Would love updates from several members....

jen2012
jen2012 Member Posts: 1,607 Member
in Colorectal Cancer #1

Some that I've been thinking about, add your own:

Mike ...thnxmixer (I know the name is wrong)

phil64

Art ...fatbob

alexinlv

bailee2012

alex..maxiecat, so sad we haven't heard from her in so long. I hope she just didn't need to think about cancer anymore

 

and winter Marie...I know you are posting regularly but haven't seen much info about you!

Comments

  • Phil64
    Phil64 Member Posts: 838 Member
    #2
    Hello everyone.  I posted an

    Hello everyone.  I posted an updated just before reading this.  I was offline for a while. I really have been working a lot and busy with home and a spring vacation.

    I have a daughter getting married this July and another daughter getting married next April.  And I expect to remain busy busy busy...   working full time (more than 40 hours), preparing our house for weddings, and getting Erbitux every two weeks. The saving grace is that the Erbitux doesn't seem to affect my energy level too much so I have been able to swing it so far. Although I was pretty worn out lately.

    Love and Light to you All!

    Phil

    Blog: http://PScamihorn.Me

  • Dyanclark
    Dyanclark Member Posts: 296
    #3
    Mike thnxmixer

    He is on facebook as Michael Raynor.  He was in the hospital, and on a pain pump.

    I think he is back home and in good spirits

    Hugs to all

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #4
    Dyanclark said:

    Mike thnxmixer

    He is on facebook as Michael Raynor.  He was in the hospital, and on a pain pump.

    I think he is back home and in good spirits

    Hugs to all

     

    Thanks Dyan.  How are you

    Thanks Dyan.  How are you guys doing?

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #5
    That's the hard part about

    That's the hard part about user names, you don't know how people are doing. I just put in thxmiker and hit images and got the most beautiful result! Profile pictures of all of the familiar faces on here!

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
    I'm on here so rarely I don't even make the list! :-)

    Still here, still on chemo.  I've been taking Xeloda for well over a year, they added Avastin around Dec 2014 after my 7th RFA. I have a few small spots in my lungs but the trend appears to be that things are stable or shrinking.

    So basically, after the first few years of 5-6 rather major surgeries I've been doing the RFAs to manage new growth in my lungs. I did have radiation in April 2013 for 1 spot in my lung near an artery. That didn't go as hoped and it caused irreparable lung damage. I get winded easily (and passing wind doesn't help - doesn't hurt either!)

    I've been in the game for over 11 years with no remission ever so that puts me in an unique (but growing) place among cancer people...I'm living with cancer. My quality of life is fine by my standards but after 11 years I have no recollection of what normal was. To someone else it might not be fine.

    I have not been on the boards often. Newbies do not necessarily want to hear "chemo for life" when they start their journey. I know I would not have wanted to hear that when I started! On the plus side, it's another possible outcome so I feel there's a time and place for it. I can honestly say that the passing of Craig hit me hard. They all impact me but as many of us know, he was a character and will be sorely missed. I feel I'm also at that point where there are more people I "knew" on here than people I "know". Everytime I log on someone else lost their battle.

    What I've learned quite a while ago is that like spirituality/religion, there are many paths we can take to be cured or to extend our lives. I've said this many, many times. There's no "one size fits all" when it comes to cancer treatment. There's no right way, or wrong way to treat it. Thankfully it seems like those arguments have quieted down. I strongly advise people to get a second opinion when first DX'd and if you don't like your Dr or how things are going, don't be afraid to change your course.

    I'm working part time and I'm still devoting many hours a week to local political issues. We are in the midst of a hostile takeover. As a friend once said of me, "Phil's always fighting something". Yup, I find it helpful. It keeps me busy...

    I wish everyone the best. Sometimes I am sent emails/messages so I get notifications and do respond but cancer was taking up too much of my time and I needed a vacation from death. I'm sure many of you understand.
    -peace

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #7
    PhillieG said:

    I'm on here so rarely I don't even make the list! :-)

    Still here, still on chemo.  I've been taking Xeloda for well over a year, they added Avastin around Dec 2014 after my 7th RFA. I have a few small spots in my lungs but the trend appears to be that things are stable or shrinking.

    So basically, after the first few years of 5-6 rather major surgeries I've been doing the RFAs to manage new growth in my lungs. I did have radiation in April 2013 for 1 spot in my lung near an artery. That didn't go as hoped and it caused irreparable lung damage. I get winded easily (and passing wind doesn't help - doesn't hurt either!)

