CSN Login
Members Online: 8

You are here

UPDATE a small miracle ! so aggressive hyperthermia in germany or watchful waiting at home with alternatives

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

UPDATE
so today great news, my leaky gut is fixed,
now onto rebuilding probiotics another 3 weeks program,
my functional test indicate i have phase 1 and phase 2 detox issues.
starting to fix these as well using glutaphoine iv with my iv c drip.
when these are fixed i will also have results of heavy metal chelation test results.
i am also waiting on detox pathway gene profile testing results in 8 more days.

until my liver is as good as i can get it, i am not touching chemo, even light chemo.
if i need that poison, its going to hit my liver , when my liver is finely tuned.
at least as good as i can get it. this will help with chemo tolerance and chelation.

so the next 4 weeks i will focus on these and do more ht research.
thanks everyone for the comments.
if and when i decide on ht i will update this post.

thanks to everyone who replied.

ORIGINAL
everyday is a new twist in my story. today I got a call giving me about $30,000 from my aunty's estate, she died from lung cancer november 2010. I am pretty keen to go, has anyone else been to the german clinics ? reply here or pm me ?

the timing is everything, this call was completely unexpected, the money completely unexpected. i got the call while i was at a friends funeral, she suicided, tragic but another post for that. its the same chapel as where my aunty was cremmated. I believe in God, in fate, but the co-incidence. the amount of money. its just to co-incidental. In my gut tells me to go. i wanted to share this.

my conventional doctors say i must just watch and wait. so 6 weekly cea's and 3 monthly scan's, thats the clinical standard here.
when / if the tumour lands either surgery or chemo ( largely palliative )

so do i keep on doing my alternatives( way to many to mention ) which maybe helping stop the cancers progress, but its really to early to tell.

or do i go and do light chemo/ hyperthermia mixture of full body and local hyperthermia.
with some herbs, minerals and vitamins that will be gentler on my system, boost my immune system.

I am so strong and healthy now, these few potentially rogue cells are really pisssing me off. Do I waste all my health and strength with 6 months of heavy duty folfuri avastin or folfox avastin if the tumour lands somewhere resectable.

Today i got the $30,000 cash to do the treatments, so all that is holding me back is organising the flights and picking a center. it only takes 3-4 weeks overseas.

Everyday I suspect these evil little cells are going to try and kill me, so now I am considering having some fun and killing them first, at least a few million. that would be alot of personal satisafaction.

Everyday I feel my actions can bring me closer to sustainable health, but its time for some serious decisions, as this window for early aggressive treatment is still just open.
I have been blessed to have had two clear pet and ct's and ultrasound in the last two months. but for how much longer ?????? who's to know.

Do I step out into a more aggressive and visit germany ?

The only downside is the money, the time, i don't think the hyperthermia will prejuidice anything i do here.

hugs,
Pete

I SENT THIS EMAIL TO MY FRIENDS

It would be lovely to catchup, time passes fast, i am fighting on with my cancer recurrance

Given seriousness and urgency of my cancer treatment, and the very real risk it will kill me at some point unless i get it beaten asap.

I propose to use the funds to cover the costs of my treatment in germany.

I have been discussing getting treatment in germany with quotes and emails for about $20 to $30 K
So far I have used our available funds and we are bouncing our rent and card card payments, i continue to spend on alternatives as conventional medicine has nothing to offer me at this point, but palliative care.

So I believe Aunty Val would not mind if i use the money for my cancer treatment, if it works i will ensure that they get the funds returned and setup as a savings bond, or the kids and ellie have literally $1,000,000 of dollars of assets.

Tragically ellie will not sell any assets, despite my constant requests and efforts to organise property sales. Her greed and desire for her and the childrens future is putting my survival at risk. I still love her and hope she sees the error of her greed and lack of understanding. getting divorced or the legal action required for me to the funds causes me huge stresses, these stresses in themselves are really negative for my defeat of my cancer.

Timing is everything with my treatment, or should i say time. so now i am going to definitely goto germany as soon as i can after the 10th when i have a colonoscopy and endoscopy performed.

I just wanted to put my situation clear for my record, i know we discussed most of this on the phone. We had the wake down at the RSL, its a reminder of different life, of val and harold, my dad and mum. Again I just wanted to write this more for me, than you, but wanted to be clear about the reason why I am not doing quiet what Val wanted.

I hope you are all well and healthy. Maybe Vals spirit is still looking after me. the timing is amazing.

I will let you know when I am flying off to germany, i would love to catchup before i go.

toyfox's picture
toyfox
Posts: 158
Joined: Apr 2011

Whatever you decide - wish you the best.
Linda

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i appreciate your wish.
hugs,
Pete

ps i wish the same for us all. i do think i offer the forum something of interest to some. in a sense as we say no one solution suits everyone. maybe the tailor making of our treatments offers better outcomes. i hope so.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Pete

This is another "6 One Way - 1/2 Dozen the Other" situation.

Let's examine this from a different angle that you brought up in your post - Time and Money

First, what a windfall receiving an inheritance that you never expected turned out to be. As we say in the States, that's alot of moolah. $30,000 is not going to come your way too many times in your life - how I wish I had a 'helping hand' like that sometimes.

Second, there is the time factor. I've watched your story since you came and I know you are doing what you feel you should do - and that's what you should be doing - just whatever feels right for you to try and do.

