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

jessenj's picture
jessenj
Posts: 9
Joined: Sep 2009

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

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

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.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

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

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

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

GetBusyLivin's picture
GetBusyLivin
Posts: 25
Joined: Aug 2009

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's picture
emrose
Posts: 137
Joined: Dec 2008

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's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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 Dick 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's picture
kristasplace
Posts: 956
Joined: Oct 2007

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's picture
Patteee
Posts: 950
Joined: Jul 2009

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's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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's picture
mac1212
Posts: 31
Joined: Jul 2009

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's picture
nudgie
Posts: 1483
Joined: Sep 2006

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's picture
jessenj
Posts: 9
Joined: Sep 2009

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's picture
Annabelle41415
Posts: 6482
Joined: Feb 2009

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's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

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's picture
jessenj
Posts: 9
Joined: Sep 2009

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's picture
shrevebud
Posts: 106
Joined: Aug 2009

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's picture
Patteee
Posts: 950
Joined: Jul 2009

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's picture
ron50
Posts: 1729
Joined: Nov 2001

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's picture
lisa42
Posts: 3661
Joined: Jul 2008

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 :)

tiny one
Posts: 467
Joined: Jan 2009

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's picture
Mike49
Posts: 269
Joined: Nov 2008

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's picture
lisa42
Posts: 3661
Joined: Jul 2008

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's picture
jessenj
Posts: 9
Joined: Sep 2009

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's picture
Shayenne
Posts: 2370
Joined: Jan 2009

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's picture
jessenj
Posts: 9
Joined: Sep 2009

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's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I gotcha now~ it must have been your privacy settings, very cool~ I'm glad too see you there as well! :)

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

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's picture
kimby
Posts: 804
Joined: Oct 2007

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's picture
robinvan
Posts: 1014
Joined: May 2007

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's picture
jessenj
Posts: 9
Joined: Sep 2009

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's picture
ldot123
Posts: 276
Joined: Apr 2008

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

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

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)

eric38's picture
eric38
Posts: 588
Joined: May 2009

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

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

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)

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

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

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

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's picture
just4Brooks
Posts: 988
Joined: Jun 2009

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's picture
jessenj
Posts: 9
Joined: Sep 2009

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

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

You have done very well. Chemo ain't easy but you fought thru it and now you are out the other side. You decided to beat cancer. Good choice it worked for me . My best wishes for good health for you and your family,Ron...St3c 6/13 nodes now into yr13 still ca free.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Isn't it wonderful to be DONE? Wow!

Sorry you went through the Erbitux. I was KRAS mutant so didn't have Erbitux but for some reason, I was on a list.... and got a Dear Diane, sorry to inform you letter two weeks ago.

Thanks for the update and BE WELL!
Diane

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Great job hanging in there and finishing! You were starting chemo around when I was dx'd. It is so exciting to see people finishing and moving on with life!

Enjoy your family!

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I hope this is all behind you now. In more ways than one. Good luck on the whole "back to work" thing. It will be nice to restore that part of your life.

Be well... Rob; in Vancouver

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Nice to meet you... I'm new on the boards but read your thread. I'm also a IIIB cc diagnosed back in November. I've only had one round of chemo so far, but am also optimistic about life.

Enjoy your family and enjoy your many decades of life!!

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

Congratulations in finishing your treatment Jesse,but I am confused with your staging, because I am stage IIIa not b and I had 1 limph node involment, stage IIb acording to what I understand is more that 3 limph nodes, and I have in writing by my Dr. that with chemo my survival rate is 84%, don't know if the K-ras factor makes a diference,but I think that you are stage IIIa if the spreading was only to 1 node.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I believe how far the tumor invades into the wall of the colon.

This explains it much better.

http://www.cancer.org/docroot/CRI/content/CRI_2_8_After_Diagnosis_Staging_Colon_and_Rectum_Cancer.asp?rnav=cri

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Jesse,

Thank you for updating us and letting us know how you are! You finished- woo hoo!
I am sure you will be fine. Best wishes in going back to work, too.

Take care,
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Congratulations & all the best to you + your family.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Jesse,
Congrats on finishing!!!! I hope you are able to enjoy your young and beautiful family and have decades of good health ahead of you!

Wonderful!

Aloha,
Kathleen

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