98 replies to this topic

[Trey]

Seems the "Budwig" program consists of (as they say on their website) "Daily coffee enemas, Hydro Colonics, Saunas, massages, and the deep liver cleanse".  Hey, just take Gleevec and you will get all the "cleansing" you can stand.  No need for shooting a double latte up the arse when you have our sharts-inducers. 

And they do not allow microwaved food.  "Put on the tin hats, boys; they're after our brain waves again". 

Back to reality, CML is a genetic mix-up that cannot be un-done by any such fantasies.  If you like having things put up the arse, be my guest.  But except for the cheap thrills, there is nothing else there.  Just sayin'

[SharaT]

I know this is you site and all but to be closed minded about something you have never done isnt right.  I believe that God made our bodies to heal itself.  I dont beleive that drugs to cover your issue will heal your problem.  I would take anything up the arse any day than stuff chemicals down my body for my organs to shut down over time.  This is personally how I feel and I believe that our dNA doesnt just flip one day and we have cancer.  We made the cancer we can undo it.  Once I get dx from md anderson and IF they say I have CmL I will keep you updated how I do naturally many blessings and try and be open minded about your body and how God desinged it.

[SharaT]

Emily thats great news and Im happy your responding so well and most of all...have a healthy baby! Blessings!

[pammartin]

Thanks Trey for the input, although I am all for eating healthy and trying to keep the system cleansed, I am skeptical when it comes to claims that state they solve a serious problem.  Yes, a good diet is important, keeping those bowels moving in the downward is necessary for good health (with or without the Gleevec, although I am convinced Sprycel is made with cement dust), and a good stress relieving massage will always be welcome, but our reality is, if we do not take our TKI's whatever they may be, the CML will eventually destroy our life.  I decided I am not going to touch the coffee enemas.......but if I were going too..., oh wait, I already said I wasn't.  <sigh>

[SharaT]

Thank you for being open minded and seeing the alternative for meds. I have seen people with cml healed. I will ask them wen I call and get more info tomorrow. Never ever hurts to try all of your options! All about doing whats best for you and your body! Blessings!

[Taylor]

Speaking as a Christian, we are no longer in Paradise but in a fallen world where our bodies have been corrupted and damaged.  Absolutely does our DNA flip out, sorry to say.  God gave us reason and doctors as well to help us while we're here.  I do though wish you the best; it's just that science is part of God's truth, it's not a lie or gimmick.  Peace be with you!

[pammartin]

Whatever method you choose, I wish you well, but I have to say, please keep a close eye on your situation, if you do have CML I am not convinced this method alone will provide you with a positive response.  I hope you have wonderful results and continue to enjoy a healthy happy life.

[SharaT]

God is the same then as now. It is a fallen world and the devil seeks to steal,kill and distroy. But no where inthe bible does it talk about meds but healing. All that was used back then were all natural. Now with allthat said I am praying for wisdom and relly appreciate all the help and info this site has given to me.  The Gerson diet healed a friend of mine from ALL that had went to his brain. They gave him a few months to live and he chose thos and 2 yrs later he still has no cancer.  Anyways I know we all make our own choices that is best for each of us.  Many blessings and well health

[NotJack?]

I agree, sharts are great, but just think how wonderful they could be with an infusion of cottage cheese down the throat and a cinnamon latte up the chute!  I do think that at least the Gerson (I have no personal experience with the Budwig) diet has worked wonders for one of my friends--not all.  Now, whether the success was the nutritional indulgence, placebo effect, or the (ugh) waste of good coffee, I certainly can't say.

[NotJack?]

If it is true that all of the people in the study who quit the TKI protocol after PCRU either stayed PCRU or responded positively to their old TKI's, and CML is a slow evolving cancer, there should be no reason why one couldn't suspend treatment in order to give birth.  I know that that is a lot of ifs,  but under the eye of a CML specialist, perhaps our younger friends can still have their genetic family.   There is also adoption, which is a joy as well.

[hannibellemo]

Good one, Jamar! I'm home with "stomach flu" today and that gave me a good ole belly laugh. Until I discovered that belly laughs and stomach flu don't mix for some reason!

Welcome, Shara! It's a lot to digest, I know, but you have every reason to believe you will be around to celebrate your grandbabies marriages! We have so much information to give it's difficult sometimes to sort it all out so just absorb it as you are able to. I remember having to leave this site every so often when I was first diagnosed cause I would freak myself out. It's just scary!

Take care and breathe every so often, it does wonders for your peace of mind!

Pat

[CallMeLucky]

We all have the right to deal with our illness the way we wish and choose the treatment plan that is right for us, free will has been given to us.

When I hear conversation like this I can't help but think of a joke I have heard.  I don't convey this to be condescending, I think there is often a lot of truth in humor.  The joke goes like this:

There was a great storm that was causing a river to rise and a nearby town had to evacuate.  As the water rose, rescuers in a boat floated past the church and told the preacher to get in so they could take him to safety, he refused and stated that God would look out for him.  Some hours later the water had risen to the second floor and another boat comes by with rescuers begging the preacher to get in the boat so they could take him to safety, again he refuses and states that God will protect him.  Some more time passes and the water has risen so high the preacher has been forced out on to the roof of the church.  A helicopter flies overhead and the rescue workers lower a rope to the preacher and one last time ask him to please let them save him.  Again, the preacher refuses their offer and states that God will save him.  Eventually the water rises and the preacher is swept away and  drowns.  Upon entering heaven the preacher sees God and begins to ask questions.  He says "father, I do not understand, I lived my life preaching your word and in the end you abandoned me and let me drown".  God responds to him and says "I sent two boats and a helicopter".

