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great news from germany and guess who got irenotecan today

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

so i did my second chemo embolization targetting peritoneal mets and liver mets this time.
i got mitomycin c, irenotecan and avastin pumped straight into the biggest tumours. then back again for another treatment 14dec, then a six week gap and back to germany for more treatments. prof vogels treatments ( google if interested ) kill the big tumours while the immunotherapy mops up the rest. thats are pretty simple explanation. sorry. I feel great at the moment and yes its ironic who great it feels to have some chemo pumping around the part of my liver where the tumours are and not around my body. they use avastin to stop the arterial blood flow to the tumours. how clever.

the good news is the net result after 5 weeks therapy is tumour regression and no new mets. so I have concluded this is very very goods news, because it could have been worse. and this is all while my immune system has been spared systemic chemo except for a very low dose of mitomycin c 10 days ago to kill circlating ctc's.

also remember that the removab, trifunctional antibody is supposed to be actively doing its work.

tomorrow hyperthermia, aiming to get over 40 degress, my last one was only 39.3

and then off to get my dendretic cell vaccine made.

interesting times, looking forward to going home for 4 weeks over xmas.

its good to share good news after month after month of cea rise. I think this is the first technical positive test result indicating therapies are working. as opposed to all those tests I did over the last 10 months that said all was fine when well it was not.

hugs,
Pete

ps these some links about the dietary therapy i am starting. its basically ketogenic.
I have more upto date info that I cannot publish, but if you interested in tavarlin I can send you the english flyer thats really good.

http://advancedsilversolution.wordpress.com/2008/06/01/dr-coys-tktl1-anti-cancer-diet/
http://m.gwinnettdailypost.com/news/2012/mar/06/lawrenceville-company-reaches-agreement-with/

pps I got a bit of a warning about gcmaf possibly interferring with some of the immunotherapies I am doing so I am backing off it until I can get confirmation from the nobel prize winning research team thats making the dendretic cell vaccine. with peritoneal disease I don't have much margin for error.

ppps http://petertrayhurn.blogspot.com/2012/11/great-news-from-germany-and-guess-who.html
I have a link on the blog to my medical reference library that describes my therapies here and other interesting papers from researchers. Its hidden behind a link on my blog so you can read and download the papers if your interested. but please don't publish them elsewhere, its a copyright thing and out of respect to my medical team.

Chelsea71
Posts: 1170
Joined: Sep 2012

Congratulations, sounds like very good news. Wish we could afford to send my husband to Germany. I'm very pleased that your situation is turning around, for you.

All the best,

Chelsea

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i am grateful the life insurance paid out so i could gamble here.
some of the therapies are being trialed in the usa, ie removab.
phil mentioned lots of good info in the coffee in baden baden post.
don't read the side effects, they are actually understated, but that like most chemo and this stuff aint chemo.

all these therapies imply "you gotto be cruel to be kind" removab is cruel but effective.
read the removab post, but if i live its worth it, even if broke at the end.

heck i can always get a job as an english teacher!

hugs,
pete

lepperl's picture
lepperl
Posts: 39
Joined: Jul 2012

Good news. I am glad things are shrinking and how great that you get the chemo pumped directly to the tumor. Minimal side effects. That is awesome.
Lori

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

its early days, i am still praying, did lots yesterday.
thanks for caring, being apart of this community makes all the difference in the world.
anyone who says less has missed the real value of csn 128, in my opinion. its much more than science here, what helps us survive is love and care not treatments, mind you they help.

hugs,
pete

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Great news indeed! Glad to hear positive results. Regarding your comment:
"chemo pumping around the part of my liver where the tumours are and not around my body."
How are your Docs doing this? I'm curious to know.
Cheers to more good results!
Ron

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

see the blog,medical reference, read vogl, the link is also in phils reply.
maybe print it and see what your onc says. leave them a copy and say thats from pete, that today has been a free consult for you. they our onc's should only charge when each consult makes our quality and quantity of life longer and better. i am soooo demanding. anything less is a freeby.

hugs,
pete

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

Sounds similar to the HAI therapy I had with my liver as far as targeted treatment goes.
I had used Avastin systemically first though and that worked like a charm.
It starved my main liver tumors and made the rest possible.
While the idea of chemo is un-appealing to many, sometimes you must break a few eggs to make an omelet.
-pppphil
:-)

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Pete, when your CEA was rising, did you have CT scan and PET and no evidence of cancer? I know you had mentioned a test to have doe, but can't recall what it was. Some type of CT?

