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Thanks for the prayers and support, some good news to report from the black forest

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

maybe magic happens in the black forest, maybe magic happens when we have faith, pray, get good medicine and experience unparalleled care and support.

The road to good health has many turns and twists, nethertheless good news is worth sharing. especially what i hope is significant tumour reduction without hardcore chemo.

I count myself blessed and am just grateful to god, my friends and my doctors and myself.
So far so good, time will tell, but at last a good cea result. this is the first substantial reduction and its almost been a year since it started rising.

I had a few glasses of healthy red wine and we were singing and dancing at a spontaneous xmas party last night. I was celebrating feeling well and i did not even have these results yet!

today I got my second german cea result. my cea dropped from 1779 to 49 in the 7 weeks i have been in this german clinic.
its an excellent result and my doctors are very happy. I am going to celebrate at the
caracalla thermal baths and sauna.

its snowing here and its beautiful, I am driving 7 hours to duderstadt for dendtretic cell therapy starting monday that goes for 4 months aproximately.

I am also flying home to sydney to see the wife and the kids for 7 weeks on 17 december for xmas. so I have many reasons to be happy.

I hope everyone enjoys their weekend, its not often i have had such good news to share. I still need to confirm these results back home with scans and bloods, but these are very positive indications.

hugs,
Pete

Sundanceh's picture
Sundanceh
Posts: 4410
Joined: Jun 2009

:)

very worried husband
Posts: 87
Joined: Feb 2011

Enjoy!~!!!

annalexandria's picture
annalexandria
Posts: 2482
Joined: Oct 2011

That must have really put you in the holiday mood, Pete. Very happy for you! Ann Alexandria

Brenda Bricco's picture
Brenda Bricco
Posts: 572
Joined: Aug 2011

Keep dancing! :)

herdizziness's picture
herdizziness
Posts: 3647
Joined: Apr 2010

Celebrate indeed!!!! Congrats!! Happy dance time, and glad you are going home to see your family.
Winter Marie

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

i am very happy for you! what great news & to top it off, you are going home for Christmas! your family has to be so excited too. i am like you in that i feel it is a combo of God, family, support from this board, support from friends & our positive attitude that makes a difference in our outcome. and you certainly are an upbeat positive person!!! thank you for posting & i still pray for you every day. now go enjoy!!!
hugs
judy

janderson1964
Posts: 2089
Joined: Oct 2011

That is great news Pete. You made my weekend. Dont celebrate too hard LOL. I hope you are still juicing and taking the alternative approach as well.

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

So happy for you -- enjoy your time with the family. What a joyous reunion that will be!

Hugs,

Dan

Semira's picture
Semira
Posts: 328
Joined: Mar 2012

thanks for that great news!

Enjoy Sauna (you should try the "Neptunbad" in Cologne) and Christmas at home.

A big hug
Petra

mukamom's picture
mukamom
Posts: 393
Joined: Oct 2010

Am so happy for you. Enjoy your holiday with your family! *\0/*

Angela

traci43's picture
traci43
Posts: 539
Joined: Jul 2007

A lower CEA and a trip home--No wonder you were celebrating! Congratulations and best wishes.

smokeyjoe
Posts: 1428
Joined: Feb 2011

:) :) Congrats!!! Great News!!!

Chelsea71
Posts: 1170
Joined: Sep 2012

Holy cow! That's a huge drop! Congratulations. Must feel nice to have some good news to share. Hope you have a really nice week-end.

Chelsea

Annabelle41415's picture
Annabelle41415
Posts: 4560
Joined: Feb 2009

Wonderful News. Glad you are going to be home with the family for Christmas.

Kim

lauragb
Posts: 370
Joined: Aug 2011

That's fabulous. Wine yesterday, sauna today sounds great!

More light.
Laura

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

Just because "winter" dared to remind me, i will do the nude happy dance under the full moon on a snow covered field in about 15 minutes, it will be a very quick dance, but it will happen. Life is meant to be lived.

I just had a midnight supper at the clinic after the most scenic hours drive through the moonlight black forest, but It could easily be called the white forest. Magnificent pines intricately painted with glistening white and on the snow covered earth glittering diamonds. I am not exagerrating, real diamonds, I stopped the car, got out and all I could find were ice crystals. maybe it was reflections of my cars headlights. I am still on cloud nine, but my happiness is mellowed by the awareness of our friends resting in peace, particularly Rick. We had/have peritoneal mets in common, and at time when Ricks health was deteriorating Cynthia ever so kindly messaged me all of sugarbakers details and made some introductions and explained the real home truths about peritonecomy. Understanding lets say the reality, not my surgeons sales pitch meant my German experiment became lets say more critical and valuable in my mind. Often over the last months here I have prayed the immune system gamble would work, as I have forgone the 5fu/avastin treatments offered back home. that have worked for many friends here. I put that worry out of my mind, and many others as well and focused on the good. Out of say 12 patients at the clinic, three are metastatic colorectal one is a yank who has done some removab before, is still going well and has been to md anderson and rejected point blank the traditional chemo route in favour of a more tailored, certainly more expensive and hopefully a series of treatments that offers a better quantity and quality of life. and of course we can dream of cure. I love that 4 letter word. My other colorectal soulmate, a sydney friend from the colorectal real life support group, turned up here a few days ago. so his removab is getting zero result so far, so while I am with high spirits, he is paying big money to try therapies, that appear to not be helping. of course plenty else on offer. but I put these other colorectal stories into my post to give you the picture as i see it. I am a good listener, the doctors can be discussing another patients problems in the infusion room and I intently focus in on the conversation and pull out all the juicy bits that might be helpful to me. I continue to learn from my doctors here and all the patients stories good and bad.

