Update

Crow71
Crow71 Member Posts: 679
I wanted to give you all an update on how things are going for me.

Basically my cancer fight is not going well. I had about a 30% increase in tumor growth while on Folfori and then Folfox since my bad post op scan last August. The latest scan shows many liver tumors, a few lung tumors and the peritoneal mets have come back.

Now I have a hard tumor at the surface of my abdomen a few inches above my stoma. It wasn't on the scan in January, but here it is in February. I've known for quite a while that my cancer is fairly aggressive, but damn!!! That's a fast growing tumor. If it keeps growing out toward the surface, I'm gonna have my own little "Alien" scene. We could do some radiation on it, but it's so close to my stoma and intestines that we are going to take a wait and see approach.

My onc said that without effective treatment, I could be looking at a matter of months. But since I feel so good otherwise and still have lots of energy he said he could also see me just keep going and going.

I went to Duke for another opinion. For those of you familiar with Duke, I saw Dr. Zafar. He agreed with the prognosis. Duke does a lot of research and Dr. Zafar has a few phase 1 trials. I put my name on the list so I'll have the option down the road, but I don't think that I would do a trial at this point. I really need to give the naturopathic treatment plan more time. It's only been a month and a half - not nearly enough time to show positive results.

So I'm not feeling particularly hopeful at this point, but still not hopeless.

Last night I played soccer for the first time since surgery. I was surprised that I could keep up. They made me play goalie, which I hate, but I only let in 6 or 7 goals. Some of those 9 year old girls can really shoot.

Have a great day folks.

Roger
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Comments

  • pepebcn
    pepebcn Member Posts: 6,331
    Roger feel so sorry for the news, but hang there as you feel
    great ! I agree to let time to work to naturopathic treatment but also I would consider any kind of Trial! Good point would be ask how many here had been in trails with successful results!.May be l will post something about!
    Take care Roger, I will be thinking and praying for you!
    Hugs!
  • Crow71
    Crow71 Member Posts: 679
    pepebcn said:

    Roger feel so sorry for the news, but hang there as you feel
    great ! I agree to let time to work to naturopathic treatment but also I would consider any kind of Trial! Good point would be ask how many here had been in trails with successful results!.May be l will post something about!
    Take care Roger, I will be thinking and praying for you!
    Hugs!

    Thanks Pepe
    I'm definitely

    Thanks Pepe
    I'm definitely considering a trial. The problem I have with phase 1 trials is that the trial is all about the trial - not the patient. Right now I feel like the "alternative" offers the best chance at success.
  • pepebcn
    pepebcn Member Posts: 6,331
    Crow71 said:

    Thanks Pepe
    I'm definitely

    Thanks Pepe
    I'm definitely considering a trial. The problem I have with phase 1 trials is that the trial is all about the trial - not the patient. Right now I feel like the "alternative" offers the best chance at success.

    For your info, when dx 2 years ago I was put in an study
    in fase 1. It was the standard folfox plus a new monoclonal antibody,It did wonders and was considered candidate to surgery .But it's truth that I never will know what drug was the one that worked if Folfri or the trial!.
    Hugs and cheer up my friend!
  • AnneCan
    AnneCan Member Posts: 3,673
    Roger
    I am sorry to hear about your new tumour. I hope whatever treatment you choose will work for you. I am so impressed that you are playing soccer; good for you!
  • sfmarie
    sfmarie Member Posts: 602
    Roger
    I am sorry to read about this latest news. I do not know what to say.
    There are many trials out there and I wonder if there isn't a Phase II or III that you may be a candidate for.
    I would think if you have energy and feel good, that you can keep going. DO not lose hope!
    My prayers are with you daily.
    Blessings and hugs,
    Marie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Crow
    Wow, Rog

    That sobered me up this morning...I'm watching your naturopath approach and hope it yiels some good results for you. I'm sorry for the setback you've experienced. It does sound like a very aggressive cancer.

    Don't blame you on the radiation being so close to the intestines; that could spell more trouble than you need, but with your medical team, you'll know what's the best decision to make.

