Looking for friends and support - 37 year old guy with IIIb

2

Comments

  • tiny one
    tiny one Member Posts: 465 Member
    diagnosed
    Hi Jesse! I was diagnosed Feb 1,07 with colon cancer. I had a resection and ended up with a temporary ileostomy. I was stage 3 with only one lymph node testing positive. I was 48 at time of diagnosis. I had 5 1/2 wks of chemo and radiation and 6 months of chemo. I went thru treatment with pretty mild side effects. Last chemo was Oct 07. Had my reversal Dec 21, 2007. The reversal has been alot harder than all of my treatment. Finally now it's becoming easier. I found 2 great support groups thru the cancer center where I had treatment. There are a couple of people I've met that have had colon cancer also. All are doing great. The doctors at the cancer center are finding out just how important our group is to everyone. Keep checking, you may want to start one up. You are not alone, we're all here for you!!! Congratulations on the baby. My youngest is in Iraq. He was able to come home for a couple of weeks. Hated to see him go back.
  • Mike49
    Mike49 Member Posts: 261
    Hi
    Jesse. I understand the need for support. Initially a 3c, now on 2nd round of chemo after 1 liver met found. Good people on this group and we really are glad you found us.

    Mike
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Erbitux
    Hi Jesse,

    Sorry I missed your question on Erbitux in my other post. I was someone who was given Erbitux just a month before it became standard to first test patients for the k-ras gene mutation before giving it. I ended up testing positive for the kras mutation after taking it for a month and half- then I went off from it, as a positive kras test means erbitux won't ever work for me. If you test normal or wild k-ras type, then Erbitux should hopefully work well for you.
    Bummer for me that I took it anyhow, because I got the world's worse case of rash and acne the doctor and nurses in my oncology office had ever seen (there went the theory of if you get the rash bad then it's working better). I literally probably had a couple hundred acne pustules on my face alone, not to mention all over my scalp, in my ears, neck, back, and arms. I hope yours isn't that bad!

    Anyhow, I recommend that you ask to be put on minocycline, which is an oral antibiotic. This worked better for me than the topical stuff did. I have extremely sensitive skin, so that may be why the topical stuff didn't do it for me (I stopped it after a few days when my skin was sore and majorly peeling from the ointment). The oral minocycline got rid of the acne pustules within a few days.

    Best wishes to you,
    Lisa
  • jessenj
    jessenj Member Posts: 9
    lisa42 said:

    Erbitux
    Hi Jesse,

    Sorry I missed your question on Erbitux in my other post. I was someone who was given Erbitux just a month before it became standard to first test patients for the k-ras gene mutation before giving it. I ended up testing positive for the kras mutation after taking it for a month and half- then I went off from it, as a positive kras test means erbitux won't ever work for me. If you test normal or wild k-ras type, then Erbitux should hopefully work well for you.
    Bummer for me that I took it anyhow, because I got the world's worse case of rash and acne the doctor and nurses in my oncology office had ever seen (there went the theory of if you get the rash bad then it's working better). I literally probably had a couple hundred acne pustules on my face alone, not to mention all over my scalp, in my ears, neck, back, and arms. I hope yours isn't that bad!

    Anyhow, I recommend that you ask to be put on minocycline, which is an oral antibiotic. This worked better for me than the topical stuff did. I have extremely sensitive skin, so that may be why the topical stuff didn't do it for me (I stopped it after a few days when my skin was sore and majorly peeling from the ointment). The oral minocycline got rid of the acne pustules within a few days.

    Best wishes to you,
    Lisa

    Erbitux
    Thanks for the feedback. I had the doctor switch me over to minocycline since I plan to spend time outdoors with the kids. Still lots of nice days outside to be had and I'm determined to teach my 3 year old daughter how to ride her bicycle before her 4th birthday in October. I am still resolute to function as much as I possibly can, and the acne on my face is more a concern than anywhere else. My girls like to kiss me on my cheeks and I feel really bad that they can't with all the creams and such, so if minocycline will clear me up without the need for ointments and gels, I'd be pleased as punch.

