer on spine. we were stunned. The liver fine, but cells must have found a way out when removing tumor in 2005. My husband John 3 weeks in hospital, having numerous tests, then released with more medication, pain, etc along with all the supression meds for transplant. coming home and still in extreme pain he started radiation and upon finishing started nexavar this week. Two a day for 2wks followed by 3 a day for 1wk and then 4 a day. this being the 1st week, he is experiencing burning and extreme tiredness and sweating. changing clothing several times of day and night. upon telling the dr. of this, she informed us this is to be expected as long as there is no chest pain, fever etc. this is all we have to go on for now and with GOD's help this drug will help supress this tumor and any others that may occur. I hope someone find this info helpful and know that you are not alone. we are all here to inform & comfort ea other.....GOD BLESS

transplant 2006
Posts: 3
Joined: Dec 2009

HI, Doctors found tumor in my husband's liver april 2005 and operated on at this time success. due to hep c was given a new liver in jan 2006, clean liver and again success. approaching 3 year transplant, what we thought a was a hip problem after mri turned out to be stage 4 liver cancer on spine. we were stunned. The liver fine, but cells must have found a way out when removing tumor in 2005. My husband John 3 weeks in hospital, having numerous tests, then released with more medication, pain, etc along with all the supression meds for transplant. coming home and still in extreme pain he started radiation and upon finishing started nexavar this week. Two a day for 2wks followed by 3 a day for 1wk and then 4 a day. this being the 1st week, he is experiencing burning and extreme tiredness and sweating. changing clothing several times of day and night. upon telling the dr. of this, she informed us this is to be expected as long as there is no chest pain, fever etc. this is all we have to go on for now and with GOD's help this drug will help supress this tumor and any others that may occur. I hope someone find this info helpful and know that you are not alone.I will keep you posted on progress. we are all here to inform & comfort ea other.....GOD BLESS

jim2204
Posts: 13
Joined: Oct 2009

my medical experience is similar to Labrierie and Prayalot. I had resection surgery on 12/15/09 to removed 7.6cm tumor with good margin. My pathology is very discouraging, it indicated the tumor is poorly differentiated with nuclear grade 4 of 4, hep B grade 2 out of 4, extensive vascular invasion and finally Bridging fibrosis stage 3 out of 4. I waiting for CT scan and more lab work to decide the next treatment. My guess is the doctor most likely will put me on Nexavar. I am scare to death I am told there's 50/50 chance my cancer will return.

Labrierie, why did u say that, if it recurred you are not a transplant candidate at all? I thought as long as the tumor is below 5cm and has not spread, you can wait for transplant. was I wrong?

Once I learn more of my situation, I will post my update, I also want to hear others with similar cases to mine. we need to support each other. thanks.

labrierie
Posts: 5
Joined: Nov 2009

One of the critera items they use is tumor size and if your tumor is over 5 cm then you are no longer a transplant candidate. Also the doctors told me that if my cancer were to recur that the hepatic nerve would spread the cancer to the new transplanted liver just like it would my original one. I was told that a person can have several resections if necessary.
Sorry about the delay in communication. I will try to check back more frequently.

NumOneMom4
Posts: 6
Joined: Apr 2010

My husband was diagnosed with HCC in January 2010. He is being treated at the Medical College of Virginia in Richmond. They first suspected cancer in Oct. 09 when a small nodule showed on his ultrasound. He also has Hep C and cirrhosis, so we have been undergoing observation since March of 08. He tried the treatment for hep c but was a nonresponder. He had radiofrequency ablation treatment Jan. 22 for the 3 cm tumor they found in October. When he had his follow up MRI in March, his one tumor had become 10 to 12 tumors and involved both lobes of the liver. They initially suggested that he might be a candidate for transplant, but after the eruption of so many more tumors, that is no longer an option. He is now scheduled for a sirspheres treatment May 5. they told me that it is a very aggressive cancer, so my question is this. Why did they wait so long to do this treatment? They are also going to start him on Nexavar after this treatment. He is to begin taking it on May 24. He is very apprehensive, as he does not fully understand the seriousness of his disease. The doctors tell us very little, so I call and talk to the nurse after I get home. That way I have time to think of all the questions I want to ask. I also would like to know of people who have had the sirsphers treatment and taken the Nexavar. Is it really worth a few extra months if your quality of life is so poor that you can't do anything? Right now my husband feels great, and I wonder if this is really the path we should take.