But, one can spend alot of money and time chasing a rabbit down a hole only to end up in the same place you were before you started. If all we are doing is spending nearly every second of the day "Trying to Live" - then where is the life?

Life is not in the existence or the extra seconds...while we search so feverishly, we can lose sight of that fact sometimes.

And while it's good to be pro-active, one can become too excessive. The mixture of things you are combining, I'm not sure if all of the doctors 'really know' what all the interactions would be - and if one things ended up stomping another by trying either this or that.

As you say, this probably would not hurt anything - but will lighten your wallet and take away some valuable alive time for you - it might net you or might not - that's the $64,000 questions.

I know you have spent an exorbirant amount of time in your pursuits and have spent countless thousands on medications and supplements - you are fortunate to have the means and the time to do so.

I don't have the resources that you have available to you...I'm still trying to hold onto my career....I'm working and commuting 12-13 hours of the day...exhausted when I get in...on Saturdays, I try and tend to chores and errands....and on Sundays, I've got to care for an elderly father in a nursing home...in between I'm pursuing my book project.

As for this..."when / if the tumour lands either surgery or chemo ( largely palliative) "

Pete, I'm becoming more convinced that for the vast majority of us "we're largely palliative" right out of the gate - it just takes a while in the journey to understand that definition.

And here..."I have been blessed to have had two clear pet and ct's and ultrasound in the last two months. but for how much longer ?????? who's to know."

For all intensive purposes, Pete...you are in pretty good shape...you're showing clear...after my last scan result, I'd take this one every day of the week - and twice on Sundays.

It's hard to hit a moving target, Pete...and cancer is constantly moving....trying to attack systemically for the sake of attacking is like putting a blindfold on you, spinning you around, handing you a pistol and you take aim and blindly shoot towards where you think the target is.

You can definitely see the logistics problem there, right Pete?

I know you like to have different opinions and I've grown comfortable enough around you to be able to speak to you and offer my take on a subject. So, I just offered another angle on your post. $30,000 right now would buy me a new life with the one I've got left.

It's a dice roll, so do what you feel is best...that's all that any of us can do - we play with what we've got and make the best decision we know to do - at the time we have to do it.

I figure you will be Germany bound - and I wish you the best on your treatment. Condolences on the passing of your aunt...it was nice that she remembered you in this way.

-Craig

wolfen's picture
wolfen
Posts: 1320
Joined: Apr 2009

You are my friend, so I will offer my opinion here also. As Craig said, "It is hard to hit a moving target". My question is, doesn't the heat treatment involved have to be aimed at a specific tumor? At this time, you have no specific tumor.

I am basing this on the local news article of the Chandler man traveling to the IOZK clinic in Cologne, Germany where his brain tumor is being treated by immunotherapy and heat therapy. He appears to be responding, but he has a specific tumor. You, of course, have done much research on this so I may be wrong.

It is good to be proactive, and I'm glad these funds have been provided for you, but sorry for the circumstances. And, possibly the funds could be used for your various supplements and other things.

Even though I am only the mother of a cancer survivor, I have watched so many here get "rid" of the monster, only to have it return with a vengeance no matter what protocol is followed. A few have been much more fortunate. I know it is a hard decision, and yours alone to make. You could certainly become one of the more fortunate.

Whatever choice you make, I wish you the best for your whole being, mind and body.

Luv,

Wolfen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

did i ever tell a part of my life story.
just briefly, at 24 i bought my first investment property just after mum died and she left me $34,000.
through luck, hard work, taking very big risks, i turned her $34,000 legacy to me into about $8 million in property protfolio.
so i retired at 34 from high pressure computing job to travel and make kids and i found scuba diving and photography.

so now i have built all these assets, and we are cash flow poor, but asset rich.
no banks will lend us, i have tried and tried.
for many reasons my dear wife will not sell anything yet!!!

if i cou;d get her the sell even just one property i could have about $1,000,000 in the bank, i could do whatever treatments and supplements i wanted over the next few years. we could engage a property manager to run the rest of the business and my wife and kids could come to germany with me potentially.

i would turn my treatment exploration over their into a holiday adventure that would take in the german castles, war stuff and take keith to lego land and mel to disney land.
i just don't have those options for me now.

so using some or all the money i made towards my treatments i would like. i might even engage a fulltime housekeeper to make juices, do teas, buy organic food. alas this is a dream.

so the use of the money my dear aunty val's is more short term in my books. where i
could go overseas on my own, try a treatment and continue learning.

you see its the closing window of short term aggressive therapy thats where my thinking is at.

i know its the concept of literally finding and killing the needle in the haystack. that haystack is me and the needle the tumour/s.

its the $64,000 question. i could for example have the hyperthermia on the liver, the abdo , the lungs using the stats on the likliest places for the met to arrive. again its the lower dosed, more effective treatment i am considering.

your story, the stories here on our forum, those of my friends here in support groups and from conferences and retreats have formulated my treatment choices.

i am guided by science, fate and the dice. my capacity to take risks with my fate, maybe a strong point or a failing, but as you have said its my way.

teaching the kids german, and checking out the snow could be fun. school has just come back for the kids. my wife and i like to play golf, they must have a few good courses in germany and europe.

