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

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
edited September 2012 in Colorectal Cancer #1
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
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Comments

  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    hey pete
    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
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    I am sorry you are having to
    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
    fatbob2010 Member Posts: 467 Member
    Well Poop
    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
    jjaj133 Member Posts: 867 Member
    Pete, I wish you the best
    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
    annalexandria Member Posts: 2,571 Member
    I know this is a hard road to have to take, Pete...
    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.
    Kenny H. Member Posts: 502 Member

    I know this is a hard road to have to take, Pete...
    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

    As much as chemo sucks its
    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
    k44454445 Member Posts: 494
    good luck
    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
    relaxoutdoors08 Member Posts: 521 Member

    hey pete
    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

    JBG Good to see you posting
    Happy to see you posting online. Sending prayers.
    NB
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    Pete
    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
    Hooley Member Posts: 156
    Hang in
    Chin up, your doing great. Combo of chemo for me plus natural, plus infrared sauna a bonus! Prayers and blessings in abundance. Sue
  • Helen321
    Helen321 Member Posts: 1,447 Member
    Hang in there Pete. We have
    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
    lepperl Member Posts: 39
    You are in my thoughts
    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
    Brenda Bricco Member Posts: 579 Member
    Hi Pete, I am so sorry to
    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
    Cathleen Mary Member Posts: 827 Member

    Hi Pete, I am so sorry to
    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

    Pete,
    I am sorry that life


    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
    SharonVegas Member Posts: 189
    Thanks for the update Pete.
    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
    hippiechicks Member Posts: 509
    Good luck to you Pete...my
    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
    Dyanclark Member Posts: 296
    Try everything
    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
    herdizziness Member Posts: 3,624 Member
    Pete
    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
    tanstaafl Member Posts: 1,303 Member
    the whole enchilada
    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
    lilysu Member Posts: 9
    come on
    i'm sorry to hear that. Come on. God bless you.