Long term Nexavar users

2

Comments

  • justbrowsing
    justbrowsing Member Posts: 1

    Thank You!
    Hi Mako,

    Thanks for writing back! I told my mother about your story and she was wondering if you also had a tumor and if you had surgery to remove it or if Nexavar alone shrunk it away. She is wondering if it's possible for Nexavar to completely get rid of the nodules in her lungs. One thing I'm noticing about her is even though her liver functions are normal and her CT scan is showing no cancer in her newly regenerated liver after having half of it resected in Dec of last year, she looks to be a lot smaller in her upper body. Her lower body is fine but her neck, chest, and shoulders just look so tiny and frail. She def was not like this before. I read that this is a symptom of liver cancer but why is this happening even though based on all reports her liver is fine right now. She only has some nodules in her lungs which the doctor said are too small to affect her health much at this point anyway. Do you have any ideas? Does anyone reading this?

    Also, thanks for giving me your wife's email. I will be emailing her with some questions. It's so nice of you guys to help us!

    BTW, good luck with the move!

    Crystal

    nutrition
    hi Crystal326,

    I just joined CSN. How is your mom doing? My mom has liver cancer with mets to the lungs also. Just wondering how they're treating her lung mets. I don't understand why they're giving her Nexavar if they resected her liver cancer.

    By the way, did you get the nutrition information from MAKO? If so, kindly share.

    thank you so much and blessings to you and your mom.
  • greene
    greene Member Posts: 11
    nexavar
    Hey Sig!

    Been on Nexavar since February 2009. So 3 1/2 years. No side effects except for lousy sleep patterns, thus I am online at 02:30 :) and tragedy of tragedies, all the ahir on my legs fell off. Go figure, they tell me that isn't a side effect?
    Anyhow in that time I have had no growth and no spread of the cancer. I have some rare type called fibromyxosarcoma of the aorta and Vena Cava.
    Be positive, hope this helps.

    Tom
  • slg
    slg Member Posts: 200
    greene said:

    nexavar
    Hey Sig!

    Been on Nexavar since February 2009. So 3 1/2 years. No side effects except for lousy sleep patterns, thus I am online at 02:30 :) and tragedy of tragedies, all the ahir on my legs fell off. Go figure, they tell me that isn't a side effect?
    Anyhow in that time I have had no growth and no spread of the cancer. I have some rare type called fibromyxosarcoma of the aorta and Vena Cava.
    Be positive, hope this helps.

    Tom

    Thanks Greene
    We were postive right up unitl the oncologist said Hospice. My husband lost his fight on January 14, 2012. Thanks for your comments though.
  • Lolofontaine
    Lolofontaine Member Posts: 1
    Mako181 said:

    Advice
    Hi Crystal,

    Sorry I didn't get back to you sooner, we are in the process of moving so I have not been on the computer much.

    I am sorry to hear about your mother and will try to help in anyway that I can. I have taken the full dose of 4 Nexavar pills a day since June 2008 when I was diagnosed with terminal liver cancer. I was declared cancer free in July 2010, but still take the Nexavar due to having HepC. The doctor was concerned that the cancer may redevelop due to the HepC so has kept me on the Nexavar even though I no longer have any tumors. My tumor marker dropped from 55,000 to 104 and has remained low since 7/10. I would like to tell you about the nutrition but my wife really handles all of that. I know it is easy to use and I use it three times a day. You can e-mail her at lvwalker9@aol.com and I know she would be happy to answer any questions you have.

    Take care, and please feel free to write if you have any questions for me.

    Mako

    Hello mako thank you for your post, you really give me hope,

    I really would like to know about the nutrition that your wife had you on..if you can help please, my husband has the same problem 

  • vrgn_dmngz
    vrgn_dmngz Member Posts: 1
    Mom diagnosed with stage 4 liver cancer

    My mother was diagnosed with stage 4 liver cancer, she has been on nexavar for 8 days now is having nausea even though she has a patch to help with it. I want to know about your nutrition since she is not having an appetite she hardly eats, she says she feels like air in her esaphogus, don't know how to help. Plse I need info. Thank u in advance.

     

  • Positiveme
    Positiveme Member Posts: 10
    NEXAVAR

    My father also was diagnosed as HCC 3rd stage on August 2014. He did operation and the result are great. On April 2015, we found out that it reoccur and met to lung. The doctor said it went on the bloodstream as liver is the organ that has a lot of blood vassels. For now, he is taking nexavar for one month now with no sign of growing tumor in lung. 

    Side effect: Feeling heat in the face immediately after taking it, High blood pressure - must measure before and after taking . If too high, we will go and visit doctor,  Diahria sometimes, small rashes in his arm, fatigue.. Nothing is so significant yet. He still has energy andlive life as per normal.

