Starting Xeliri + Avastin

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Comments

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Mikenh said:

    Pretty crappy right now. My

    Pretty crappy right now. My toes and fingers are a real mess (look and feel awful). I think that the Oxaliplatin has peaked though so should be improving from here. Another two cycles after this one. I'm hopeful but it's definitely a long, long slog. It doesn't compare to Stage 4 but I know a bit of what you guys are going through.

    I agree with Tru

    We are all fighting hard, dealing with similar treatments, side effects, and anxiety! Plus it makes me feel doomed when people react to my stage 4 diagnosis. I know you are absolutely compassionate and caring in your comments. And maybe I'm crazy or in denial, but I refuse to lose hope based on my stage.  

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Trubrit said:

    Good luck!

    I hope you respond as our friend Grace, has. 

    All I know about Irinotecan , is that they nickname it 'I-run-to-can', because of its proclivity to keep you running to the loo. 

    Hope you tolerate it well, and see much success. 

    Tru

    Lolz our good friend diahhrea

    That's the first thing the Oncologist warned me of, loose stools. Well, for me that just means I'll use more colostomy bags. I can do it!  Thanks, Tru. You and the others here are the best support group around!

  • BRHMichigan
    BRHMichigan Member Posts: 368
    lizard44 said:

    Avastin, Irinotecan

    I haven't had the same combination  that you'll be on, and have never  had Xeloda, but I  did have Avastin  with 8  Folfox treatments plus 4 5-FU/Fuslilev/Avastin treatments  following    28  radiation treatments with 5-FU in late 2015. I've been on a combination of irinotecan plus Erbitux every other week  since April, 2016.  I don't remember any adverse  events from the Avastin other than the fatigue, but it wasn't bad enough to keep me from being reasonably active, getting out and doing things. My hair did begin to thin after 6 treatments with the irinotecan/Erbitux, but I had  it shaved off on the sides, spiked the top and dyed it blue  as a protest ;-) I bought a wig but it was summer and the wig was uncomfortable in the  Alabama heat. The hair grew back and  hasn't thinned out again. So far,  the chemo has kept the cancer in check ( had a CT scan today,  so we'll see if they're still working when I get the results tomorrow).  I've felt pretty good throughout treatment with only minor problems.With your positive attitude and the support of your family, I  feel pretty sure you'll come through with flying colors. We're all  pulling for you. 

    Grace/lizard44

    Great advice

    I appreciate your comments! My hair thinned a ton last year from rapid weight loss. Not sure what to expect when it starts really falling out. Will be yet another 'great' cancer experience I guess. Good luck with your scan results. I feel like every victory for one of us helps all of us!

  • Canadian Sandy
    Canadian Sandy Member Posts: 727 Member

    Thank you, Sandy!

    Yes, I had to make a conscious choice to get out of initial shock and depression. Life is too short to waste a single day.  Please tell me how you are doing! You must still be recovering from surgery. 

    i am much better than I was,

    i am much better than I was, most of the pain has gone now. Thanks for asking. You can find really cute chemo slouch hats online. I loved mine and got many compliments. Take care of yourself.

    Go to headcovers.com they have a lot.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    Beth

    i am so happy you are feeling strong enough for the chemo. My husband only did one dose of irinotecan but did 12 of Avastin. Not sure if it gave him any side effects because he was doing Folfox with it. You are totally going to rock this and get through it. No one needs hair! Actually my husband’s Hair thinned and it all fell out in his legs. Nothing noticeable though. I am totally here rooting for you and sending love and positive thoughts!!

  • lizard44
    lizard44 Member Posts: 409

    Lolz our good friend diahhrea

    That's the first thing the Oncologist warned me of, loose stools. Well, for me that just means I'll use more colostomy bags. I can do it!  Thanks, Tru. You and the others here are the best support group around!

    Diarrhea and colostomy bags

    My oncologist wrote a  script for Lomotil  when I began the irinotecan.  I only needed them after the first infusion.  Diarrhea hasn't been a problem since,  maybe because of the pre-meds  I get before the irinotecan infusion. I always take an extra  pouch wtih me just in case, though. I also learned today that it's a good idea to take  not one, but at least two, extra bags with me  to a CT scan session. Wow- that contrast  dye  they administer can run through you and fill up a pouch in no time flat. By the time I got home I looked as though I had a fully inflated beach ball on my abdomen! Thank goodness it didn't burst!

    Grace/lizard44

  • airborne72
    airborne72 Member Posts: 286 Member

    Jim & Kim

    You are two special people here, and your encouragement and prayers mean the world to me. Jim, I just love your finish line photo for so many reasons. And I've mentioned before how much beauty and grace Kim exemplifies. I just read about how Sharon Osbourne beat CRC down after a 2002 diagnosis. It is possible. 

    Memories

    Beth:

    Ironically, this is a very special picture for me.  I was initially hesitant to post it for personal reasons.  This was my last run - a half marathon in October 2009.  I had just finished my bout with prostate cancer and struggled to go the distance.  Little did I know that I would soon undergo two spinal fusion surgeries, which ended my running.  And to top all of that, I never imagined the ravages of rectal cancer and what it would do to me in 2017. 

