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

jessenj
jessenj Member Posts: 9
edited March 2014 in Colorectal Cancer #1
Man - I'm so happy to find this network. Let me introduce myself. My name is Jesse. I am a father of 2 girls. Nicole, my eldest, is going to be 4 years old in October, and Jennifer, is my youngest, at 18 months. My wife and I found out we were pregnant with our third at the end of April, and at the beginning of June, we learned that I was having a son!

That was the end of the good news.

June 10th, I had a colonoscopy due to abdominal cramps, and lo and behold, I had an 8cm x 1.5cm mass.

July 2nd, I had a 5 hour laparoscopic sigmoid colectomy. After 5 days in the hospital, I was home and on my way to recovery.

July 10th, I got the pathology reports of the lymph node collections, and of the 23 removed, one node came back positive. Bingo, Stage IIIb.

August 20th, I had my port installed.

August 24th, I began a 6 month regimen of Fulfox-6 (1 day of treatment and 2 days of a pump) and a clinical trial of Erbitux (weekly).

Well, here we are today. I have gone through my first of 12 rounds of chemo and 2 round of 24 Erbitux.

I'm feeling generally great, but I am very much alone in my treatment and am looking for some emotional support and encouragement. I have no idea where to begin to look for a local support group, but as I look around the treatment center where I get my chemo, I am the youngest patient by about 30 years. So, I'm looking for more of my peers who can help me cope with what this all means to me, and to hear other peoples stories for encouragement and camaraderie.

To know I'm not alone is what I need right now.

Thanks and looking forward to getting to make some new friends.

Jesse
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Comments

  • karguy
    karguy Member Posts: 1,020 Member
    Jesse
    Welcome to the board,you will find alot of support,and advice here.I had stage 3 going on stage 4 colorectal cancer.I did chemo,and radiation,then surgery.They removed the tumor,11 lymph nodes,and my appendix.I also have a permanant colostomy.My surgery was 7/08 and so far I am ned.You are not alone in your fight with cancer,there will be others responding to your post,I will pray that you will be ok.
  • sfmarie
    sfmarie Member Posts: 602
    You are in the right place
    My sister was dx in 03/09 39, three kids 4, 6, & 8, stage IV with mets to liver and ab. She has completed the same Erbitux and 5FU and is now onto another round of chemo. Her hospital has a young cancer support group. She is also seeing someone at Stanford, and I just attended a colon cancer support group that is open to patients and caregivers and family members. Ask your doctor. I am sure there are some in your area.
    You will find alot of knowledgeable colon cancer survivors here and I am amazed at the kindness of the people here.
    I'll add you and your family to my prayer list.
    Marie
  • Shayenne
    Shayenne Member Posts: 2,342
    karguy said:

    Jesse
    Welcome to the board,you will find alot of support,and advice here.I had stage 3 going on stage 4 colorectal cancer.I did chemo,and radiation,then surgery.They removed the tumor,11 lymph nodes,and my appendix.I also have a permanant colostomy.My surgery was 7/08 and so far I am ned.You are not alone in your fight with cancer,there will be others responding to your post,I will pray that you will be ok.

    Welcome!!
    Well, hello Jesse and welcome to the forum! You'll find alot of great people here who will help you through this, and anything you need to ask, you just go right ahead!

    My name is Donna, and I am at Stage 4 CC with mets to the liver, and was diagnosed in January of this year, I had NO symptoms, just weight gain! and a hardness in my abdomen area that all of a sudden appeared, and wanted to get checked out.

    I was put on Folfiri with Avastin, 12 rounds, which has been interrupted, due to some setbacks I had, an infection, and then my colon ruptured, causing me to have a temporary colostomy. I just got out of the hospital a month ago due to a blockage, which took 3 weeks, and surgery. I've had about 5 surgeries since January, but now that I am healed from the blockage surgery, I am back on chemo, I start my 9th treatment tomorrow, and hope all goes well with no setback for the last 4 of my treatments.

    There is alot of hope out there, alot of people have been living with this cancer for years, so people will tell you, don't read all the stats on the internet, they are outdated, and technology has come a very long way, where they have many more options, and better medicines. Just keep that positive attitude that you will beat this, and let nothing get in your way!