i went for a scuba dive this morning, it was great, i higher oxygen mix than normal, i meditated at 10 meters depth for 10 minutes while my mate went exploring. i might be the only scuba diver diving while having active colorectal cancer, doing oxygen therapy and meditating.

to spend alot on the alternatives at this point, before i need the heavy duty treatments. if the alternatives work, well great, if not i can say i tried a few fun treatments.

hugs always sundance, i sincerely appreciate the reply, its a big decision and i will try and get more detailed info on prices and treatments from europe.

hugs,
Pete

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

At what point would I take the money from the roof over my children's heads (I have two grandchildren living with me now)and food from their bellies? At what point would I ask my husband to be reduced to pennies? At what point would I put my life ahead of theirs, decide I am more important? Not to the point to where I'm using unscientific alternatives and "therapies" unproven. At what point does someone understand what is a scam or what is reality?
I say "Hurrah!!!" to your wife for thinking of the future of her and her children. If one was to pass away, at least another is there to watch the children grow without struggling, begging to be put on the dole to have a roof over their heads.
I like you Pete, but... I've got to go with your wife on this one, our children are our future, women and children into the lifeboat first, etc.
Winter Marie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear winter,

i appreciate your comments and perspective.

how we go through this challenge as a family, remains.

I asked my daughter mel,do you want the $15,000 when your 21, or can i use it now for germany. she said use it for treatment.

My 6 year old said he just wants lego now, i said now lego now either way.

most of the therapies i am trying have science behind them, long before they become clinically accepted here or even mainstream in the us. hopefully my reply to craig, gives a little more context.

below is one of the replies.

are these guys selling snake oil or is it the best, will what they offer help me more than staying home and doing nothing, which is all the conventional doctors say here.

i have life insurance, and heaps of assets, so the kids and wife will be well cared for in the worst case. seriously trying to avoid that.

EMAIL reply from a clinic in today.
hugs,
pete

Thank you very much for sending your medical reports. You are suffering from colorectal recurrence and are looking for treatment.

Thank you very much for sending your medical reports. You are suffering from colorectal recurrence and are looking for treatment.

We have developed a special integrative cancer therapy concept as part of our holistic approach which gives the best guarantee for life quality.
In treating colorectal cancer we have very good experience by performing low dose, insulin potentiated chemotherapy in combination with local hyperthermia to the tumor manifestation, whole body hyperthermia, extensive detoxification and an immune biological support program.

For this treatment program you need to stay 3 weeks as inpatient.

In case that you decide to come to our hospital let us know so that we can make reservation

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

Hi,

Which German klinik did u get the treatment from

Was at St George klinik at bad aibling?

Have u tried the univ of Frankfurt and Dr vogl?

Pl let me know

I am based in India and dx with colon cancer with extensive Mets to liver =

Dics here put me on chemo - folfox and erbitux

Have done a month then emergency hospitalisation for severe neutropenia
have been in hospital since last 4 days on antibiotic and neupogen shots

Let me know

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

Hi,

Which German klinik did u get the treatment from

Was at St George klinik at bad aibling?

Have u tried the univ of Frankfurt and Dr vogl?

Pl let me know

I am based in India and dx with colon cancer with extensive Mets to liver =

Dics here put me on chemo - folfox and erbitux

Have done a month then emergency hospitalisation for severe neutropenia
have been in hospital since last 4 days on antibiotic and neupogen shots

Let me know

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

goodluck, sorry to about your problems, welcome to the board.

hugs,
Pete

Ted Jones
Posts: 5
Joined: Dec 2011

Although my assets are not like Pete's my feelings are exactly like herdizziness. Accepting this disease and our mortality is a horrible thing to face. I know death is inevitable. However, to me having my wife and the kids have something to start their life with is very important to me. We all fight to win the nearly unbeatable fight. Some people win. Most of us may win a few battles but not the war. Giving all my assets to fight for a small period of time is simply not my cup of tea. The future for me is my wife and children and their ability to have a good life.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi ted,

what can i say,

lets agree yes death is inevitable.

i don't agree facing mortality is horrible,
I personally have faced it many times in my life, i say bring it on,
if we could live forever would our days be as special, i think not,

giving all my assets to fight for a small period of time, i agree with you that.
sorry but the windfall is like a short term loan, i have been very fortunate in my life with regard to finance, i wished i could say the same about health, alas.

Maybe Ted, if we keep on winning battles, we might win the war.
I am unrealist optomist, even if i die from this disease, i believe in reincardnation and everlasting life, so crc can never win.

its just some stupid cells, that we goto kill.

hugs,
Pete

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I am a bit confused...so help me understand. I thought that your latest scans were clear. I thought that your other tests were good. Have you actually been diagnosed with a recurrance, or are you seeking treatment to keep a recurrance at bay?

I hate that you and your wife are so at odds. However, just based on what you have shared here I don't think I would call her desire for financial solvency greed when there are children to raise.

I have read your posts about trying all sorts of alternatives, suppliments and multiple doctors. While the direct content is interesting, the underlying tone is concerning. I get the impression that fear is driving you.

All of us have been forced to face our own mortality because of a cancer diagnosis. It is scarey, but we can't let it take over the time we have left...be it days, weeks, months or years. Your survival became at risk the day cancer first started up in your body. I think you do your wife a disservice to say that it is she who is putting you at risk.

