Disney good - Scan bad

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Comments

  • Crow71
    Crow71 Member Posts: 679 Member
    #22
    Thanks for all the great
    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
    AnneCan Member Posts: 3,673 Member
    #23
    Crow71 said:

    Thanks for all the great
    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.

    Hi Roger
    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
    mom_2_3 Member Posts: 953 Member
    #24
    Roger
    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
    annad723 Member Posts: 44
    #25
    It all sucks
    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
    Aud Member Posts: 479 Member
    #26
    Roger
    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
    taraHK Member Posts: 1,952 Member
    #27
    thinking of you
    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
    Brenda3.16 Member Posts: 209
    #28
    taraHK said:

    thinking of you
    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

    Hi Roger,
    Disney sounds
    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
    suz_3 Member Posts: 17
    #29
    Love your story! I am new
    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
    ForBenandSophia Member Posts: 11
    #30
    That is the funniest blog..
    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
    Mellow Mel Member Posts: 11
    #31
    Funny Guy
    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
    CherylHutch Member Posts: 1,375 Member
    #32
    Good News/Low News
    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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