My husband diagnosed w stage4 terminal

Posted by sportsmom9433 @sportsmom9433, Oct 31, 2018

Diagnosed in Jan, day before 50th birthday.
Chemo was cancelled for this week yesterday…his numbers were a concern. More bloodwork is scheduled next week and another scan in 2 weeks.
Two weeks ago his AST was 46, ALT was 41, Alka phos was 189 and CEA was 126.
Yesterday is numbers were AST was 112, ALT was 154, Alka phos was 256 and CEA was 137.
Is this indication that cancer is spreading, more tumors?
I'm very concerned.

Interested in more discussions like this? Go to the Colorectal Cancer group.

@brettb83

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.

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@brettb83 thanks for your response. I am staying hopeful.

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@kanaazpereira

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

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@kanaazpereira thanks for the info. I will definitely look into it.

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I posted back in November:
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)?

Unfortunately, the chemo regimen that my husband was on did not work. His markers started to climb and his PET scan showed that his cancer spread to his abdominal walls. We discussed a new chemo called Longsurf whose percentage rate of success is low. We also discussed the new drug that the FDA approved not too long ago – Vitrakvi. My husband will need a biopsy and the genes will be tested to see if this new drug will work – apparently, there is a specific gene mutation that is needed in order for it to work. In the meantime, we are getting second opinions and seeking info on clinical trials. We are in the process of getting an appointment at UC San Francisco. We tried Stanford but there are no clinical trials currently taking place and their oncologist agrees with the course of action being taken by my husband's current oncologist.

Although I am researching and looking into alternatives – I can't help but think that maybe I am missing something. Does anyone have other recommendations or advice? Am I missing anything??

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I’m truly sorry to hear this, @sandrabee. I can’t begin to imagine what you must be going through! I moved your recent message back to this discussion so that you can reconnect with members in this discussion. Here is a list of Mayo Clinic open clinical trials for colorectal cancer: https://www.mayo.edu/research/clinical-trials/search-results

I sincerely encourage you to see this discussion, where I’m confident you will find some comfort. Many of the members in that discussion are familiar with the more aggressive chemo drugs you mentioned. Please feel free to post your message and tag members if you wish:
Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

@sandrabee, is there a possibility for you to consider seeking help from Mayo Clinic?

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