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might be starting chemo, will know tomorrow, UPDATED no chemo hipec instead

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

I have been a bit down today, not usual for me.
It could be the doom and gloom from my chinese oncologist/herbalist.
He does alot of colorectal and shared some bad stories. He did say he will tailor a herbal mix to whatever chemo i go onto, if i do.

Had the most detailed consult, a few hours on and off with my top alt doctor while getting vit c.

so I have lost 7kg of muscle in 7 months. I attribute this to the vegan diet, maybe my implementation of it. they did the caliper test and bmi stuff, its pretty scientific.

so now I am on the ketogenic diet and trying to play catchup with muscle. the tip today for me is to have the digestive enzymes before the meal.

after the meal i will take a couple of stomach acid pills ie pepsin pci . basically the goal is to activate the enzymes in your small intestine, where absorption is supposed to occur and not have the enzymes activated in the stomach.

I have committed to starting ukrain therapy getting ready which has a benefit around surgery. The trick with ukrain will be to get it hyperthermically, which believe it or not is an option now i have a far infared sauna.

But we alt doc and I decided to wait until I see hipec surgeon 8am tomorrow so i will know the result of the consult and if i am eligible for hipec. I am bringing a dear friend along as well as wife as this consult will be a biggy.

If have been contemplating chemo which was suggested 5fu/avastin , now having seen pepe and others results. i have some comfort that whats been recommended might indeed work.
so after tomorrows consult, i will know where i am going with the surgery.

at 5pm i see another oncologist who is at my local hospital, where the hipec professor is located. so i will see his advice and go from there.

To me it seems to come down to chemo strategies, 5fu/avastin or folfox/avastin, basically the softer versus the hard option. with advantages and disadvsantages.

its a gamble either way, still keeping all the healthy options going but adding conventional soon i think.

the responses to my enquiries in india and germany have been dissappointing to date, ie not enough detail and non existant. so if they cannot reply to an email from a customer, what care can you expect as a patient.

just wanted to share where i was at.

its been 18 months since i finished folfox. I still have the platinum.

I spoke with an alternative guru and her advice was to call her after the surgeon consult , in a nutshell i have to play hardball either hipec or gersin. ironically this alt guru knows of a personal hipec success, now my alt doctor today shared the fact that he has not treated a successful gersin patient. not saying anything, other than thats my alt doctors comment. so i am inclided to surgery if its an option for me.

I have a few possible treatments I can access, tomorrow will be a great day.

hugs,
Pete

ps maybe all the natural therapies need a little help. the survival boost adding avastin to the 5fu mix is complelling.

UPDATED

so i saw the top hipec surgeon professor morris, he has done 650 hipecs, he is doing the workup ct scan and i may formally be on the list as of monday, god willing.
he suggested my curative odds were 50% lasting 5 years and the other onc this arvo said with chemo 5% for peritoneal disease.

so the focus is on gaining weight and and getting ready for surgery.

I walk outside of the prof office, looked up at a beautiful blue sky and some tress in the big hospital grounds and almost cried.

I also started ukrain today. i got my cea back 81, so its up 14 over 5 weeks ouch! still no chemo pre op, they will likely fast track me.

godbless us all, i have more empathy for my stage 4 friends here now. sorry i have been so gunho about all the alternatives, not saying they all don't have merit, but the reality of chemo is challenging for me. i will have 6 months post op chemo likely irenotecan of folfox.

I still have to be formally accepted, but i at least got my foot in the door.

hugs,
pete

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

sorry you may have to go down the chemo road again.i admire your strength and courage to push yourself the way you do.chin up and put those boxing gloves on we got to do what we got to do to fight on...Godbless...johnnybegood

relaxoutdoors08
Posts: 521
Joined: May 2011

Happy to see you posting online. Sending prayers.
NB

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am sorry you are having to start chemo again. I will keep you in my thoughts and prayers for you appointment with the HIPEC surgeon and other doctors. Build up those muscles...the HIPEC is a long hard recovery.