    Thanks again. I ever told my wife about how encouraged I am to find this board. Thank you all for your care and understanding.

    If you have a Facebook account, I'd love to add more friends to my network to share with. I can be found at http://www.facebook.com/jessenj
  • Shayenne
    Shayenne Member Posts: 2,342
    jessenj said:

    Erbitux
    Thanks for the feedback. I had the doctor switch me over to minocycline since I plan to spend time outdoors with the kids. Still lots of nice days outside to be had and I'm determined to teach my 3 year old daughter how to ride her bicycle before her 4th birthday in October. I am still resolute to function as much as I possibly can, and the acne on my face is more a concern than anywhere else. My girls like to kiss me on my cheeks and I feel really bad that they can't with all the creams and such, so if minocycline will clear me up without the need for ointments and gels, I'd be pleased as punch.

    Thanks again. I ever told my wife about how encouraged I am to find this board. Thank you all for your care and understanding.

    If you have a Facebook account, I'd love to add more friends to my network to share with. I can be found at http://www.facebook.com/jessenj

    Cool!
    I'm sending you a friend request on Facebook! (Donna Gorslene) I'm also a Farmville addict if you want to be my neighbor as well! LOL

    Uh-OH! I can't find you with that addy you left. Please find me under Donna Gorslene, since that addy won't bring me to your site, and you didn't leave a last name...

    Thanks Jesse!

    ~Donna
  • jessenj
    jessenj Member Posts: 9
    Shayenne said:

    Cool!
    I'm sending you a friend request on Facebook! (Donna Gorslene) I'm also a Farmville addict if you want to be my neighbor as well! LOL

    Uh-OH! I can't find you with that addy you left. Please find me under Donna Gorslene, since that addy won't bring me to your site, and you didn't leave a last name...

    Thanks Jesse!

    ~Donna

    Very strange - I added you
    Very strange - I added you and I changed my privacy settings so now I should be easily found either at http://www.facebook.com/jessenj or by jessenj@mail.com
  • Shayenne
    Shayenne Member Posts: 2,342
    jessenj said:

    Very strange - I added you
    Very strange - I added you and I changed my privacy settings so now I should be easily found either at http://www.facebook.com/jessenj or by jessenj@mail.com

    Thanks!
    I gotcha now~ it must have been your privacy settings, very cool~ I'm glad too see you there as well! :)
  • mommyof2kds
    mommyof2kds Member Posts: 519
    Hi Jesse, welcome to the
    Hi Jesse, welcome to the board. I think you will meet alot of people here who are so knowledgeable and supportive. This is a great site and I hope you find the support you need. I was diagnosed at 35 with stage 3, now 36 and getting the chemo every 2 weeks...
  • kimby
    kimby Member Posts: 797
    Welcome
    Nice to meet you, Jesse. I'm stage IV, still in treatment, diagnosed at 43. You will find the peer support you seek here. This board is full of wonderful people with a wealth of support, information and inspiration. Glad you found us!

    Kimby
  • robinvan
    robinvan Member Posts: 1,012
    We Are Not Alone!
    Hey Jesse,

    By now you see what an awesome community this is. Of the many online forums I have connected with I can honestly say that this is the ONLY one that I have expereinced to be a place of authentic community. I think it may because of what we are all going through.

    I was 46 when diagnosed... WAY older than you but still fairly young to be having stage 4 colon cancer.

    I have 3 daughters who are all now young adults. You have so much fun ahead of you to look forward to.

