stacie
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Serap,
We are so glad you have found us. We haven’t had much information from China. We will be very interested to hear how your Dr’s there work with cholangiocarcinoma. Please keep us informed.
Thanks,
StaciePeter,
You are fantastic! Keep at it. I hope you will be able to go to Germany. Someone has got to give it a try.
Stacie
Allison,
We are so sorry to hear of the loss of your husband. I think your decision is wonderful to support the facility that cared for him.
It is our intent that the Cholangiocarcinoma Foundation be an international organization. That it provide help and assistance to cholangio patients no matter where they reside.
As soon as the website is ready, all the information for giving will be posted.
Thanks so much,
Stacie
John,
I can’t tell you any good statistics, wish that I could. Your hope lies in making sure that you make enough life changes to stop the cancer from coming back. Diet, would be #1. I would suggest you work with a naturopath to help you change your diet in to one that is not conducive to cancer growth. It is worth eating a little differently than you are used to, to be able to spend the rest of your life with your children and grand children.
If you do some research you will find that there are many things that they know affect the growth of cancer. Attitude – if you do not have a positive optomistic attitude, start working with someone and make the proper adjustments.
Exercise, you must exercise. It is a statistically proven fact that those patients who regularly exercise have a much better outcome.
These are just a few suggestions. I think this cancer warrants a complete life change because the statistics at which it comes back are staggering.
Eliminating any unhealthy things from your lifestyle will give you freedom from this disease for an infinitely longer time than living your life exactly the same way as you did before your surgery.
Ofcourse this is my opinion, I just feel very strongly about the power of nutrition in healing and preventing – I’m sure that came through (haha).
Over and above all of this, any success with cholangio is cause for celebration! Congratulations on being cancer free – we could not be happier for you.
Richard,
Thanks for the update on Dawn. I think your change in direction is a good one. You want them all looking at the same things together and discussing Dawn’s treatment – with all of the possibilities laid on the table.
Please keep us updated as you go.
Stacie
Mark’s (my Mark) cancer was also in his liver and not the bile duct, we had to have a biopsy to be sure.
Stacie
Andrew,
Be sure to check this site fullly about your chemo options. I would press your oncologist to use a chemo cocktail of some kind as that seems to work the best in patients. Also, try to get Avastin in the mix as well.
Stacie
Wow Geoff,
If anyone is going to beat this cancer naturally it’s you.
I meant that the Gerson Institute says that you need a very specific kind of fruit press to get the juice and she doesn’t think you need that particular (very expensive) kind of juicer.
Mark does drink the carrot apple juice every day, all day. Besides the specific juices he is drinking here are some of the basic guidelines she has given him.
Anything he eats needs to be organic.
Here are the absolute NO’s:
No white flour
No canned or processed vegetables or fruits
No milk, cheese or ice cream
No red meat (beef, pork, veal)
No fried foods and nothing with partially hydrogenated oil (NO margarine)
No sugar or sugar substitutes of any kind
No carbonated drinks of any kind, no caffeine (coffee/tea), no sweetened drinksHere are the things he can eat:
Brown rice, wheat, oats, millet, corn, barley, kasha, amaranth, quinoa, organic breads
All vegetables, raw or freshly cooked
Organic whole fruits with peels on (meaning no jams or such)
He can have organic, vegetarian eggs, raw milk (whole, unpasteurized milk) or Rice Milk – organic yogurt is alright
He can eat organic chicken or fish
He can have organic butter, organic coconut oil (we love this)
He also needs to drink filtered spring water, he should not drink tap water or distilled water
No soy because in the U.S. it is a GMO (genetically modified) product, I don’t think it is a problem in the UKNow, this being said, Mark is doing this diet in a way that is comfortable for him.
He is also taking various things from home essiac tea, pancreatin, absorbaid, bromelain +quercitin, super greens, L-Lysine, NADH, Graviola, Acidophilus, Flaxseed oil, thyroid.
This is in addition to what she is pumping into his body everyday up at the clinic.
I hope this helps, let me know if you have anymore questions.
Stacie
Well, really they can only consider you a candidate for surgery if you don’t have metastatic disease. Knowing that it has spread at all means that it is in places that they can’t see or guess, so while surgery can debulk what is there, it can’t get all the seeds that can’t be seen.
Ideally, they would debulk you in the beginning and you would take your chances that the chemo would work and kill the rest, but surgery then means that you can’t use some of the targeted therapies, like Avastin until you heal. We feel like this really helped boost Mark’s chemo results.