slg
Posts: 200
Joined: Jan 2010

Hi,
Just wondering how you're doing now that you have been on Nexavar for a while. Any other side effects? Are you being tested for your Alpha Feta Protein (tumor markers)?
SLG

leanjohn
Posts: 18
Joined: Dec 2009

My Dad has primary liver cancer & been on Nexavar for about 4 weeks now and is tolerating it well. (for the moment anyway) He does have fatigue and gets an upset stomach from time to time, but overall he is doing good. He we have a CAT Scan in a 2 weeks to see if the cancer has spread or not. He also has advanced cirrohsis and surgery is not an option. We know our options are very limited and we are hoping for the best with the Nexavar. My prayers are with you and your family.

slg
Posts: 200
Joined: Jan 2010

Leajohn,
Would love to hear the outcome of your Dad's CT Scan. My husband is on Nexavar for 1 month and is tolerating it well. His scan is not until later this month but his labs are coming back every week with lower numbers each week.
Hope your Dad's scan brings good news. Keep in touch.
slg

slg
Posts: 200
Joined: Jan 2010

Just wondering how you are all tolerating the nexavar and results of any CT scans or bloodwork.
We're still waiting for my husband to have his CT scan on Feb 23rd but the blood tests are coming back with good results.
slg

ljw1121
Posts: 22
Joined: Oct 2009

I'm o Nexavar since Oct 09 and first scan stayed the same. No change in size and no new growth. Next scan is Mon. 3-22 and I'm anxious toreceive results. To any of you with these bad side effects, they will get better. My skin issues are almost completely gone and I foind a few other side effects are improving. At Least we can feel descent at times now. Keep positive!! Lisa

leanjohn
Posts: 18
Joined: Dec 2009

How did your scan go?

leanjohn
Posts: 18
Joined: Dec 2009

How did your scan go?

zack1
Posts: 11
Joined: Mar 2010

My husband has been on Nexavar for 3months now. Tolerating it well. Has diarrhea and some nausea but manageble. He has HCC and cirrhosis and needs a transplant but was denied because he has to many tumors in the liver.
We stay in pray and will add you and your husband to our prayer list. Obey Jesus and and command that mountain of PAIN, CANCER, Disease,etc., to go NOW out of your body(husband's) in the name of Jesus.Jesus said you can have what you say. Began to call your body whole, healed, well, don't stop, don't listen to your body, don't listen to doubt and fear, listen only to Jesus, listen only to his Word. This is what My husband and I are doing. We read our healing scriptures off an on throughout the day. Walk in faith because Faith is the key. God Bless you. Diana

leanjohn
Posts: 18
Joined: Dec 2009

My Dad is doing well overall. He has sever diarrhea, fatigue and seems to be out of breath a lot. I am starting to get nervous because he seems to be getting week, but on other days he is happy go lucky. What a rollercoaster! His MRI didn't show much that I am aware of. His doctor was gone the day of our appointment and his PA was hard to understand and talked way too fast. We have another appointment on 4/29/10 with the doctor and I will be requesting a copy of the MRI report. I will post when I know more.

leanjohn
Posts: 18
Joined: Dec 2009

My Dad is doing well overall. He has sever diarrhea, fatigue and seems to be out of breath a lot. I am starting to get nervous because he seems to be getting week, but on other days he is happy go lucky. What a rollercoaster! His MRI didn't show much that I am aware of. His doctor was gone the day of our appointment and his PA was hard to understand and talked way too fast. We have another appointment on 4/29/10 with the doctor and I will be requesting a copy of the MRI report. I will post when I know more.

slg
Posts: 200
Joined: Jan 2010

Hi Leejohn,
I can not access the private message. Please send again to slg72@aol.com.

Be sure to always get copies of all reports. I have a file box full of every blood test, scan and consultation reports from our Dr. I have the same problem understanding our Dr's nurse but I always ask him to repeat if I don't understand what he's saying. He's alright with that.
I will wait to hear back from you via email.
SLG

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network