My husband diagnosed w stage4 terminal

GM, my husband was diagnosed with the same thing in 2011. My husband was 57 at the time. He will be celebrating his 65th birthday in a few weeks. His CEA at the time was 298. The AST, ALT are liver results. I don't recall what my husbands AST, ALT were at the time. My husband had cancer in the colon, liver and lungs. It is now 7 years since the terminal diagnosis. We have been very fortunate to be able to have some procedures beyond chemo. I would be more than happy to share our journey and what procedures we had done over these last 7 years. Probably a little too long for this blog. Stay positive. Lots of progress happening in this area ie immunotherapy if you qualify after certain tests.. Wait to see the results and next steps, but again we are happy to share our journey with you and your husband.

Welcome to Connect, @sportsmom9433; I'm so sorry to hear about your husband.

I’m bringing fellow members @soul @ilene1 @sallyg @azcyclist2018 @travelgirl @starrlight @nannytart @minabird @brenz into this conversation to see if they might be able to share their experiences with you.

I sincerely encourage you view this discussion where you you'll meet many others who've offered their insights:
- Living with colorectal cancer - Meet others & come say hi https://connect.mayoclinic.org/discussion/living-with-colorectal-cancer-meet-others-come-say-hi/

@sportsmom9433, you’re not alone; I’m sure you have a million questions racing through your mind. May I ask what are your husband's treatment options? Would you be able to share more details?

Radiation and surgery were ruled out..he receives avistin and 5FU every other week thru a port implanted in his chest.
His liver was already north of 85% cancer before we even knew...they told us the chemo would buy time but there is no cure for him...told us to get our affairs in order...

My husband did chemo ( 5-fu avastin etc) first. He did 6 months of chemo. By the way we were told no hope get our affairs in order too. That was 7 plus years ago. They gave my husband 1-2 yrs at most. Then we went to a liver specialist after most of the colon and liver tumors had shrunk from the chemo. The liver surgeon did a liver resection which is they took half of my husbands liver out. Then 6 weeks later the liver grew back and he had almost the entire other side of the liver taken out along with a large piece of the colon. He went back on chemo for a short time and hasn’t been back on it for over 2 years. However we then found tumors in his lungs, which we have been treating with cyber knife(a very pinpointed type of radiation ). There has been no reoccurrence in the colon or liver since the operations. I hope that helps.

My husband, who is 54, was diagnosed with Stage 3b colon cancer in August 2017. He had surgery and started chemo in October. He had to stop chemo in April 2018 for a quadruple heart bypass, after recovery he started chemo again in July 2018. He had another PET scan in July which showed the cancer had spread to some of his abdominal wall and right outside of the liver. He is now Stage 4 and is on a more aggressive chemo treatment - Leucovorin, Irinotecan, SFU and Folfiri. His tumor marker was going down and was 24 and the last marker was 31. We spoke to the doctor about our concerns with his marker going up and he basically told us to get everything in order and my husband had approximate 1-2 yrs. if that. Needless to say, that was a big slap in the face. After reading some of the discussions with others having Stage 4 and living longer than what was determined by the doctor, I am optimistic. Can you please share more of what treatments you were on and what else was done (alternative med, homeopathic or any other experiences)?

I am 34 and was diagnosed with Stage 4 colon cancer that spread to my lungs and liver. I started my 1st round of chemo last November. I did my 12 rounds and the went on maintenance. All my tumors shrunk and my CEA levels went from a 47 to 3.4. I was on some of the same drugs as your husband. The treatments worked for me. Have faith in the drugs, they work.

@sandrabee, you'll notice that I moved your message to this discussion about Stage 4 Colorectal Cancer. I did this so that you can easily connect with @brenz and @sportsmom9433, who also have partners with stage 4 and have some of the same experiences as you do.

My father also has stage 4 colorectal cancer. He chose to have the aggressive chemo combination you mentioned. After a few months, he decided to stop treatment because he didn't like living with the side effects. We were glad that we had access to palliative care to help him manage the side effects and to keep him comfortable when he stopped treatment. Palliative care is a good option along with chemo and other treatments. Is it available at your cancer center? Was palliative care offered or explained to your husband?

Hi Coleen, thanks for responding. No pallative care has not been offered or explained to us. I did research it after your email, and will speak to the oncologist about it. We are currently trying to get his care transferred over to Stanford. Just dealing with the insurance since we live in Sacramento and Stanford is 2.5 hours away in the Bay Area. Is pallative care something that his primary care physican can refer him to or does it have to be his Oncologist?

Hi @sandrabee,

Here’s a bit of information from Mayo Clinic about palliative care:
“When palliative care is used along with all of the other appropriate treatments, people with cancer may feel better and live longer.
Palliative care is provided by a team of doctors, nurses and other specially trained professionals. Palliative care teams aim to improve the quality of life for people with cancer and their families. This form of care is offered alongside curative or other treatments you may be receiving.” https://www.mayoclinic.org/diseases-conditions/colon-cancer/diagnosis-treatment/drc-20353674

Hi @brettb83, I'm thankful that @sandrabee's post about her husband encouraged you to tell your story of living with stage 4 colon cancer and how chemo shrunk the tumors and decreased the CEA levels.

Unfortunately, I was moving Sandra's post to this discussion at the same time as you were writing your message yesterday, so it went missing for several hours. Luckily the tech team was able to retrieve it for me. Sandra, please see Brett's post here: https://connect.mayoclinic.org/discussion/my-husband-diagnosed-w-stage4-terminal/?pg=1#comment-246497

Brett, you said you are on "maintenance". Does that mean you continue to get chemo? At a lower dose? Less frequently?