Sutent Patient

Hi i am an 18  year old suffering from Fibrolamellar HCC. It is a very rare cancer which only about 2 cases every 10yrs comes along in Australia. I have an approx 20cm tumor in my liver and it's spread to my pancreas. the problem is not in my liver because they are planning to transplant or resect(if the tumor shrinks abit) the liver but the problem is the pancreas. Due to the highly spreadable tumor they can't touch it till they can contain it so in March 08 i was put on Sutent 50mg which isn't used for liver cancer and pancreatic cancer but has had results on similiar organs and i'm currently on my 3rd course which the pharmaceutical company is finally paying for which cost us $16000 for 2 months!

So far its been good, the CT scans at 3 months showed we had stopped it growing which is the best we could have hoped for so far. I have had some side effects grey hair (i hav died it too with an amonia free hair dye and it was permanent you can get them from most grocery stores but we found one from a health food shop), skin rashes after showering, car sick feeling, sore feet, tired but otherwise i've been okay.

 I want to recommend naturpaths to everyone it has helped me alot. There are studies linking foods to cancer as my doctor told me food is a cause in breast cancer and in case you don't know SUGAR feeds the cancer cells. I would recommend to see a naturapath as it is worth it and even my doctor has called me an imposter for how good I am responding to all this.

Switch to all organic foods (it is really healthy for you and peace of mind when you find out how other foods are preserved and made), We were also told by our oncologist to cut out antioxidants and vitamin c as it strips the Sutent out of your body, i'm not eating dairy, red meat (as it is harder for my digestive system to process and that is where the problems are), fish oil is good for you also, i'm also only drinking spring water as my liver can't process the minerals in normal water even filtered water, lots of veges but no potatoes and mushrooms. Trust me it is a huge disruption and takes awhile to get use to especially when you crave the fast foods but it does get better.

 Positive thinking is a must and doing meditation is really good at relaxing the body and mind. This might sound alot but compared to another patient with the same rare cancer on the same treatment, they werent coping as well.

Zoe

I have a 20 yr old daughter with FHC. We have been fighting since Jan1

2008 thats when we found out. She has been taking Nexavar with is a sister to Stutent. Her liver tumor was at 11cm now at 14. She has also had 3 strokes from vegetation on her heart. Dec 26, June 6,and now the last one on June 29th left her with no hearing or speech, well speech is messed up......... 

This is really hard on her and I would take any advice I could get

Do you have pain in your liver area?

What do you take for pain?

Thank You,

Kellie

On 7/9/2008 kelliejo2 wrote:

I have a 20 yr old daughter with FHC. We have been fighting since Jan1

2008 thats when we found out. She has been taking Nexavar with is a sister to Stutent. Her liver tumor was at 11cm now at 14. She has also had 3 strokes from vegetation on her heart. Dec 26, June 6,and now the last one on June 29th left her with no hearing or speech, well speech is messed up......... 

This is really hard on her and I would take any advice I could get

Do you have pain in your liver area?

What do you take for pain?

Thank You,

Kellie

dear Kellie,

I'm so sorry to hear about ur daughter, please let her no my thoughts are with her. I have heard of Nexavar as being a sister to Sutent and as far as i am aware they should both be doing around the same sort of job. The sutent aims to suffocate the cancer cells causing the tumor to shrink. With me my tumor stopped growing and spreading after the first 2 courses on it which is the best we could have hoped for and i have continued on it as i have another scan in about 6 weeks time. But my doctor advises me, depending on the results of the next scan, to combine the Sutent with the Doxirubicin Injection which is an intovenous chemotherapy as he had found overseas in America studies had shown a better response with the combination. So ill prob be doing that whether that is something you guys can look into?

i dont get much pain sometimes a little bit of discomfort in my liver but iv neva taken anythin for it only ever for headaches as a side affect of the sutent and iv just taken panadol or nurofen.

 The best advice i could give is try and stay strong with positive thinking and tell yourself that you will beat it as this can do alot for your body. also i believe diet is very important as sugar feeds cancer cells. in my original message i think i outlined what i do and dont eat so it would probably be wise if you can to see a naturopath they are a big help. i dont eat garlic as i was told this specifically affects my tumors and i dont have any antioxidants or vitamin c although this is normally good for your body, while on sutent it will try and strip the chemo from ur body. fish oil tablets are also really good fro ur blood and body as my doctor had said it was a gud idea. of course do check u can do these things if u choose to.

 its also known if u do weights, it releases testosterone into ur body which helps fight cancer cells so i have been doing that as well and something else that can help which i havnt been able to use while on sutent is vitamin B17 also known as Almond Oil. If you can get an injection of it it is much more useful but u can injest it daily aswell. B17 is a cyanide that specifically targets cancer cells and here in Australia there are organisations who run programs based soley on diet, exrcise and B17 to cure cancer victims and are usually jst done by the terminally ill patients who were told by dr's they hav like 6 months to live. after they did this program thereis a 98% success rate and they are still alive. i know they injest the B17 more frequently but it is a gud back up to know about. They are called Canhelp Cancer and they are on the web im sure there are organisations similiar overseas too. 

it is important for her to know that this is just one hiccup in her long life ahead of her. i like to always think that it could be worse and at least they have a treatment for me. i take each day at a time and live it to the fullest i can. u only live once so u may as well make the best of wat u get. i only ever cried the once initially over this wen i frist found out in february but since then i haven't as i think i have better things to do and me worrying about them can't help it go away. the type of cancer we have is very rare it is only 1% of all types of cancers experienced so we are helping in the further discovery of something new which can hopefully help prevent this one day.

i hope some of this is of help to you and i wish ur daughter and urself the best of luck. feel free to contact me anytime,

Zoe xox