Plans are shaping up....

idlehunters
idlehunters Member Posts: 1,787 Member
in Colorectal Cancer #1
Wow.... major change up. My guts have politely requested me to kick CPT-11 in the booty. No more diarrhea can be tolerated so I stopped all chemo ..for now. I told Onc I want to move on to another option. I have a few I am going to do actually. I see a new doc next week who is the head of thoracic surgery at St. Louis University. I want to have VATS if I am a candidate. I spoke with him yesterday on the phone and all sounds very promising. I wanted to start with my new TCM doc this week but have to put that on hold because I have to refrain from herbs, supplements, vitamins...everything..he wants NO NOTHING being ingested until after surgery. Problem is.... I have a lot of travel plans scheduled in October...plane tickets all ready bought and cannot be cancelled. This is what will be discussed next week....WHEN...I don't want to have to deal with a lung recovery when I am trying to get my drink on with the Dallas Cowboys or my buds at CP9. I mean..c'mon.. I do have prioritys! LOL.

I have decided I am going to give Vectibix a try. It's basically the same thing as Erbitux. Onc said if I chose Erbitux it would be weekly but Vectibix is an injection every 2 weeks. So I picked that one. Since this is not a "chemotherapy" I can take it WITH surgery. I am starting this tomorrow. Who knows.... maybe the Vectibix will work miracles on the lung mets and I won't even need surgery! That would be the best case scenario..... however...we must always keep plan B in our back pocket...and that is the VATS....and after that I will incorporate TCM.... then time will tell.

So... Thats whats on the table right now..I'm kinda excited about it really. I celebrated by going out and buying new panties!! I mean now that I know I ain't gonna sheeeet these all up!!!! LOL!! I can't believe I am so friggin happy because now I am gonna have hair and clean panties!!! WOOHOO! LMAO! Downside..... I will have to deal with that pimple rash....SO WHAT???????????? Bring it on!

Jennie
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Comments

  • jjaj133
    jjaj133 Member Posts: 867 Member
    #2
    Good Luck to you Jennie!, i
    Good Luck to you Jennie!, i am so happy to "hear" you so excited.
    All good things to you my friend.!
    Hugs,
    Judy
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    No Need to Buy New Panties...
    ....you never seem to stay in 'em for too long anyway - always whippin' 'em off!

    LOL!

    -Craig
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #4
    Sundanceh said:

    No Need to Buy New Panties...
    ....you never seem to stay in 'em for too long anyway - always whippin' 'em off!

    LOL!

    -Craig

    i Pray you are accepted for VATS Jennie !
    Sounds very good!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    Rash ? you are in the age of youth rash so what's the matter ?
    LOL!
    hugs!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #6
    Glad to hear of your plan
    Jennie,

    I'm glad to hear you're being so proactive and have a plan!
    Re. the pimple rash from the Vectibix... get the onc to start you on an antibiotic before your first treatment. Back when I had six weeks of Erbitux in 2008 (before we knew I was kras mutated- it was right when they were first starting to test for it), I had a horrrrrible acne rash & I didn't get started on the antibiotics until after I already looked like a monster. I still show the acne scars and rough skin from it today & I had always had really smooth nice skin before then. I know we don't want to be too vain, but if it can be prevented, it should be.

    Best wishes, girl!

    Lisa :)
  • lauragb
    lauragb Member Posts: 370 Member
    #7
    Glad to see you back up.
    Glad to see you back up. Goodluck with all your plans and travel plans as well.
    I'm happy about your new undies, a nice pick me up.
    By the way, what is VATS? Just curious.