Alex

fatbob2010's picture
fatbob2010
Posts: 397
Joined: May 2012

Pete, you strike me as having a very discerning personality that will lead you to the best decision for you and your family. To be sure Pete these are hard choices. Please let us know how the HIPEC consult goes. ((HUGS)) and prayers...Art

jjaj133's picture
jjaj133
Posts: 857
Joined: Mar 2011

Pete, I wish you the best and will be praying for good results.
Keep your fighting spirit going, it helps the rest of us too.
Hugs,
Judy

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

and I'm sorry for that. Chemo does indeed suck. But if it can save your life, as it has others on this board (full disclosure: not me, chemo hasn't worked for me at all), then it's worth giving it a shot. Maybe it would help to focus on the idea that all things in this world, including chemo drugs, are made up of ":natural" components, the basic elements of life that comprise everything. I think a lot of us tend to visualize chemo as poison, and I'm not sure that helps. When I was doing it, I tried to use positive imagery for the medications going into my body...didn't make it any more effective, obviously, but it did make me feel better about the whole process. Hugs! Ann Alexandria

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

As much as chemo sucks its worth it in my opinion mainly becuase it WORKS.
Esp if your gonna get some Avastin, expensive but its near a wonder drug. You will be guaranteed positive results with it. Good luck Pete.

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

what ever your decision is i wish you the best. i agree chemo sucks but it does work. i know from reading your posts that you will research the info & form to a good plan. keep your chin up!!!
hugs
judy

relaxoutdoors08
Posts: 521
Joined: May 2011

Thinking of you. Sending Prayers and positive thoughts. Tai Chi and Gigong are part of a good plan with chemo. We are here with support.
NB

Hooley's picture
Hooley
Posts: 153
Joined: Aug 2012

Chin up, your doing great. Combo of chemo for me plus natural, plus infrared sauna a bonus! Prayers and blessings in abundance. Sue

Helen321's picture
Helen321
Posts: 783
Joined: May 2012

Hang in there Pete. We have to try whatever works and just keep moving forward. I don't know why they even tell you statistics because it's not what you need to hear at the moment or why people tell these horrible stories. I've just started telling people to shut up with the horrible stories already. People are afraid to talk to me now=) And the last person who told me he could get hit by a bus tomorrow was told that if he kept talking, I could make it happen! Got to keep the sense of humor. Prayers from NY on a very beautiful evening. And kudos for getting your wife flowers.

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

Best wishes to you and your current plan. I have a really good feeling about HIPEC. I have begged for it because I think it will reach all the affected nodes in my peritoneum. But they won't do it until I have a peritoneal mass they can remove. They tell me it won't help the nodes but I think it will. If they only do it if you have a peritoneal mass then how do they know. I so hope this works out for you. Thanks for all your complimentary treatment updates. It really triggors me to to more research. We are going to beat this thing! I know it!
Lori

Brenda Bricco's picture
Brenda Bricco
Posts: 556
Joined: Aug 2011

Hi Pete, I am so sorry to add you to the stage lv list, I just didn't want that for you ( for anyone). I for one, do not hold anything against you for doing all you could to try to avoid where so many are. I think we all get caught up in the desperation of all this and honestly you can say you gave the "alternative" a try - you gave it your all -no regrets. We are a family here and families support and care for each other. I will pray that you get the treatment that you are shooting for. I so know what you are talking about when you walked out of the building and wanted to cry; I have had many of those moments. This cancer has brought me to my knees too many times.
GOD bless you Pete.
Brenda

Cathleen Mary
Posts: 584
Joined: May 2011

Pete,

I am sorry that life is so difficult for you right now. Many on here have benefitted from HIPEC and you can, too. Go ahead and cry; you have certainly earned a good cry! Know that you have a lot of people pulling for you with prayer and good wishes.
Hugs,
Cathleen Mary

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

Thanks for the update Pete. I hear good things about HIPEC even had a consult for it but alas, it was not to be for me. Keep smiling and keep us smiling :-)

hippiechicks's picture
hippiechicks
Posts: 330
Joined: Sep 2012

Good luck to you Pete...my thoughts and well wishes are with you!

