New to Group! Husband StageIV

[DeborahHG]

Hello Colon Club!

I am Deborah and my husband is Carl. He is 35 years old diagnosed in August 2005 with a large, locally advanced recto-sigmoid well-differentiated adenocarcinoma after having emergency surgery to relieve bowel obstruction with temporary colostomy/mucus fistula created. CT's clear otherwise at that time. He then had 6 weeks neoadjuvant chemo (xeloda) / radiation. LAR on 12/6 with partial cystectomy (no bladder invasion--stuck to bladder) and colostomy takedown for reanastomosis and temporary ileostomy created. Clear margins with tumor, 23/23 nodes negative. So, at that time, good news with plan for 6 month FOLFOX6 after recovery.
In mid-January 06, before starting any adjuvant chemo, CT showed 3 spots, 2 probable hemangiomas, but 3rd suspicious of mets. MRI proved this to be true (12mm) with PET confirming it as well. So, Stage IV. Evaluated by liver surgeon---good news that it is operable with curative intent. It was decided to do 4 cycles of FOLFOX 6, one month off (has port). Do MRI, then hepatic resection of mets. One month healing time then resume FOLFOX 6 for 8 more cycles;also probably add Avastin.

So, as of today, Carl has tolerated 2 cycles ok with 3rd on 3/28...waves of nausea,fatigue,body aches for about 7 days. Starting to get some peripheral neuropathy, as well as, mouth sores after this cycle. Taste is altered. Worry that he does not take in enough fluids during the 7 days after oxilaplatin dose---he only likes ice cold drinks. Overall, he did better with the second cycle....knew what to expect. He does need alot of encouragement. Thankfully, he works from home (his job is extremely supportive). I only work away from home a few days a month, otherwise I am at home and homeschool our 15yo son (always has been homeschooled).
Our son, Michael (only child), has his own healthcare needs. Born with underdeveloped kidneys--due to post-uretheral valves, kidney transplant 10/98---then diagnosed 11/05 with chronic allograft nephropathy--which is essentially"chronic rejection". His care has escalated during the time since his Dad had been diagnosed. More ped-nephrology visits, more frequent bloodwork, major medication changes with new side effects----now he starts araNESP injections because Hct dropping due to new med mostly, but also can be from deterioration of kidney function.

Needless to say, I feel exhausted and overwhelmed at times. BUT, this is where I was meant to be. My journey before I met Carl, my experiences, our son's birth, and our journey in life since then has prepared me for my role as caregiver to both of these guys. I love them dearly and will do anything to nurture their life each day. They are both amazing people. They are an awesome support for each other. Their courage gives me strength. They both are my heroes!

My mother is a 10 year survivor of colon cancer (Stage II at 60yo) and my paternal Grandfather died from colon cancer when I was around 13yo; I am 45yo and my doctor still says age 50 for colonoscopy for me. I am to the point of pushing for one this year.

Everyone's stories and posts are inspiring and most helpful. I have perused several message/discussion boards off and on for about 8 months now; mostly since the mets was found.
The colon club is the first group that I have joined, EVER. I am thankful to Molly for having created it.

I hope that each of you are doing well!

Deborah

[Holly]

Deborah,

Welcome to the Colon Club! I hope that through this forum you find support, encouragement and love as I have for the past year! Know that you and Carl are in my thoughts and prayers! As per my email, you are welcome to call me ANYTIME! Remember ALL things are truly possible!

Hugs!

Holly

[Guest]

Hi Deborah, sorry to hear you have so much to deal with. There
are a lot of people here to support you in every way possible.
Whatever you do, demand a Colonoscopy! The doctor told my 44
year old daughter that she could wait until 50 even though I have
stage IV CC. We insisted and they found 3 tumors in her
Colon, 1 was pre-cancerous and very large. This year her test
was clean. If your doctor says no, get a second opinion.
Good luck and remember we are here.

Carol

[Dana]

Hello,
I am so sorry to read how much you are going through. You are a wonderful and incredible lady. You will find confort in this website (I read all posts after my mum was diagnosed and became a member only after her death- I can't stop coming here and really feel close to everyone).

Please get a colonoscopy. In Italy risk age is after 50 and if a family member was diagnosed your risk age starts 15 years before your family member was diagnosed. I have booked mine for May.

Take care
Dana

[Dot]

Hi Deborah:

Well, you have found the best place for support, information, etc. My situation is similar to yours. My husband, age 39 diagnosed Oct 05 with Stage IV CC with mets to the liver. Due to surgery problems, chemo not started until Dec 05. He is on Folfax 6 with hopes of being able to get a liver resection after 6 months of chemo. We also have a 15 y/o son still at home. (Have 4 daughters from my prior marriage, 2 done with college and 2 living at college most of the year).

Bob's beginning chemo was awful, very sick with nausea and vomiting. Finally, with a major attitude change and finding the anti nausea meds that work for him he has done much better. He actually has gone back to work when he is not getting chemo. Chemo is every other week. Spends about 6 hours getting chemo on a Wed then gets hooked up to a 46 hr infusion of 5 FU and on Friday he goes and gets the 46 hr infusion disconnected. He has also been started on avastin, a biological drug that "debulks" the 2 tumors in his liver so he can have the liver resection.

You must get your colonoscopy. With your family history you have to be persistent with your MD. As you will see from this site, there are many, many people under age 50 who had colon cancer! I would find out if the reason your MD is not ordering a colonoscopy is due to reimbursement from your insurance company. Find out what "key" words you need to use to get them to order one. Is it "bloating, change in bowel habits, symptoms of obstruction, etc.

Between your husband and having a child with medical needs you do have a lot on your plate. I visit this site to get my support and have met some wonderful people via email. Don't forget to take care of yourself. Your family needs you to be healthy, mentally and physically.

Take care, and keep in touch.

Dot

[Guest]

From a husband of 5+ year survivor of stage 4 colon cancer, I think it is important for you to know that you are also a patient of this disease. It took me a long time to realize that I was not the only one affected by this. I could not understand why my wife was so upset. After all, I survived the surgery and chemo and time was flying by. But my wife wasn't the happy person she use to be. Maybe it is a thick skull, but it took me almost 2 years to realize what a tramendous affect this had on her. It took me a long time to realize I was not the only patient recovering from cancer. I wish my wife had as good of treatment as I had.

Best Wishes!