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Update on Pete's blog - more as of 2/15

Lovekitties's picture
Lovekitties
Posts: 2963
Joined: Jan 2010

Pete has made the following post on his blogspot yesterday:

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Ketogenic chocolate holiday and vena superior thrombosis

So a Dr told me today I got a thrombus and could die any second, that all my supplements are bs and that my therapy mix is science fiction.

It's still a great day to be alive especially when immediate death hangs over you like now.

Regrouping and praying and breathing...

Ironically I have never felt more alive or we'll.  If I go it's my time. If I stay well I play!

Thanks for reading. Love to you all especially my family and friends.

It's been fun. I made the kids chocolates today and a nice valentines present for ellie.

What a mess to get yourself into. Only me.

The silver lining is the cancers won't kill me . That's victory anyway.

God works in mysterious ways!

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Please send prayers and good vibes to him that this can be resolved.

Marie who loves kitties

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

it worries me that he says he's at home doing stuff for Valentine's Day.

Lovekitties's picture
Lovekitties
Posts: 2963
Joined: Jan 2010

Actually I believe Pete is in Europe again and this message may have been from Switzerland.

He had returned to do more and different threapies.

Sad that he is alone to deal with this.

Marie who loves kitties

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Sorry to hear the sad news.I wil send good vibes,and keep praying for him.

ketziah35
Posts: 1151
Joined: Jun 2010

Sending you good vibes Pete! 

Trubrit's picture
Trubrit
Posts: 1523
Joined: Jan 2013

He's not going down without a fight, and if he does, nobody could say he didn't give it his all. 

But, he's a fighter and I expect to see him post here soon with all the info on his latest dilema. 

Nobody can fight alone, so we're fighting with you Pete. 

janderson1964's picture
janderson1964
Posts: 1690
Joined: Oct 2011

Hang in there Pete. Been there done that. You will get through it.

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

God does work in mysterious ways. And I hope that we will all be oh so happy with his next moves. You have my prayers buddy. To overcome the immediate challenges and to have fun along the way.

Love and light to you.

Sincerely, Philip

thxmiker's picture
thxmiker
Posts: 1235
Joined: Oct 2010

I have told two doctors, "Obviously you are to uneducated to help me.  Please do not even think about billing me or my insurnce company.  You defrauded me when you told me you were a specialist."   Two did not bill me.  One did with a legal notice.  I sent a letter stating they did not know about new studies about my condition and to rethink their posistion of their legal abilities.   They stopped sending me letters.  lol

 

We are all tired of ignorant doctors!   Keep searching for a compassionate and educated Doctor!

 

 

You are always in our prayers.

Best Always,  mike 

tanstaafl's picture
tanstaafl
Posts: 977
Joined: Oct 2010

Whoa, that fin de siecle anti-supplement line was a surprise. How did that slip past?  Guess he wanted you to go cold turkey on supplements and anything that they don't administer.  What did that (Swiss?) clinic say to pre-qualify their integrative medicine and CAM expertise?  We can assume a vena cava thrombosis is probably port catheter related

Pete, so what're their recommendations?  Fragmin/Lovenox/etc  mg od/bid  monitored with PT/INR, APTT, fibrinogen, d-dimer, TAT etc frequently? Mixing heavy supplements and clot dissolving doses of heparins means somebody should do their homework or use real clinical experience to have a bullet-resistant dosing and monitoring plan. 

Comparative assessment of low-molecular-weight heparins in cancer from the perspective of patient outcomes and survival

Time to seriously air the different clinics' advice and bases of recommendation.  

 

 

   

 

 

Cathleen Mary
Posts: 602
Joined: May 2011

Pete,

I have lost track of where you are but I don't think it is home. PLEASE get treatment for the clot. Can your family come to you? I am not you, but it seems to me, being with people you love at this time would be consoling and helpful.   Traveling with a clot though is not a good option. 

Prayers that you get the care you need and time with your family and friends.

CM

Lovekitties's picture
Lovekitties
Posts: 2963
Joined: Jan 2010

Apparently, Pete is not getting any treatment for the thrombosis as he reports that he has flown to Frankfort to continue his "usual" treatments.

I am at a loss...will he tell his docs about the blood clot?  Does he think that it doesn't exist?

I don't know what to make of his decisions.  At least a second opinion on the clot would be worth doing.

I guess time will tell.