Glad you are getting attention, and take care! aufwiedisen.... (SP?)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

darlin what bloody useless did i not do. 3 cts, mri's, ultrasounds. 3 pets.
i suggested it before to you, but you may have missed it as our unknown rise cea was similar.

i had many small shitty peritoneal mets, by then over a month or 2 a couple of small tumours in the liver and spots on the surface of the liver. and a spot on the lung.

only the last pet and then an angio ct confirmed the location of tumours cells. but the cea never lied. NED sometimes means tumours just under the radar. sorry to spoil the ned party, thats my take.

hugs,
Pete

ps look at the blog, look at tavarlin test to see the metastatic potential of any circulating stem cells. a usa company has the licence, no clue if they are doing the test.

Chelsea71
Posts: 1170
Joined: Sep 2012

Sad but true. Before HIPEC my husband Had a lot of tests MRI, pet, ct etc. No cancer showed up on any of these tests. The surgeon opened him up and there was cancer all over the place. He lost his spleen, some small int, tail of the pancreas, some abdominal wall etc.... Apparently cancer within the abdominal cavity is hard to detect. Takes on the shapes of the organs. Spots on the liver, lung etc are much more easily detected.

Chelsea

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

its fun breaking eggs, and a boys got a do, what a boys got a do.
its a nice planet after all. the european women are as pretty as the countryside.
https://docs.google.com/open?id=1RwNF6_dmF1vcHuiYjPZ9ywyG8X-dSfWLW6A9GqjNeOvfK2Kj7a4tsEdV3jy8
the science of vogel, i should checked out hai one day for curiousity.

vogel said save surgery to when i really need it.

i suspect both aim to reduce chemo burden. the issue for me is low dose targeted avastin, means i am not hopefully subject as quickly to the multidrug resistance effect.

who thought pushing the envelope could be this much fun.

hugs,
Pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

Great to hear your getting a good response from your treatments!!!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i just hope the good response continues, at last some positive direction thats measurable.
I am just basking in the good news, not often I get it.

hugs,
Pete

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

"...using secondary metabolites primarily polyphenols" in the Tavarlin diet brochure is a little obscure. I assume he means plant and fruit extracts of lignans, tannins or flavonoids which are secondary metabolites of plant metabolism. Any particular flavors?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

so i am trying the coy diet along with tavarlin, will explain more. the clinic here is loosely coy now for some hardcore patients they are going strictly coy. i will share the details and the exerience.

hugs,
Pete

Brenda Bricco's picture
Brenda Bricco
Posts: 561
Joined: Aug 2011

This is wonderful news Pete and I love seeing you in such good spirits!Go celebrate and be happy, I am happy for you. :)))
Brenda

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i had an hour with our therapist today, we went over the good news, and we tried to move it from an interlectual understanding to how was i feeling and to integrating it into my being. words and feelings of joy and gratitude came up. what was surprising for me with my rosy positive disposition, well that has largely been built on faith and hope. So to have a result that supports the faith and hope of the current treatment choices gives me more optimisim.
hugs,
Pete
ps it like give a boy an inch and he takes a mile, so I have been given a inch of good news and i will take a mile of positive imagery. for me this translates to other therapies, commitment to those therapies. i had champagne tonight to celebrate. at dinner we discussed organising a friday night party with baileys, schnaps, and heaps of drinks. then we got silly and thouhgt we could have scotch and beet juice, wine and stawberies, baileys and pobiotic yogurt. tomorrow night should be a good night. certianly a lot of fun celebrating life.

hugs,
Pete

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i am soooo happy for you! i have been hoping you would be posting soon. it is wonderful that it is going good for you & and you still have that outstanding attitude! you better really celebrate friday! will you be going home for the holidays?
hugs
judy

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

going home for the holidays is my dream, subject to doctors orders, its possible, just weighting on results and logistics of doing the vaccine's. the party tonight will be fun.