Chemo does suck...positive thoughts and lots of strength to you!!

Dyanclark's picture
Dyanclark
Posts: 258
Joined: Apr 2012

You have to try everything. My husband just finished 5 mos of Avastin with Oxi. The last treatment was just Avastin. He has a CEA of 1.9 after the chemo. He also had to have surgery to be on a bag due to scaring from Radiation, but biopsies were all negative for live cancer.
I admire anyone who can do all these treatments, I dont think I would have the fight to do them. LIFE IS SO PRECIOUS KEEP GOING

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

I'm glad to hear you are a candidate for the HIPEC and that you can have it soon.
Am thinking of you, keep your chin up, get that weight up a bit and keep on exercising. Got you in my thoughts,
Winter Marie

tanstaafl's picture
tanstaafl
Posts: 970
Joined: Oct 2010

If there is one thing that unites us here, it is the collective faith in surgery. Whether curative or not, "just" getting the tumor load down is a big deal. More than regular medical practices admit, else there would be fewer "inoperables".

The major issue I see around surgery is prophylaxis with some minimal systemic chemo, nutritional and immune support. My wife went to her surgeries pumped up over the previous weeks with vitamin B's, C, D3, K2, coQ10 and PSK, cimetidine plus some other repair and support nutrients in unusual quantities. Some disagree with this on the solid basis of their lack of experience, any data and other fundamental points. I get depressed here seeing how few get adequately prepped for surgery, where for well over half the recurring IIIs and IVs, I think the difference could be measured in years.

The second surgery my wife additionally went with low dose 5FU and tegafur in her veins, similar to a number of successful Japanese perioperative chemo+surgery studies with 5FU or tegafur. Of course, ordinary western-trained surgeons have a hiccup or meltdown over this; my first experience was an MD Anderson trained thoracic surgeon that had finally said yes to surgery after managing to turn around a first "no". However, every medical body was placing bets over where and when she would catastrophically metastasize (before or post op), so wound repair with anti-angiogenic chemo became the name of the game. Fooled them all, she heals faster and cleaner. 16 months later she's still not metastasizing, even though something clearly wants to.

Best of luck for Pete. Pump, cut, clean, then maintain.

lilysu
Posts: 9
Joined: Sep 2012

i'm sorry to hear that. Come on. God bless you.

jen2012
Posts: 1208
Joined: Aug 2012

Good luck...I pray all goes well. I'm sure it will. I bet your other attempts have slowed things down. Just keep moving forward!

jen2012
Posts: 1208
Joined: Aug 2012

Oops....repost several times!

jen2012
Posts: 1208
Joined: Aug 2012

Oops

jen2012
Posts: 1208
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Oops

jen2012
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Oops

toyfox's picture
toyfox
Posts: 148
Joined: Apr 2011

Our thoughts and prayers are with you.
Keep on fighting.
Hugs...Linda/Andrew

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Annabelle41415
Posts: 4275
Joined: Feb 2009

Sorry that it has come back. Wishing you the best outcome with the upcoming procedure and if you need treatment in the future hoping that goes well for you too. Hope that you can gain some weight and build yourself up. Thinking of you.

Kim

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Hang in there Pete. You have a plan now... Focus on gaining weight and muscle. Hopefully they will fast track your hipec... So glad to hear that your surgeon has so many under his belt. It will go well... One foot in front of the other.... All will be good. It is a long recovery after the shake and bake but this is what you need to do.

Alex

abrub's picture
abrub
Posts: 1532
Joined: Mar 2010

Extra weight is your friend now, as surgery/HIPEC will take a lot from you. You need physical and emotional reserves. However, it is an effective treatment.