    I've been in the game for over 11 years with no remission ever so that puts me in an unique (but growing) place among cancer people...I'm living with cancer. My quality of life is fine by my standards but after 11 years I have no recollection of what normal was. To someone else it might not be fine.

    I have not been on the boards often. Newbies do not necessarily want to hear "chemo for life" when they start their journey. I know I would not have wanted to hear that when I started! On the plus side, it's another possible outcome so I feel there's a time and place for it. I can honestly say that the passing of Craig hit me hard. They all impact me but as many of us know, he was a character and will be sorely missed. I feel I'm also at that point where there are more people I "knew" on here than people I "know". Everytime I log on someone else lost their battle.

    What I've learned quite a while ago is that like spirituality/religion, there are many paths we can take to be cured or to extend our lives. I've said this many, many times. There's no "one size fits all" when it comes to cancer treatment. There's no right way, or wrong way to treat it. Thankfully it seems like those arguments have quieted down. I strongly advise people to get a second opinion when first DX'd and if you don't like your Dr or how things are going, don't be afraid to change your course.

    I'm working part time and I'm still devoting many hours a week to local political issues. We are in the midst of a hostile takeover. As a friend once said of me, "Phil's always fighting something". Yup, I find it helpful. It keeps me busy...

    I wish everyone the best. Sometimes I am sent emails/messages so I get notifications and do respond but cancer was taking up too much of my time and I needed a vacation from death. I'm sure many of you understand.
    -peace

     

    Thanks for checking in Phil.

    Thanks for checking in Phil.  I kind of intentionally left you off as I got the sense you were stepping back from this place, plus I know members see you on fb and would let us know if there was any news to share.  I get why you would need a break, but I have to tell you that you are one of the folks I tell my husband about all the time.  The fact that someone can be on chemo as long as you and still be actively involved in life, family and community is a great thing. especially good for him to hear as it seems he's on the same path with chemo.   We are in the middle of a 2nd (third actually) opinion.

    Craig is such an incredible loss , but I feel like he lives on through his words here.  I hope (think he did) he knew just how special he was to so many people.

     

  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #8
    PhillieG said:

    I'm on here so rarely I don't even make the list! :-)

    Still here, still on chemo.  I've been taking Xeloda for well over a year, they added Avastin around Dec 2014 after my 7th RFA. I have a few small spots in my lungs but the trend appears to be that things are stable or shrinking.

    So basically, after the first few years of 5-6 rather major surgeries I've been doing the RFAs to manage new growth in my lungs. I did have radiation in April 2013 for 1 spot in my lung near an artery. That didn't go as hoped and it caused irreparable lung damage. I get winded easily (and passing wind doesn't help - doesn't hurt either!)

    I've been in the game for over 11 years with no remission ever so that puts me in an unique (but growing) place among cancer people...I'm living with cancer. My quality of life is fine by my standards but after 11 years I have no recollection of what normal was. To someone else it might not be fine.

    I have not been on the boards often. Newbies do not necessarily want to hear "chemo for life" when they start their journey. I know I would not have wanted to hear that when I started! On the plus side, it's another possible outcome so I feel there's a time and place for it. I can honestly say that the passing of Craig hit me hard. They all impact me but as many of us know, he was a character and will be sorely missed. I feel I'm also at that point where there are more people I "knew" on here than people I "know". Everytime I log on someone else lost their battle.

    What I've learned quite a while ago is that like spirituality/religion, there are many paths we can take to be cured or to extend our lives. I've said this many, many times. There's no "one size fits all" when it comes to cancer treatment. There's no right way, or wrong way to treat it. Thankfully it seems like those arguments have quieted down. I strongly advise people to get a second opinion when first DX'd and if you don't like your Dr or how things are going, don't be afraid to change your course.

    I'm working part time and I'm still devoting many hours a week to local political issues. We are in the midst of a hostile takeover. As a friend once said of me, "Phil's always fighting something". Yup, I find it helpful. It keeps me busy...

    I wish everyone the best. Sometimes I am sent emails/messages so I get notifications and do respond but cancer was taking up too much of my time and I needed a vacation from death. I'm sure many of you understand.
    -peace

     

    Phil, I completely understand

    Phil, I completely understand the cancer taking too much of our time and although we want to know when someone we care about passes, we want to know, but we are afraid to see the posts.