    In balance and light
    Laura
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #8
    Treatment
    So glad that you are going to try something else especially when you've had so much problem with the bathroom issues on this one. Wanted to wish you good luck tomorrow on your new treatment and hope it kicks butt for you :)

    Kim
  • buckeye2
    buckeye2 Member Posts: 428 Member
    #9
    I sure wish I was going to
    I sure wish I was going to that Chicago event. This is a fun group. Lisa
  • buckeye2
    buckeye2 Member Posts: 428 Member
    #10
    I sure wish I was going to
    I sure wish I was going to that Chicago event. This is a fun group. Lisa
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #11
    just goodluck and may the force be with you
    I just hope whatever you try get results.
    i got some tcm brewing on the stove right now.
    for what its worth have faith for the sake of faith and be positive.
    i am trying to be.
    hugs,
    pete
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #12
    our pre-op
    My wife's surgery on the para-aortic nodes went extremely well with some restrictions on supplements - no aspirin, vitamin E, controversially fish oil (there are papers that do support fish perioperatively), chondroitin, and grapeseed extract for 1-2 weeks, but she took a dozen+ of others, including vitamin K2 as menaquinone-4 (both surgeries, 45,000 mcg for #1, 90,000 for #2) that restores some steps in clotting.

    We have continued high dose cimetidine, vitamin C and vitamin D3 perioperatively in both of her operations to reduce surgical immune suppression, plus the PSK clone for the 2nd surgery. In the case of vitamin C and K2, to also promote wound healing while still on immunochemotherapy (last dose 24 hr before surgery, medical trial papers actually mention her mild chemo as close as 3 hours pre-op). The surgeons for the 2nd surgery prescribed 800 mg of cimetidine every 6 hours the day of surgery for prophylaxis of reflux aspiration (3200 mg instead of her usual 1200-1600 mg), instead of the usual proton pump inhibitor( after being acquainted with the extraordinary cimetidine anti-metastasis papers for colon cancer surgeries, and my wife's lack of uniformly expected metastases the past year).

    As for blood thinning and clotting, instead of fussing about each and every supplement, our surgeon did want the INR to be as close to one (1.0, ideal) as possible, and took a reading on thromboplasmin too. INR was 1.03 the night before and was being tweaked to hit 1.00 at surgery.

    This discussion is likely new and strange if not mind blowing to most surgeons, but sometimes one can get a hot shot techie.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #13
    tanstaafl said:

    our pre-op
    My wife's surgery on the para-aortic nodes went extremely well with some restrictions on supplements - no aspirin, vitamin E, controversially fish oil (there are papers that do support fish perioperatively), chondroitin, and grapeseed extract for 1-2 weeks, but she took a dozen+ of others, including vitamin K2 as menaquinone-4 (both surgeries, 45,000 mcg for #1, 90,000 for #2) that restores some steps in clotting.

    We have continued high dose cimetidine, vitamin C and vitamin D3 perioperatively in both of her operations to reduce surgical immune suppression, plus the PSK clone for the 2nd surgery. In the case of vitamin C and K2, to also promote wound healing while still on immunochemotherapy (last dose 24 hr before surgery, medical trial papers actually mention her mild chemo as close as 3 hours pre-op). The surgeons for the 2nd surgery prescribed 800 mg of cimetidine every 6 hours the day of surgery for prophylaxis of reflux aspiration (3200 mg instead of her usual 1200-1600 mg), instead of the usual proton pump inhibitor( after being acquainted with the extraordinary cimetidine anti-metastasis papers for colon cancer surgeries, and my wife's lack of uniformly expected metastases the past year).

    As for blood thinning and clotting, instead of fussing about each and every supplement, our surgeon did want the INR to be as close to one (1.0, ideal) as possible, and took a reading on thromboplasmin too. INR was 1.03 the night before and was being tweaked to hit 1.00 at surgery.

    This discussion is likely new and strange if not mind blowing to most surgeons, but sometimes one can get a hot shot techie.

    dear tanstaafl
    alot of your strategies i am noticing are covered in a big yellow book from the life extension foundation. its pretty compelling reading for me. are you using it as a framework by any chance ?

    i hope your wife is going well. it was your post on the mushroom that got me interested in them. they have a good range and seem cheaper than my aussie supplier.

    hugs,

    pete
  • geotina
    geotina Member Posts: 2,111 Member
    #14
    Jenie:
    You Rock. Taking charge, doing research, taking control.

    Hugs - Tina
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #15
    Jen,I only want to say that
    Jen,I only want to say that I am praying a miracle for you.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #16
    Fight for my love said:

    Jen,I only want to say that
    Jen,I only want to say that I am praying a miracle for you.