    -Craig
  • Crow71
    Crow71 Member Posts: 679
    AnneCan said:

    Roger
    I am sorry to hear about your new tumour. I hope whatever treatment you choose will work for you. I am so impressed that you are playing soccer; good for you!

    Thanks Anne.
    I actually

    Thanks Anne.

    I actually jumped out of the way of the ball last night a few times. I was afraid of getting my stoma flattened. One of my defenders - these are 10 year old girls remember - started giving my attitude about letting the shots go in. I figured showing her my stoma would get me banned from coaching, so I suggested that she play goalie or zip it.
  • Crow71
    Crow71 Member Posts: 679
    sfmarie said:

    Roger
    I am sorry to read about this latest news. I do not know what to say.
    There are many trials out there and I wonder if there isn't a Phase II or III that you may be a candidate for.
    I would think if you have energy and feel good, that you can keep going. DO not lose hope!
    My prayers are with you daily.
    Blessings and hugs,
    Marie

    Wow Marie. It's great to
    Wow Marie. It's great to hear from you. I looked at a phase 3 trial out of Vanderbuilt. 50% of patients get the new drug; 50% get a placebo. But everyone gets enough 5FU to make them sick. The results from phase 2 were not all that great to me. I don;t know if I'm doing the right thing or not, but I really want to stay non toxic.

    It's upsetting to have a tumor I can feel, but I' not close to losing hope.

    It's so amazing that you are still with us. It means a lot. It's been about 11 months since Christina passed right? I hope her kids, and you, are doing well.

    Hugs and sparks right back at you.
  • Crow71
    Crow71 Member Posts: 679
    Sundanceh said:

    Crow
    Wow, Rog

    That sobered me up this morning...I'm watching your naturopath approach and hope it yiels some good results for you. I'm sorry for the setback you've experienced. It does sound like a very aggressive cancer.

    Don't blame you on the radiation being so close to the intestines; that could spell more trouble than you need, but with your medical team, you'll know what's the best decision to make.

    -Craig

    Hey Craig. I hope you are
    Hey Craig. I hope you are dong well today. Just a few more treatments left correct?

    It's like my cancer got really angry or something. I've never had radiation and don't know a whole lot about it. Just what I know from reading the stories here. You've had lots of experience; so if I go that route, I'll have some questions.

    Take care Craig. Stay strong.
  • AnneCan
    AnneCan Member Posts: 3,673
    Crow71 said:

    Thanks Anne.
    I actually

    Thanks Anne.

    I actually jumped out of the way of the ball last night a few times. I was afraid of getting my stoma flattened. One of my defenders - these are 10 year old girls remember - started giving my attitude about letting the shots go in. I figured showing her my stoma would get me banned from coaching, so I suggested that she play goalie or zip it.

    Tough love
    Some of these little rugrats need tough talk! Both of my daughters (now 22 + 17) have played soccer over the years + sometimes I couldn't believe what comes out of players mouths (usually a little older than 10, but not that much - maybe 12!) The parents could also be brutal. Then, as they got older, there were the "prima donas" who didn't show up for practice but always expected to be the star of the game. I do miss soccer nights though-although they were long they forced you to relax for a few hours. Now my youngest daughter is playing ice hockey + loves it. By the way, your photo of the pastrami sandwich inspired me; I added pastrami + rye bread to the grocery list + am now eating a sandwich (not nearly as good looking as the one in your photo, but not bad!) Please say hi to Kim + tell her that I miss her posts. Keep on!
  • LivinginNH
    LivinginNH Member Posts: 1,456
    Hi Roger, I just wanted to

    Hi Roger, I just wanted to tell you that we're thinking of you and wishing you the best on the road ahead. Take care, Luv, Cynthia
  • idlehunters
    idlehunters Member Posts: 1,787

    Hi Roger, I just wanted to

    Hi Roger, I just wanted to tell you that we're thinking of you and wishing you the best on the road ahead. Take care, Luv, Cynthia

    Roger Dodger!!!..........
    Hi sweeetheart! I would definately say you got a full plate! Man, that tumor that you can feel would friggin bother me too...... You have a great positive attitude about everything Rog...... That reminds me of a saying I heard the other nite on TV "It's not the load that breaks you down---- It's the way you carry it" Luv that saying... Luv you too!

