Long term Nexavar users

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

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 

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.  

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!

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

 

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.  

LIGHTCRUISER said:

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.

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 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.  

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.