Update
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
Comments
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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!0 -
Thanks Pepepepebcn 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!
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.0 -
For your info, when dx 2 years ago I was put in an studyCrow71 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.
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!0 -
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,
Marie0 -
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.
-Craig0 -
Thanks Anne.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!
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.0 -
Wow Marie. It's great tosfmarie 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 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.0 -
Hey Craig. I hope you areSundanceh 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 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.0 -
Tough loveCrow71 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.
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!0 -
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, Cynthia0 -
Roger Dodger!!!..........LivinginNH said: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
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!
Jennie0 -
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,
Kathleen0 -
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*
Gail0 -
Roger,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
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 Melissa0 -
Time to just wish it away...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... 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.0 -
Thanks Cynthia. I hope youLivinginNH said: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 and Rob are doing well.0 -
Hey Kathleen. I think aboutKathleen808 said: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 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.0
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