    Thanks Guys.....
    Thank you all for your well wishes and support. Lisa...thanks for the heads up on getting something for the rash AHEAD of time. I will definately do that.

    I started using an inhaler twice a day and it has stopped almost all coughing. I sure didn't expect that but man am I glad.

    VATS= video assisted thoracic surgery.... someone asked???

    I had blood drawn for CEA yesterday and was suppose to call for results today...I decided I don't want to know. Just more to think about so I am just skipping it. I will wait till next month after I have been on the Vectibix for a month.

    Jennie
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #17
    idlehunters said:

    Thanks Guys.....
    Thank you all for your well wishes and support. Lisa...thanks for the heads up on getting something for the rash AHEAD of time. I will definately do that.

    I started using an inhaler twice a day and it has stopped almost all coughing. I sure didn't expect that but man am I glad.

    VATS= video assisted thoracic surgery.... someone asked???

    I had blood drawn for CEA yesterday and was suppose to call for results today...I decided I don't want to know. Just more to think about so I am just skipping it. I will wait till next month after I have been on the Vectibix for a month.

    Jennie

    I had the VATS done...also laproscopically
    It was done Tuesday and back home Friday...about 7 weeks start to finish recoup. after the first 3 days it was ok...coughing sucked and the breathing machine sucked as well but I am well satisfied with the outcome...you'll be fine with it.......love ya, buzz
  • pluckey
    pluckey Member Posts: 484 Member
    #18
    idlehunters said:

    Thanks Guys.....
    Thank you all for your well wishes and support. Lisa...thanks for the heads up on getting something for the rash AHEAD of time. I will definately do that.

    I started using an inhaler twice a day and it has stopped almost all coughing. I sure didn't expect that but man am I glad.

    VATS= video assisted thoracic surgery.... someone asked???

    I had blood drawn for CEA yesterday and was suppose to call for results today...I decided I don't want to know. Just more to think about so I am just skipping it. I will wait till next month after I have been on the Vectibix for a month.

    Jennie

    Jennie- What surgery are you
    Jennie- What surgery are you getting?
    Do you have mets in lungs?

    Can't wait to meet you in Chicago!

    Peggy
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #19
    pluckey said:

    Jennie- What surgery are you
    Jennie- What surgery are you getting?
    Do you have mets in lungs?

    Can't wait to meet you in Chicago!

    Peggy

    Hey Peggy!
    I am seeing thoracic surgeon for VATS. I have a 1cm met in left lung and a 2cm met in right lung..... I stopped chemo 3 weeks ago(CPT-11 that stopped working) and started Vextibix today. I don't know if I am a candidate or VATS and if I am WHEN to do it is another problem. Something is telling me not to wait because CEA is rising and I don't want to lose that window of oportunity. Maybe the Vectibix will kick in and save the day???Can't wait to meet you either!!!

    Jennie
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #20
    pete43lost_at_sea said:

    dear tanstaafl
    alot of your strategies i am noticing are covered in a big yellow book from the life extension foundation. its pretty compelling reading for me. are you using it as a framework by any chance ?

    i hope your wife is going well. it was your post on the mushroom that got me interested in them. they have a good range and seem cheaper than my aussie supplier.

    hugs,

    pete

    Pete - re LEF
    Reading the LEF site certainly influenced my thinking, among a number of sites, authors and papers. There are overlaps and significant differences between the many parties concerning therapeutic nutrition and global medical practices. I have sought their advice for some things.

    We have used things that LEF CRC cancer protocols don't directly address for mCRC e.g. IV vitamin C, K2 MK4, UFT-LV, certain enzymes, or in higher doses, e.g. vit B3, D3, coQ10 while having serious reservations about things like high dose vitamin A. LEF deserves full credit on illuminating cimetidine and PSK for mCRC - it's a tragedy that every CRC patient is not automatically evaluated for a cimetidine and PSK recommendation from their day of diagnosis, onwards.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #21
    praying for you
    Good luck with it all!

    *hugs*
    Gail

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