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Long term Nexavar users

slg
Posts: 200
Joined: Jan 2010

Just wondering how many Nexavar users there are out there who have been on it over a year+! And what side effects are bothering you now?

Soosoo
Posts: 27
Joined: Jan 2011

Hi Slg

How is your husbands hiccups?
How is his general health now?

Regards
Soosoo

Mako181
Posts: 13
Joined: Jun 2010

I began taking Nexavar at the full dose, almost three years ago. I have had very few side effects in that time and was declared cancer free in July 10, 2010, two years after a terminal diagnosis.

I am thankful my wife and I made the decision we made to faithfully use patented nutrition to return my health. I am forever grateful that people took their time to share this nutrition with me and forever grateful that my wife listened to what they were saying and encouraged me to try the nutrition and most of all, Never Give Up!!

Soosoo
Posts: 27
Joined: Jan 2011

Hello Mako181

What type of diagnosis did the doctors give you at the begining of your diagnosis?
Was your cancer spread anywhere?
How long did it take for Nexavar to show actual results?

My mom has satrted taking it three weeks ago and it is making her extremely tired.

she does not have an apetite for anything.What kind of nutritional regimen did you follow?

Regards

slg
Posts: 200
Joined: Jan 2010

Thank you Soosoo for asking about my husband. he is still having the hiccups and excessive burping. Dr. prescribed one drug but the side effects were not good so we are trying another one. So far that hasn't helped either.

Thank you Mako 181. I know too well about you and also LJW1121 continuing to take the Nexavar. Just wondering if you are having any side effects at all. You two New Orleans are keeping my husband motivated to stay on it until he gets that transplant

Thanks for responding. Glad to hear you are doing so well. My best to L.

SLG

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

It's great to hear the good news of your being cancer free after being terminal. It's also wonderful for you that you have had few side effects. On many of the other discussion boards about Nexavar, the side effects were downright scary. My husband's surgeon has recommended Nexavar and I was very anxious about this drug. Although the Oncologist wants to try Cisplatin and Gemzar. We will go this week to go over the choices and make a decision. Again I am happy to hear your good news.

Crystal326
Posts: 2
Joined: May 2011

Hi Mako,

My mom was diagnosed with HCC last Nov and had her liver resected. We all thought we were really lucky and it was over because all her tests after that were positive, tumor marker kept decreasing and liver function kept improving. However, her tumor marker started rising in March and her latest CT scan confirmed metastatic nodules in her lungs, very small right now, not even 1 cm. Anyhow, she just started on Nexavar last week and so far her only symptom has been dry mouth. When you say full dose, you mean 4 pills a day? And how are you doing now? are you still cancer free? Your story is really encouraging and gives me a lot of hope. What is the patented nutrition that you speak of? I'd love to learn about it for my mom! I'd really appreciate it if you can share your advice!

Thanks!
Crystal

Mako181
Posts: 13
Joined: Jun 2010

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

Crystal326
Posts: 2
Joined: May 2011

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

deline
Posts: 6
Joined: Mar 2012

oops i meant to send this to crystal

deline
Posts: 6
Joined: Mar 2012

oops i meant to send this to crystal

justbrowsing
Posts: 1
Joined: Jun 2012

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.

deline
Posts: 6
Joined: Mar 2012

Hi Mako181,

My mom has exactly the same as you, hep c and tumor currently at about 29,000. She started taking nexavar about a week ago and has been eating healthy but I am very curious to know about your nutrition plan. I read that your wife handles that part but did not want to just email her without asking you first.
CONGRATULATIONS ON YOUR STATUS! THAT IS SO GREAT!!

thanks,
Deline

deline
Posts: 6
Joined: Mar 2012

Hi Crystal,
I was wondering if you got found out about the nutrition from mako. and if could you possibly share the information. My mom has hep c and liver cancer as well.

Thank you
deline

deline
Posts: 6
Joined: Mar 2012

Hi Crystal,
I was wondering if you got found out about the nutrition from mako. and if could you possibly share the information. My mom has hep c and liver cancer as well.

