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Disney good - Scan bad

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

Disney World is awesome. We had a super time.

Want to hear a Disney crap bag story? Of course you do!!

I don't know about you guys, but I keep a list of all the interesting places that I have changed my bag. Add The Magic Kingdom to the list. Sometimes the bag starts to leak with no warning. Sometimes there are warning signs. When the wafer gets itchy, it's time to consider a change. When the wafer suddenly gets really itchy, it's time for a change right now. No dipstick required.

I got the sudden itches right outside of Cinderella's Castle. I told Kim that I'd meet her and the kids at the Sword and the Stone thing beside the carousel, across from Snow White's Scary Adventure and hurried off to find a bathroom. The handicapped stalls at Disney are amazing. They're bigger than my old dorm room. With a sink. The regular stalls are tiny. I rarely use the handicapped stall, but this time I definitely was. By the time I found a bathroom, the skin under the wafer felt like it was melting. Just my luck, the handicapped stall was occupied by a father who's handicap was 2 young kids who had to poop at the same time. "Don't touch that. Are you finished? Come on, your brother has to . . . don't touch that!! Okay, wash your hands while . . . NOT THERE!!" etc. etc.

It went on for quite a while. Finally I yelled, "Hey there you ******* *******, wipe those brats and get'em the hell out of my way!!!" Okay, I didn't really say that. You can't say stuff like that at Disney. Maybe the Mall, but not Disney. At this time Mr. Dribbles was going nuts, and I was about to create my on little Splash Mountain. Finally the dad and kids left. I didn't even give him a dirty look. I was focussed. Of course there was pee all over the floor, but I didn't let that break my concentration. 2 seat covers on the floor for the old bag and wafer. 2 seat covers on the sink for the new bag, wafer and paste etc. Damn, forgot to put a seat cover on the wet seat. Too late now. Old bag off. And then . . the dance. The old 'stoma two step.' I clean. Dribbles poops. I clean. Dribbles poops. I swear. Dribbles poops. Dribbles poops. Dribbles poops. I clean. Dribbles poops.

Finally I got the wafer on. The bangle was a little off but not too bad. (Bangle= Bag Angle. KIm came up with that one.) I had my doubts about whether the wafer would stay. Mr. Dribbles is very close to my HIPEC scar, and sometimes the wafer doesn't want to stick to the scar. Also, I might not have let the skin dry enough. I put on some pink tape for good measure, said a little prayer to the Stoma Gods and got out of there.

I had left my mobile phone at home like an idiot, so back at the Sword and the Stone thing, there was nothing to do but wait and obsess about whether the wafer was coming lose again. I've gotten pretty good at casually and inconspicuously sticking my hand down my pants to adjust the bag or check for poop, but even with the sparse crowd, there is no way to do this while standing beside the Sword and the Stone thing. And I'm pretty sure that standing around the Magic Kingdom with your hand in you pants is a sure fire way to get kicked out of Disney. Finally Kim and the kids came around. All was well, we had a great rest of the day, and the bag lasted until we got back to the hotel.

I was real sad to leave Disney. I didn't have cancer there.

We got back yesterday. I had a scan this morning and then met with my onc. Folfori has failed. All liver and lung tumors are bigger with several new ones in my liver. I'll get the full report tomorrow. These results are a bit of a surprise. My CEA has always been an accurate marker for me and it has been going down. It sucks to go from being so happy to so sad. We'll figure something out tomorrow. I'll probably have some questions for you guys.

Take Care - Roger

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

Im am so sorry about your news! Just wanted to let you know that you are in me and my husbands prayers!
Chriss and Jack

