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Update

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

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

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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's picture
Crow71
Posts: 681
Joined: Jan 2010

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's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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!

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Roger, I will be keeping you in my prayers dear one. Do I understand that when you do clinica trials you have to stop taking vitamins and suppliments? I know Jim's oncologist is talking about trials next and I don't think Jim will go that route. We are just starting the alternative stuff. Prayers and best wishes for good news ahead.
April

AnneCan
Posts: 3692
Joined: Oct 2009

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!

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

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.

AnneCan
Posts: 3692
Joined: Oct 2009

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!

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

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

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

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.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

That is such a great picture. Lovely.
Yes, I visit this board almost daily. I do not often post, but I think and pray for everyone here!
I know what you mean about placebo and all. I am so glad you are not losing hope. I too wonder about the naturapathic way and think it has some merits. Good you are trying.
Yes, Christina passed away 04/30/2010. It has been a tough year and there is not a day that I do not think about her. Her children are doing remarkably well, though I still worry about them. Her daughter still wonders when mommy is coming home. Soo very sad. But they are a constant reminder of the happiness and joy of my sister.
Keep on fighting and keep in touch!
Lots of love.
Marie

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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's picture
Crow71
Posts: 681
Joined: Jan 2010

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.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Thanks Jennie - You always lift me up.
Luv right back to you.

Roger

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Thanks Cynthia. I hope you and Rob are doing well.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Kathleen. I think about your family a lot too. I don't know if you saw it, but surfing with Dick (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.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Thanks Melissa. I hope you are doing well. How are things?

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I'm telling you. We've got the best stamp/scrap booking store East (or West) of the Mississippi right here in Lewisville. You just tell me when you can come. I'd love to meet up with you.

mom_2_3
Posts: 964
Joined: Nov 2008

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's picture
Nana b
Posts: 3045
Joined: May 2009

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.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

what the benefit vit e ?
one of my NDs asked about why I was taking vit e.
I said no reason in particular except I read it in a book somewhere and then on this site.

your list is awesome, and pretty close to mine.

Pete

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Vitamin E acts as a powerful antioxidant by neutralizing free radicals in the body that cause tissue and cellular damage. Vitamin E also contributes to a healthy circulatory system and aids in proper blood clotting and improves wound healing.

The chemo is also killing your skin cells, the vitamin E helps rejuvenate your skin by keeping the blood flowing.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Nana. I always appreciate when you post specific things that you juice/blend/cook/take etc. I've learned a lot from you.

I'm currently taking lots of supplements, herbs, vitamins etc. I haven't found a Naturopath here that I like yet.

Take care. Stay Healthy.

Roger

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Amy - I'm not sure what I will do. Duke called today and said they had a spot for me. I have until Monday to decide. They sent tons of info so go through. I'll be busy this weekend.

I just love those cheeks!!!!!!

Roger

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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

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Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

You are right. All we can do is our best. So let's enjoy the hell out of feeling good and energetic right now.

Roger

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Thanks for the hugs Lori. I've tried yelling at the tumor and it just sits there and mocks me.
I hope you are doing well.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi roger,

I am so sorry to have heard of the growth and its a setback and worry no doubt.

I have hope, that your hope stays strong. they say it ain't oer till the fat lady sings.
I cannot hear anyone singing hear. so hope is what we all have and its free.

hope is one of the only free things besides sex. enjoy today, every moment as you do. soccer sounded fun, Lucky the girls did not slam a ball right into your stomach, that have have dislodged your newest tumour. (attempted humour ) keep on playing soccer or any other passionate and slightly risky endevours that keeps you blood pulsing ( i hope the girls to read this bit, I would also recommend as much sex as you can get ) I was advised it was the miracle cure. I told my wife about that one. so far so good. Being half serious here. Now being a quarter serious. If you died having sex or on the soccer field, your tomestone could read "he beat cancer and passedaway playing the game he loved with the ones who loved him."

I thought your decision to stop chemo and go natural is the bravest move and that your courage in particular is an inspiration to me. I show my kids and few a few posts and this is one I would like to share with them.

If my god is listening to my prayers for you especially he can see my tears as I write this. I pray for you and that my god is listening.

i have thought about you often and your illness and your real courage in adversity.