It’s just all so intertwined that it is difficult to figure out. At this point, we are hoping that the diet will starve the cancer and the other agents the naturopath is using will shrink the rest. Our naturopath is very interested in having Mark do a procedure in Germany that uses hyperthermia to kind of melt away the solid tumors, but we will know where we stand and if he will be able to do that in another week or so, when we see the results from his scan.
Please feel free to ask anything, and don’t be afraid just keep looking and asking and pressing forward – being afraid tends to make us check out and he really needs everyone around him checked in and ready to do whatever is necessary.
At least for me I’ve found that the more I search, the more questions I ask, etc. the more in control (or perhaps hopeful) of the situation I feel, this isn’t even considering the way Mark and Marianne feel – this is strictly speaking from my role as a sister.
The irony is that cholangio is something over which we have no control and I think this is one of the hardest parts of having this cancer for the patient – no control.
That’s a tough question. I’m not sure what the right answer is. I think there are only a few options. One, is that you do the chemo and it shrinks your tumors or metastatic cancer enough that you become a candidate for surgery (this is rare). The other is that chemo it is used to give you more time while you search out other alternatives.
Our oncologist has always been very clear with us that modern medicine, chemo – can not cure this cancer. Now, that being said – there are a lot of new drugs out there and a lot of new ones coming on line all the time.
Personally, I think chemo can work to some degree, but it’s got to be in conjunction with other targeted drugs as well i.e. Avastin, Tarceva, Erbitux – these give the chemo a boost and with cholangio you need all the boost you can get.
I also do not believe that you can beat this with modern medicine alone. I think cholangio calls for a total life change. Complete change in diet, change in thought process, change in almost every thing that affects your body.
You can kill the cancer with chemo, but in the end you have to stop doing the things that caused the cancer in the first place. Unfortunately, we don’t know exactly what those things are – but we do know (from many studies) that sugar makes cancer grow – the obvious answer is not to eat anything with sugar in it. We also know that people who exercise have a better outcome – so you’ve got to exercise. We know that many holistic things greatly benefit those who have cancer, so you’ve got to seek out some of these things and begin applying them.
This is a very complicated cancer and because there aren’t very many studies we sometimes feel like we are stabbing in the dark, hoping to come up with the right combination that will make this beast go away.
But, we just keep stabbing away and one day someone on this website is going to come up with the right answer or find someone who has the right answer – won’t that be a great day!
Yes, they are doing sort of a modified Gerson diet, his naturopath does not believe that you need the specific juice press (she and others of her profession believe this to be a political thing? I don’t know) The diet is mostly the same as you would find in any of the books, although I know that Mark is following it “the best he can” He is doing all the rest of it, but some of the herbs and other things she is doing intravenously are a little different than the Gerson therapy suggests.
Marianne helps him with things in the morning before he goes to the clinic and at night when he gets home and the rest of the family fill in where we are needed.
Stacie
Mark is on the Gerson diet now – it is a slightly altered diet as recommended by his naturopath and takes Immpower as well as several other things as recommended by her.
He is spending 5 days a week a the clinic where he receives a lot of other things intravenously. But last week has been one of his best weeks yet. We will know more when he has his scan after Thanksgiving.
Stacie
Mels,
Mark’s was on the same regimen as your brother for several months with good results as well. However, his neuropathy was starting to not go away between treatments, then the chemo stopped working anyway, so we stopped the treatments, the neuropathy continued and got a little worse. Our oncologist told us that is would gradually dissipate with time and then it might/might not go away all together.
Mark told me on Saturday that his neuorpathy has completely gone away – he has been working with a naturopath as well.
I think this is your brother’s first shot at chemo? If it is then he still has many options to look at. You will probably want to go into the patient profiles and find out what other patients are using and then take those options in to his oncologist and find out what direction he wants to go. You still have good options available, in 5FU or Xeloda, both have significantly less side effect than oxaliplatin, he will probably find them much easier to tolerate – he can keep the avastin as well as the body does not build up a resistance to it.
Let us know what you decide.
Stacie
Tabtabs,
Thank you so much. We would be delighted to have your help. We have already started receiving funds and this has been very exciting for all of us. Rick is going to be setting up a separate (yet connected) site that will have all of the foundation information: board members, the mission statement, upcoming events, how you can donate, etc.
I’ve put you on my “special” list. Once things start rolling out we will contact you for your help.
Again, thanks so much.
Stacie