I'll be thinking of you and cheering you on!
Alice

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

we will find a way. this is a chilling twist to me stage 4 story.

so yesterday as a fluke i was interviewing a nurse/house keeper. i have asked in our local community for domestic help, friends and neighbours have been tremendous. now all this was just before i knew hipec consult and the opportunity for surgery. it was apart of the getting the affairs and house in order process.

so the nurse who turns up, the same day as my positive consult with doctor morris, well she knows prof morris, she was managed the after hours mobile at this big hospital. she knows the issues with peritoneal mets as said 2 years best was her experience. she also said prof morris is a good man. i like to get supportive positive feedback regarding surgeons and doctors, even if its just an opinion. the recommendation was unsolicited. but it builds my confidence.

her advice is that i won't make it if i don't leave the family home due to anger and hoarding. her view was based on a 5 minute discussion with my wife.

I have mentioned my wifes ocd hoarding before, but not often.

in epigenetics and in the alternative and now in the conventional i am getting the message its the environment. so now the home environment is crucial.

I have been with my wife 22 years, now the last 2 years with colorectal have been an extra challenge for her. for us all in different.

the advice i have to leave her for even 6 months to convalese and cope with irenoteacan hard core is stressful in itself.

in my heart i cannot leave her or the kids at this stage of my illness or my life. i don't want to exist in a ground floor unit on my own. to lonely, but yes some pluses.

tonight was the last day of the school term, the kids principle took the kids home. she stayed and cleaned out the kids room to 8pm. my son has a bed to sleep for the first time in 6 months. the kids helped the principle, who is gifted and respected by my wife. all the bags of rubbish were removed after serious protests by my wife. if i had done this I would have been assulted by her, we are not allowed to throw anything away. life with a wife with ocd hoarding has its challenges, no offense but i find stage 4 easier to deal with at an emotional level anyway.

what i am sharing is a reflection on the backdrop that our cancer has on our families, this is just my story. so my walking and holidays are a form of escape from a difficult domestic environment. the kitchen is my battleground, i lost the war in the house along time ago, but i control the kitchen and bathroom.

the big issues of my wife and kids future with her illness and its classed as an illness, well is uncertain, like all our futures. in many ways i am proud of how my wife and kids are going, despite the challenges around us. yes i have questioned the efforts i have put into integrative and functional medicine, but not in a negative way, just in a constructive way given the need i see in my family.

I took the kids out to thank them working with the principle between 4 and 8pm, my wife came as well but did not talk, she was really down. her words were "she was rape", not by me, but tonight by the principle. i however was really glad that my little 6 year old boy has a clean room and asleep in his bed, that all the bags of rubbish from the kids room have been removed into the principles car and taken away. you see if they are put outside, my wife would be going through them now and bringing back most of the "rubbish" because to her these things are precious memories not rubbish.

just another day in the colorectal journey, my journey. the 1% mortality from the op is a wakeup. my asking for help, from anyone around me reflects the knowledge that i got an exciting challenge before me, but i will shoot for the 50% curative intentive op. they are nice numbers, and my alt therapies need some help.

doing all the hipec workup scans in 6 hours, i picked up my mri primostist liver scans this arvo. all the info is being presented at the radiological review meeting monday. i hope and pray i get on the list. i want this operation, but only if they ( the doctors ) support me for it.

yes i am going to sacrifice all my health on this very very big operation. I have many pluses, ironically my wife and kids are a big plus, the nurse/housekeeper who will be my "alice" from the brady bunch, and great health going into the theatre. its still a 4 week lead time likely 6 weeks, its also

if the home is not suitable for my convalesence then i have private health insurance and i will get an option close by. hopefully my wife and all the mum's from the school will have the house at a level thats healthy for me to comeback to. thats likely 10 weeks down the track and time will tell as craig says.

I went out and purchased 4 more ukrain viles, adding them to my vit c bag tomorrow. going to get the nurse to admister them for me, i will take them to the hospital and see if i can get them to slip them into a drip. google ukrain and surgery and cancer and read. its got some supportitive methods of action, i goto stop the seeds.