    I'm glad you are doing the "stable thing"... I remember not wanting to hear certain things when we were newbies, I guess it takes time to be ready to accept or process some of this crazy stuff.

     

  • sflgirl
    sflgirl Member Posts: 220 Member
    #9
    PhillieG said:

    I'm on here so rarely I don't even make the list! :-)

    Still here, still on chemo.  I've been taking Xeloda for well over a year, they added Avastin around Dec 2014 after my 7th RFA. I have a few small spots in my lungs but the trend appears to be that things are stable or shrinking.

    So basically, after the first few years of 5-6 rather major surgeries I've been doing the RFAs to manage new growth in my lungs. I did have radiation in April 2013 for 1 spot in my lung near an artery. That didn't go as hoped and it caused irreparable lung damage. I get winded easily (and passing wind doesn't help - doesn't hurt either!)

    I've been in the game for over 11 years with no remission ever so that puts me in an unique (but growing) place among cancer people...I'm living with cancer. My quality of life is fine by my standards but after 11 years I have no recollection of what normal was. To someone else it might not be fine.

    I have not been on the boards often. Newbies do not necessarily want to hear "chemo for life" when they start their journey. I know I would not have wanted to hear that when I started! On the plus side, it's another possible outcome so I feel there's a time and place for it. I can honestly say that the passing of Craig hit me hard. They all impact me but as many of us know, he was a character and will be sorely missed. I feel I'm also at that point where there are more people I "knew" on here than people I "know". Everytime I log on someone else lost their battle.

    What I've learned quite a while ago is that like spirituality/religion, there are many paths we can take to be cured or to extend our lives. I've said this many, many times. There's no "one size fits all" when it comes to cancer treatment. There's no right way, or wrong way to treat it. Thankfully it seems like those arguments have quieted down. I strongly advise people to get a second opinion when first DX'd and if you don't like your Dr or how things are going, don't be afraid to change your course.

    I'm working part time and I'm still devoting many hours a week to local political issues. We are in the midst of a hostile takeover. As a friend once said of me, "Phil's always fighting something". Yup, I find it helpful. It keeps me busy...

    I wish everyone the best. Sometimes I am sent emails/messages so I get notifications and do respond but cancer was taking up too much of my time and I needed a vacation from death. I'm sure many of you understand.
    -peace

     

    Thank you

    Personally as a newbie I am grateful to hear you are living with cancer.  I hope I am that lucky, the alternative sucks.  As a stage 4 with liver mets I'm realistic, but would be happy to consider it a chronic condition. Don't under estimate the hope you give others.

    As for a vacation from death I'm sure everyone here understands, even the newbies.

    Wishing you the best.

    Andrea

  • leidybug
    leidybug Member Posts: 14 Member
    #10
    PhillieG said:

    I'm on here so rarely I don't even make the list! :-)

    Still here, still on chemo.  I've been taking Xeloda for well over a year, they added Avastin around Dec 2014 after my 7th RFA. I have a few small spots in my lungs but the trend appears to be that things are stable or shrinking.

    So basically, after the first few years of 5-6 rather major surgeries I've been doing the RFAs to manage new growth in my lungs. I did have radiation in April 2013 for 1 spot in my lung near an artery. That didn't go as hoped and it caused irreparable lung damage. I get winded easily (and passing wind doesn't help - doesn't hurt either!)

    I've been in the game for over 11 years with no remission ever so that puts me in an unique (but growing) place among cancer people...I'm living with cancer. My quality of life is fine by my standards but after 11 years I have no recollection of what normal was. To someone else it might not be fine.

    I have not been on the boards often. Newbies do not necessarily want to hear "chemo for life" when they start their journey. I know I would not have wanted to hear that when I started! On the plus side, it's another possible outcome so I feel there's a time and place for it. I can honestly say that the passing of Craig hit me hard. They all impact me but as many of us know, he was a character and will be sorely missed. I feel I'm also at that point where there are more people I "knew" on here than people I "know". Everytime I log on someone else lost their battle.

    What I've learned quite a while ago is that like spirituality/religion, there are many paths we can take to be cured or to extend our lives. I've said this many, many times. There's no "one size fits all" when it comes to cancer treatment. There's no right way, or wrong way to treat it. Thankfully it seems like those arguments have quieted down. I strongly advise people to get a second opinion when first DX'd and if you don't like your Dr or how things are going, don't be afraid to change your course.