I still believe in juicing been having a beet, carrot and flax oil each breakfast. The diet has been healthy but with a range of meat but low carb.

Maybe my health is an illusion, it could be the removab, the chemoembolisation, the IV infusions ( secret herbs and spices ), the prayers, the meditation, maybe its love of a special friend, of you guys and gals. I am not worried about getting to the bottom of this jigsaw puzzle. I am just outlining the general factors that can synergise and hopefully end up with well a better prognosis than 12 months which is what my onc gave me 3 months ago. At least the insurance paid out.

I am betting about $15,000 US on the dendretic cell gamble to work with the rat and the mouse antibodies from removab. Yes they work together according to the experts I have "raped" thats my way of describing a medical technical discussion with say a phd nobel prize winner thats applied to my specific biology and needs. I will beg to be given a lab tour and met dagmar the phd who actually will supervise the training of my immature white blood cells. I will be infected with a special version of the new castle virus disease mutated for patients with colorectal and then a special peptide that generates apoptosis in the antigen presenting cells. its late and i may have got that summary wrong. but its so cutting edge I will possibly the first colorectal to try this combo. if it works great, if not when I am back here 2feb13 i will, get version 2 of my vaccine tweaked. yep its included in the $15K USD, they keep on tweaking until they get your immune system eating my tumour. now if thats not a good deal I don't know what is. sorry friends, but I'll skip 8 fortnights of chemo ( which equates to $16K USD ) for my own personal tumour destroying army, that works 24/7 365 days a year. I am optimistic, but certainly will not stop praying and researching. Ok I am still doing infusions, photophersis, supplements, juicing, diet and anything sexy that comes along that means I might be able to continue to post here about what a wonderful life we share. See my blog about dendretic cell vaccine for the most hardcore science you will ever read from doctor nestlehut courtesy of doctor copic my new and much admired oncologist. number 6, but whose counting.

Tonight at the caracalla thermal baths was uplifting. the highlight was the hottest wood fire external sauna. up to walking in the door I was slightly disappointed at the 99% male to female ratio. I figured friday night must have been "boys" night at the nude sauna. After leaving the freezing cold night, I sat close to the glass covered slow combustion oven. the flickering wood fire was mesmerising, as I started to warmup, sweat dripped and dripped. You can really feel your heart pound in these hot saunas, this one in particular. Its quite dangerous because then I looked around in the shadowy firelight and to my amazement I found where all the woman had been hiding that evening. I was surrounded and I was in trouble, they were glamerous by the firelight. maybe 10 or more. My hyperthermia training served me well, as I stayed in the sauna the longest. when I got out they were all gone. maybe i was dreaming and it was heat stroke. I hopped under a freezing cold shower and went back in for more sauna therapy. Thats one way to stimulate the immune system and possibly my cardio vascular system as well. I have been to the "caracalla" thermal bathes weekly since I arrived, if it was not a 2 hours return trip I would go more often.

I am sure the treatment plan will change tomorrow, after all its another day. thats what makes these therapies exciting and interesting to me. I cannot wait to get to duderstadt and start dendretic cell vaccine. I want a picture of one of my trained dendretic cells.

I will be off the air for sometime I suspect, as duderstadt is described as the ahole of germany, their way of saying the end of the known universe. A strange place for one of the most advanced immunology labs on the planet. see the blog about the nobel prizer winner last year.

hugs,
Pete

ps Tony MWNN you were 100% correct about newcastle virus disease, possibly the missing part of the puzzle is the special colorectal antigens. Thanks again for the heads up with regard to NVD. Doing all the reading months ago, meant I could agree to these therapies in a heartbeat now I got the money and time to do them and the option of death if I don't. How can I ever thankyou enough Tony, my prayers for you and your son are not enough. maybe I can buy you and your son a drink in duderstadt.

pps I am also still making maf314 gcmaf yogurt, maybe its helped, who knows. I will be quizzing nestlehut about gcmaf, the series of advance immune system tests I am excited about.

Cathleen Mary
Posts: 734
Joined: May 2011

So glad that you finally hearing good news...an early Christmas gift. Hope all continues to go well and that you will have a joyous time with your family over the holidays.

Cathleen Mary

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

Great news Pete! All of YOUR hard work is paying off :-)

Kathleen808's picture
Kathleen808
Posts: 2340
Joined: Jan 2009

Pete,

Thanks for the update and for sharing the good news. I left a cup with you (water in mine). Here's to continued better health and peace.

Aloha,
Kathleen

steved
Posts: 836
Joined: Apr 2004

Congrats on the fabulous cea result- I thought you were due scans in germany or are those going to happen on your return to Aussie ( makes sense to get the same scans free at home if possible!). Is interesting following your exploits and see how different they are from so many of our own protocols. Keep up th posts if possible in the hole of Germany,

Steve

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

dear kathleen, cathleen, sharon and steve,

I have let the cea result sink in, I will see about getting a german pet and ct and mri asap, then I will do some low dose chemo/avastin while home for dec/january and then do free sydney scans before I leave. If I did not push for these results and results I would not have them.

its good to look at all the angles.

hugs,
Pete

ps steve, a bit of a conflict between dendretic cell immune system and chemoembolization which was planned for 14dec. so the chemoembolisation has been shelved at present. You get the ct and mri included with the embolisation. I may get these done separately.

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