HCC

Hi,

My father 64 has been diagonsed with non resectable hcc and is taking nexavar 800mg daily,he has been feeling tired and not eating very well, also he feels soreness in the mouth and having a subdued speech/voice problem and skin peeling from hands and feet.

I would like to know if these are associated symptoms of nexavar and if there is anything we can do for relief from them.

Also is there any other kind of diet/alternate medicine we can try.

If there is anyone having the same course of treatment pl reply, it may be just beneficail to compare notes and provide any valuable info to each other.

 

pcs03,

I have neen on Nexavar for about 7 months.  The side effects you mention are common.  Bayer runs a website called REACH which offers valuable advice for dealing with these and other side effects of the medication.  Just Google REACH and you should be able to find it easily.  Fort the mouth soreness, don't eat spicy foods, use toothpaste for sensitive teeth, etc.  For the Hand and Foot Synrome use lotion, get pedicures, and use callous removal creams when needed.  The REACH website tells you all about this.  For me the bottom line is that this medication may help slow the growth of the cancer and for a few people has actually contributed to tumors shrinking and even dissappering.  So I think living with the side effects is well worth it.  Good luck!

Andy   

Hi - my husband was recently diagnosed with HCC.   He started Nexar two weeks ago.  His appetite was small for a week but has come back with vengence!   His voice comes and goes.   Udderly smoot cream (can be bought at Walmart) is a great help for the dry hands and feet.   If he is tired make sure he doesn't sleep alot.   OUr oncologist said for him to take a short walk or stretch for 10 minutes.   This will increase his energy level and make the tiredness pass.   This is a scary disease but keep a positive attitude! 

Good Luck and my prayers are with you and your father

 

On 3/7/2009 Buggie wrote:

Hi - my husband was recently diagnosed with HCC.   He started Nexar two weeks ago.  His appetite was small for a week but has come back with vengence!   His voice comes and goes.   Udderly smoot cream (can be bought at Walmart) is a great help for the dry hands and feet.   If he is tired make sure he doesn't sleep alot.   OUr oncologist said for him to take a short walk or stretch for 10 minutes.   This will increase his energy level and make the tiredness pass.   This is a scary disease but keep a positive attitude! 

Good Luck and my prayers are with you and your father

Hello Buggie,

Thank you so much for replying, Can i possibly share with you my experiences in the treatment  going on for my father and also understand how you are coping with the same for your husband. It will be a great support if I could share my thoughts with you during these days which have been very difficult for me, personally.My father has a nonresectable hcc with 3 tumors in the left and right lobe of his liver and cannot be given radioactive isotopes or chemoemoblization,therefore our only hope is nexavar.

Also would you have any idea if diet changes or supplements help, if so can you suggest anything.

Please advise. 

 

On 3/6/2009 AndyH wrote:

pcs03,

I have neen on Nexavar for about 7 months.  The side effects you mention are common.  Bayer runs a website called REACH which offers valuable advice for dealing with these and other side effects of the medication.  Just Google REACH and you should be able to find it easily.  Fort the mouth soreness, don't eat spicy foods, use toothpaste for sensitive teeth, etc.  For the Hand and Foot Synrome use lotion, get pedicures, and use callous removal creams when needed.  The REACH website tells you all about this.  For me the bottom line is that this medication may help slow the growth of the cancer and for a few people has actually contributed to tumors shrinking and even dissappering.  So I think living with the side effects is well worth it.  Good luck!

Andy   

Hi Andy,

Thanks for replying, your message gives me more hope and you are the first person who has given a positive response about nexavar.I have a thousand more questions to ask you as regards your life in the past seven months, any diet changes ,any thing else that might help.

 Regards

Pcs03

Pcs03,

Diet can be a problem.  Since you are supposed to take the Nexavar 2 hours after eating, then wait 1 hour before eating after you take it, it effectively prevents you from eating for 6 hours out of the day since you have to go through this 2 times a day.  So it's important to figure out a schedule for getting enought nourishment.  I take it first thing in the morning, then have breakfast after an hour, then eat a big late lunch.  Then take it again about 7pm and eat a late dinner about 8.  I lost a lot of weight at first but I think that's more due to the other chemo I was on thant the Nexavar.

Also watch out for diahrea.  This can get pretty bad.  If it's persistent it can also make getting enough nourishment difficult.  My oncologist prescribed Lomotil for this which works fairly well.

Andy

Hi - I know this disease is scary.  It is magnified for you since you are so far from your Dad.  My world was turned upside down on 12/31/08 at 2:15pm when the doctor gave us the news.  The  month of January was blur - seemed like all I did was cry.  February I finally felt like I had a grip on myself.  I had to for my husband's sake.   He is handling the Nexavar well.   He is more tired than usually and I can see he is aging - probably from worry and stress more than anything else.   I still have moments I just cry but usually when I am by myself.  I felt it important to be optomistic around him.   We use a humor to get through the bad moments.  All I can say is be there for your Dad - say things now!   I find myself appreciating life a whole lot more an telling my husband things I probably wouldn't have found time for in the past.   I am hoping to get many years out of him!   Be positive and supportive to him.   If you want to email me directly you may

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

Lisa

Hi my husband has been diagnosed with HCC also. We were at the oncologist yesterday. He has given him 3-6 months. He feels going on Nexavar may give him an extra month or two. I feel like I am living a bad dream and this cannot be happening.  The Dr. feels right now that he will need pallative care in the future. My husband is not sure if he should take the Nexavar and go through all the side effects if it is going to give him and month or two more in pallative care. Do you have any thoughts on this. Thanks

hi from palo alto,ca. my dr. at stanford cancer center had considered nexavar  to treat my tumors. i must have received three different packages fom the drug co. covering all aspects of the drug .i would call your drs. nurse and ask to have these information packegs sent to you. the drug can have serious side effects,only extended ones life by 4 months at best. if you father is a canidate for a treatment they performed on me on march 5-09 it is threaspears infusion. today marks two weeks since the infusion and i have no side effects at all. in 6 weeks i will have another mri to see how the tumor has been wiped out. which by the it will be gone, medicare covers the cost of the entire procedure. there are many centers around the country that does this treatment .google threaspears cancer treatment ,and you can read more on this incredible treatment.millions of micrisopic glass beads embeded with y-90 radiation ,which was infused in my femoral arterie where the beads go and lodge only in the tumors and kills the cancer in that area only.no hair loss and so far at two weeks not one side effect. i hope i have assisted you in some way. you have good day,camus.

 

On 3/6/2009 pcs03 wrote:

Hi,

My father 64 has been diagonsed with non resectable hcc and is taking nexavar 800mg daily,he has been feeling tired and not eating very well, also he feels soreness in the mouth and having a subdued speech/voice problem and skin peeling from hands and feet.

I would like to know if these are associated symptoms of nexavar and if there is anything we can do for relief from them.

Also is there any other kind of diet/alternate medicine we can try.

If there is anyone having the same course of treatment pl reply, it may be just beneficail to compare notes and provide any valuable info to each other.

 

My husband also has HCC.  We found out May 2007.  He was on Nexavar about 3 months and after an automobile wreck it quit working.  We were told he only had about 3 months to live.  I asked them to send us to M D Anderson in Houston Tx and he has been on a clinical trial for 16 months now.  He is on Avistin (Chemo drug) and Tresavar (a pill every day)  He is doing great, with no side effects like he had on the Nexavar.  I just wish we had went to Houston when we first found out he had HCC.

Also I would like to know what other people's AFP levels are.  I just want to compare some.

Thanks,

Deb