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

So glad cancer wasn't at Disney World.
I'm praying and thinking my best wishes your way when you get your full report tomorrow.
I hesitate to ask this, I've been hesitating for a long time, but sometimes you wonder about things, so I'm going to ask and state things I guess.
I don't understand Folfori, I understand it contains somewhat the regime that I did, but it isn't exactly the same. I ended up with my regime because it was felt I would need surgery to get rid of the blockage I suffered from my tumor in the colon, not to save me, it was called palliative surgery if I were to have it. I ended up not needing it (thank you Supreme Being for that one), but my regime has worked so well for me. I was considered never to be operable, blah, blah, blah. But my tumors are all shrunk. So what is the difference in the regime? What is different from mine, Oxiplatinin, Avastin and Xeloda and everyone else's Folfori?
Was it the regime or genetics? It's just that I see so many Stage IV's, and here I am, looking operable, tumors shrinking, disappearing everywhere and the only difference I can really see is the chemo's that we're on, I've only met one other that has the same chemo as myself and their doing well. Just food for thought I guess, and then I'm guessing maybe you'll take the thought to your onc, and maybe it will work for you. Crap shoot, don't you know.
Roger, I think about you often, I hope for the best for you, I pray for you, I hope I didn't offend with my thought above, I guess I'm just grasping at straws as to why I should be doing well and others aren't, I just want everyone to be in my same boat, we're on the Titanic, I'm in the life raft, but I don't want to row away with the others in the boat, I want everyone out there in that unknown dark ocean to climb aboard with me, to feel a little safer, I want us all to have the life vest and a hand from nowhere reaching down and grabbing hold of us to pull us aboard to safety.
The reason I bring it up, is could more people do better on my chemos or is it genectics, it's such a toss up with cancer, knowing what will work, what won't.
I just wonder, why me, why am I doing well, and mostly I think it's my chemo combo, but of course in the world of cancer I could be totally wrong.
Love at you Roger
Winter Marie

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

Hey Marie - Love right back at you. Thanks for the good thoughts and prayers.

Folfox is oxaliplatin and 5FU. Oxy is a newer drug that is platinum based.
Folfori is Irinotecan (also called camptosar and CPT-11) and 5FU
Xeloda is the pill form of 5FU

At dx in 7/'09 I was also told that surgery was not an option. I did 6 months of Folfox and had a great response. I had surgery last April. While recovering from surgery and a big infection, the cancer came roaring back. I did Folfori because it is usually effective and not as toxic. But my cancer is not affected by irinotecan. I will most likely go back to Folfox. Each cancer is a bit different, and it can mutate and become resistant. Like you said - it's often a crap shoot - a toss up.

I know exactly how you are feeling. I've had ups and downs - mostly ups. I've wondered why I was doing well when others were suffering. Right now is a low point, but I'll bounce back.

Take care Winter Marie. I've been following you and I hope surgery will be successful.

AnneCan
Posts: 3692
Joined: Oct 2009

I am glad you had no cancer at Disney. It certinly is a magical place. How did the kids like it? I hink we are all kids at heart. Hands off to you for taking + enjoying such a magical place. My kids absolutley love the ocean, and when we went to Californis several years ago (they were~ 16 + 11) we went to Univeral; they loved it, but wanted to spend more time at Santa Monica beach jumping the ocean waves - they are magical too; just not manmade.

That said, I am sorry there was cancer waiting when you got home, do you know what is next? Are you KRAS mutant or wild-type? You are already fought + eliminiated a lot of cancer in the body. My understsnding is when cancer mets are not being systemically as in pre, post cancer senarios,it can grow. It can get beaten back too. I am awe that you did such a big trip with such recent major surgery. What a wonder Dad + husband to Kim.

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I'm sure happy you had a great time with the wife and kids. Disney is the best place to forget about cancer and just enjoy the family. Now it's back to work with dealing with this cancer. Start setting your mind to be ready to fight again and looking at all your options. Make some phone calls and do what you gotta do. Let me know it I can do anything on my end.

Brooks

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

Roger,
I am so glad that you all had a wonderful time at Disney! It is a magical place. I am sorry to hear about the progression. It would make sense if they gave you Folfox again since it was so effective.

I'll be praying for you and your family.

Aloha,
Kathleen

Lovekitties's picture
Lovekitties
Posts: 3341
Joined: Jan 2010

Glad you and the family had a nice break from the real world and joined Mickey at his house for a while. I don't think you can ever get to old to enjoy it, even if all you do is watch the children's faces as they explore it all.

You potty story is so funny...while I haven't had that exact experience, I think we all can relate to the 'when ya gotta go...ya gotta go' scenario.

Sorry that the news from the scan was not better. Sending prayers for a treatment plan which will knock that cancer for a loop.

Hugs,

Marie who loves kitties

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

I'm so glad you had a great time at Disney, sorry to hear about your results. Praying that they find the right chemo for you.