    Nutrition : He changed his diet completely by not taking all meats except fish occasionally and more on vegatables / soy protien. as he can take less food , we give him  more fruit juice- carrot, pineapple, apple mixed with celery which is easier to swallow . Also, we give supplement Lingzhi Mushroom and enzyme from the pineapple. He is taking water with Lime- alkaline water at least 8 glasses a day. And multivitamin supplement.  

  • posty90
    posty90 Member Posts: 2
    How to control side effects

    My sister is taking Nexavar for last 3 months. She has sudden vomitting, rashes on feet and pain in the tummy and occasional diarrhea.

    How to control voimitting?

    How to control rashes in the feet?

    How to control diarrhea??

     

    posty90

  • mperez02
    mperez02 Member Posts: 1
    Nexavar

    For those on it or who have taken it: I know it's a daily pill but do you take it in terms of rounds or do you take it for weeks/months at a time until told otherwise?

    Thanks!

  • Kath5019
    Kath5019 Member Posts: 2
    Nexavar

    Is the Nexavar for you? If yes, have you started to take it?

    I started a few weeks ago at full dose (800)but had to stop for few days to heal from skin rash. Back on it and increasing dosage every week. Now at two pills (400)

     

  • lynnbis
    lynnbis Member Posts: 1
    nexavar and milk thistle

    my husband started the drug nexavar 800mg a day, I was wondering if the milk thistle would help, we only had one opinion not sure if we should have another opinion

     

  • jbon
    jbon Member Posts: 1
    Does this med come in an Injection?

    Can this med (Nexavar) be injected?  I am inquirig on behalf of my mother who is now bed ridden & in a home.  She refuses to swallow pills.  The doctor also said that Chemo would not be an option because she is not mobile & shows signs of dementia.  She is 83.  Please advice if you think this is worth it as she has mild conjestive heart failure, diabetes & other areas of cancer as well.  Likely colon.

  • LIGHTCRUISER
    LIGHTCRUISER Member Posts: 1
    edited January 2017 #33
    ONE YEAR INTO THE JOURNEY

    I was diagnosised with HCC last December 2015, and have no other liver problems,  All of my liver test are norman, and have never had chirosis or Hepititis. The Drs said it was rare for this to happen.  Oh well it did,  had three tumors that showed up on a Scan that was a followup to a bladder problem.  Tumor board agreed due to my age, ( over 65) that they would do an ablation to two of the smaller tumors and then do a Y-90 TACE on the largest one.  Follow up after three months, showed no new tumors and also shrinkage of orginal sites.  Latest CAT scan ( after 6 months from TACE) now shows some small spots, -2mm, but about 10 spread out.  Angio mapping showed that the left lobe is ok, and right has about 5 ,  So will redo the TACE 90 next week than start Nexavar to hold the line on the residual.  The agressive appoach to introduce the drug at this stage is in my opinion a intersting move.  hopefully it will put things in prespective. Just had to post this, sort of letting it our.  we are one year into this and I feel fine, hope I can tolerate the drug in a reasonable quality of life.   thanks for reading.  

  • Mike5072
    Mike5072 Member Posts: 12
    lynnbis said:

    nexavar and milk thistle

    my husband started the drug nexavar 800mg a day, I was wondering if the milk thistle would help, we only had one opinion not sure if we should have another opinion

     

    nexavar and milk thistle

    My oncologist has recommended I take it, especially in light of the fact I stopped the nexavar due to its side effects.  I'm stiil trying to figure out if I want to take another pill.

  • Mike5072
    Mike5072 Member Posts: 12
    edited January 2017 #35

    ONE YEAR INTO THE JOURNEY

    I was diagnosised with HCC last December 2015, and have no other liver problems,  All of my liver test are norman, and have never had chirosis or Hepititis. The Drs said it was rare for this to happen.  Oh well it did,  had three tumors that showed up on a Scan that was a followup to a bladder problem.  Tumor board agreed due to my age, ( over 65) that they would do an ablation to two of the smaller tumors and then do a Y-90 TACE on the largest one.  Follow up after three months, showed no new tumors and also shrinkage of orginal sites.  Latest CAT scan ( after 6 months from TACE) now shows some small spots, -2mm, but about 10 spread out.  Angio mapping showed that the left lobe is ok, and right has about 5 ,  So will redo the TACE 90 next week than start Nexavar to hold the line on the residual.  The agressive appoach to introduce the drug at this stage is in my opinion a intersting move.  hopefully it will put things in prespective. Just had to post this, sort of letting it our.  we are one year into this and I feel fine, hope I can tolerate the drug in a reasonable quality of life.   thanks for reading.  