Do not let cancer take your family from you. To loose them before your last breath would be tragic.

Unless a 'magic bullet' is found, you will always be looking over your shoulder for the 'next time' cancer comes to call.

Do what you must, but remember you also have a responsibility to your wife and children to insure their future if you aren't there for them.

Marie who loves kitties

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear marie,

that is a great question, i cannot say, i am acting assuming it is.
the 3 three onc's and 2 surgeons and 2 integrative gp's say given my clinical history and their experience yes. I have the words metastatic colorectal recurrance on doctors referal letter.

assuming it is, and if i am wrong well , just how fantastic would that be. they have elimenated most of the other causes of rising cea's not related to mcrc. so its kind of what they call a differential diagnosis at this point.

noone wants to issue full chemo based on a maybe, the tumour if it exists may develop resistance earlier than necessary. so on one hand i run the risk of these early interventions actually reducing my length of survival, or do they give me the best chance of a cure, the only chance of a cure.

i appreciate your point about us being happy as a family as long as possible, and i have not had any fights over this point about assets, but i have expressed what i would like to do that would give me my best shot a cure.

so the question becomes, how much money is enough for the kids and wife. one, two or three million.

i am blessed to have these choices, but they are difficult choices to make.

we all go through them to different extents.

i know of kids left millions, without parents that now are in lots of trouble.

does giving that kid of money inheritance to kids help them or hinder them. that's a whole other post.

is not my greatest responsibility to my kids and wife, to love them. i thought staying alive as well and as long as possible my best way of achieving that.

hugs,
Pete

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Your financial circumstances are highly unusual for those of us here. Most of us must measure our pennies, thus our concern for your family's financial status in your absence.

Of course having assets worth a great deal only means something if you don't have liabilities of significance against them.

I don't think any of us were suggesting that you give up all your efforts to remain healthy not only for your family but for yourself. I for one only felt your sense of desperation in trying to find the cure. I guess my Scots heritage keeps my purse strings tight unless I am able to see that I can get my money's worth.

From what I have read, they use hyperthermia treatments in conjunction with radiation or chemo. Is that the treatment you are seeking or is there something else? How will you know if it worked since there is no visible tumor, remembering that CEA can be unreliable no matter how good an indicator it was before?

I wish you luck with whatever you determine is your best course.

Marie who loves kitties

For those wanting more information about this treatment go to

http://www.cancer.org/Treatment/TreatmentsandSideEffects/TreatmentTypes/hyperthermia

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i have had discussions with different clinics looking at treatment described in the link below.

I have also found a few more wholist treatment centers that would replace chemo drugs, with chemo supplements supplements and herbs like tcm. replying to you has just helped me cook up another idea, excuse the punn. i could go to the sauna after i get my iv vitamin C, its like chemo, but gentler. thanks for replying, as its helped me realise another potential way i can improve my do it myself therapy at home. i will hop in the sauna at the gym in a sweatsuit after i finish my infusions. this is such a simple therapy, i should have thought of this before. i tried do it yourself hyperthermia earlier, its a bit scary. your heart pounds fast at 38.6 degrees. nothing ventured nothing gained i say.

not easy choices to make, but make them i will.

thanks for the wish of luck. i will take it, i have the capacity.

I say what if i do this and it works! I live, 1000s of germans do this every year.
should patients drive these treatment trends, or should we patiently wait for our doctors.

so i could imagine flying over every six months, to get cooked, kill off some crc's and see how it goes. maybe my cea will stay down forever. maybe this gentler chemo is the way for me, i can then keep on diving, have fun with the family.

I share my story, becuase i hoped to have one pm or reply from someone who tried these treatments. not one answer yet, alas! maybe i am the first from csn to consider travel to germany to try these clinics.

I have been encouraged by german oncologists whose reading of my reports and history i could not fault.

The internet gives me, us all the power to at least research and ask our doctors questions.
its that epatient dave stuff phil talked about. yes i expect i am the patient from hell, i got given that book, i just have not read it yet!

I will send my onc a postcard from germany.

my cea is up and steady at 17 for a 2 1/2 months now. its not going down. if was back to zero like it used to be, well this post and my alternative wanderings would not have happened. given how obsessed i was with health to prevent recurrence, i guess i have no choice in my mind to go all out trying to get the marker back to zero and to live each day as well as i can.

hugs,
Pete

neons356
Posts: 58
Joined: Dec 2010

I really think you might want to take a moment to reconsider. Your proactivity may be driving you to an unhealthy place in terms of your mind and spirit. You have to make the decision, but the consensus thus far from people that care about you is that the money might be better spent elsewhere.
Carl

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

keeping my mind and spirit focused is a challenge.

doing whats right for the family and for me a difficult juggle.

on the brightside, being alive is great, i am glad i like juggling.

I will go to germany with the families blessings or not at all.

hugs,

Pete

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

There is more than one way to lose your life to cancer. I don't know why your cea is up but don't forget it wasn't that long ago you were evac'ed out of New Guinea because of malaria. Malaria is a very serious illness and it is treated with some serious drugs plus it does not always leave your system, patients commonly have relapses. I would be waiting and seeing if there is a problem .I have had the experience of losing a wife through cancer it is not a good scene,Ron.