Sonia

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

So if folfox was great first time l suppose that,s the drug you need ,please keep us informed about your news, and don't hesitate to ask for anything you can need!
Hugs!

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Damn Roger,
Looks like you fell into the damn creek getting your hat. The liver is a concern. Have you asked them about liver chemo embolization??

Kerry

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

Excuse my chemo brain. I saw you post last night and thought I had posted to this thread. UGH. I'm so happy that you let Mr. Dribbles out to see the sights at Disney. Stomas get excited about being away from home too!

I'm happy to hear that your family had such a wonderful time. You guys deserved it and it will always be your first that the family can remember forever. It was great that you got to leave your cancer at home and that it didn't hop in and hide away in your luggage.

I'm sorry to hear about your damn scan. My onc says that my scans follow behind my CEA. Is it maybe possible that your tumors are still showing but, they perhaps decreased in size or activity and they haven't caught up with the decline of your CEA? I don't know if you asked the doc about that. I also don't know how your CEA works for you. I just know that mine is a good enough indicator that even when something isn't showing as changed on my scans, my onc expects the change to later show up, according to what my CEA shows. I will keep positive thoughts for you as you address the scan issue.

PS: so glad you didn't get arrested at Disney with your hands down your pants!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I am so glad to hear you had such a great time at Disney, minus the suck time in the bathroom waiting for the stall. Sounds like you have really adjusted well to your ostomy, thank you
God! It is truly magic when you are able to enjoy a day so completely that cancer loses it's hold on you! Those memories will always be there, just retrieve them when you need some happy time! I am sorry to hear about the tumors in your liver coming back with a vengeance; I am sure your docs are on top of it and will change your chemo around to get back on top of this. You are so strong and I watch your fight very closely; I guess the connection we have through Baptist and the HIPEC makes your fight of so much more interest to me. You and Kim are such a good team, very well matched, and you are young. Keep fighting!
mary

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

Hi Roger,

First of all, let me say you had me in stitches while reading the details of your bathroom bag change and the "hands down the pants at Disney" issue! I know it wasn't actually funny, but I had never heard it described so before.
I'm so glad you still had a good time at Disneyland with your family.
Then, back to reality. Reality is hard. I'm so sorry you got such surprising and difficult scan news. Like others mentioned, maybe you should go back on Folfox again. I thought about that for myself, as I had great results from it too (but I'm allergic to the oxi, so they won't put me back on it). If you don't have allergic issues to the oxi and it worked for you, I'd push for that if I were you.
Depending upon your complete results that you find out soon, maybe even looking into the chemo emobilization and HIPEC might be something to do.

I am praying for you, Roger- for answers, for peace, and for a treatment that will really kick the cancer back this time!

Lisa

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

Hey Roger,

I'm so glad that you and your family had a wonderful time at Disney. We're hoping to get back there again later this year since we need some magical cancer free time too. :-) I'll pray that your doctor will prescribe Folfox for you again and that it will reduce the tumors. Sending you love and cyber hugs! (()) - Cynthia

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

Well, you've had Disney and the good news is they can never take away your memories of that:)

CEA counts are intersting Roger, and I've found out that mine don't appear to mean too much either. I'm sitting at 0.5 right now - the trumpets should be sounding, the balloons falling out of the ceiling, there should be cake and candles.

Instead, I've got a raging Cancer inside me. So, maybe we worry a little bit less about CEAs now, huh? They are a marker, but not a definitive marker by any means.

As was mentioned, if you have not been KRAS tested, you could request this. If you are negative, then they can give you VECTIBIX, which is the drug they can give you when FOLFIRI fails.

And there is RFA and CyberKnife that can be used on the liver, if you qualify for those.

I hate all of this for you and your family - it's a kick in my gut, so I know it must be in your as well.

For now, take a look into the KRAS testing and see what happens there and then we'll move forward and see what the next options are.

-Craig

Annabelle41415's picture
Annabelle41415
Posts: 6439
Joined: Feb 2009

So glad that you had such a good time at Disney. Yup when the wafer starts itching it's time to think about changing it. Sorry to hear that your treatments aren't working. Maybe they can give you another cocktail to try. There has to be other options out there.