I also saw alt doc 3 my chelation expert, he has never heard of antabuse to chelate platinum. so i am using this based on alt doc 5 out of denmark and no local support. alt doc 3 just smiled and shook my hand. he said you are doing it all and your marker is still rising. the good news is alt doc 3 is a far infared sauna junkie, he smiled and nodded that an hour at 50 minutes twice a day should get the metals moving.

the stategy issue is now the sauna also contributes to weightloss as does the catabolic nature of our cancer. so it comes back to diet again, and ensuring ample calories, every meal with enymes to ensure muscle gain. especially given i won't be fed for 2 to 3 weeks post hipec op. its into the vein for dinner for that time frame. oh yum. glad i went 2 weeks no food from the low anterior resection 2 years ago, so i know the score.

i am still chelating like crazy, taking my supplements and juices. I figured I wanted to present the full picture here so the alternative therapies have a backdrop. you see all natural healing approaches talk about emotional healing. I have made a pretty good effort at the alternatives certainly given my resources and environment. I could have done a far better job in a more peaceful supportive home, but the reality is we implement these therapies in the real world, with real budgets and into real families.

I hope the scans tomorrow go well, i hope I get onto the hipec list, I am ready and willing to go at the drop of a hat, so who knows when. they have two patients preped for each surgery window, because after they open you up and do your tumour score, saddly they just close you back up and say no go. that why they have two patients on the burner. I do count myself blessed with our hospital system, its only 5 minutes to the kids school.

how lucky am i to have the best hipec surgeon in australia operating out of my major local hospital.

I also popped in this afternoon and gave onc 1 receceptionist a hug, we actually both cried. i explained the stats, she said onc 1 has not dumped you, just that you needed to see onc 5 who ordered the pet. now onc 3 is the hipec onc. are you getting confused well i am. but the time and effort in being real with all the people around me is helping. now alison is still the best receptionist in the world. I asked her for a few kilograms as she has been on a weightloss program. we just laughed because now i am on the weight gain program. she would have lent me a few kilograms if she could.

having caring doctors and friends makes this journey a positive experience. that includes all of you as well.

hugs,
Pete

ps my wife actually googled me herself, she read all your kind comments and suggestions. she was smiling when she told me this.
PPs tomorrow is a big day, its actually today. so i got to go to sleep.
ppps getting the nurse house keeper on board is essential to removing the strain from my wife, as all the help i provide soon will stop. it will also give the kids some practical domestic support. school holidays started today and it should be alot of fun.

Sundanceh's picture
Sundanceh
Posts: 4302
Joined: Jun 2009

I agree with you, Pete...that would be a difficult environment to live in, much less try to heal in. I've seen some of the shows on TV and I understand all of the feelings and emotions that you are emoting today.

It's truly tragic when things overrun your life to that degree...

And it's a shame that the illness bled over into your childrens's lives and forced them out of their beds due to compulsive disorders like that. I've seen it on tv just like you described...it's unbelievable.

We're busy clearing out my dad's hoarder house and have already thrown out close to 200 bags of trash...and there's so much more to go through and dispose of...as you say, mostly rubbish and unusable, very little of any value, intrinsic or otherwise.

And my mom is a compulsive hoarder...and her house used to drive me out of there so fast....just stuff stacked everywhere, in every corner and crevice...etc. etc.

Fortunately, I did not get that gene...when it's time for something to go, it's time.

On another note...

I told you that "weight" was not necessarily a bad thing not too long ago...there was a study that said overweight folks actually fared better than thinner folks with cancer, especially when nutrition became an issue...more reserves to draw from.

My corpulent ass is doing fine over 8-years later...gotta' be some truth there...

So, bulk up...if you were in Texas, we'd start you out on chicken fried steak with mashed 'taters:) ...with a side of organic green peas, and a hot, buttered roll, with some sweet tea...LOL! And for dessert, maybe a slice of southern pecan pie:) Or some Blue Bell ice cream with a coca cola or A&W poured over the top of it...to convert it to a float:)

Next day, we'd do some southern bbq...brisket sandwiches with some tasty sauce...some okra...and a helping of bananna pudding...ummm:)

We'll get something stickin' to those ribs:)

Anyway...

