Topic: Confused

I have spent two months reading these posts and the posts of many other cancer  forums.
I have spent two months researching diets,  alternative remedies, new chemo intervention etc.
Two months and 11 days ago CANCER was just something other peoples families were dealing with, chemo always saved the day, and I really didn't think I knew anyone who had it.
On November 13th 2006 my dad was having a procedure (ERCP) to remove some gallstones that were causing a blockage and making him jaundice and rather ill feeling. My mother and sat in the waiting room holding hands and waiting for the Dr. to come out and tell us everything went well and we could see my dad very soon.
He did eventually come out but what he said to us changed our lives forever.
In a very COLD and IMPERSONAL way we were told that my dad had a rare cancer called Cholangiocarcinoma-Klatskin tumor. stage 3bf 4 and that he had about 12 months to live. I remember him saying "here, let me draw you a diagram"
I remember my mom having to tell him and i remember his face.
My big strong daddy 6'4 230lbs was now 180lbs very jaudice and scared to death.
Two more Drs came in to explain how chemo and radiation were relatively ineffective with this type of cancer and that he would slowly deteriorate and then one day he just wouldn't get out of bed.

My mother, myself and my boyfriend decided we were not going to let this desease just take him so off to chaoters we went and then endless hours online researching and learning all about this Klatskins!

We met with a wonderful oncologist who actually had personality and displayed compassion (very impressive) and he told us that there has been some success with GFLIP.  My mother and I were very opposed to him having chemo as we have read so many horror stories however, we knew that this was a descision that was his and his alone.
My dad agreed to go along with our crazy diets and foreign tea's and even our endless chatter about miracle cures we had read about online. (what a trooper)
Chinese Drs. homopathic drs, we dragged him to them all
No meat no dairy no sweets nothing processed and 2 litres of Pau d'arco tea everyday. Then vitamins and vegan shakes and then we double his pau d'arco intake by adding capsules.

YESTERDAY WAS THE HAPPIEST DAY WE'VE HAD SINCE THIS WHOLE ORDEAL BEGAN.
My dad was scheduled to have a portacath inserted Wednesday Jan.24th however his oncologist has CANCELLED HIS CHEMO!!!!
The radiologist couldn't see his tumor. he could clearly see the metal stents but nothing else. Also his blood work was amazing!!!!!!!!!!!!!!!!
My dads tumor measured 3.5 cm and now it can't be seen.

The oncologist was shocked and wants to see him in three months.
We're confused and want  an MRI to make sure what he said was true.

Over all though yesterday was shocking. His oncologist was suprised he was still alive never mind that he seems to be healing himself!

The Oncologist said what ever we are doing we are doing it right!!!

Oh and my dads diabetes is gone  his last blood reading was 5.1

DIET AND NUTRITION REALLY CAN HELP

God I hope these results continue to improve I can't imagine life for our family with out him HE IS THE BEST!

BTW, ever notice that once cancer is in your life you find out its always been there, it's all around you and that people you know, have just suffered silently. I hate cancer!

Michelle
TheMacks!

Re: Confused

What an awesome post!!
I am really happy for you all, that is wonderful news!! YAY!!

Re: Confused

Michelle

FANTASTIC!! I am so pleased for your dad and your family.  My Dad has also radically changed his diet, sometimes we worry that it is too restrictive and bland - that he is missing out on some of the foods that he used to love..

Would you mind elaborating a bit on the specifics of the diet?  I am sure that diet it critical in the fight against cancer and I have heard similar stories to your Dads.

I can empathise with your thoughts on the whole cancer ordeal, until you've experienced it you cannot begin to imagine the devastation it can cause.

Re: Confused

Absolutely inspiring!
It takes such belief and discipline to stick to the diet and lifestyle changes.  Kudos to you, your Mom, and especially your Dad! 
And don't discount the positive effects of the love and belief you all share.

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Michelle,
    That is wonderful news. Do be sure to have the MRI though because my husband also has a klatskin that after treatment could not be seen on a cat scan. It could still be seen on the MRI though. Please do elaborate on the diet your Dad is following. We have been following a strict diet too, but my husband's liver enzymes are rather high. I think it is from all the radiation he had. If your Dad's tumor went away with nothing but diet that is truly remarkable. Please keep us all informed of his future results and any suggestiond about diet. You are so right though about being more aware of all the cancer sufferers around us. Since my husband's diagnosis it seems we are constantly finding out about new cases every day.  Take care and best wishes for continued success!!    Mary

Re: Confused

Hello all,
Thank you so  much for your comments.

Regarding the diet:

The day my dad was FINALLY released from the hospital, we went out and bought ...
A Juicer
Rice and vegetable steamer
REVERSE OSMOSIS WATER (5 bottles to start)
All ORGANIC fruits and Veggies

We started juicing all kinds of crazy concoctions for him (like I said before, he is a trooper, some of the juice tasted really NASTY)

My mom went to see a TCM doctor and brought home three shopping bags full of herbs, or as my dad said something that looked like it had been swept up from the backyard LOL!
We boiled the herbs and made my dad this tea which he was only able to stomach for two days before it made him sick to his stomach.
Next we went to the health food store. At out local health food Store "Garlic Grove" my mother explained the situation to the owner who proceeded to tell her the story of Josip Gabre, a man from our city who beat cancer, she gave my mother his book to borrow titled "How I Beat Cancer" and explained that she worked directly with him.