Kim

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

happy too that you had such a good time at Disney. Sorry about that scan...remember the old credo....one step at a time....there will be a new cocktail and tomorrow will tell

all best of luck and a hug

mags

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

I am so sorry about the scan results. Gosh Roger, I follow your blog and postings here and you have had a rough a time as I have ever read about. I have no words of wisdom or treatment options to offer advise on.

I know Kim is probably so busy taking care of the kids and you so if you need anything whatsoever research wise, doctor wise, whatever, please don't hesitate to ask. Myself and others on the board will go into overdrive if you guys need us.

Take care - Tina

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

That stinks... I mean...really??? That cancer crap can just back on down off your arse... I mean who does it think its messin with????? Really??? You keep on track Rog.....don't let this throw ya.... I know you will whip it down again..and again...and again...and however many times it TRIES to win..... u rock...u rule...love ya dude!!!

Jennie

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

Thanks for all the great responses. I'm pretty down about the scan. And my onc didn't call with the full report today; so I don't really know exactly what I'm up against and I still don't have a plan. I've been researching trials. I'd already been looking into TCM.

Here's a few things for you to chew over.

The most likely plan will be Folfox since it worked so well last time. But my Onc said that there is only a 20% chance that Folfox will work again. Even though irinotecan and oxy are different, he said that once the cancer is unresponsive to one chemo, it is most likely unresponsive to other chemos as well. I'd hate to go through Oxy hell for nothing. ?????

I'm a Kras mutant. But in my research today I found this article on a study that breaks the Kras mutation into 2 different groups. Take a look: http://www.nlm.nih.gov/medlineplus/news/fullstory_104813.html

You all are great. I'm trying to get refocussed. I keep hoping Eric will post something funny. Really miss him.

Getting out the chain saw tomorrow and building a nice big fire. Time for some sparks.

AnneCan
Posts: 3692
Joined: Oct 2009

I have never heard that about chemo; my understanding is that if one stops working, you try another one that may work, then another etc. In fact I was on folfox when I had radiation last summer; it didn't seem to work but folfiri + avastin are working. My onc even said @ one point that if the folfiri stopped working I might go on folfox + avastin; it can be used differently than when I was undergoing radiation. I can't remember, is your onc with a large cancer centre? Besides which you never know what side of the 20% you will be on. You have done amazingly well + I see lots of big fires + many sparks in your future. I miss Eric too! But I have always loved yours + Kim's posts too. I remember she was the original poster + she seemed so proud + happy that you were posting. Did you see Lisa42's thread on the 813 clinical trials for colorectal cancers in the US alone? And I know this is going on around the world. All we need is one to make this crappy disease history!

mom_2_3
Posts: 965
Joined: Nov 2008

Roger,

I am so glad that you had a great vacation with your family. It really stinks to hear that your chemo regimen isn't working anymore. Have you looked into mitomycin?

I keep you in my thoughts,
Amy

annad723's picture
annad723
Posts: 44
Joined: Nov 2010

Hi Roger,

I'm new to this blog stuff, but not to cancer. I'm dealing with Stage IV colon cancer, with mets to liver. I hate that whole CEA stuff. I started at 2800 went down to 2 and now am back up to 10. It hasn't been a good marker for me though. When it went down to 2, a CAT scan showed more tumor activity. Now it's back up to 10, but the last scan showed all is stable. I don't get it. I'm on my 3rd round of a different chemo, so hang in there. It's been 2 years for me.

Glad you had a good time at Disney.

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

I'm happy for you that you had a good time at Disney -- "stoma two step" and all.
Sorry about the results of your scan. You are in my thoughts and prayers. Holding you in the Light.
~Aud

taraHK
Posts: 1961
Joined: Aug 2003

So sorry to hear about the scan. And VERY happy you had that great experience at Disneyland. I try to schedule something lovely right before a scan -- coz I know I can get thrown on the rollercoaster again right after.

It sounds like you are already engaged in exploring treatment options -- even before getting the full scan results. Wishing you every success with that and with whichever treatment plan you end up with.

I'm in a similar category -- have run through an array of cocktails. What I'm on now (Xeliri + Avastin) seems to be working for what I've got now (bone mets-shrinking). But, I've relapsed after FOLFOX before and I'm "a mutant". But new cocktails keep emerging. And 'alternative treatment approaches' are an option as well, of course.