    I'm working part time and I'm still devoting many hours a week to local political issues. We are in the midst of a hostile takeover. As a friend once said of me, "Phil's always fighting something". Yup, I find it helpful. It keeps me busy...

    I wish everyone the best. Sometimes I am sent emails/messages so I get notifications and do respond but cancer was taking up too much of my time and I needed a vacation from death. I'm sure many of you understand.
    -peace

     

    Thank you

    Phil, 

    Many thanks for your post. I am end stage 4 colorectal cancer and I am on Xeloda and Avestin for maintenance. I was told I will be on this treatment for the rest of my life. I am pretty optimistic and have hope that some day Cancer will be like maintained like Diabeties is. 

    I am happy to live with Cancer as the other alternative is not an options. I will continue my battle until either I beet the Cancer or the Cancer beets me. 

    Again thank you for your update, and hope to hear from you every now and then.

    Congratualtions on accepting your life with cancer, as there are not many who would accept it.

     

    Huggs

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #11
    PhillieG said:

    I'm on here so rarely I don't even make the list! :-)

    Still here, still on chemo.  I've been taking Xeloda for well over a year, they added Avastin around Dec 2014 after my 7th RFA. I have a few small spots in my lungs but the trend appears to be that things are stable or shrinking.

    So basically, after the first few years of 5-6 rather major surgeries I've been doing the RFAs to manage new growth in my lungs. I did have radiation in April 2013 for 1 spot in my lung near an artery. That didn't go as hoped and it caused irreparable lung damage. I get winded easily (and passing wind doesn't help - doesn't hurt either!)

    I've been in the game for over 11 years with no remission ever so that puts me in an unique (but growing) place among cancer people...I'm living with cancer. My quality of life is fine by my standards but after 11 years I have no recollection of what normal was. To someone else it might not be fine.

    I have not been on the boards often. Newbies do not necessarily want to hear "chemo for life" when they start their journey. I know I would not have wanted to hear that when I started! On the plus side, it's another possible outcome so I feel there's a time and place for it. I can honestly say that the passing of Craig hit me hard. They all impact me but as many of us know, he was a character and will be sorely missed. I feel I'm also at that point where there are more people I "knew" on here than people I "know". Everytime I log on someone else lost their battle.

    What I've learned quite a while ago is that like spirituality/religion, there are many paths we can take to be cured or to extend our lives. I've said this many, many times. There's no "one size fits all" when it comes to cancer treatment. There's no right way, or wrong way to treat it. Thankfully it seems like those arguments have quieted down. I strongly advise people to get a second opinion when first DX'd and if you don't like your Dr or how things are going, don't be afraid to change your course.

    I'm working part time and I'm still devoting many hours a week to local political issues. We are in the midst of a hostile takeover. As a friend once said of me, "Phil's always fighting something". Yup, I find it helpful. It keeps me busy...

    I wish everyone the best. Sometimes I am sent emails/messages so I get notifications and do respond but cancer was taking up too much of my time and I needed a vacation from death. I'm sure many of you understand.
    -peace

     

    Hey Phillie G, glad to see

    Hey Phillie G, glad to see you are doing so well.

  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #12
    I am back...I took a break

    I am back...I took a break while life got in the way.  I am doing good.  I am NED for my SRC but have been recently diagnosed with Breast Cancer.  I am in the beginning stages of treatment and am trying to weigh my options....lumpectomy, radiation, and chemo or a mastectomy.

    I am so sorry to hear about Craig.  He was such a wonderful person.  I will try to be more active here... but in the last almost year, there has not been anything to really report.  I still have left flank pain most days but the Drs have no idea what is causing it.... I'll just have to live with it.

     

    Love to all of you!

    Alex

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #13
    Maxiecat said:

    I am back...I took a break

    I am back...I took a break while life got in the way.  I am doing good.  I am NED for my SRC but have been recently diagnosed with Breast Cancer.  I am in the beginning stages of treatment and am trying to weigh my options....lumpectomy, radiation, and chemo or a mastectomy.

    I am so sorry to hear about Craig.  He was such a wonderful person.  I will try to be more active here... but in the last almost year, there has not been anything to really report.  I still have left flank pain most days but the Drs have no idea what is causing it.... I'll just have to live with it.

     

    Love to all of you!

    Alex

    Breast Cancer!

    Honestly, I think you've gone through enough without having a secondary Cancer. I am so sorry to hear this. 