Not much else to say but that the onc and second opinion except they sound compassionate. Are you trying cordyseps from china, a farout alternative from the mountains of china. I am getting some today and its on special.

Stick with your super healthy approach, I have heard of miracles and I will ask ND2
what he thinks tonight. Strange that your healthy approach some how reaches around and motivates me to be healthier. In my big prayer for you I am offering a small one for me.

love and hope,

Pete

PS I am on the dex again, sorry for the post. I said dex not sex here !!

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Thanks Pete.
Your positive attitude and humor always lift me up.

Devasted
Posts: 186
Joined: Jun 2009

Just wanted to let you know I'm thinking of you, and sending healing sparks to you and your family. I hate cancer.... Take care and keep playing with those girls, they will keep you energized.

Take care,
Devastated

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Cheryl,
It's great to hear form you. Thanks for checking in. I hope you are doing well.

sasjourney
Posts: 395
Joined: Jul 2010

Roger,

I have been thinking about you and your family lately. I am sorry to hear that things are not going well. I admire you for taking charge and trying the natural method...we know it has worked for some folks so why not you. Follow your heart and you will make the right decisions for you. You and your family are in my prayers. Looking forward to good news from you soon.

Hugs,
Sara

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

"Follow your heart." That's great advice. It's simple, but I really needed the reminder. I try to make things logical. but sometimes it just comes down to what feels like the best route.
Take care,
Roger

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Roger,

I missed this post until now- man, it hits me hard anytime I hear of someone having bad scan results- I'm so sorry. Glad you're still getting out and about. Definitely talk with your ND asap, if you haven't already & ask him what his protocol for emergency/severe metastasis is. Perhaps he will change up or add some things to what you're already taking and doing. Also- look into sauna detox therapy- and do it intensely if you go with it.

I'm thinking of you and praying for you & I do really mean that when I say it.

Hang in there- we're all pulling for you.

Lisa :)

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Thanks Lisa. I've made a few changes to my treatment plan. Also Duke called today with an opening in one of their trials. I still have to read the info they sent; so I don't know much about the drug yet. I have to decide by Monday. Just not sure.

You and I don't share the same beliefs, but I really appreciate the prayers. On your bucket list you mentioned the desire to talk to church groups about having faith in the face of hard times. I want to encourage you to do this. There is a certain clarity and strength that comes out of you the few times you have spoken here about the nature of Faith and yours in particular. I can't remember the exact posts, but I think that you could really help folks who have had their faith shaken.

I'll look into sauna detox. Sounds like fun.

Many sparks to you Lisa.

Roger

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

Thinking about you and holding you in the Light for healing and strength. Glad to hear that you're feeling good and hoping that continues.
~Aud

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I read on your expressions page what you wrote about holding someone "in the light." That's really beautiful.
Hope you are well.
Roger

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I am glad to see your post, but not happy with what is in it. I always love to read your posts your personality just really comes through with your words so well, I miss that. I hope there is something that can work for you as far as treatments are, I love the new pic you have. Stay strong, we need you here too.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Say it with me: SUCK IT CANCER!!!!!

luvmum
Posts: 457
Joined: Dec 2010

Hi Roger,

Although I'm not a patient, I have been through a lot with my mum. I truly hope all of you keep up your positive spirits and will recover soon!

I don't know if this piece of information will be of any use for you, you might want to search more information about taking Yunzhi.

http://www.mskcc.org/mskcc/html/69194.cfm

I hope you will recover soon and best wishes to you!
Dora

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

You and your mom have indeed been through a lot. I hope your are both doing well.

I'll check out Yunzhi - Thanks

Roger

GaryinUK
Posts: 63
Joined: Feb 2011

Roger

I noted you mentioned a phase 1 trial, my partner is on one now, E7050, if you are being offered the same, let me know, or what you are being offered so I can read up on it.

The E7050 drug is not going well with him, whilst he is on an cohort increased dose stage he is suffering and he has not taken for 2 days.

Gary

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Kim knows, and I hope you do also, that we think of you so very often and the struggles you have endured. I have no words of wisdom just well wishes that the supplements are working to your advantage.

Hopefully the trial you are looking at will work to your advantage and you will consider it if it is right for you.

With warmest wishes and hugs - Tina

dorookie
Posts: 1736
Joined: Jul 2007

Stay strong and keep the faith my friend..

God Bless you

HUGS
Beth

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