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Dear Pete,

My friend, I have followed your posts, everyone of them. But what are you doing now
when you go hunting, you wait to shoot until you have a target in your viewer. When you go fishing you wait until you have something pulling on your fishing rod. When you take a picture you wait until you have a clear picture before taking the picture.
Do you have a clear picture now

Right now, as I understand you have no exact target to aim at. You are doing what you cab to stay healthy with all the regiems you are following.
My CEA went up alarmingly within a few weeks until we found out I had an infection.
Ones we cured that it was down again.
If you have a target aim for that target, but if their is none, then wait until you have one.

I do remember you wtote ones that ellie was a angel to you. Remember that. She is also the mother of your children, and as an y mother she looks out for their welbeing.
I am possitive IF it came down to your survival she would sell some real estate if it would safe your life.
I prefer quality over quantaty. I refuse to be a burden on any body. Therefor I am not fighting something that is not proven that it is there.

I can not believe that Ellie is greedy, she just wants to look out for the children and also for you.
I hope that you find peace and make a decission together with Ellie, what is best for you , her and the children.
hugs, Marjan

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

an angle one moment, a devil the next.

a devilish angel, is a contradiction, but i think it suits my wife.

its our wedding anniversary on the 12th of feb, so if we agree i will leave on the 13th.

the pressure she is under is tremendous, the same goes for the kids.

i prefer the fishing analogy,

we chuck the line in without knowing where the fish are!

alas i don't catch fish to wffectively using a line, now give me a spear gun and i can bring home a nice coral trout and blackfish.

I know the the idea about having a target, its just the window for really early aggressive treatment that i sense is right for me.

hugs,
Pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i always keep on getting into trouble, thats my life.
so man, i hope its the maleria coming back, i will do another blood test to check this.
if it is, i will drive up to brisbane and give you a real hug.

mrcr or maleria relapse, none of the doctors so far have suggested getting this checked.

its a long shot, but certainly worth elimenating by a simple blood test, that all the doctors, and my clever helpful advisors have not suggested so far.

hugs,
pete

ps i won't loose my dear wife to cancer money issues, not while i have breathe, its just having all our assets tied up together thats frustrating, i cannot use say 20% of them for my treatments.

i would swap all the assets i have got for good health right now, i can always go back to work and make a good living.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

This cancer business is often going 15 rounds, even extra, unless one knocks the other out first. We absolutely avoid placing all our money on any one treatment or round and it has served my wife well. Too toxic or too expensive, and one has shot their bolt - then what? Running out of money can be very dangerous in its own right. When we shop and work in our own efforts, we often get our costs 50%-80%-90%-98% lower, with a BETTER treatment.

We ask ourselves, can we do a home or local version? Usually the answer is yes. Now for Germany, they do have specialized high precision machines and experience, but in the same situation I would still try to stay closer to home or low cost areas. I would worry that a $30,000 quote, could have complications or added trip costs (remember Papa New Guinea) that the trip would become $55,000 or $75,000 door-to-door (return). You know, my wife has a thermal bed from years ago and she's hardly used it, but it's there and her doctor is ready to use it, obviously without the degree of precision control the German treatment has.

We avoid high cost providers, often some of the best are lower cost. Saving money in one area means easy funds for other treatment trials, more chances.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear tanstaalf,

I want to meditate, drink my juices, take my supplements, eat my organic foods and get the best treatment appropriate for my needs.

i have thought of doing this myself, i have tried. its my realisation of my own short comings in understanding the treatment options and how to execute them that is pushing me towards these types of treatments.

i am shopping around and getting quotes and treatment suggestions. as i sit here i have a view of the airport, i see a plane landing every minute over the bay. its a lovelly day here. i could hope on a plane in under three hours, my passport is ready, my files organised.

so many of the interesting wholist papers i read are out of germany. I will make the best choice i can.

hugs,
Pete

ps i have tried my own hyperthermia, the risks are to high and the benefits need some chemo. tht rules out do it yourself.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Pete, I'm praying that you make the right choice for you and your family.

*hugs*
Gail

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

god bless you and everyone for your care and suggestions.
hugs,
Pete

ps why did i get the phone call and the money to do this while at the same chapel my dear aunty val was cremated in, its more the co-incidence of the the availability of the funds and the timing. i am a fatalist in some ways, so maybe that is actually god answering my prayers in his way. i will pray and research and decide. it will be a joint decision. i know it must be.

coloCan
Posts: 1956
Joined: Oct 2009

We've often heard the phrase "wait and see" because whats appearing on a scan is too micro to determine if its cancer. Unfortunately, sometimes by the time a definite determination is made, the cancer has advanced too much to stop or destroy......On the other hand, to attempt to attack something that may or may not be where its thought to be, if its there at all,may cause more harm than good.........

Does where you intend to go in Germany have a documented, verifiable history of success? Once you get there, you don't want to discover otherwise. Would like to continue reading your posts for the next couple of decades......steve

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

that said, my favourite clinic at present has this real life story, well i told a friend at the kids school. her sister in law died their, after arriving in only 2 days. so was really far gone. is it good that a few people i know here have gone.

i will try and obtain verifiable histories of success.

hugs,
Pete

ps i look forward to reading your research peices for the next few decades as well.
i wonder if they ipad's in heaven. not that thats where i will be any time soon.

you nailed it!!!!!!!!!! watch and wait, but it maybe be to late.
alas it could be to late already, its an incideous disease.