    I hope to see you post often, you will find alot of encouraging people here anytime, and it's really great meeting you! your family sounds lovely. I am 44, am married with 4 children, 3 girls, and my youngest, a boy!

    You will be in my thoughts and prayers, and I think you'll like it, we're like a second family here, and hope you will be a part of us. We're all in this together!

    Hugsss!
    ~Donna
  • GetBusyLivin
    GetBusyLivin Member Posts: 25
    Hi Jesse
    I just started posting here too. I'm 41, my hubby is 46 and he is battling Stage 4 colon ca with liver involvement. So we're a little older than you, but still usually the youngest ones in the chemo room. You're definitely not alone. It's a scary time, but there are so many great survivor stories around here, it's really encouraging. An important lesson I've learned here is not to believe the current statistics, they are outdated. New treatments are being developed all the time. There is so much to be hopeful for!

    -AJ
  • emrose
    emrose Member Posts: 136
    Hi jesse
    I am 27 years old and pregnant with my first - a little boy due October 10!! My husband is 34 and also has stage IIIb (1 of 26 nodes positive). Sounds like a similar story! (his was also in his sigmoid colon) My husband's treatment center specializes in gynocological cancers so not only is he usually 30 - 40 years younger than everyone but he's the only guy! When I'm with him we really stick out! A young pregnant couple with our laptops and iPods... I'm sure everyone is like "what are they doing here!?"

    Chemo has been rough for my husband, and it's been hard to go through the emotions of a pregnancy at the same time!! But it can be done!! He has his last treatment Thursday, and will be disconnected Saturday. The port will be removed end of September, a week or two before we welcome our baby boy into this world!

    It's definitely a rollercoaster!!! You will experience every emotion imaginable! From the ultrasounds... To the chemo... To everything in between... It's a crazy time! In fact, my husband did end up deciding to take an anti depressant and that has been good for him.

    Just know that stage IIIb is completely treatable and only 1 positive node is a good sign. We are thinking very positively about the future!!

    It's nice to "meet" you Jesse... And although I hate that you are going through this... It's nice to know we are not alone - YOU are not alone!! You'll get through this, and on your off chemo weeks you might even feel close to normal! Before you know it you'll have a beautiful baby and you'll finish chemo... And this will become just one heck of a story to tell your son when he's older!
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Hi Jesse
    HI Jesse,
    I'm glad you found us. This board has been incredible support for me and my husband. My "very healthy" husband was diagnosed with stage IIIc cc in Jan 09. His colonoscopy was routine. He just finished his Folfox 6 chemo. His last round was 2 weeks ago. He has a scan next week.

    Although **** is 51 he is the youngest patient as well. We found our neighbors, friends and this board to be good support. There is also a board founded by an under 50 cc survivor. She founded it so younger folks would have a place to go. There are people of all ages on both boards but you might want to check it out too. Google "The Colon Club".

    We're here for you.

    Aloha,
    Kathleen
  • kristasplace
    kristasplace Member Posts: 957 Member

    Hi Jesse
    HI Jesse,
    I'm glad you found us. This board has been incredible support for me and my husband. My "very healthy" husband was diagnosed with stage IIIc cc in Jan 09. His colonoscopy was routine. He just finished his Folfox 6 chemo. His last round was 2 weeks ago. He has a scan next week.

    Although **** is 51 he is the youngest patient as well. We found our neighbors, friends and this board to be good support. There is also a board founded by an under 50 cc survivor. She founded it so younger folks would have a place to go. There are people of all ages on both boards but you might want to check it out too. Google "The Colon Club".

    We're here for you.

    Aloha,
    Kathleen

    Welcome, Jesse!
    I'm so glad you found us! No, you're not alone!

    I was diagnosed in August of 2007 at the age of 38 with stage IIIb (4 our of 14 lymphs. I thought a IIIb was more than three lymph nodes, so i guess i'm a IIIc. Hello chemobrain!!) I have a possible left lung metastases, and possible recurrence at ground zero. At any rate, you will find many young people here with this cancer. All of the doctors seem baffled by this, and unfortunately many of us are not catching it sooner as a result. I was symptomatic for two years with visits every once in a while to the ER. No doctor believed it could be cancer, and so the story goes!