You know, it's hard, Pete...any way you cut it...cancer is not easy. I've tried to be your big brother and keep you in between the white lines and try and explain the things I've seen with the hopes that you would understand what I was trying to tell you one day.

I've realized all along that much like a thoroughbred, you and all of us "Must Run Our Own Race."

And I've patiently waited for certain conclusions to settle in and come to light for you...I've found it is always hard to understand another's perspective, until you find yourself smack dab in the middle where they were - or are.

"Time", Pete...always it is time..."Time is the Fire in Which We Burn..."

Time is the great equalizer...Time knows all...Time tells all...and Time decides all.

That's never gonna' change...ever...

I hope you get more time...one of my hopes is that one day, you will look up to the sky and think to yourself..."Sundance was really just trying to help me...I didn't understand then what he was telling me, but he really wasn't a bad bloke after all..."

And that's true, Pete...the seeds of personal growth are planted in the present - with the hopes that they take root and blossom in the future...your seeds may have just been planted with this post.

Patiently standing by...good luck, Pete.

-Craig

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Craig, No meal in Texas is complete without the jalapeno on the side.

Sundanceh's picture
Sundanceh
Posts: 4302
Joined: Jun 2009

You're so right, Kenny....even grilled:)

From NTX to STX!

-c

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

I love ya too big brother! just send me a few kilograms for a few months.
that slow rising cea over 11 months did take its toll in many ways.

what you said about weight, well it was in my mind today as i was at my onc's office, she was telling me to stop the vegan, to keep the kilos on.

As you said we all take time to learn, hopefully by our sharing and caring we can speed up the learning cycle so we get better results as a community. thats at the heart of all my alternative posts, the reality of our crc's persistent nature is frustrating but we have to be cool in the face of adversity.

sorry to here that hoarding has touched your life, the principle is from our local catholic school, while I was helping her, we discussed the poverty of the poor overseas and the irony the some in the rich western world are drowning in garbage.

life is magic despite its challenges, sometimes I loose sight of it, but not for long and not when we have so much support here. i have always known you were there, my friend. I have thought of your challenges this week while i have been racing between doctors and hospitals.

I never thought you were a bad bloke, ok we have differences of opinion, who doesn't. but what unites us, is far greater than our differences. thats true of all of us here.

I just pray i wakeup tomorrow, and have sweet dreams tonight. ok getting on the hipec list would be a nice birthday present, i did not get much. its up to the doctors now, i have done my bit.

I loved the time stuff, its the moments that count, there goes another one. precious like a drop of water in the ocean or a tear in the rain.

be well my friend!

hugs,
Pete

ps i called my wifes old shrink today, she also said get of the home, when we talked about the kids, she said the hoarding is not genetic, that was a relief. she actually said arguing is what harms kids the most. so i take some solace in the fact the my peaceful acceptance of my wife's illness, like my own has had the kids best interests at heart.

pps and yes giving my wife the business for these last years was well an extra challenge that she could not cope with. i could have been more assertive and just sold our business when i said thats what i wanted to do on 21nov11 when the cea started to rise. but my wife insisted on keeping it. as our stresses increased with my illness, and the business so did the hoarding.

ppps as the house is being cleaned out hallway by hallway, room by room. i imagine so to is my cancer. my life revolves around my family, leaving them to heal is a question i defer, i hope the house is suitable for me post op. sadly most of the junk is ground floor, where i need to live post op.

janderson1964's picture
janderson1964
Posts: 1647
Joined: Oct 2011

Pete i am sorry that i havent been supporting you through your recurrence. I stayed away from the forum for selfish reasons. All the bad news was really effecting me. Imagine my shock when i came back to the forum and heard about you. I was devastated. I felt sick to my stomach for over a day after that news. Anyway i am here for you now. You are in my prayers everyday. You will win this next battle because you are fighter and very passionate about it. Keep doing what you are doing.

lauragb
Posts: 368
Joined: Aug 2011

Pete, Know that I am sending light and love your way. I am sorry for what you and your family are going through. It is hard to see the effects on family which we can't control, working so hard to keep our own selves together.