    Be well... Rob; in Vancouver
  • jessenj
    jessenj Member Posts: 9
    Erbitux acne
    Well - after the loading dose of minocycline, I can tell you that I'm seeing a significant decrease in the amount of newly developed acne. The acne that initially erupted is still there, and is starting to diminish, and I'm not sure if the clyndamiacin gel is helping, but my nurse practitioner told me that I can stop the Hydrocortizone cream and just use the minocycline and gel. So far so good. Thank God for today tho - I feel like a million bucks! Health is generally great today, and no headaches or side effects. The insomnia is a bit unsettling, but I'm at least resting when I can't sleep, so I'm not waking up exhausted every day. Next Tuesday begins my second round of Fulfox 6 and Erbitux, so I'll be there for about several hours and will log in while in the hospital (I'm a nerd and bring my laptop to the onc :)

    Thanks for all the support. This board has been phenomenal for me emotionally and mentally.
  • ldot123
    ldot123 Member Posts: 272
    jessenj said:

    Erbitux acne
    Well - after the loading dose of minocycline, I can tell you that I'm seeing a significant decrease in the amount of newly developed acne. The acne that initially erupted is still there, and is starting to diminish, and I'm not sure if the clyndamiacin gel is helping, but my nurse practitioner told me that I can stop the Hydrocortizone cream and just use the minocycline and gel. So far so good. Thank God for today tho - I feel like a million bucks! Health is generally great today, and no headaches or side effects. The insomnia is a bit unsettling, but I'm at least resting when I can't sleep, so I'm not waking up exhausted every day. Next Tuesday begins my second round of Fulfox 6 and Erbitux, so I'll be there for about several hours and will log in while in the hospital (I'm a nerd and bring my laptop to the onc :)

    Thanks for all the support. This board has been phenomenal for me emotionally and mentally.

    Welcome
    Hang in there. I was a Stage 3 guy and have been NED since 2007. Hoping to stay that way. There are a lot of success stories here and the people on this board offer fantastic support.

    Cheers, Lance
  • grammadebbie
    grammadebbie Member Posts: 464
    Erbitux
    Hi Jesse,

    I had originally replied to your first post to welcome you. Somehow (chemo brain) I must have erased the post. It was really good (ha ha). Oh well, much has transpired and you have received alot of support and information. This is a great forum. I'm fairly new here.

    I have a question for you now. I was diagnosed stage III c 8/38 lymph nodes positive in Oct 2007. Had emergency surgery/resection chemo for 6 months. I don't recall Erbitux ever being mentioned. Is this a clinical trial for stage III? I think I read where its protocol for Stage IV. Thanks for any info you may have.

    Welcome and be blessed. Going to send this beforeI erase it too.

    Debbie (gramma - there is another Debbie here so I added gramma)
  • GOOFYLADIE
    GOOFYLADIE Member Posts: 232 Member
    jessenj said:

    Erbitux acne
    Well - after the loading dose of minocycline, I can tell you that I'm seeing a significant decrease in the amount of newly developed acne. The acne that initially erupted is still there, and is starting to diminish, and I'm not sure if the clyndamiacin gel is helping, but my nurse practitioner told me that I can stop the Hydrocortizone cream and just use the minocycline and gel. So far so good. Thank God for today tho - I feel like a million bucks! Health is generally great today, and no headaches or side effects. The insomnia is a bit unsettling, but I'm at least resting when I can't sleep, so I'm not waking up exhausted every day. Next Tuesday begins my second round of Fulfox 6 and Erbitux, so I'll be there for about several hours and will log in while in the hospital (I'm a nerd and bring my laptop to the onc :)

    Thanks for all the support. This board has been phenomenal for me emotionally and mentally.