    On a humorus note, I ran the 13.1 miles with no worries about urinary incontinence!  No one could tell the difference between urine and sweat.  Ha!

    That is my only son in the photo with me.  He is not a runner but he agreed to run the race with me in my honor.  I was crying after we crossed the finish line and gave him a big, sweaty hug.  No one in the crowd had any idea of the significance of that moment.  This is one of those memories that will remain with me forever.

    As you well know, our families are so much a part of our fight against CRC, and any ailment.  We have been blessed to bring them into this life and to show them the way.  There comes a time when we must hand off the baton to another runner, and let that person run the race.  It is truly touching when it is a son or daughter who accepts the responsibility and continues to run the race of life.  For me, this photograph captures that moment.

    You are now facing a great challenge in your life but I know that your family is supporting you all the way to the finish line, as are the rest of us on this forum.  You can do this.

    Jim

     

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited April 2018 #29
    Woodytele said:

    Mistletoe

    Can you send me details of the mistletoe injections. I would appreciate it. 

    Yes!

    It's not presented as a cure, but has helped me immensely. 

  • BRHMichigan
    BRHMichigan Member Posts: 368

    i am much better than I was,

    i am much better than I was, most of the pain has gone now. Thanks for asking. You can find really cute chemo slouch hats online. I loved mine and got many compliments. Take care of yourself.

    Go to headcovers.com they have a lot.

    Great idea

    I really have no idea what to do. This will be a great option!

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited April 2018 #31
    lizard44 said:

    Diarrhea and colostomy bags

    My oncologist wrote a  script for Lomotil  when I began the irinotecan.  I only needed them after the first infusion.  Diarrhea hasn't been a problem since,  maybe because of the pre-meds  I get before the irinotecan infusion. I always take an extra  pouch wtih me just in case, though. I also learned today that it's a good idea to take  not one, but at least two, extra bags with me  to a CT scan session. Wow- that contrast  dye  they administer can run through you and fill up a pouch in no time flat. By the time I got home I looked as though I had a fully inflated beach ball on my abdomen! Thank goodness it didn't burst!

    Grace/lizard44

    We laugh

    Grace, I am so glad I'm not the only one who finds humor in our situation. I can't believe I had such a fear of having a colostomy. It is certainly different but no big deal. I had to change it twice at work the other day and felt really comfortable for the first time. I wasn't affected like you were with my CTs though! 

  • BRHMichigan
    BRHMichigan Member Posts: 368

    Beth

    i am so happy you are feeling strong enough for the chemo. My husband only did one dose of irinotecan but did 12 of Avastin. Not sure if it gave him any side effects because he was doing Folfox with it. You are totally going to rock this and get through it. No one needs hair! Actually my husband’s Hair thinned and it all fell out in his legs. Nothing noticeable though. I am totally here rooting for you and sending love and positive thoughts!!

    Another positive

    Losing leg hair would be a plus! Thanks for your support, Ruth. How's your dh doing? 

  • BRHMichigan
    BRHMichigan Member Posts: 368

    Memories

    Beth:

    Ironically, this is a very special picture for me.  I was initially hesitant to post it for personal reasons.  This was my last run - a half marathon in October 2009.  I had just finished my bout with prostate cancer and struggled to go the distance.  Little did I know that I would soon undergo two spinal fusion surgeries, which ended my running.  And to top all of that, I never imagined the ravages of rectal cancer and what it would do to me in 2017. 

    On a humorus note, I ran the 13.1 miles with no worries about urinary incontinence!  No one could tell the difference between urine and sweat.  Ha!

    That is my only son in the photo with me.  He is not a runner but he agreed to run the race with me in my honor.  I was crying after we crossed the finish line and gave him a big, sweaty hug.  No one in the crowd had any idea of the significance of that moment.  This is one of those memories that will remain with me forever.

    As you well know, our families are so much a part of our fight against CRC, and any ailment.  We have been blessed to bring them into this life and to show them the way.  There comes a time when we must hand off the baton to another runner, and let that person run the race.  It is truly touching when it is a son or daughter who accepts the responsibility and continues to run the race of life.  For me, this photograph captures that moment.

    You are now facing a great challenge in your life but I know that your family is supporting you all the way to the finish line, as are the rest of us on this forum.  You can do this.

    Jim

     

    Wow

    Thank you for sharing that very touching and powerful story. Your son must admire and live you very much. What more can one ask for in life? It's a spectacular photo. 

    And we still have a lot of living to do. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member

    Another positive

    Losing leg hair would be a plus! Thanks for your support, Ruth. How's your dh doing? 

    He is ok

    one more week until his surgery, having his stent removed on Thursday. I am just hoping nothing else goes wrong or comes up before the 1st!

  • BRHMichigan
    BRHMichigan Member Posts: 368

    He is ok

    one more week until his surgery, having his stent removed on Thursday. I am just hoping nothing else goes wrong or comes up before the 1st!

    You got this!