    The Journey

    Your case is very similiar to mine.  I was diagnosed two years ago(at 65) with five tumors which were treated by TACE (3 separate procedures), two more popped up which I had an RFA performed on, again succesful.  I was on nexavar for about a year, never reaching the recommended dosage of 800mg/d.  Most I got up to was 600.  I didnt do well with the nexavar.  I had bowel issues(diarreh-sp), muscle cramping in my forearms and hands, extreme fatigue, general maliaise, thrush and was mentally impaired.  After a year I said the hell with it, my quality of life was more important.  Other folks, from what I have read, do very well on it.

    I now look on my cancer as a whack-a-mole game.  Every few months the cancer cells in my liver group together forming a tumor large enough to be seen, accompanied by a rise in my tumor marker level.  I then have a TACE or RFA and start the cycle again.  My last RFA was in Oct 2016 and now my tumor marker level is going up.  I would expect I have another procedure done in Feb/March.  Hopefully it will be successful and the cycle will go on.  However, I know that sooner or later the procedures will  stop working and then a new phase of the cancer will begin.  Ask your Doc about milk thistle.

  • mnicanor
    mnicanor Member Posts: 1
    edited February 2017 #36
    Crystal 326

    Hello Crystal 326

    My story is very similar to that of your mom. I was diagnosed in May 2016 with a 5cm HCC that got resected, and I was cancer free, with decreasing numbers until this February when i was informed that my cancer had metastasized to my lungs, stage 4. I'm going to be starting Nexacar next month, and I was wondering if you have any updates. Or if anybody on this site can give me any advice. i'm 30 years old, otherwise helping. My HCC came from chronic Hep B.

    Thanks in advance.

  • Dmlittle03
    Dmlittle03 Member Posts: 1
    MrWizard said:

    Nexavar
    Hi Sig
    I have taking Nexavar now since March2010, I was diagnosed with stage4 liver cancer and Hep C,and given a year to live because it was inoperable,well guess drs. were wrong .. I am a fighter and my wife has been my rock, the only symtoms I have noticed is diareea and bruising, but my AFP count for the last 7 mos. has been between 15 and 19 , compared to 1800 plus I had in March of 2010, I will pray and lend my strength to help you thru theses trying times,
    MrWizard

    Hi Mr. Wizard Congratulations! I read your post and was inspired because my dad is in the same positio--given 1-2 years and he also had hep c. I just wanted to know if you made any modifications to your diet/exercise regimen?

  • sage100
    sage100 Member Posts: 2

    ONE YEAR INTO THE JOURNEY

    I was diagnosised with HCC last December 2015, and have no other liver problems,  All of my liver test are norman, and have never had chirosis or Hepititis. The Drs said it was rare for this to happen.  Oh well it did,  had three tumors that showed up on a Scan that was a followup to a bladder problem.  Tumor board agreed due to my age, ( over 65) that they would do an ablation to two of the smaller tumors and then do a Y-90 TACE on the largest one.  Follow up after three months, showed no new tumors and also shrinkage of orginal sites.  Latest CAT scan ( after 6 months from TACE) now shows some small spots, -2mm, but about 10 spread out.  Angio mapping showed that the left lobe is ok, and right has about 5 ,  So will redo the TACE 90 next week than start Nexavar to hold the line on the residual.  The agressive appoach to introduce the drug at this stage is in my opinion a intersting move.  hopefully it will put things in prespective. Just had to post this, sort of letting it our.  we are one year into this and I feel fine, hope I can tolerate the drug in a reasonable quality of life.   thanks for reading.  

    Hcc

    The same thing happened to me. But I got a transplant and my HCC came back

  • Mike5072
    Mike5072 Member Posts: 12
    sage100 said:

    Hcc

    The same thing happened to me. But I got a transplant and my HCC came back

    Docs told me resection as not

    Docs told me resection as not a possibility for me but did mention transplant. After I looked at transplant numbers, quality of,life etc. I said no to that.  I now have rising AFP levels and am on an Opdivo chemo regime. Jurynis still out on his treatment.  

  • Al Martin
    Al Martin Member Posts: 3
    I beagn Nexavar some months

    I beagn Nexavar some months ago and was prescribed 800mg a day. After a few days I broke out in what seemd like blisters in my nose, in my ears, and in the corners of my mouth. My scalp was also very sore and sensitive to the touch. I stopped taking till all that healed and resumed at 200, and then 400mg a day, So far so good.

  • Al Martin
    Al Martin Member Posts: 3
    Kath5019 said:

    Nexavar

    Is the Nexavar for you? If yes, have you started to take it?

    I started a few weeks ago at full dose (800)but had to stop for few days to heal from skin rash. Back on it and increasing dosage every week. Now at two pills (400)

     

    I had a similar eaction to it

    I had a similar eaction to it at 800mg. Broke out in what seemed like rash/ blisters. I to stopped it to heal and am now at 400mg. So far no blisters or rash.