hugs,
pete

ps did another whole body hyperthermia, got up to 39.8 degrees, my heart rate is the limiting factor, they won't use beta blockers on me, as the rate will go to low after. but a good hyperthermia result with vit c and other goodies being infused. the key point is to do it with 24 hours of prof vogel chemo embolization. i slept most of the arvo, they give you some ativan on the drip to relaz you, it works a teat. also had a good sleep tonight as well. another great day in the serch for a therapy thats right for me and wrong for the tumours.

pps hyperthermia log with 24 hours vogel
https://docs.google.com/open?id=0B10BiJHPKeH8VUVoZWV0ODljZTA

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Pete, So happy you are getting some postivie results... keep it up.. wishing you all the best and success..
Enjoy the Holidays..

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

thats kind of you, i appreicate the support.
i will find a way to enjoy the holidays, hopefully by going home. making new friends in germny and am exploring the countryside.
i hope you have a great day.
hugs,
pete

Annabelle41415's picture
Annabelle41415
Posts: 4409
Joined: Feb 2009

Sounds like things are really going well for you. So glad that you are so well attended to. Thanks for keeping us all updated too, you are going through things that most of us have never heard of. Wishing you continued improvement.

Hugs! Kim

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i am out on a limb in a sense.

gambling these therapies will be more effective than the conventional chemo offerings.

here is hoping. its more than hope, i will will these dam therapies to work, failure is not an option. i am certain determination and effort and taking calculated risks will get me over the line.

its exciting to be on the path least travelled, only one way to find out. I think i was choosen to push this particular part of the envelope, i have the finance and the dispostion to take these risks without regrets and share them for what they are, simply my unique effort to survive our common challenge.

of course i pray these therapies combined with metronomic chemo and all the immune stuff offer a better quality and quantity of life, and dare i dream "cure"

hugs,
pete

thingy45's picture
thingy45
Posts: 588
Joined: Apr 2011

Dream Pete and most of all Hope and then Believe. Mental power is a very strong power, I do believe in.
Will your self better and stronger and again Dream, Hope and Believe.
I have followed all that yu have done letter by letter and will keep on doin g that until we are all cured.
Dream the Cure, Hope the cure and Believe the Cure.
Hugs, Marjan

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

dear marjan,
words of thanks and gratitude are not enough. I feel cared for and I feel appreciated this is what our community offers us if we are open. its the ultimate measure of strength to admit how vulnerable we are, thats a strange paradox. to offer and accept support is so healthy.

i felt good waking up this morning, another 12 hour day of infusions looking out on the black forest shrouded in fog. I read your reply and I feel cured and view these treatments as the steps in a physical healing process that also reflected in my state of mind.

its a dream we all share. thanks again for sharing your dream. shared dreams of cure are incredibly powerful.

hugs,
Pete

ps cure now thats a good 4 letter word if ever there was one!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Congratulations mate!

Brenda Bricco's picture
Brenda Bricco
Posts: 561
Joined: Aug 2011

:)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

whats the point of a cure without love? just my opinion.
they are both great words. and both have 4 letters and i can spell them. which will make phil happy.

hugs,
pete

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 474
Joined: May 2012

I'm glad your doing well. How long is this treatment for? When will you get a scan? I'm glad you get to go home for Christmas, then you have to go back? How is your house doing, anymore hoarder going on? I will be thinking about you hoping everything can lead you to NED.
Sandy :)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

how long, until i am cured or sane! and the money lasts.

next scan around 14dec germany.
also getting free pet and angio ct when back in sydney mid january.

starting therapies say 1 feb, its flexible, i want to get a round the world fare and see japan, africa and south america on this circumnagivation of the globe.

I am seeking to be NED and its a treatment goal, but all I want now is peace of mind.

the family is living without my physical presence but they know I love and care for them. not much has changed in the family home. hoarding is a tough illness. my wife has had space from the cancer and space from me. still not much space in the house, but its beyond my control here in germany. the only space thats been made was by physically removing myself. thats kind of ironic.

smile its a wonderful day.

hugs,
Pete

relaxoutdoors08
Posts: 521
Joined: May 2011

Pete,
You continue to amaze. You have my admiration and prayers. Thank you for sharing your journey. We were diagnosed about the same time so I continue to follow your progress. Prayers,
NB

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