    Hi Jesse
    I just wanted to let you know that in 1998 I was 31 and I had stageIV Dukes C Carcinoma. The pathology report read that 19 of the 32 lymph nodes were positive. My 3 boys were 10, 7, 4. I truly know what you are going thru, I have read some of your posts and you sound on the right track. I have to say attitude is everything. You can not sit and say why me, you have to do what you need to do to get thru, and over the cancer. I call it dippin in crap and coming up smelling like a rose. It was not easy, and some days were horrific, others I remember like yesterday. I watched my 10 year old play his little league games, the group let me park on a field my the baseball field. I puked in a bucket and they set a porta potty down by the third base line outside the field so I could use it when I needed it with my own key. People can blow you way if you just let them, open up and share and everything you give comes back ten fold. I am living proof. I just watched my 21 year old who was 10 graduate from Jr. college. My 18 year graduated high school. 16 year old is now a junior is high school. I too was the youngest in the Chemo room but I sat and I listened to every word that was said. I didn't know my destiny at the time. So I held on to every word that was said. You might ask the doctors about ativan. It is a sleeping medication however in chemo patients it works on nausea. So you get the benefits of sleep also. I hope to hear from you and I am an open book. Ask anything you wish. The answers give you power and hope to fight this hideous, helacious disease. Take care,
    goofyladie (Cass)
  • pokismom
    pokismom Member Posts: 153
    jessenj said:

    Erbitux
    Thanks for the feedback. I had the doctor switch me over to minocycline since I plan to spend time outdoors with the kids. Still lots of nice days outside to be had and I'm determined to teach my 3 year old daughter how to ride her bicycle before her 4th birthday in October. I am still resolute to function as much as I possibly can, and the acne on my face is more a concern than anywhere else. My girls like to kiss me on my cheeks and I feel really bad that they can't with all the creams and such, so if minocycline will clear me up without the need for ointments and gels, I'd be pleased as punch.

    Thanks again. I ever told my wife about how encouraged I am to find this board. Thank you all for your care and understanding.

    If you have a Facebook account, I'd love to add more friends to my network to share with. I can be found at http://www.facebook.com/jessenj

    Erbitux
    Hi Jesse,
    I was diagnosed stage IIIc? in November 2007, followed by resection in December 2007 and Folfox/Erbitux (trial) in Jan. 2008. I know how you feel, it seems like such a whirlwind of things coming at you and no time to think, be strong and have faith. I had a bad acne from the Erbitux also, chest, face, and back. I think I had a zillion pimples at one time on my face. It hurt at times and being that I have sleep apnea I could not use my mask because of the acne. My daughters play softball and I live in Hawaii so being in the sun had it's effect on my face also. I had a lot of hats, with big brims. I had that same gel to put on the acne and that helped a lot. I had every side effect I think that is associated with chemo and my doctor would just say week after week I think thats a side effect. I know how you feel, you're at chemo everyweek, when everyone else is there every other week. But, if the Erbitux works for you it'll be sooo worth it, so hang in there. I felt so alone, and at times would cry when I was up by myself at night. I have a huge support group at home but somehow, you still have that alone feeling. I have been faced again with another battle, I will be going in for another biopsy on the 14th, of the lung. But, this time I had started going to church, I felt that if I felt the presence of God with me maybe this battle won't be so lonely, and I do feel better knowing that he is by myside. There are so many survivors here on this board, that are so knowledgeable and compassionate it is unreal. I don't post too much, but read a lot of everyones stories of hope and quests for answers. I recently started walking a lot and doing everything I can think of to make my body strong. Juicing, eating a healthy diet and exercise seem to be a good thing for me. Take care and if I can be of help in anyway don't hesitate to ask!
    donna
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    Welcome to the board
    Glad you found us Jesse, you have found a really safe and great place to be. If you need to rant, rave, cry, or laugh just share it with your new online family.
    We all care and understand what you are going through.
    Big hugs
    Sonia
  • eric38
    eric38 Member Posts: 583
    jessenj said:

    Erbitux acne
    Well - after the loading dose of minocycline, I can tell you that I'm seeing a significant decrease in the amount of newly developed acne. The acne that initially erupted is still there, and is starting to diminish, and I'm not sure if the clyndamiacin gel is helping, but my nurse practitioner told me that I can stop the Hydrocortizone cream and just use the minocycline and gel. So far so good. Thank God for today tho - I feel like a million bucks! Health is generally great today, and no headaches or side effects. The insomnia is a bit unsettling, but I'm at least resting when I can't sleep, so I'm not waking up exhausted every day. Next Tuesday begins my second round of Fulfox 6 and Erbitux, so I'll be there for about several hours and will log in while in the hospital (I'm a nerd and bring my laptop to the onc :)

    Thanks for all the support. This board has been phenomenal for me emotionally and mentally.