About weight, I am skinny and I found it to be a problem during my treatment. At one point, even knowing what I've read about sugar, I went on an ice cream binge, eating some every day until I had gained 12 lbs. The smoothies just didn't get it. Anyway, I'm just mentioning it as a way to gain that worked for me, even though I know many don't recommend it. I want you to get heftier and get that surgery!

Keeping you in my woods meditations.
Laura

Cathleen Mary
Posts: 584
Joined: May 2011

So sorry for all that you are going through. I am praying that you are accepted for HIPEC. Praying for your family, too.

Cathleen Mary

janie1
Posts: 753
Joined: Apr 2011

Praying for you, Pete, that you are able to have surgery and that the path smooths out. The uncertainties are the worse....hope you will get plenty of love from your community and things get easier and calm all around you.

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

I am praying also for me, for us all
I had an anguo CT at the hospital all day.
I will know in a few days.
I have my hopes on surgery as well as my alternatives.
Hugs,
Pete

ron50's picture
ron50
Posts: 1290
Joined: Nov 2001

Hugs To you and the family,Ron.

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

never a dull moment, whats a man to do. i am looking a cheap flights to germany, its school holidays and the blackforest sounds like fun. they have lots of hot thermal spas in a town called baden baden.

I tried selling the family on ebay. stage 4 dad, hoarding mum and amazing kids. could find no buyers, so i am stuck with my amazing family. who wanted a boring normal life, wife anyway.

if i order a skip bin for the rubbish my wife will kill me. her words. now that solves my cancer problem.

she is making me a juice right now, she looks pretty good.

decisions, decisions, decisions.

have you heard of grace gawler on the gold coast ? i might pop up, or at least call her, she runs cancer center tours of the german clinics.

hugs,
Pete

ps from a german doctor re Trifunctional antibody Removab

Thank you for your query regarding treatment options at our clinic. Having looked at your results we would make the following suggestions:-
A course of treatment (x3 systemic doses) of the tri-functional antibody Removab would likely be very effective. This is a new type of antibody which causes a rapid and significant immune response against the EpCAM receptors, which are highly expressed on gastro-intestinal tumour cells. This causes rapid killing of tumour cells, together with side effects much like a bad flu – aches and pains, fever, headache etc, together with elevated liver enzymes and CRP. We are very experienced with this and can manage this supportively. Another benefit of this treatment is that it activates an ongoing T-memory cell response, stimulating and targeting your immune reaction to the tumour cells much like a vaccination. It will get at the tumour cells wherever they are. Other options would also include low dose chemotherapy in combination with whole body hyperthermia as well as immune stimulation. We always provide a comprehensive supportive program as well. The tumour cell count is not too high, but given the rising tumour markers and the PET result, it is important to intervene soon. We would be happy to send you a cost estimate.

http://www.bionity.com/en/news/125207/trifunctional-antibody-removab-from-fresenius-biotech-awarded-galenus-von-pergamon-prize-for-drug-innovation.html

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

I just love you and your humor. I'm so suprised that no one would buy your family on Ebay. You can buy almost ANYTHING there. Probably Elvis Presley's spit if you were looking for it.LOL

Seriously though, I hope this hyperthermia treatment is beneficial for you if you choose it. I do remember a fellow here in Arizona traveling to Germany for this for an inoperable brain tumor and his treatments were showing success. This was a few years ago. Unfortunately, the news didn't do a long term followup on him, so don't know the final outcome.

Best of luck and love,

Wolfen

P.S. What happened to the Deathcap Mushrooms? Just the name sounded scary to me.

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

humour is my number one weapon against the tumour.

deathcap is on the way, i might get some monday. its a great name, especially if it saves me. the headline will be saved from death by death cap.

we all got our heavy crosses to bare, and bare them well we do
!

for me a smile is the easiest way to life a heavy heart.

and we got plenty of heavy hearts here with the challenges this illness gives us and our family and friends.

godbless you and johnny also and all of us.

hugs,
Pete

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