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I was going to stay away from this as I have some concerns and questions that I don't think will matter what my opinion is. When it comes down to it you will do what you want to do.

The thing that I can't understand is how could you put your kids in the middle of an adult conversation between you and your wife. They have no business chosing a side. That could leave life long effects on them that they should never ever have to have....responsibility for their fathers health.... JMO.

You need to fix that pronto before you go any further with a decision.

plh4gail

Cathleen Mary
Posts: 827
Joined: May 2011

This is not meant as a judgment...just an invitation to look thru a different lens. If we're obsessed by cancer, has it already won?
Is it possible that what is most healing is our capacity to love and be loved? Perhaps nothing, not even the cure of cancer, is more important than nurturing those relationships.
Maybe what we are all searching for can be found deep within ourselves.
With hope for all of us,
Cathleen Mary

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i loved what you had to say. thanks.

i try to take a deep breathe everyday, especially when i meditate and pray.

has it won already ? thats such a good question. i hope not.

i am way i am blessed i have the capacity, opportunity and will to change my life to approach my cancer journey in my way. even while at mass, i am scratching my sons back so he relaxes and does not fidget. not a night goes past without a hug, a kiss and a story or two.

this has to be one of the greatest questions i ask of myself.
to love and be loved is whats most healing, its the strength of love from and in my family that is driving me, i have such a great life.

this stranger at church this morning, is the mother of my sons friend at school, we got to talking, she asked me if i had heard of bitter melons. they are an alternative cancer therapy i had read about, that are not easily sourced. well she has an asian fruit and veg buisness and said she will give me some tuesday morning when they get back from the commercial markets.

god works in mysterious ways. another alternative cancer thing i know of, but have not even researched. i said thankyou and of course i appreciated her kind offer of help.

i think my obsession with alternative cancer treatments now is really well balanced in the context of my life. you see for the first 43 years, i was not aware or focused on health at all.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Dear Gail,

thanks for your opinion, i kind of agree with you, but we were discussing this in the kitchen and mel walked past, and i asked her. her immediate answer answer was yes of course. she knows about the cashflow problems last week as well.

she dishes out the supplements like an angel, we are in this together. whats the worst, she helped her dad do what he thought was best. we are really close.

we have a little code, if she sees i am down, not smiling, she smiles at me. as soon as i see her smile i have to smile back. it works everytime. i am not going to loose a day to depression, given i cannot get a moneyback guarantee on the number of days.

the disputes in the family, the good times, for me its apart of life. she knows mum and dad have many differences of opinion on many things. thats the strong point of our family life, i am happy to let her decide where her decisions lie.

its the one skill, above all others i teach both the kids, thats how to make wise decisions, or at least the best decision they can based on the information at hand.

my fears for the future for them without me are real, exposing them to my challenges, the families challenges i feel works for us. she still has a great life, despite these troublesome cells, in fact so do i.

i did asked how she felt about it, the money being used versus going into trust for her. she was fine, if she had said no, well i would have respected that. she is 10 going on 16.

I will do what i think is best, but i already have agreement from wife to go to germany. she wants to come with me, but who will look after the kids, the business the dogs.

i might just check it out and see whats what.

this windfall just given me this option as an immediate alternative, that i am carefully considering and researching.

our aunty val loved us, especially the kids and they loved her. she was not related by blood, but was my mum's best friend. and in some ways i was a son to her. she had no children.

so now at this point i told the kids the money for them was coming through, but that mum and i agreed to use it on my cancer therapies. they are were ok, as long as i promised to pay it back when i get well. which i promised to do. i have been blessed with more than enough money, just ironically i cannot access it just at the moment, when in my mind i have great need.

we have been time rich, asset rich and to some extent cashflow poor. we live an alternative lifestyle in many ways.

the life long effects of not having a loving dad, is actually one of my motivating factors. the kids are one of the most joyous parts of my life, we are talking about all going to live in germany for six months, if its needed or justified. i am still doing my research.

my girl mel, gives me my injections every second or third night as my wife hates needles and i have problems doing intramuscular injections in the butt.

they don't have responsibility for my health, thats mine alone, but we are a family and their support i appreciate.

hugs,
pete

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010
PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

You do realize of course, in order for the hypothermia to work they have to have an actual TUMOR to concentrate it on?
And it's simply supposed to do exactly what normal chemo (keeping in mind of course you have to do a low dose of chemo with the hypothermia) or radiation does?
Just could have sworn your pt's and ct's weren't showing one.
They do this in the US as well, but of course, here they require an actual tumor to concentrate on.
Winter Marie

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Pete, my husband would sell it all to find a cure for me. But there isn't a cure. NED last month and not this month. Major bummer. But like you I am waihing 90 days to see if the booger shows up on my PET. I dont think About CANCER EVERY DAY! HECK IF I DIDN'T hAVE THIS HERNIA. I WOULD FERL PRETTY GOOD.