If you choose to believe that God is part of our world, then I think you would have to consider that God has given us the gift of these medications as a second chance at life.  It is certainly your right to refuse them, but I would hope that you take this into consideration.  For centuries CML has been a lethal disease.  No diets, life style changes, or amount of prayer seemed to make much of a dent in the survival rate.  Historically people died of CML.  Today most people survive CML because we have medications that work.  I don't think it would be a bad idea to augment your CML treatment with a healthy diet and lifestyle.  There are people who despite the medication do not survive CML, so anything you can throw at it may help.  But a strategy for dealing with CML that does not include TKI therapy, in my opinion is extremely foolish and lacks an appreciation for the seriousness of this disease.  I am not someone who would be willing to take this risk given my responsibilities to my family and my desire to see my children grow up.

I can say the following though with some certainty based on the human survival instinct.  CML is a slow moving disease, part of the reason you are challenging things is because you are not sick yet, I was in this same situation.  My doctors would ask me how I was feeling and I would always respond the same "I'm fine, its you people who keep telling me how sick I am".  If you choose not to take TKI drugs and try the diet one of two things will happen.  You may be lucky enough to be the rare minority who experience a miracle and beat the cancer through this diet plan or, more likely, the disease will progress and eventually you will get sick and at that point you will ask for the drug so you can feel better and survive.  You will most likely still do well because as we have seen people who do not find out they have CML until they are sick usually do well once they start treatment too.  But you must keep in mind that cancer is a clonal evolution disease and everyday you let it grow unchecked, you risk allowing it to mutate and transform into something more dangerous.  You also allow it to do more damage to your system and make it hard for the drug to bring you back to health later.  We have often seen with cancer that early intervention almost always yields a better outcome.  So yes the choice about treatment is yours to make with your family, but just keep something in mind about miraculous recoveries, they don't call them miracles becuase they happen every day.  The odds are that without TKI drug therapy, if you have CML, it will progress and eventually kill you.  So please give this the serious thought and concern it deserves.

I wish you peace and luck with your decision and the path you choose.

[pammartin]

Lucky,

Nicely written, loved the joke, your information is sound, thank you, for writing something I tried to do several times the past 24 hours and failed.

Pam

[AmyH]

I have heard that I wouldn't be able to adopt now with the CML.  Do you know anything about that? 

[Judy2]

Hi Shara,

I hope you read and read and read again CallMeLucky's post. I understand you have just been given a very scary dx and have been told that you will need to take these strong medicines for life. I know this is overwhelming. Sometimes I want to pull the covers over my head, I wish I didn't  have to take these medicines, too. Everytime I have a new side effect I want to cry, I want to scream, I want to stop taking the medicine, but Shara, the truth is we have no choice, we have to take these medicines if we want to  live. G-d blessed us, he gave us the scientists who discovered how to treat our CML.  I pray to G-d every night and he answers me, he answers me in the form of giving me these life saving drugs. Live your life as healthy as you can, but I hope that includes taking your medicine. Listen to your onc., he will tell you that the medicine is a must. I  know everything is new and scary but you are not alone in this. Everyone on the board respects your wishes but we also know that these medicines are the only thing that will help us. So please, Shara, take your medicine and listen to your onc. He has your best interest at heart.

Judy

[Judy2]

Hi Billie,

I am so sorry for all your tragedies. How do you endure everything?  Some days I just want to pull the covers over my head, it seems like it is all too much. How are things going in Florida and when will  you be home?

Judy

[NotJack?]

Hey Shara, I think that you may have misread my post, or, perhaps I was not as clear as I should have been.  I support your right to do whatever you decide to do.  I do not feel that it is a good idea to use diet as an "alternative" to TKI meds,  but to use diet to enhance your meds "As long as your onc doesn't think it would hurt, and you stay on your TKIs as well."  This CML is like ignoring putting out a fire with water because a number of people believe that faith and diet will put it out.  This is CANCER.  There are meds to inhibit it that for most people work without too many hardships.  There are trials for vaccines for our cancer, there are more targeted drugs being tested.  My advice is to take the drugs and if the oncologist finds no harm in it, try your diet as well.  Then you can choose which one is working, but don't give up a proven therapy for one that many consider based on faith rather than science.  Just follow the onc's advice, after you reach PCRu decide on whether you made the right choice.  These drugs lowered my 250,000 white blood count down to normal levels in a month--diet, even if it did work, would probably have taken long enough for my chronic condition to be accelerated, and my prognosis from a normal lifespan to considerably less.  I don't like drugs, I don't take pain killers,  but I take these, and I thank the researchers and clinical trial  friends everyday for giving me this gift.  For me to ignore the pain and sacrifice of those who brought me this gift is disrespectful and a big mistake.  I hope that you reconsider, and use your diet as a compliment to proper treatment, and not an alternative.  And only if you get an onc to assure you that the diet will not hurt you.  My gut is that they will tell you to get healthy before you start experimenting with questionable therapies.  This therapy is giving me 30 more years- time for me to see my family grow and flourish.  I hope that you take the advice of all of us, but if not we will all be here for you on your journey.  Jack