    I get the entire bulk of my support from the wonderful people on this board. They are the strongest and bravest! No one (especially your doctors) can understand what you're going through except those of us who are going through it, or who have/are suffered/ing with a loved one going through it. If you need answers about your treatment, or if you just need to come vent, we'll be here for you.

    Looking forward to seeing more posts!
    Hugs,
    Krista
  • Patteee
    Patteee Member Posts: 945
    Welcome to our little home
    Welcome to our little home on the Net:)
    Sorry to hear about your dx, but glad you are on the other side of it and facing forward. I think that is the best possible piece of support I can give you. Don't look back on this. Keep yourself focused in the present and the "game plan" for the days, weeks and months to come.
    I was dx'd 4 days after my first grandchild was born, 15 months ago. For what seemed to be the longest time, everytime I would connect the two together. For what felt like these 2 life changing events forever connected by fate. And they did balance one another out- In the worse of days, holding him, snuggling him, smelling him- that joy was the best medicine and statement I could have on what was important and how I wanted to define my life. So use your girls and your unborn son to help you focus and re-focus on the joy of life and living.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Our Side of the World
    What's happenin' Jesse?

    Welcome to the board and it's nice to meet you.

    My cancer started out when I was 43, about 5+ years ago. I too was the youngest person in Infusion when I was getting treatments. I was doing chemo again about 9 months ago now, and I was still one of the youngest persons there, there was a guy who was about your age.

    I was initially a stage IIb, but am now Stage IV...I've had mets to the liver and now to the pleura of the lung...surgery for this is upcoming this month after I meet with the surgeon and secure a date.

    A terrific website that you found and I am glad that you found it early - it will help you very much through your journey....very good people here who have a plethera of experience with this disease.

    Well, your off and running with your 1st chemo treatments - post any questions or anything you'd like - always someone here to talk with.

    You can click on my name if you want to read my story - I'm into my 6th year in my battle and am still standing strong. Best of luck to you and it was nice to meet you...look forward to hearing from you.

    -Craig
  • mac1212
    mac1212 Member Posts: 31
    Hey Jesse,
    My name is Brian.

    Hey Jesse,

    My name is Brian. I am 39 and I was dx on July 1st with IIa rectal cancer. I just finished 5 weeks of radiation and chemo (Xeloda) and have my surgery scheduled at the end of October. There are a lot of people on here who are great. Hang in there.

    Brian
  • nudgie
    nudgie Member Posts: 1,478 Member
    I am
    a little posting to your request but glad to do so. Welcome to the most supportive, caring and loving family you will on the internet.

    I was 42 yrs old when DX with Stage II Colon Cancer by emergency surgery in 2006. I was on the FLOFOX regime which was 5FU, Lecovorin (sp?) and Oxy every other week for 6 months and/or 12 treatments. My treatment was considered an "insurance" policy just in case of any microscope cancer cells floating around.

    I reached my 3-year NED (no evidence of disease) mark in July 06 and according to my care team, once you reach the 5-year mark, you are 99% considered cured.

    Side effects of chemo basically are cumulative and affect each individual differently due to our DNA, so someone can have lots of side effects while others have none, so I can only provide what affected me:

    a) Flushing on face and neck
    b) Tingling of hands, arms and feet
    c) Headaches
    d) Wrist would lock up due to cold weather
    e) Could not drink or eat cold foods or beverages due to the Oxy. Everyting was room temp or cooked.
    f) Mouth sores - MAGIC MOUTHWASH worked really well
    g) Trouble sleeping due to pre-meds (steriods)

    In addition to the above, I had my regime reduced by 20% due to the cumulative side effects and at treatment 6 had an allergic reaction (hives) which landed me the hospital to complete that treatment.

    Support - I turned to my husband, family, friends and back to my faith (church). I did attend a very small support group that my former employer provided. It was okay, but not what I was looking for and again, it depends upon the person and their personality.

    You are embarking on a journey in your life that will forever change you, but that will open your eyes to the smaller things in life; the important things.

    It's funny sometimes that it takes something like this (hardship) to open ones eyes to what is really important, it did for me.