Marie who loves kitties

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

dear marie,

thanks for the kind thoughts and prayers.

i have had a relaxing weekend with a wonderful family. I am still alive and well and my blood is really thin from daily claxehan which was the advice from prof ruggerio at the gcmaf clinic , he found the port induce thrombosis. this is the 4th port.

tomorrow i pickup rental car and drive 3 hours relaxed up to dr nesslehut to start my most important dc vaccine, this one has to take out recurrence 3 2 new spot on the surface of the liver and old slowly growing lung mets. it also will be targeting the new diagnosed potential thyroid cancer.

Of course I will ask about the thrombosis, but its enough to kill me any second, but not bad enough to operate.

I am seeing prof vogel for tace and cryo procedure on tuesday, his radiological expertese should be illuminating. I have some gcmaf and be added to my tace cocktail and a gcmaf suppository . all aimed at stimulating an immune response when the tumours are all specifically targetted.

I am still taking my supplements and off labels and smoothies and doing enemas but reduced.

All these doctors are great AND GIFTED BUT GETTING THEN to work together is tricky. Thery all know about the thrombosis and for what its worth the tace is going ahead despite its existence.

The nature of this journey is constant challenges, but each is illuminating.

I have lung surgery booked in 2 weeks at doctor rolle. given the challenges i figure get whatever i can get removed removed.

So this is targetted treatment, tace and surgery and immunotherapies.

the immunotherapies are systemic and targeted, but i will know more tomorrow after talking strategy with doctor nesslehut.

the beauty of p2x7 vaccine is its not cancer specific, so the dendtritic cells will go for colorectal and thyroid cancer cells. if it works.

The thrombosis treatment is daily heparin injections.

 

 

sharpy102's picture
sharpy102
Posts: 339
Joined: Apr 2009

I'll be honest. I worry about you, Pete. I wish you were with your family. Somehow that would sound a relief to me. Knowing that you are with your loved ones, and that your loved ones at least see you on a daily basis. But whatever, I am not here to tell you what to do. I will be in the background wishing you strengh, and the very best!

Please take care!

thingy45's picture
thingy45
Posts: 583
Joined: Apr 2011

Rooting for you Pete, behind you all the way. Do what you think is best in the knowledge that what ever you do   we are here rooting for you.

You have accomplished so much already. One day at a time

Hugs, Marjan

 

 

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

Still alive and well. When the going gets tough the support is extra precious.

Had 11th tace and gcmaf direct inject right liver lobe this morning. 

My glucose is 240 which is liver stress from tace.  15 in insulin just inject here I go tumbling down.

The irenotecan.  Mytomycin and maybe even avastin as well as b17 dca do so are killing tumor cells and providing food and antigens for activated macrophages.

No guarantees and don't try this at home.

I love you all and if I live and get back into remission I will be very very happy.

I have ruffled a few feathers here and there and time is a great teacher.

Of course I still think these therapies have enormous potential and benefits.

Even today prof Vogel said most get here to late. Which rings true to me.

I do wish us all the best health whatever we choose.

It's the right choice. Because we made it.

My fate hangs on a billion decisions to be made by my white bloods cells.

The ball is there court. At the moment my dc are on holidays being trained to share the secret of finding any cancer cells using p2x7.

They will share that antigen info with other antigen presenting cells in the 3 days they live. See if I am immune suppressed no effect from vaccine. 

Enough rambling. If I do die it's not for want of trying and the thrombosis may stop my immunotherapy success but not the millions that will be saved.

Of course it would be nice if we make it somehow.

Hugs.

Pete

 

 

 

 

UncleBuddy
Posts: 669
Joined: Aug 2013

It's a fight for your life, so you do whatever you need to do. 

No judgment from me. We are all in this fight together. We learn from each other.

I'm hoping you can kick cancer's butt!

Lin

hippiechicks's picture
hippiechicks
Posts: 340
Joined: Sep 2012

Sending my very best to you Pete .. keeping you in my thoughts and prayers!!

 

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

how can something so small kill you so fast? thats what the doctors say. 

my tip is get an ultrasound after you get a port installed.

http://petertrayhurn.blogspot.de/2014/02/in-poo-cea-200-and-eviction-threatens.html

oh and cea 200, recurrence 3 is now a full blown cyclone

this will be my finest hour, hopefully not my last. might as well test immunotherapies out on something aggressive.

after all what choice to i have.