No one can tell you what to do, and I don't think asking for a million is much to ask. I don't think your wife will be poor not with millions in assets, she should live a bit too. Life is too short. As for the kids. They won't starve.

go easy. Don't over do the thinking. Relax.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i will relax, thanks again.
hugs,
PEte

ps sorry about the booger, i hope he is a noshow

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear winter,

to some extent what you say is correct, but whole body hyperthermia without chemo but with supplements, vitamins and minerals has been recommended for me as an effective treatment as well.

who in the states does it?

i'll get a quote. mind you i would prefer at this point to go to the centers where the technique has been practiced and developed, rather than somewhere where the experience is not so great. i am corresponding with oncologists who do hyperthermia everyday, with lots of crc patients.

its easy for me to accept that australia is not the worlds best in colorectal treatment. some countries have medical/legal/political frameworks that enable more innovation and fast tracking. No offense but maybe America is not the world leader either in colorectal treatment. what i am seeking, is what country has the worlds best practice, or the best treatment options. i am just looking for what treatment is best for me, the current clinical standard just sux as far as i am concerned.

they also require a tumour in germany clinics as well to focus local hyperthermia on.

so far the pet's and ct's are clear, this is all about keeping them that way.

I say if the hyperthermia keeps the tumour dormant, small whatever. i would fly over once, twice or three times a year for the next decade and get hyperthermia treatment. i'll skip 6 months of folfiri if i can.

If i do the trip enough time, think of all the air miles i will clockup. I might even learn german.

hugs,
pete

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

If you put "hypothermia cancer treatment USA" into your favorite search engine you will find quite a few places in the states which offer this treatment. Among them are Cancer Treatment Centers of America and lots of clinic type places. There may also be some hospitals on the lists.

I still have to wonder that the doctors in Germany are going to apply this treatment without a visible tumor. Are you considering full body treatment?

While you may want to keep this on your list, I really would suggest that you research just how effective it is 'without a visible tumor'. How can it possibly be evaluated in a trial or otherwise without a target.

Marie who loves kitties

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Many, which is why I worry that the ones you have chosen in Germany aren't exactly up to snuff, 30,000.00 for 3 weeks or 6 weeks or whatever it is, is unbelievably CHEAP for a therapy that is more expensive then radiation and chemo combined. It takes more medical personnel, more machinery then the common alternatives of radiation and chemo in combination.
As for who does it in the US? Quite a few actually, one that is doing it comes to mind is Helen Diller Family Comprehensive Cancer Center UCSF (In San Francisco) and LA County USC Medical Center
And Pete, it isn't a "cure-all" it's just INSTEAD of RADIATION, it's touted as being kinder then radiation, but NOT more effective.
Chasing a rabbit down a hole, the man comes away with nothing gained in hand, just the loss of the rabbit.
Winter Marie

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

I wasn't going to get involved but I am very concerned for you my friend. It seems like your on a one man war against cancer, and your hoping to keep it at bay, but hoping at the same time you'll find the cure for it?
i don't think Germany is the answer, if it was, we'd all sell our assests and head out there. Remember Farrah Fawcett, she may have not gone out to Germany for the same treatment, but she went out there and she still died.
Steve Jobs? for all his billions cancer still claimed him in the end.
It's great your doing all you can to keep it at bay, but I'm worried your getting obsessed, seriously.
Your cea is up, but you still have no real idea what's going on in your body. Is the cancer back or not? you don't know that. You going out to Germany, to be honest, they are thinking about the money and not you.
Just thinking how, some here in the UK would do anything to get treatment in the States, and it seems now everyone wants to come to Europe. Please think about this very carefully, you could be doing your body more damage then good. And cancer may not end up killing you, but the treatments might. And don't tell me alternatives haven't hurt people because they have, especially something so dangerous. Honestly, I think you need to see a consoler who is a specialist in cancer, because I really think you need to talk about it all. If you get offended by what I have written, I apologise but I am really concerned about you.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear sonia

you could never offend me, and i sincerely appreciate your comments actually everyones comments. when I post out into the forum is fair to accept all the replies, i appreciate the time and care people put into their replies. the ones at odds with my prejuidices offer me the chance to fully consider if what i am doing is the best. thats why i am replying in detail to each persons input. i will have some of the collective wisdom of this board reflected in my decisions.

i also am worried that i am getting obsessed. the daily aspects of family life keep me centered on one hand but encourage me to explore all the options available to me.

its my fault for going to this large posh alternative cancer treatment conference in melbourne, which was last november i listened to the best speakers in our country on alternative therapies that get results. the day after the conference i found out i had a recurrence. also amazing timing.

i actually recorded the entire conference, now every speaker made an impression. they said australia was 30 years behind germany in our cancer treatments, they gave examples with regard to vitamin c therapy and hyperthermia and others.

based on that conference i went to melbourne to investigate the only hyperthermia setup in australia, it was not an imppressive operation as it was just setting up.

given my understanding of mcrc, the treatment options, and i think its fair to say anyone who has been active on our board, would be aware of the challenges most treatment poses.

for me the glass is half full, so in the absence of clinical studies saying hyperthermia with low dose chemo at the earliest stages recurrence is useless, i presume to hope that it in fact may help. yes wishful thinking, but whats left to wait and see.

I am not aware of lasting side effects of hyperthermia. Now its not been discussed here much, no else here has gone to germany to try it. I am a bit adventureous, ok even a tad reckless given the likely challenge before me, my onc is adamant its a recurrence, and so is the second and third opinion from onc and also the colorectal surgeons i have consulted with.

the idea of hypermeria with lower doses of chemo is just so compelling for me, or even replacing low dose chemo with cancer killing gentle natural therapies like iscador. now i have emailed these centers as well.

the centers i have found have exceptional reputations and have been highly recommended.