    I smell the roses, run the grass through my toes and love my family everyday.
  • jessenj
    jessenj Member Posts: 9
    Thanks for the greetings and
    Thanks for the greetings and outreach. I'm very optimistic and while there is no good news about having cancer, I keep my family in mind and focus on taking care of them. I would love to find a local support group just to talk to others about what I'm kinda going through. My wife has a hard time being emotionally supportive. She just doesn't know how to process it and quite honestly, neither do I. Her also being 5 months pregnant is making it very difficult because she's taking care of 2 small kids plus me, and I feel guilt for adding undue stress to her life.

    To be quite honest, the stories others have makes me feel like I got very lucky with my dx. The doctors told me that with my stage, the cancer being wild-type, the lymph node involvement, the CEA levels, etc, I have an 83% survival rate and my oncologist is one of the best in the state of NJ. All in all, I use all these "facts" to keep me staying as upbeat as possible.

    Does anyone know a website that lists local support groups? I have searched and searched to find something but have been taken everywhere but where I need to be.

    Thanks again for all your support and encouragement. Today was the first day I started getting the acne on my face, so I'm waiting for my pharmacy to fill my prescriptions for the creams and ointments. I am still new to this and to be frank, the side affects haven't been that bad so far, so I'm really blessed and thankful for that. They say God gives you no more than you can handle, so I'm handling it.

    Jesse
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    jessenj said:

    Thanks for the greetings and
    Thanks for the greetings and outreach. I'm very optimistic and while there is no good news about having cancer, I keep my family in mind and focus on taking care of them. I would love to find a local support group just to talk to others about what I'm kinda going through. My wife has a hard time being emotionally supportive. She just doesn't know how to process it and quite honestly, neither do I. Her also being 5 months pregnant is making it very difficult because she's taking care of 2 small kids plus me, and I feel guilt for adding undue stress to her life.

    To be quite honest, the stories others have makes me feel like I got very lucky with my dx. The doctors told me that with my stage, the cancer being wild-type, the lymph node involvement, the CEA levels, etc, I have an 83% survival rate and my oncologist is one of the best in the state of NJ. All in all, I use all these "facts" to keep me staying as upbeat as possible.

    Does anyone know a website that lists local support groups? I have searched and searched to find something but have been taken everywhere but where I need to be.

    Thanks again for all your support and encouragement. Today was the first day I started getting the acne on my face, so I'm waiting for my pharmacy to fill my prescriptions for the creams and ointments. I am still new to this and to be frank, the side affects haven't been that bad so far, so I'm really blessed and thankful for that. They say God gives you no more than you can handle, so I'm handling it.

    Jesse

    Welcome
    Welcome to the boards and sorry you had to find us this way. You will learn a lot of information on this board from everyone. We are a great bunch of people. Good luck on your chemo. Please ask any questions that you may have. Someone is always here to encourage you. I can understand it being hard on your wife. A caregiver has a lot of responsibility emotionally and physically, plus she is pregnant with two kids. Try contacting the ACS for help in your area. It does help to talk to others that are in the same situation. Congratulations on your soon to be little son!

    Kim
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hi, Jesse
    Hi, Jesse.

    Welcome to our board! I'm sorry you have to be here, but you'll soon realize that you are definitely NOT alone in your cancer journey. You'll have lots of friends here.

    It sounds like you have a lovely family. You have to work hard and get well for them! Let us know about any questions or thoughts you have.

    *hugs*
    Gail
  • Paula G.
    Paula G. Member Posts: 596
    Hi
    Hi Jesse,
    My husband was DX'ed Last Oct. Stage 4. This is the place to be. People have helped me a bunch. So sorry you had to have this stuff. Not what you want or anyone wants. Keep reading and posting. You aren't alone. Best to you. Paula
  • jessenj
    jessenj Member Posts: 9
    Well, if you don't mind - I
    Well, if you don't mind - I have a couple questions for anyone who has been on Erbitux. I just got the acne on my face today. Is it typical that it can take over a week to get the rash? I got it after my second dose. Also, does anyone know an effective treatment for the acne? My oncologist's nurse prescribed clyndamicin cream, hydrocortisone 2.5, and triamcinolone. Do these help or are they just introducing more complications? I'm not a big fan of overmedicating.