Trubrit's picture
Trubrit
Posts: 1523
Joined: Jan 2013

Good luck with everything you try. I hope it keeps you around a whole lot longer. 

tanstaafl's picture
tanstaafl
Posts: 977
Joined: Oct 2010

Hypothyroidism in patients with colorectal carcinoma treated with fluoropyramadines

We aim to keep my wife's fT3 above the lower limit value, TSH under 2, near 1.2, with desiccated thyroid.  Don't know what "optimum" fT3 is for mCRC. Doctors oriented toward natural medicine prefer fT3 value at/above the midrange for noncancer hypothyroid patients to feel best. There seems to be a surprising dearth of easy to find papers in the CRC area. 

 

tanstaafl's picture
tanstaafl
Posts: 977
Joined: Oct 2010

Hypothyroidism in patients with colorectal carcinoma treated with fluoropyramadines

We aim to keep my wife's fT3 above the lower limit value, TSH under 2, near 1.2, with desiccated thyroid.  Don't know what "optimum" fT3 is for mCRC. Doctors oriented toward natural medicine prefer fT3 value at/above the midrange for noncancer hypothyroid patients to feel best. There seems to be a surprising dearth of easy to find papers in the fT3-CRC area. 

Actually T4 seems to be the big question mark.

Effect of exogenous triiodothyronine [T3] on free thyroxine depletion and tumor response:  A compassionate care study.

Also an interesting paper, Table 4 has some fT3 values.

 

jen2012
Posts: 1212
Joined: Aug 2012

Tans ..can you further explain the thyroid issue?  In easy to understand terms?  My husband has been on synthroid for many yrs.  I went back and forth with his doc after his hospital stay to determine if dose needed to be changed since he lost a good amount of weight.   In nov these were his numbers:

T4. 11.2

Tsh. 11.83

T3 125

Free thyroxine in dec was 1.43

She increased his dose by 1 pill a week and wants to retest in a few weeks, but id like to better understand this before I talk to her.  The first link didnt work for me.

tanstaafl's picture
tanstaafl
Posts: 977
Joined: Oct 2010

...but hopefully you can find a doctor with a simple routine that resolves this well.   

 -------------------------------

Hypothyroidism in patients with colorectal carcinoma treated with fluoropyrimidines.   (relinked)

 -------------------------------

 ...My husband has been on synthroid for many yrs. 

With numbers like that TSH, and perhaps missing the very important fT3 reading, many formerly problematic thyroid patients might suggest that your doctor was stuck in the usual Synthroid (thyroxine, T4) orthodoxy rut.   A lot of unhappy thyroid patients languish for years on T4 pills and TSH readings.  Because different areas or facilities may use different units, it is important to include the units (e.g. Pmol vs ng, dL vs L) with each reading.

A patient driven movement for other thyroid diagnostics and treatment has arisen. Their monitoring is based around basal body temperatures, free T3 (fT3) and lack of symptoms, with expanded lab  panels if not resolved quickly.  The patient movements' tx materials typically start from desiccated thyroid tablets with 2-3x per day dosing and therapeutic nutrition.  

The T3-T4 cancer paper I linked earlier raises the question of T4 levels and cancer, with less T4 more T3 as a potential improvement, but the test patients did not include any CRC patients.

jen2012
Posts: 1212
Joined: Aug 2012

Thanks for the link and the info Tans.

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Praying things go well for you, Pete. I have so enjoyed reading your posts here!

 

*hugs*

Gail

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

http://www.australasianscience.com.au/article/issue-may-2010/matter-time.html

this explains what i am trying in some detail, some very interesting and heavy papers , the round table conference on my blog is definitely worth reading.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027086/

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

Pete, best wishes for you. Sending you light and love. From Phil in Michigan.

marbleotis's picture
marbleotis
Posts: 498
Joined: Mar 2012

Your journey is amazing.  Please take care of yourself.  You are always in my prayers. 

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

Thanks Phil and marbleotis and friends

 

Some great news tumours markers crashed fast.The pprayers are working .

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Yes,I'm glad the prayers are working.I will keep praying,and sending good vibes.Keep those markers crashing.

UncleBuddy
Posts: 669
Joined: Aug 2013

I'm praying that you have a full recovery. Keep on fighting.

Lin

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

Praise be to God! Sending more prayers your way Pete. Love and light and big virtual Hug!

 

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

My cea now 29 ca 199 also crashing.

10 days ago it was cea 204.

The mix of therapies covered blog. For me I have

Found a range of therapies free of systemic chemo disadvantages.

So my therapy success has been proven on 3 separate recurrences over the

Last 2 and quarter years.

How long. Well who knows.

 

 

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