    Jesse
    Hello, Jesse
    My name is Eric. I am 39 and was diagnosed with stage 4 colon cancer about 4 - 5 months ago. I had 3-4 liver lesions which have disappeared after only 6 treatments. I still have some minor involvement with some abdominal lymph nodes so the doctor has put me on a different regimen for the next 6 treatments. For the first round of treatments I got erbitux every week and my complete chemo treatment every 2 weeks. So, all together I had 12 treatments of erbitux. For me the initial outbreak was a little painful. It felt like my face was on fire. After that the rash on my face came and went for a while but I had a constant rash on my chest that never went away. Toward the end the rash got worse and spread into my legs mostly but some on my arms too. I tended to have that dry itchy feeling on my face. If I wore eucarin cream like a mask it seemed to help alot. Not just rub it on but spread it thickly over my face and let it sit there like a mask and soak in. I did the antibiotic cream too and it did seem to dry out the acne. It isn`t pretty but it is temporary. I just made jokes about scaring young children and morphing into a toxic super mutant.

    Eric
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Sonia32 said:

    Welcome to the board
    Glad you found us Jesse, you have found a really safe and great place to be. If you need to rant, rave, cry, or laugh just share it with your new online family.
    We all care and understand what you are going through.
    Big hugs
    Sonia

    Email me anytime
    Hello Jesse, My name is Brooks and I have stage 3 rectal cancer. I have went through 6 ½ weeks of chemo and radiation and then on August 13 surgery to remove the tumor. Surgery went great and the tumor showed NO signs of cancer left from the treatments. Now I’m at home recovering from the surgery and preparing for my final round of chemo. To everyone who is fighting cancer remember to stay strong and contact me if you don’t have anyone else to talk to. Just got back from seing my chemo doctor yesterday (Sept 5th 2009). I start my last round (I hope) of chemo next Wednesday for 18 to 20 weeks. They'll put in the PICC line on Tuesday.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Hello Jesse
    Hello Jesse, My name is Brooks and I have stage 3 rectal cancer. I have went through 6 ½ weeks of chemo and radiation and then on August 13 surgery to remove the tumor. Surgery went great and the tumor showed NO signs of cancer left from the treatments. Now I’m at home recovering from the surgery and preparing for my final round of chemo. To everyone who is fighting cancer remember to stay strong and contact me if you don’t have anyone else to talk to. Just got back from seing my chemo doctor yesterday (Sept 5th 2009). I start my last round (I hope) of chemo next Wednesday for 18 to 20 weeks. They'll put in the PICC line on Tuesday
  • jessenj
    jessenj Member Posts: 9
    Finally finished
    Its been a long road, starting with diagnoses of Stage IIIB colorectal cancer in my sigmoid colon on June 10th, 2009. I was diagnosed with 1 lymph node affected out of 28 biopsied. I have just completed 12 rounds of 5FU chemotherapy, as well as 16 rounds of Erbitux (only to learn that the studies proved Erbitux to be useless in treating colon cancer). I am now set to return to work in about 2 weeks and I just wanted to let everyone know that I'm fighting this thing with everything I have, and the low lymph node involvement, combined with the Stage IIIb K-RAS type tumor, has put me at a 5 year survival rate of 72%, so I'm extremely optimistic at this point.

    Just wanted to post an update for anyone who followed along.

    Love you all,

    Jesse