    I really get nervous counting down to a procedure, especially surgery. Your husband and family are in my prayers! 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    edited April 2018 #36

    Memories

    Beth:

    Ironically, this is a very special picture for me.  I was initially hesitant to post it for personal reasons.  This was my last run - a half marathon in October 2009.  I had just finished my bout with prostate cancer and struggled to go the distance.  Little did I know that I would soon undergo two spinal fusion surgeries, which ended my running.  And to top all of that, I never imagined the ravages of rectal cancer and what it would do to me in 2017. 

    On a humorus note, I ran the 13.1 miles with no worries about urinary incontinence!  No one could tell the difference between urine and sweat.  Ha!

    That is my only son in the photo with me.  He is not a runner but he agreed to run the race with me in my honor.  I was crying after we crossed the finish line and gave him a big, sweaty hug.  No one in the crowd had any idea of the significance of that moment.  This is one of those memories that will remain with me forever.

    As you well know, our families are so much a part of our fight against CRC, and any ailment.  We have been blessed to bring them into this life and to show them the way.  There comes a time when we must hand off the baton to another runner, and let that person run the race.  It is truly touching when it is a son or daughter who accepts the responsibility and continues to run the race of life.  For me, this photograph captures that moment.

    You are now facing a great challenge in your life but I know that your family is supporting you all the way to the finish line, as are the rest of us on this forum.  You can do this.

    Jim

     

    What a Milestone

    How truly blessed you must be to have a son, that really doesn't run, took that challenge with you.  Sometimes, like a challenge, is what it takes to move forward and he was willing to do this because of you.  It shows what a wonderful person you are and what a wonderful son you have raised.  You must have been both sweaty so who's sweat is on who. Glad you both finished the race. 

    Kim

  • aoccc2015
    aoccc2015 Member Posts: 37
    lizard44 said:

    Diarrhea and colostomy bags

    My oncologist wrote a  script for Lomotil  when I began the irinotecan.  I only needed them after the first infusion.  Diarrhea hasn't been a problem since,  maybe because of the pre-meds  I get before the irinotecan infusion. I always take an extra  pouch wtih me just in case, though. I also learned today that it's a good idea to take  not one, but at least two, extra bags with me  to a CT scan session. Wow- that contrast  dye  they administer can run through you and fill up a pouch in no time flat. By the time I got home I looked as though I had a fully inflated beach ball on my abdomen! Thank goodness it didn't burst!

    Grace/lizard44

    haha yeah I had that happen

    haha yeah I had that happen my first few rounds of iri..didnt even notice it until i got up out of the chair and like 20 lbs of a poop balloon hanging from me lol. Still at round 13 now I pop a few anti diarehea pills before treatment and the next day my bags have to be squeezed out they are so thick :). My hair actually got thicker on my head but my arm hair and leg hair is patchy in areas my body rubs against clothing at work. No real issues other then hiccups for a day... I hope it works that easy for you..take care.

  • Cindy225
    Cindy225 Member Posts: 172

    Memories

    Beth:

    Ironically, this is a very special picture for me.  I was initially hesitant to post it for personal reasons.  This was my last run - a half marathon in October 2009.  I had just finished my bout with prostate cancer and struggled to go the distance.  Little did I know that I would soon undergo two spinal fusion surgeries, which ended my running.  And to top all of that, I never imagined the ravages of rectal cancer and what it would do to me in 2017. 

    On a humorus note, I ran the 13.1 miles with no worries about urinary incontinence!  No one could tell the difference between urine and sweat.  Ha!

    That is my only son in the photo with me.  He is not a runner but he agreed to run the race with me in my honor.  I was crying after we crossed the finish line and gave him a big, sweaty hug.  No one in the crowd had any idea of the significance of that moment.  This is one of those memories that will remain with me forever.

    As you well know, our families are so much a part of our fight against CRC, and any ailment.  We have been blessed to bring them into this life and to show them the way.  There comes a time when we must hand off the baton to another runner, and let that person run the race.  It is truly touching when it is a son or daughter who accepts the responsibility and continues to run the race of life.  For me, this photograph captures that moment.

    You are now facing a great challenge in your life but I know that your family is supporting you all the way to the finish line, as are the rest of us on this forum.  You can do this.

    Jim

     

    Memories

    Wow! Great photo and personal story Jim.  It gives me chills...  Such a treasured memory... 

    Cindy

  • BRHMichigan
    BRHMichigan Member Posts: 368
    aoccc2015 said:

    haha yeah I had that happen

    haha yeah I had that happen my first few rounds of iri..didnt even notice it until i got up out of the chair and like 20 lbs of a poop balloon hanging from me lol. Still at round 13 now I pop a few anti diarehea pills before treatment and the next day my bags have to be squeezed out they are so thick :). My hair actually got thicker on my head but my arm hair and leg hair is patchy in areas my body rubs against clothing at work. No real issues other then hiccups for a day... I hope it works that easy for you..take care.

    Thicker hair?

    That is encouraging! I'm definitely bringing extra bags to the infusion. Thanks for the reminder. Side note: don't know how anyone can stand the drainable bags. I switched to disposables early on. I know I'm not helping the environment much, but far less mess. :)