sucky scan

Crow71
Crow71 Member Posts: 679 Member
edited March 2014 in Colorectal Cancer #1
Hey folks. I haven't posted much lately, but I read everything every day and I continue to be educated, inspired and amused by you guys.

My scan today totally sucked. My little band of bastards has mutated and Folfox and folfori are failures. All of the 10 or so liver mets increased in size by 30 - 40%. The few lung mets are still small. There are no new mets, and I'm not symptomatic at all - that's good. But these liver mets are really pissing me off.

The only good news is that I won't have to suffer through folfox anymore.

Kim and I are researching trials. There are a few phase 3 and phase 1 trials that might be good options. My onc is going to talk to his counterpart at Duke about their phases 1.

I'm also looking for a true TCM doctor in my area. I've got a few leads. (John23, rereading your blog has been helpful.)

SO **** damn **** **** ****!!! My disease just keeps getting nastier and nastier. I guess I'll have to do the same.

I hope you are all well.

Roger
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Comments

  • chicoturner
    chicoturner Member Posts: 282
    #2
    Roger, so sorry for your
    Roger, so sorry for your scan news. Don't give up. Trials are interesting and certainly will keep you busy. I am headed to SF tomorrow to meet with research doc about a new trial. Everyday, it seems something new comes along. Hang in there! Jean
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #3
    Roger
    G@d Damn it!!!!!
  • Kerry S
    Kerry S Member Posts: 606 Member
    #4
    your hat is in the creek again
    Roger,
    While your hat is in the creek again that’s ok. You’re pissed and damn mad.

    It is good to get mad. That keeps you from chugging on down to namby pamby land to get a little self confidence. You don’t need it anyway as you have Attitude and then some to spare. If you do run out, you can have some of mine. Old guys are full of BS and attitude. Hell, I am proof of that.

    You are doing the good research to find and you will a better way to beat this crap.

    By the way, I did an acid test of the reconnection today. I had hot and spicy canned chili today for lunch. So far no sharts but a lot of good farts.

    Kerry (old guy that thinks a hell of a lot of you)
  • christinecarl
    christinecarl Member Posts: 543 Member
    #5
    Awww **** cancer
    I sorry the bastards think they are making room and setting up residence. I hope the new trials can be of help.


    **** Cancer
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #6
    Roger
    I am so sorry for these scan results; you deserve much better than that! You are doing your due diligence + it will pan out for you. Getting nastier yourself is a good option; show those little buggars who is boss. I have missed your presence on the board.
  • Nana b
    Nana b Member Posts: 3,030 Member
    #7
    AnneCan said:

    Roger
    I am so sorry for these scan results; you deserve much better than that! You are doing your due diligence + it will pan out for you. Getting nastier yourself is a good option; show those little buggars who is boss. I have missed your presence on the board.

    Yes...
    Keep at it! Don't give up! I'm taking about 15 supplements
    trying to stay ahead of the monster!
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
    Sorry
    Oh, Roger.

    I hate reading this! You're such a special, wonderful man. I hope you find something good at Duke. I've been a very poor buddy for you here. I should have called you to see how you were doing. I'm so sorry.

    Praying for you, dear.

    *hugs*
    Gail
  • sfmarie
    sfmarie Member Posts: 602
    #9
    Roger
    Cancer sucks! It breaks my heart to read this. Have you looked into SirSpheres? I have heard it can do great things to target liver tumors.
    Good thing you are researching clinical trials. Hang in there and know I am praying for you!
    Marie
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #10
    Roger/Crow
    I haven't posted very much lately either but I do keep up w/you guys. I am so dayum frustrated that you can't seem to get a break from the little band of mutated bast@rds and all the other S##T you have had to endure.

    Sending a huge shower of sparks your way hoping it will keep you pissed at the mutants.

    John can help you with the TCM info and I believe that it just might work for you.

    Regards to Kim and kids. Give them all huge hugs.

    Wishing some good things to come your way,

    -Pat
  • NJC
    NJC Member Posts: 73 Member
    #11
    Roger, Contact Bartlett. He
    Roger,

    Contact Bartlett. He has a Phase I Trial of IHP using 5FU and Oxaliplatin. His Oxaliplatin trial showed really good efficacy.
    Wife just had it done this (1/11) morning and he's very, very encouraged! Any questions PM me and I'll give you my contact info for the low down.