    Jennie
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Roger
    Roger,
    I've been thinking about you and Kim and your kids a lot. Keep the hope my friend. You feel good so I know you are living each day. My thoughts and prayers are with you. Can you remind me of Kim's name on the board? I want to send her a PM.

    Thanks.

    Aloha,
    Kathleen
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Praying for you
    Oh, dear.

    Roger, I hate to read this about you. I just pray that the doctor's thought that you might be around a long time comes true! You have so much living to do!

    Now I know I need to come to Winston sometime very soon and meet up with you.

    *Hugs*
    Gail
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    tootsie1 said:

    Praying for you
    Oh, dear.

    Roger, I hate to read this about you. I just pray that the doctor's thought that you might be around a long time comes true! You have so much living to do!

    Now I know I need to come to Winston sometime very soon and meet up with you.

    *Hugs*
    Gail

    Roger,
    I've been thinking about you lately and I was so happy to see you post. You are so positive and I want the best for you. Keep on doing the things you love and we are here for you :) Melissa
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Roger
    I am very saddened to hear you are facing these challenges. I am glad that you are feeling good and enjoying your family. I think I would go a clinical trial route but understand that you may not want to. I keep you in my thoughts Roger.

    Amy
  • Nana b
    Nana b Member Posts: 3,030
    mom_2_3 said:

    Roger
    I am very saddened to hear you are facing these challenges. I am glad that you are feeling good and enjoying your family. I think I would go a clinical trial route but understand that you may not want to. I keep you in my thoughts Roger.

    Amy

    Time to just wish it away...
    Time to just wish it away... Stay positive! Stay active!

    I take the following herbs each morning, just an FYI, herbs for thought

    Smoothie of

    Red raspberries
    blue berries
    orange/tangerine
    supreme greens powder
    supreme reds powder
    tumeric
    grape extract
    ginger root
    milk thistle
    aloe
    and throw in some 100 berry juice to mix it all up



    evening juice or blend if you have to

    kale
    cabbage
    cucmber
    beets (a bit)
    carrots
    apple
    broccolii
    asparagus
    a garlic clove


    I eat soups of blended up cooked veggies and garlic. No red meat. I eat chicken, fish.

    I also take
    Vitamin C
    Vitamin D3
    all the B's
    Vitamin E
    Calcium
    Magnesium
    Fish oil


    Worth talking to your Naturopath about herbs and supplements if you haven't already. Mine told me to continue what I am doing.
  • Lori-S
    Lori-S Member Posts: 1,277
    Roger
    I am so sorry to hear that you are on one of those twisty, turning roads with your cancerr. Go away tumors .... damn it! HUGS to you and the family
  • Crow71
    Crow71 Member Posts: 679

    Hi Roger, I just wanted to

    Hi Roger, I just wanted to tell you that we're thinking of you and wishing you the best on the road ahead. Take care, Luv, Cynthia

    Thanks Cynthia. I hope you
    Thanks Cynthia. I hope you and Rob are doing well.
  • Crow71
    Crow71 Member Posts: 679

    Roger
    Roger,
    I've been thinking about you and Kim and your kids a lot. Keep the hope my friend. You feel good so I know you are living each day. My thoughts and prayers are with you. Can you remind me of Kim's name on the board? I want to send her a PM.

    Thanks.

    Aloha,
    Kathleen

    Hey Kathleen. I think about
    Hey Kathleen. I think about your family a lot too. I don't know if you saw it, but surfing with **** (and the president if you can line that up) is on my bucket list. Hopefully that can also include a visit to your class room. I love to see how other teachers set up their space and decorate the walls etc.

    Kim is krf. I'm sure she'd love to hear from you.