Tara

ps I keep a list too of 'challenging' places I managed a pouch change ! Mine includes behind a tree while on a long hike with a group of friends, and in a regular (small) toilet stall at the motor vehicles department -- !!! Can be funny afterwards - way afterwards

Brenda3.16
Posts: 211
Joined: May 2009

Hi Roger,

Disney sounds like it was great. I love when I am away and can forget about the cancer and just fell normal for a while.

My onc has said that putting me back on folfox would be an option at some point, because it worked well in the past.

I am doing Xeliri now and will have a scan in the end of November.

I am praying that whatever your next treatment ends up being, it will do a great job.

Brenda

suz_3
Posts: 17
Joined: Nov 2010

Love your story! I am new on here,as far as posting, but have been reading this blog for months. It has been so helpful! Anyways...I am getting ready to go to Disney with my family, too. I also look forward to not having cancer while I am there. I have been having trouble with my bag leaking lately, so I hope my stoma just decides to be shy while we are there;).

I am sorry to hear about your scan...you will be in my prayers. I have a scan on Wednesday and am hoping for some positive news-I haven't had any since this nightmare began. Thanks for making me laugh this morning:).

ForBenandSophia
Posts: 11
Joined: Nov 2010

Roger,

My name is Erin and I have been hunting (not stalkin!) for a few days. First off, as Saturday Night reruns are on as we speak, your blog had me in stitches. My husband (age 47 and otherwise healthy) has not even gotten the "bag" yet and I just had humor with cancer. Wanted to share our brief story for your guidance. Husband dx Stage 4 colon cancer(one tumor in cecum) that has spread to peritoneal both discovered in July. We just finished round 8 of chemo last week. Headed to Dr. Alexander at Univ of MD Cancer Center on the 9th for HIPEC surgery. Where did you have your surgery? I am so sad that Disney after an incredible trip (we live in FLorida) that you came back to crappy news. Will be thinking of you and hope to learn more of your story. i just joined recently so I apologize if this is the wrong forum.

Sincerely,
Erin

Mellow Mel's picture
Mellow Mel
Posts: 11
Joined: Nov 2010

Hey there! My name is Melody, and I am here on behalf of my husband, LaMont, who has Stage 4 colon cancer . I must tell you that your story about "Mr. Dribbles", had Mont and me dying from laughter! You have such a great sense of humor! We absolutely love it! But on a serious note, it is a bummer about the recent news. Monty and I will be praying for you, and will check back with you often. In the mean time, keep your chin up, and keep sharing the funny stories!

Sincerely,

Mont and Mel

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Roger... like everyone else, it brought a smile to my face that you and the family had a great time at Disney. Isn't it the happiest place in the world? Or is that their advertising for something?? Anywho... your story with Mr. Dribble was hilarious... all you needed to do was put ears on him and he would have fit right in and could have dribbled to his heart's content :)

On a more serious note... bummer about the scan. I get a scan on Dec 7th, but lately my CEA has been creeping up, so I totally understand the lows of getting a scan that we aren't happy with. When it's good and everything is doing well, it's so easy to do the happy dance, even though we know the cancer has not gone, it's just stable. But as soon as a scan or some test shows us there is activity... a form of chemo depression sets in. I don't know about the rest of you but overall I'm very upbeat, positive and live in a wonderfully comfortable world of denial... so I'm not a happy camper when some doctor goes and tells me news that doesn't fit in with my world of denial ;)

But hey... we all know this journey has ups and downs, high points and low points, hope and despair... but we keep marching on because that is what we do so well :) I think the worst part of getting news we don't want to hear is the process of wait and see, wait and see. So you get the results from the scan that you didn't want to hear and now you have to wait for your oncologist to call you with the full report. He doesn't call today, so now you have to wait another day. Then he will probably make an appt. for you to go over what the plan is, so off you go for your appt. and it will be a wait in the waiting room because they are running behind. When you see him, he'll go over the options/plans and then order some tests/scans and you'll have to wait for them, then wait for the results before you can start the plan and wait to see if it's working. Is it any wonder we get down? Yet one or two of those tests come back with good news... and out come the tap shoes and we do our happy dance :)

Sooooo, don't put the tap shoes away yet... you might want to keep them out and polish them. I'm sure it won't be long before we are hearing the tappa tappa tap of the Happy Dance again :)

Hugggggggs,

Cheryl

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