    Stay Strong!
    -Joe
  • TMac52
    TMac52 Member Posts: 352
    #12
    Hey ROGER
    I usually avoid sending reply,s to bad news posts. Because I feel I dont have the knowlege alot of you guys have when it comes to the creature (thats what I call cancer). But I have Read many of your comments Roger and think your a great guy, so I want you to know That I'm also pissed about your results and hope and pray your research will get you into something else that kills the creature forever.
    TOM
  • z
    z Member Posts: 1,414 Member
    #13
    Roger
    Hi Roger, I am from the Anal Cancer discussion group. There are post below from cancer survivors who had liver mets and Winnie was successfully treated over 2 years ago and has been clean ever since. Anal Cancer is rare and the concoction that Winnies drs came up with worked. Theres another poster below Tim that is having the same tx as Winnie had and is also doing very well. I don't know if you would like to discuss this concoction with your dr, but I thought I would send it to you. I wish you all the best in finding the tx that will work to get rid of the mets. Lori

    Here are 2 posts from winnie who was successfully treated for liver mets:

    4-25-10

    Hi all, I am new here but an old hand on the Rare Cancer Alliance anal cancer forum.

    I am interested to know what states my fellow patients live in. It seems to me like there are very serious few cases out west, where I live (SoCal).

    If you are willing to chime in with your general location, I'd love to know. I am NOT a stalker :) MP327 can vouch for me..I think.

    I was initially treated by an onc in private practice, who knew my parents. He chose a brilliant, effective alternative chemo after doing some EXTRA research looking for something new for liver mets from SCC, and it was the right one for my liver mets: Carbo, Taxol, and Xeloda. But his office was understaffed and it was at times very hard to even schedule a chemo!

    I transferred to City of Hope in Duarte, a major, well funded center. The care was so well coordinated that it was astonishing! But they were shocked and mystified at my San Diego guy's choice. They had to acknowledge though that he fixed my liver and it's stayed fixed for almost two years now. But I could tell they'd have given me conventional treatment had I gone to them first.

    Curious also as to whose been to the biggies like MDA, Sloan-Kettering, etc.

    Winnie

    ‹ CAT Scan results First Use of Port after surgery to place it - YIKES ›

    5-12-10

    Gang, I have a great letter for you to read. I'd written to Dr. Cummings in 2009 to tell him that a certain drug combo, carbo-taxol-xeloda seems to have cleaned out my liver. I did need the APR in the end, but who cares, my liver is still good.

    PLEASE POST TO ANY SQUAMOUS CELL CANCER SITES LIKE THIS ONE. I also can be a resource (volunteer, self-taught) on the topic of my particular treatment. Please save this post even if you are doing fine now. `

    From Dr. Cummings to me in 2009

    Dear Ms Collins,

    Thank you very much for this information. I am heartened to hear of your response to treatment. I shall add this management plan to my files – I have been surprised by how many patients and physicians have sent me information about successful treatment of metastatic anal cancer as a result of the editorial I wrote. The newer drugs, taxanes (for example, Paclitaxel) and platinum-analogues (for example, Carboplatin) have figured in several of these protocols and do suggest a way forward in this disease.

    Once again, thank you. I wish you all the best for the future.

    Yours sincerely,

    Bernard Cummings

    Professor, Department of Radiation Oncology,

    Princess Margaret Hospital/University of Toronto .

    ‹ Home from the hospital Intro New Member ›

    reply | Report as Offensive


    tpmack37
    Posts: 18
    Joined: Apr 2010
    January 7, 2011 - 12:04am
    Liver mets
    Hello - my name is Tim and I'm fighting the Liver mets. I was diagnosed with Anal cancer in Feb 2010 and a few days later they saw my cat scan and called me back in. Liver was in terrible shape - not a few tumors, but more like spotted like a leopard. After the 5-FU + Mytomycin and 6 weeks of radiation, I continued those 2 chemos throughout the Summer. All the while telling my doc about Winnie's story and the mixture she used. I switched to that in August and am going for one more before getting another scan for a total of 8 Carboplatin/Taxol cocktails. There has been some really positive results in the way of shrinking the tumors down. I asked my doc this week if they have shrunk enough that maybe they could be treated another way, eg: radio frequency ablation. She not only said YES that may be possible, she also added the possibility of the Gamma-Knife treatment. (I was never a candidate for those because 1) so many tumors and 2) too large - now, it may be a possibility. Another possibility is that maybe the liver tumors are dead already, which happened to Winnie.
    Stay strong! Keep looking for a way to survive.
    TIM
  • C Dixon
    C Dixon Member Posts: 201
    #14
    Roger,
    I know you are
    Roger,

    I know you are discouraged but keep up the research. I will pray for the perfect trial. You will feel better with no oxi.