    I hope they have caught it good and early, and wish you well as you make the decision as to how to go forward. 

    Keep in touch.

    Sue - Trubrit

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #14
    Maxiecat said:

    I am back...I took a break

    I am back...I took a break while life got in the way.  I am doing good.  I am NED for my SRC but have been recently diagnosed with Breast Cancer.  I am in the beginning stages of treatment and am trying to weigh my options....lumpectomy, radiation, and chemo or a mastectomy.

    I am so sorry to hear about Craig.  He was such a wonderful person.  I will try to be more active here... but in the last almost year, there has not been anything to really report.  I still have left flank pain most days but the Drs have no idea what is causing it.... I'll just have to live with it.

     

    Love to all of you!

    Alex

    So happy to hear from you

    So happy to hear from you alex!  We were worried about you, but it's great that you didn't need to be here!

     

    im sorry to hear about the new diagnosis, just not fair.

  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #15
    jen2012 said:

    So happy to hear from you

    So happy to hear from you alex!  We were worried about you, but it's great that you didn't need to be here!

     

    im sorry to hear about the new diagnosis, just not fair.

    Thank you guys... I am just

    Thank you guys... I am just trying to set up my next round of appointments now.  I'll need an MRI first - then we will schedule surgery.  I have 2 Drs to meet with first.

     

    Alex

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #16
    Hey what am I chopped liver?

    Hey what am I chopped liver?  What is it with people and chopped liver anyway=)   

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #17
    Maxiecat said:

    I am back...I took a break

    I am back...I took a break while life got in the way.  I am doing good.  I am NED for my SRC but have been recently diagnosed with Breast Cancer.  I am in the beginning stages of treatment and am trying to weigh my options....lumpectomy, radiation, and chemo or a mastectomy.

    I am so sorry to hear about Craig.  He was such a wonderful person.  I will try to be more active here... but in the last almost year, there has not been anything to really report.  I still have left flank pain most days but the Drs have no idea what is causing it.... I'll just have to live with it.

     

    Love to all of you!

    Alex

    My first reaction to this is

    My first reaction to this is are you freaking kidding me?  My second reaction is I'm really sorry.  Boy life just really doesn't make much sense sometimes.  

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #18
    PhillieG said:

    I'm on here so rarely I don't even make the list! :-)

    Still here, still on chemo.  I've been taking Xeloda for well over a year, they added Avastin around Dec 2014 after my 7th RFA. I have a few small spots in my lungs but the trend appears to be that things are stable or shrinking.

    So basically, after the first few years of 5-6 rather major surgeries I've been doing the RFAs to manage new growth in my lungs. I did have radiation in April 2013 for 1 spot in my lung near an artery. That didn't go as hoped and it caused irreparable lung damage. I get winded easily (and passing wind doesn't help - doesn't hurt either!)

    I've been in the game for over 11 years with no remission ever so that puts me in an unique (but growing) place among cancer people...I'm living with cancer. My quality of life is fine by my standards but after 11 years I have no recollection of what normal was. To someone else it might not be fine.

    I have not been on the boards often. Newbies do not necessarily want to hear "chemo for life" when they start their journey. I know I would not have wanted to hear that when I started! On the plus side, it's another possible outcome so I feel there's a time and place for it. I can honestly say that the passing of Craig hit me hard. They all impact me but as many of us know, he was a character and will be sorely missed. I feel I'm also at that point where there are more people I "knew" on here than people I "know". Everytime I log on someone else lost their battle.

    What I've learned quite a while ago is that like spirituality/religion, there are many paths we can take to be cured or to extend our lives. I've said this many, many times. There's no "one size fits all" when it comes to cancer treatment. There's no right way, or wrong way to treat it. Thankfully it seems like those arguments have quieted down. I strongly advise people to get a second opinion when first DX'd and if you don't like your Dr or how things are going, don't be afraid to change your course.

    I'm working part time and I'm still devoting many hours a week to local political issues. We are in the midst of a hostile takeover. As a friend once said of me, "Phil's always fighting something". Yup, I find it helpful. It keeps me busy...

    I wish everyone the best. Sometimes I am sent emails/messages so I get notifications and do respond but cancer was taking up too much of my time and I needed a vacation from death. I'm sure many of you understand.
    -peace

     

    Hey!

    So glad to hear from you. I always enjoy your posts, and I'm glad you're still plugging along. I don't come here too often now, either, but I like to keep up with people.

     

    *hugs*

    Gail

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