Thank you
deline

MrWizard's picture
MrWizard
Posts: 3
Joined: Jul 2011

Hi Mako181
I was diagnosed in March 2010 with inoperabe stage4 Liver cancer and Hep C , I have been taking nexavar for a year and a half now, Dr. is happy with my results on howwell I am doing, my AFP count was over 1800 when diagnosedd , now it is between 15 and 19 , they gave me a year to live in March 2010, I am a very positive minded person and will not give up, Can you help me as far as the type of diet you were on, I can't walk alot because my spleen is enlarged and I get bad cramps in my legs and feet, I want to move back up to New York to be with children and grand children but your story gave me renewed strength. Thank You for sharing.
MrWizard

deline
Posts: 6
Joined: Mar 2012

The doctors are not possitive. they started her on nexavar. She is very positive though. did you find out anything about the diet?
Thank you

deline

MrsTigger
Posts: 14
Joined: Mar 2012

Hello my name is Shay, my dad has hcc. We found out last April. He is on nexavar but for some reason if he takes the 4 he gets real sick. Any suggestions on what we can do? I help my mom take care of my dad since they both are in there 70s. I know he keeps losing more and more weight. This is the first time for us with this and not sure where to go for help and answers. So anything that can help me help him get better would be appreciated! Congrats on you being cancer free hope you still are and hope all is going good for u still!

Shay

Dagwud
Posts: 3
Joined: Apr 2012

I would like to learn more about patented nutrition?

I was diagnosed in August of 2011 with Intrahepatic cholangiocarcinoma. At first it was a single large tumor 4cm x 12 cm. Doctors originally hoped they could shrink it and do a liver resection. Since then smaller tumors have appeared in the other half of the liver. Because of this my oncologist tells me I am not a candidate for a transplant or liver resection.

My first round of IV chemo treatments had no effect.

Second round they did three chemoembolizations which helped shrink the tumors some.

Recently finished my third round of chemo and had new CT scan which shows large tumor shrank a little more but smaller tumors had grown.

I will soon be starting on Nexavar.

pattibay
Posts: 1
Joined: Apr 2011

ive taken nexavar for two years in various doses because of side effects.[bleeding ,low blood counts].ive recently been diagnosed with heart murmer ;aortic stenosis .my cardial health was good prior to diagnoses of hepatacellular liver cancer which also spread to bones. also taking infusion of zomata once amonth. no symptoms of cardiac distress other than stethescope diagnoses

denicek
Posts: 1
Joined: Jun 2011

Hi:
My husband has liver cancer which is spreading to his heart vessel. He's been on Nexavar since 2007 and his only side effect is diarrhea and loss of weight. About 3 months ago, his scans showed the tumor growing, doctors felt the Nexavar was no longer effective and suggested adding Tarceva. Tarceva caused major skin blisters, rashes and open sores, he's been laid up in bed for the past month while the legs heal. Doctor stopped all chemo to give his body time to heal. In the past 5 weeks, he's gained weight and looks well. We also started giving noni juice (Half a wine glass in the morning and evening, religiously and added Milk Thistle pills along with TLC and lots of prayers). Up till now, his blood tests were escalating.

Friday his blood results showed amazing drops and we're amazed - doctor wasn't as impressed, so not sure. I firmly believe the noni juice helped and wished i had started this earlier. I'm waiting for the AFP results to see more info.

Doctor resumed his Nexavar today and will be seen in a month. He believes in the Nexavar and i think that's important, the mind does wonderful things in the healing process.

I also think taking time off to cleanse the body of the toxins (no chemo) helped him feel better and regain weight and in 3.5 years a regular BM! He gained 15-20 pounds instead of the skin and bones he was turning into.

We're hoping next months blood results continue dropping and showing improvement. Bless all of you and what you're going through, it's not easy. Have faith.

MrWizard's picture
MrWizard
Posts: 3
Joined: Jul 2011

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

greene
Posts: 11
Joined: Sep 2012

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
Posts: 200
Joined: Jan 2010

We were postive right up unitl the oncologist said Hospice. My husband lost his fight on January 14, 2012. Thanks for your comments though.

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