    Thanks again,

    Jesse
  • shrevebud
    shrevebud Member Posts: 105
    jessenj said:

    Well, if you don't mind - I
    Well, if you don't mind - I have a couple questions for anyone who has been on Erbitux. I just got the acne on my face today. Is it typical that it can take over a week to get the rash? I got it after my second dose. Also, does anyone know an effective treatment for the acne? My oncologist's nurse prescribed clyndamicin cream, hydrocortisone 2.5, and triamcinolone. Do these help or are they just introducing more complications? I'm not a big fan of overmedicating.

    Thanks again,

    Jesse

    Hi Jesse:

    Welcome to this board and sorry that you are having to go through all of this. I have been fighting colon cancer with liver involvement (stage IV disease) for over 2 and a half years. I was 46 at the time - I'm 49 now. I have been on several different types of chemotherapy over the past couple of years. I was on Vectobix - a close cousin of Erbitux. I chose the Vec instead of Erb. They both cause skin problems. My skin got really bad and we stopped the medicine at the end of July - I just couldn't take it anymore. I was on clindamyacin ointment and vibramycin by mouth twice a day. I think the ointment helped my face some, but don't really think the oral antibiotic did anything. I hope you won't have skin problems too bad. Try not to scratch or pick at the places on your face - that can make them worse and you may break out on your arms, chest and back. My oncologist mentioned to me about trying Erbitux but I don't really want to since the Vectobix caused my skin to break out so badly. I'll be thinking about you and hope you do ok on this medicine. Keep me/us posted on how it's going. Take care, Roy.
  • Patteee
    Patteee Member Posts: 945
    jessenj said:

    Well, if you don't mind - I
    Well, if you don't mind - I have a couple questions for anyone who has been on Erbitux. I just got the acne on my face today. Is it typical that it can take over a week to get the rash? I got it after my second dose. Also, does anyone know an effective treatment for the acne? My oncologist's nurse prescribed clyndamicin cream, hydrocortisone 2.5, and triamcinolone. Do these help or are they just introducing more complications? I'm not a big fan of overmedicating.

    Thanks again,

    Jesse

    No answer to your
    No answer to your questions.
    But something I read last week about the rash- that it was a very positive sign that the Erbitux was WORKING- so there ya go.

    Eric- haven't seen him on lately, but he was on Erbitux and probably can help ya.
  • ron50
    ron50 Member Posts: 1,723 Member
    jessenj said:

    Well, if you don't mind - I
    Well, if you don't mind - I have a couple questions for anyone who has been on Erbitux. I just got the acne on my face today. Is it typical that it can take over a week to get the rash? I got it after my second dose. Also, does anyone know an effective treatment for the acne? My oncologist's nurse prescribed clyndamicin cream, hydrocortisone 2.5, and triamcinolone. Do these help or are they just introducing more complications? I'm not a big fan of overmedicating.

    Thanks again,

    Jesse

    Hi Jesse,

    Hi Jesse,
    Welcome,sorry I can't help answer your questions but I had chemo when they mixed it up in a bathtub out the back. Had some dreadful stuff called levamisole with my 5fu. I had st3c at 48 with 6/13lymph nodes involved. The good news I can give you is that I am still alive and cancer free nearly twelve years after surgery. All the best Ron.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    hope
    Hi Jesse,

    Welcome to the board, even if it's for a bad reason. This is a great place for information and support. I was diagnosed exactly 2 yrs ago at age 41 as stage IV, with metastases in the liver and both lungs. Definitely devastating, as I'm young, married, and mom of three kids. It was pretty severe and I wasn't sure if I'd be around for more than a few months. Two years later, here I am, and hanging in there, and I have a lot of hope left in me to get well again! Granted, I am still in chemo treatment, but I amazingly am feeling pretty good most of the time.
    I believe that I can still possibly be cured and if not cured, then it can definitely be managed and kept under control like any other chronic illness that people deal with. I also believe in miracles- who knows what might happen!!
    There are even some people here who are stage IV and are now NED (no evidence of disease) & have been so for several years! With all that said, you as a stage III are in a better position than I wasn/am. YOU WILL BEAT THIS!!!!! Don't listen to any outdated survival statistics either. They are just that- outdated! There is so much they can do now and, yes, people still die from this disease, BUT SOOOOO many more people are living and becoming cured. YOU WILL BE ONE OF THOSE PEOPLE WHO WILL BE CURED!!

    Take care and God bless-
    Lisa
    P.S. Congrats on the upcoming birth of your son :)