I am not aware of the alternatives being that dangerous, so far i feel great and have heaps of energy. but i will be careful and i am trying to do my homework. even this post is all about doing research on the centers. so far no one has had any good or bad stories about german clinics.

its just the idea of hoping on a plain with my passport and getting three weeks of therapy in germany seems so easy to me. i feel silly for delaying for so long, especially when the option is to sit back and grow a tumour so my onc can have a target.

i remember vividly this chart about the exponential growth of cancer over time and how its better to get rid of tumours before they arrive or take root.

the anti angiogenic focus of these centers is something i will pursue as well.
I will ask to get my counsellor back, to keep an eye on me. My last counsellor said she was impressed with my health focus, despite most of my alternatives being not recommended by the hospital she was a part of. she said my commitment to diet and exercise was exemplary.

Its strange that what i think of as my greatest strength , others percieve as a weakness.

I guess all our journeys are different, mine maybe just a little bit more. at least i am a one stop shop for most alternative therapies from tcm to supplements, from iscador to avemar, from urkrain to apatone and so many more..... it will be fun to see if any of them help.

I only need one of them to work well against my crc and i will avoid chemo i hope.

hugs,
Pete

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I have followed this thread with great interest!
I suspect in your heart of hearts, you have already made up your mind to go.
Please report back with what we all hope is fantastic news.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Pete,
Which kind of hyperthermia (HT) equipment are you considering? (how many major brands are there?) I notice that this European HT manufacturer that claims to be the "gold standard" lists equipment sited in Asia, closer, presumably less expensive. Since it didn't list Australia, I assume its likely they have another "brand" of HT equipment. Many seem to be combining radiation or chemo with their HT.

If we were pursing hyperthermia right now, I guess we would consider the likelihood of this being a periodic treatment, say 6 weeks HT every 5-15 months in combo with other treatments. For us, this would favor closer sources with a lot of comparision of experience base and "brand" equipment if time allowed.

janie1
Posts: 753
Joined: Apr 2011

Best to you, Pete. I think you have made up your mind, so will be thinking of you.
This is tough. I've been obsessed with that cancer vaccine trial that Pepe was offered. I'm not at that place yet. You are.....in my opinion, somewhere between clear, and MAYBE new activity....but still can't be seen on scans.
Supposedly there are no bad effects with the vaccine.
Hyperthermia, just seems old and still have to do it with chemo or radiation. You have certainly researched it more than I have, though, so what do I know.......but that vaccine, even though Phase 1, now that has me intrigued.
I just feel like you've got time and assets, and praying you are making the best decision for you.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

you are always helpful my friend, don't you ever to go to far away.

i cannot get the specifics out of the german clinics, yet!
so i cannot compare results, this is a stumbling block so i am not going until i get this sorted.

its the colorectal expertese with hyperthermia i real want, at a budget price!
I think i will just buy a sauna and an ecg machine on ebay and do it myself.

I think my protocol is probably just as good as most of the clinics.

will keep on researching and assessing health, test by test and scan by scan.

My health is improving, my bloods are getting better, its just the dammed cea marker, thats not falling. the next one I hope shows a decrease , i have stepped up the artemisinin, the iv c, etc etc etc. all these alternative strategies should kill the beast i hope.

hugs,
Pete

MSM's picture
MSM
Posts: 7
Joined: Nov 2011

Pete, if it feels right, go for it. I am currently in China undertaking 6 weeks of SPDT combined with low dose chemo (see www.coloncancerandyouth.com.au). I have also looked at the clinic in Germany with interest. If you go, keep us posted on your progress.

cheers
Murray

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi murray,

great website and goodluck.
i'll keep you posted, here if / when i decide to get ht.

hugs,
Pete

ps at 37 your just a baby, i thought i was young getting it at 43.
maybe consider give fitgenes a call and do the genetics test, if you got the dollars
genotics for the molecular test. give me a call if you are interested in either of these.
we got some smart scientists in australia, its just clinical practise is 30 years behind.

charliesangel
Posts: 26
Joined: Dec 2009

Hmmm... what an interesting response you have had Pete!! My father went through exactly the same thing, he worked all his life to build up over 1mil in cash and assets and my mother did not work at all. When he wanted to use some of the cash to head overseas for Cyberknife my mother went berzerk... how dare he spend part of her retirement (I use the word retirement loosely as she has not worked since she was a teenager) on a cancer treatment that Australia did not deem fit to have. Two and a half years later he is in remission after being told he was terminal and had less than a year left, all thanks to Cyberknife! (Yes, we did go overseas and spend some of her retirement!!)

Personally I think if you worked for the money, you can sure as buggery spend it on saving your life, and bugger the Mrs... I'm sure your kids would rather have their father around.

Let's be realistic, if Pete spent 30k out of a mil in assets, it's not going to send his wife broke, and I think it's outrageous she did not wish to spend the money.

I think it's great your being proactive, if I were you I would certainly want to get the nasty cancer cells before they are big enough to show on a scan, and quite possibly spread to the point of being terminal in the meantime. Go for it Pete and I look forward to hearing your report.

All the best.
x

Subscribe to Comments for "UPDATE a small miracle ! so aggressive hyperthermia in germany or watchful waiting at home with alternatives"