    Catherine
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #15
    Roger
    Hi Roger,

    Oh, I hate hearing this for you! Like you said, since the cancer is getting tougher, you're going to have to too! I'm researching clinical trials myself right now. Always something. Sounds like your onc is helping you find something- there's more out there, I am confident. Hang in there and never give up~

    Lisa
  • snommintj
    snommintj Member Posts: 601
    #16
    lisa42 said:

    Roger
    Hi Roger,

    Oh, I hate hearing this for you! Like you said, since the cancer is getting tougher, you're going to have to too! I'm researching clinical trials myself right now. Always something. Sounds like your onc is helping you find something- there's more out there, I am confident. Hang in there and never give up~

    Lisa

    when your done being frustrated
    Remember you only need a little bit of liver to live. I've been playing these games for years. Your liver regenerates. Kill a little here, kill a little there. Get a few at a time. Stop the chemo if you want. Start feeling good. Then start targeting your tumors as best you can. My current kill mechanism is Nanoknife. I haven't used it yet but the technique is very promising. Embolization works good on a large area, I took mine without the chemo. Rapidarc, Novalis, Cyberknife are all similar and effective. RFA works well. Get them one at a time if you have to.
  • kristasplace
    kristasplace Member Posts: 957 Member
    #17
    Yes...
    Must get VERY, VERY nasty with it, Roger. Give it everything available...spirulina, camu camu, milk thistle (for that liver), AND lots of vit. D. I don't remember what all you're taking, if you still are, but i got nasty with my cancer, and my lung met disappeared. I juice carrots, apples, kale, and a quarter lime with peel, and put the powdered spirulina in it, with msm, maca, and camu camu. I'm still NED. Of course i'm attributing most of my good health to being very happy and stress-free. Find your happy, boost your immune system, and cancer won't have a chance!

    The TCM doctor will want to do acupuncture, too. Each treatment cooled my body, and gave me euphoria. Put yourself in your most happy place while doing the treatments.

    At home, watch a bunch of funny movies or sitcoms. OMG, if you don't offend by crude British humor, watch a couple seasons of Little Britain. I laughed my butt off, and continue to do so whenever i need a good laugh. Most of the first couple of seasons can be accessed on youtube. I do it consistently.

    I have a bunch of other ideas, too. Feel free to PM me anytime.

    Hugs, and much hope for your future, Roger. i know you can beat this!

    Krista
  • Unknown
    Unknown
    #18
    This comment has been removed by the Moderator
  • dorookie
    dorookie Member Posts: 1,731 Member
    #19
    Roger
    I am sorry to hear this, but try to stay strong and keep fighting, you can beat this &*%&^$* beast.

    You are in my prayers..

    HUGS
    Beth
  • Unknown
    Unknown
    #20
    dorookie said:

    Roger
    I am sorry to hear this, but try to stay strong and keep fighting, you can beat this &*%&^$* beast.

    You are in my prayers..

    HUGS
    Beth

    This comment has been removed by the Moderator
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #21
    kristasplace said:

    Yes...
    Must get VERY, VERY nasty with it, Roger. Give it everything available...spirulina, camu camu, milk thistle (for that liver), AND lots of vit. D. I don't remember what all you're taking, if you still are, but i got nasty with my cancer, and my lung met disappeared. I juice carrots, apples, kale, and a quarter lime with peel, and put the powdered spirulina in it, with msm, maca, and camu camu. I'm still NED. Of course i'm attributing most of my good health to being very happy and stress-free. Find your happy, boost your immune system, and cancer won't have a chance!

    The TCM doctor will want to do acupuncture, too. Each treatment cooled my body, and gave me euphoria. Put yourself in your most happy place while doing the treatments.

    At home, watch a bunch of funny movies or sitcoms. OMG, if you don't offend by crude British humor, watch a couple seasons of Little Britain. I laughed my butt off, and continue to do so whenever i need a good laugh. Most of the first couple of seasons can be accessed on youtube. I do it consistently.

    I have a bunch of other ideas, too. Feel free to PM me anytime.

    Hugs, and much hope for your future, Roger. i know you can beat this!

    Krista

    don't get nasty or angry , just get even with it
    Assuming all the new age lets be positive and at peace in our lives is a worthwhile
    cancer fighting approach, then getting mad and angry is actually playing into the cancers hands in a sense.

    i think we have to out think our cancer, or at least try to our smart it.
    i hope our spirit and our mind are the most powerful weapons.

    its great you are searching for trials and treatments, and lets use all the best medical treatments.

    thanks for your post i am going to make my wonderfully flavoursome tcm tea right now.
    i almost forgot.

    sorry you had a setback on your journey,

    wishing you the best of health and peace,

    petet

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