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Wife has stage 4

wodges
Posts: 2
Joined: Mar 2014

Hello Everyone, My wife was diagnosed stage 4 colon cancer a year ago next week. She had gone almost 1- 1/2 years being misdiagnosed  and not taken seriously.

A doctor friend decided to check her out and found a 5" tumor obstructing her transverse colon and small intestine. The cancer has invaded her liver and has affected roughly half of it. She has 2 spots in her mesentary that are approx 2" each. She is now on her last chemo protocol that she is eligable for. Her cancer markers were 40 last October but have continued to climb every month. At the beginning of March, she now has a marker count of 258. I just don't know what to think anymore.  Doctor keeps telling us to concentrate on today and not to get to far ahead of ourselves. It is hard to believe at times that she is sick. Today she started her 3 day chemo cycle and she is very sick. The end of this month is her next MRI. PLease say a prayer for her. She is 51 and beautiful. 

jen2012
Posts: 1186
Joined: Aug 2012

I'm so sorry that you wife if fighting this horrible disease.   Are you in the US? Have you looked into any trials?

 

Welcome to a place that stinks to have to join, but where you will find lots of support and advice.

strick7106's picture
strick7106
Posts: 9
Joined: Aug 2013

 

wodges:  So sorry to hear about your wife’s situation.  My prayers are headed your way!   I am a 58 year old male colon cancer survivor.  Original diagnosis was stage 3 in May of 2010 and I’ve made it through (3) different series of chemo totaling 37 treatments between 7/10 – 11/13, and 4 surgeries.  I went metastatic (small bowel), stage 4 in December of 2012.  I sense you have the feeling that you and your wife are running out of options and I can tell you ‘I’ve walked that path’.  Fortunately I found hope in a surgical procedure that ended up with me being declared NED, and no longer having to take any preventive IV chemo.  (Ongoing treatment consists of quarterly CT Scans and blood work) The procedure I had done is called HIPEC, or Hot Chemotherapy, or ‘Shake and Bake’.  The official procedure is called, Cytoreductive Surgery with Hyperthermic Intraperitoneal Chemotherapy.  As with all treatments you will hear comments stating both positive and negative results.  I’m here to tell you that my result so far has been positive.  Surgery was done December 4th at University of Nebraska Medical Center (UNMC) in Omaha, NE.  Dr. Jason Foster is one of a handful of surgeons across the U.S. that does this procedure, and he has done hundreds of them over the last 10+ years.  I’m including a You Tube link so you can actually hear Dr. Foster describe the procedure.  http://www.youtube.com/watch?v=S22FylYx9XY   My surgery was 15 hours long and I’m left with 4 ½ feet of small bowel (normal male has 22 ft.) and about a 12” of colon.  I’m having to adjust my diet over concerns of getting enough nutrition, but that’s manageable.  Dr. Foster tells me that he ‘reset my clock’ but of course none us know how long our clock will run.  Now 3 ½ months after surgery I’m working full time, going to the health club to rehab, and working on my core strength so I can play golf this summer.  Feeling better than I have for a very long time. 

 

There are options, and there is HOPE!  (If you have questions regarding the surgery or anything else feel free to contact me direct at rons@thewallingcompany.com)  

 

LivinginNH's picture
LivinginNH
Posts: 1269
Joined: Apr 2010

 

Hi,

Unfortunately, HIPEC would most likely not be performed if there was active liver involvement in any case.  Most surgeons would need to see clear PET results after six months of NED before they would even consider this surgery.  My Rick did not have positive results from his HIPEC surgery.  It’s a dreadful surgery, and his cancer came back only three months later.

All my best to your wife,

Cynthia

 

marbleotis's picture
marbleotis
Posts: 475
Joined: Mar 2012

Please get more opinions from other Dr's.  There is always other things that can be/might be done.

Keep posting and let us know how she is doing.

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

I'm sorry you have to be here.I am stage 4,and I had my liver resection 2 years ago,and I have a permanent ostomy.Have you thought about getting a second opinion from another doctor.I will be praying for you.I hate cancer.

wodges
Posts: 2
Joined: Mar 2014

We live in Florida.  We have been to the Mayo Clinic in Jacksonville, fl and the Moffett Center in Tampa and Florida Hospital Waterman for second and third and fourth opinions.  They all advised the course we were on is the appropriate and only course at this time.  When this chemo stops working then tier 2 trials will be looked at.

Thank You again for your words of encouragement and experience.

Will

fatbob2010's picture
fatbob2010
Posts: 369
Joined: May 2012

There seems to be a great companionship between the two of you which is not often this obvious.

She is very fortunate to have you for a caregiver.

There is hope, as others have offered, and I agree with them.  I have found that, for me, one of the biggest helps has been/is a supportive family and health care team.  

There are two sides to every conversation and only you know what is best for you.  I have found peace in taking an active role in care choices.  

Let me encourage you to try and make each day special.  

There is value in the here and now. Some call it the "Precious Present."

Peace and comfort to you and your family.

Art

here4lfe
Posts: 294
Joined: Jan 2010

My wife was diagnosed at the age of 46. When she was staged at 4, her primary care physician admitted that she never considered a colonoscopy due to my wife's age. As her caregiver I focused on her state of mind. I wanted my wife's final journey to be as she lived, every day full of love with a smile on her face.

Best to you and your wife,

Mark

 

annalexandria's picture
annalexandria
Posts: 2181
Joined: Oct 2011

It seems like this type of misdiagnosis is so common, esp with those of us who are younger (I was thought to have lupus for 6 months before emergency surgery got the correct dx of cancer that had already spread...at the age of 43, they were confident that it wasn't cancer, even though my sister had died from it just a few years previously).

It sounds like the two of you have done your homework, and that's important.  No matter what the future holds, you want to be able to look back and feel like you explored as many possibilities as you could.

I do have one question for you..what has she had done surgically?  This seems to be the one area where there is some significant disagreement among doctors.  Some are unwilling to approach surgery in a piece-meal fashion when there are multiple spots, but a few are willing to push the envelope and remove as much tumor as possible before trying other treatments.  I don't know if your consults included a crc surgeon.  I assume they probably did, but if not, another avenue to consider...

And if you will be looking at clinical trials, I would suggest checking out the thread on trials at the Colon Club forum.  Lots of good info there.

Strength and love coming your way~Ann Alexandria

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