Mom of an adult with Stage 4 CRC

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JanetHKansas
Posts: 3
Joined: Fri May 12, 2017 5:54 pm

Mom of an adult with Stage 4 CRC

Postby JanetHKansas » Fri May 12, 2017 6:08 pm

I'm a mom with an adult son that was recently diagnosed Stage IV in January 2017.

He is on folfox but they recently dc'd the oxaliplatin due to neuropathy.

My support of him is long range. He lives in another state.

Trying to find my way and to be the best support to him without being too much of a burden to him.

He continues in college and is working on work that is important to him and he is living his life.

There is a lot of comfort in posting and reading posts from people who are going through the same thing, though different. Though it all can be overwhelming, right.
Mother to son, diagnosed Stage IV with adenocarcinoma originating in the appendix in January 2017
Hemi-colectomy for obstruction at that time
Carcinomatosis
February, 2017 to April 2017 Folfox x6, May 2017 5FU plus leucovorin

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Mom of an adult with Stage 4 CRC

Postby Lee » Fri May 12, 2017 7:08 pm

Hi and welcome, so very sorry for the reason you are here. You will find a wealth of information and support.

My first advice, if he has not already done so, getting a 2nd opinion at a major cancer treatment center would be a good idea.

Has he had surgery yet?

Where is the met spread?

Do you know if he as colon or rectal cancer?

Does he have a support system where he is at?

What are plans going forward?

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Mom of an adult with Stage 4 CRC

Postby KElizabeth » Fri May 12, 2017 10:07 pm

Welcome to the club. I'm sorry that your family is going through this. Your situation reminds me of my mother's when I was diagnosed.
I was pretty oblivious to just how scary it was for her. She was living with me and my family so she was able to help with daily chores and drive me around. She just seemed so strong. It didn't really occur to me how terrified for me she really was. She showed me optimism and strength when I needed it. She listened to my fears and supported my decisions. I think if she had been to pushy about treatment decisions I would have been overwhelmed. It was just such a comfort to have someone to tell my uncensored worries to.
I'm sure you are a source of strength for your son in just being there. Don't worry too much about the logistics because it all has a way of falling into place.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

JanetHKansas
Posts: 3
Joined: Fri May 12, 2017 5:54 pm

Re: Mom of an adult with Stage 4 CRC

Postby JanetHKansas » Sat May 13, 2017 7:08 am

My son's cancer originated in his appendix but is an adenocarcinoma with neuroendocrine features. He has carcinomatosis. He has some lymph nodes that were positive. His cancer was found when he obstructed and so he had surgery to relieve his obstruction and sounds like hemi-colectomy was done at that time.

He is being treated by a team who has better than average expertise in a major city in Ohio. As a nurse, you think of second opinions and such but this seems like a strong team to me. The cancer center has been excellent offering not just a lot of expertise from the GI oncology surgeon and the gastric oncologist but also immediate access to palliative care and support services. I have the email of a support nurse I can contact and I have done so.

Scans show stable tumor--no shrinkage after 5 rounds of Folfox.

I am a nurse who has worked in nursing all my life but have not worked in oncology and feel a lot like a stranger in a strange land.

My son is in a post-graduate program in college. He's unmarried. He has really special friends there. Taking the team's recommendation to have him remain in school and be treated there felt, as I often said, on one hand an incredibly life affirming choice and on the other hand, a preposterous idea. Especially when he was immediately post-op and having some convolutions in his post-op course.

I feel comfortable with the team. If he had gotten sick here at home with us in Kansas, we would have sought a second opinion and been glad to find a team like he has in the town he lives in.

My sense is that we are working toward possibility of more surgery, possibly a HIPEC procedure but no one has used that word to me. It looks like people just do successive rounds of chemo and try to keep things either stable or shrinking. I also know right sided tumors are a tougher nut to crack.

Having just undergone that first scan, where the results were relatively good, I've decided that scans are going to be like having a several weeks long emotional disruption. That was tougher than I anticipated.

So I guess if anyone has experience with right sided tumors, I'd appreciate hearing from you but also I learn a lot from people who just undergoing treatment.
Mother to son, diagnosed Stage IV with adenocarcinoma originating in the appendix in January 2017
Hemi-colectomy for obstruction at that time
Carcinomatosis
February, 2017 to April 2017 Folfox x6, May 2017 5FU plus leucovorin

Canada777
Posts: 62
Joined: Mon Mar 28, 2016 6:24 pm

Re: Mom of an adult with Stage 4 CRC

Postby Canada777 » Sat May 13, 2017 3:32 pm

Just wanted to post and say hi. You can see my signature below but my bf was diagnosed with appendix adenocarcinoma too only we didn't know it was appendix cancer until he had HIPEC. There doesn't seem to be much information about this type of appendix cancer and i've searched quite a bit. Glad to here your son is still able to work and live his life. We have tried to do the same and it helps keep us sane. I wish your son and family all the best :D
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis 9 months later.
Years of chemo.
At rest. Sept 2021.

User avatar
exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: Mom of an adult with Stage 4 CRC

Postby exaussie » Sat May 13, 2017 3:39 pm

Hello there. Sorry you need to be here. If you have questions or want to talk pm me for my phone number . My son was 25 at diagnoses. No longer a child but too young to be in that situation.
He had right side tumor. Living with cancer is difficult, one thing we tried to do was not make every moment about it.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Mom of an adult with Stage 4 CRC

Postby Lee » Sat May 13, 2017 5:30 pm

Sounds like your son is in very good hands and there is a plan of action. That is always the best place to be. I don't have experience with this type of cancer, butt I wish him all the best.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

janklo
Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: Mom of an adult with Stage 4 CRC

Postby janklo » Sat May 13, 2017 6:00 pm

Hi Janet from another Janet! I had same situation. We live in Nebraska, our daughter lived in Dallas. She was living with a boyfriend when diagnosed but then that didn't last so she was single and alone. Lots of good friends who provided support and we made lots of trips to Texas. I'd be happy to give you any support you need, anytime.

I did lots of research to help my daughter, she did come back and live with us for 4 months one time during treatment. She did HIPEC. I find you have to be your own advocate with cancer--it's your sons life and his decision what to do. You can provide advice as best you can.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

JanetHKansas
Posts: 3
Joined: Fri May 12, 2017 5:54 pm

Re: Mom of an adult with Stage 4 CRC

Postby JanetHKansas » Sun May 14, 2017 2:52 pm

Wow! hearing from all of you means so much! Canada, you seem to be on the same path we are currently walking. We walk in hope but try to hold the knowledge lightly--it's important but not an absolute. And I believe the most authentic thing to do is to grasp each day. My dear son made a beautiful dessert for me and sent me a picture. I feels it's for me even though I won't taste it. Exaussie, I may indeed message you. I am incredibly grateful to know people who have walked the road. Oddly enough, I have a friend named Janet who also had a daughter with a cancer originating in the appendix who has passed. Lonely walk and on Mother's day a derision of what we hope for for our children. Lee, thanks for your good wishes.Janklo, we are probably less than 2 hours from the Nebraska border.

I take courage from all of you. The walk must be walked and we just try to stay in the moment.

love to all of you.
Mother to son, diagnosed Stage IV with adenocarcinoma originating in the appendix in January 2017
Hemi-colectomy for obstruction at that time
Carcinomatosis
February, 2017 to April 2017 Folfox x6, May 2017 5FU plus leucovorin


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