We both read the book and decided my dad should be on this Taheebo/Pau d'arco Tea from Brazil. he started immediately.
The following week his diabetes was completely under control, and his bili rubin level had dropped significantly.
So at this point he was on a strict Vegan diet and the tea.
Our major problem then, was that my dad was still losing weight and that was causing him to be extremelt tired and miserable.
We read more books, visited more web site and had to make a descision as to which road to take regarding diet. This part was soooooooooooo confusing there are so many different diets and so called miracle cures it gets frustrating.
We looked at them all and found that they all had the same foundation, organic and at least 80/20 vegetarian diet.
so how do you fatten someone up on a sugar free,  dairy free, vegan diet??? It hard and its been a slow process but here's what we did...
There is an organic protein shake called "VEGAN" it has 160 calories per scoop, it contains every vitamin suppliment you could ever need as well as Omega's and next to no sugar.
Juices with banana's, strawberries, Soy milk and a little bit of STEVIA (tastes great)
Avocado is extremely fattening and full of nutrience
Potatoes, Brown Rice, Lots of UNSALTED almonds, dates, tones of greens, lots of small meals.
Suppliments:- Geraniun capsuls (helps oxidize the blood)
                    -Vitamin C, Buffered, if you can stomach it take the powder if not take
                      tablets
                   - Taheebo Tea also called Pau D'arco 1 and a half to two litres per day
                      as well as  4-6 capsules. If you can find the tinture it is said to be
                      better thats still being debated!  Our whole family is taking it and
                      are all seeing improvements in our own health.
                   - Selenium, Omega 3,6,9 and occasionally I throw some "cell food"
                      into his water (shhhhh he doesn't know that one LOL)     

Plenty of fresh air, this one has been harder to get him to do as he was way too tired before. so we bought a dog in hopes that he would walk it, so far my mom walks the dog and occasionally dad does too!

One thing that I think has also been important is "cheat days" for sanity purposes!
He's allowed to eat chicken breat (organic) about once a week.
and occasionally a bit of cheese.

Oh, we also started giving him a bit of essiac tea last week no complaints so far!

I know yesterday I had commented on his CTSCAN  but I think what is more important is his blood results.
Of the 42 blood levels tested only 1 was high (his GGT) which has come down from 708 to 172  and his Lymphs were  a bit low   EVERYTHING else was at normal levels and I don't mean normal for a man with the big C I mean NORMAL!!!!!
LAst month his blood levels were way out of wack so to me this is incredible.

I hope this post helps
I think the hardest part of the diet is wrapping your head around that fact that nutrition might be able to heal your body. We are so conditioned to believe in pharmacuticles and medical technology that anything else seemd way too hoxie!!!

God Bless

Michelle

Re: Confused

You can also find so much info online about Pau D'arco /Taheebo

Its worth reading and sheds a little hope and of coarse skepticism but that comes with all things new and unfamiliar.

Michelle

Re: Confused

Hi Michelle,
   It's been an amazing day for us too. My husband was diagnosed in June and underwent an unsuccessful resection. Of course we did about the same as you regarding diet although not quite as strict! The carrot juice , foods with only one ingredient in their label , water, water, water and no sweets, absolutely no high fructose corn syrup(it's amazing how many foods have it in them), whole grains , the works. He has also been taking maitake D-Fraction capsules, drinking green tea, although I'm going to switch to the pau d'arco and lately fish oil capsules, (he was taking cod liver oil), and flax oil. I read about a study that showed omega 3 fatty acids actually caused the apoptosis of cc cells. Any way he also under went 5 grueling weeks of IMRT radiation and Xeloda and then brachytherapy. He had a cat scan follow-up on Dec. 18 and they could not see the tumor. He had a MRI on Jan. 8 and things still were not clear(radiation causes tissue distortion). We wanted a second opinion so we went to the Univ. of Pittsburgh Medical Center on Monday- they took another cat scan because they felt they could get better results. Their tumor board met yesterday, which included transplant surgeons, radiation oncologists, etc and they could not see anything. They say they feel the tumor is gone!!! We have been hoping this was true now for weeks but this second opinion really is the clincher!! I really believe he is in remission! I have not understood why so many people are treated with chemo alone to begin with. It completely destroys your immune system. Even though he had some problems during his radiation it was mainly caused by the after math of his surgery(infection and an abcess). Once he was over all those problems he was able to handle the radiation and his chemo was very limited. He had lost 70 lbs and has gained 20 back, he is at a very healthy weight and is working out 30 minutes every day. His enzymes are still high but they will come down as the healing continues. All of his other bloodwork is excellent. Miracles do happen and I just pray that your father's results will continue to be positive along with my hubands!!I can only hope that more people are able to find something that can work for them as well as what we have found for our loved ones. There have been so many tears the past few months, not only for my husband and our family but for all of the people on this site and others I know that are fighting this battle and some that have lost their fight. Congratulations on your success. I would still have an MRI done just to make sure. They thought they could see something on my husbands but I guess they really didn't. It is very confusing sometimes!  Take care and best wishes. Mary

Re: Confused

Wow Mary that is great news I hope and pray your husband stays on a healthy coarse aswell.

When my father was diagnosed they told us that Klatskin's does not responde well to chemo and radiation they also told us that due to position and size he was unresectable. They were unable to get the plastic stents in and told us that as much as metal stents were better they would also prevent him from ever having a resection.
We did find a wonderfully optitistic oncologist who said he had had some success with GFLIP but that it would not cure him it would only possibly extend his life by a few months and improve his quality of life.

Question... when your husbands CTSCAN showed nothing what were his blood levels like?

Please do try the Pau D'arco even if his results remain positive also I strongly reccomend Reverse Osmosis Water 
I have had great success switching to this water while treating my 10 year old Autistic son. His behaviors and thought patterns changed instantly. Its amazing what something as simple as changing water and diet can do!!

Michelle

Re: Confused

Michelle,
  His liver enzymes have been all over the place to tell you the truth. I just got all of his blood test results since his diagnosis and you can chart every thing that was going on by what they read. He had an abcess that caused them to elevate and then he had radiation and chemo (Xeloda) the entire month of Sept. They were elevated, ecspecially his alkline phosphatase, the entire month. Then they went down during his month off between treatments. He then had brachytherapy in Nov and they went up again and have stayed high since. No one seems too concerned in fact the nurse in Pitts. seemed to think it was normal considering the amount of radiation he has had. It will take awhile for the tissue to heal and the alkaline phosphatase is sometimes elevated because of tissue granulation, which is the healing process. We're just continuing with everything we've been doing and not changing anything because it seems to be working! Where do you get the reverse osmosis water? We live in a rural area so I don't know if any of our health food stores will have it. I'll check.
   As far as the radiation he received, it really is cutting edge. OSU is one of the top centers for brachytherapy although they have never done too much with this type of cancer. I would say it is a very good option!! They may want to give him some chemo(gemzar) yet just to make sure. We don't really know how we feel about that yet.  I guess as long as he can eat well and maintain his quality of life we may go ahead. His immune system is obviously working very well because everyone around him has been sick and he is the ONLY one in the family to not have gotten a cold yet. It's pretty amazing! Take care!  Mary

Re: Confused

Neither of you has mentioned CA19-9 levels.  Did your Dad/Husbands blood work include this test and, if so, what was the change with those numbers.
Great to have the good news stories!  Thanks for sharing.
-Peter

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Peter,
Yes, my husband did have a Ca 19 -9 and CEA. His CEA was normal. His Ca-19 was 238 , down from well over 500 when he was diagnosed. This worried me that it was still in the 200's but at the Liver Center in Pitts. , where they treat cancer and all kinds of liver problems they said that patients with cholangitis have scores in the 200's or more. My husband received a lot of radiation so I am sure it is going to take some time yet for the healing process to be finished. He probably basically does have cholangitis or at least the same type inflammation even thogh he is feeling good and his bilirubin is normal. I do think he is going to undergo some chemo just as a precaution. I can't really believe that the cancer is "gone". We have to assume it is still "lurking" even though they can't see it and not let up for a moment. This is a never ending struggle.  Best Wishes.  Mary

Re: Confused

Hi Guys
sorry Ive taken so long to respond, just trying to figure everything out.

We looked on his blood works and there is a catagory Ca 19 however it has question marks where the level should be.

CEA is not there and we will be questioning the onc. about this

We have now been sent to another surgeon, who has scheduled my dad for another CT and Ultrasound (Wednesday morning) Then they will decide weather they think another MRI is needed.
Im hoping he does blood on Weds. too

Dad is looking great feeling good but finding it hard to put on weight.
His caloric intake is up to 3000 per day and his weight will not go up.

It had gone up at the end of Dec. beginning of Jan. but now its slowly going down, any suggestions??

researching natural weight gain is a joke, everybody wants to be skinny nobody is posting    "THE GET FAT NOW HERBAL DIET!!!"  we guarentee you'll balloon 27lbs by tuesday LOL
Anyways, the journey continues

Good night all

Michelle

Re: Confused

Hi Michelle,
  Please do keep us informed of your Dad's progress. It is very informative to hear from people with so many different scenarios, It's also very confusing at times because you really don't know which path to take. They have opted to not give my husband any chemo right now. They're going to do another MRI in 6 weeks and see how that looks. We'll just continue wioth diet and exercise etc. and hope for the best. Good luck with all of your Dad's tests. I hope they all come back with positive results!! Mary