The Colon Club

Good afternoon fellow members,
I'm the caregiver to 49 year old husband diagnosed with stage iv colon cancer on 8/2017 after an emergency room visit due to intense stomach aches. We found out that day that the cancer had spread to the liver and lungs, large tumors in the liver and smaller in the lungs. the ileostomy was performed, started chemo with different cocktails that worked in the beginning and later stopped. Fast forward to the beginning of 2018 and we also found out the cancer was in his bones, tried radiation but it did not work, tumors did not shrink. Last December my husband had just started a clinical trial ( immunotherapy) when he started to complain of headaches and feeling dizzy. I emailed the doctor and asked if he could have a brain scan and the next day he went in for an MRI of the brain. Straight to the emergency room, they found a large tumor on the back of his head and had to perform emergency surgery to remove and later did gamma knife to shrink the other small tumors found that were not removed during surgery. Because of the brain mets my husband had to abandon the clinical trial and was put on Lonsurf. The doctr told him that his liver was his biggest concern and if they didn't find a solution he would only have 3-6 months to live. We went for the 1st treatment of Y90 to his liver one month ago and last monday we did the second treatment ( each side of the liver was done at different times). We have 3 small children and my husband is in constant pain from the bone metastasis.It breaks my heart to see him suffer and I know that the kids are starting to act up as they see their father in bed most of the time and have almost no time with him. My question to all of you is, is it possible to recover from all this? I look at all the signatures here and most people have lungs/liver or lymph nodes/liver combination but I never have seen anyone that has liver, lung, bone and brain and I'm starting to lose faith and wanted to find out if anyone knows someone that has recovered from colon cancer that has metastasized to so many different organs. Thank you

Hi Momserati,

Just want to reach out to you as that is a very difficult situation you are in . Watching someone you love endure so much is heartbreaking plus parenting children under pressure too . Not easy at all .

Where are you located ? It is a shame he had to come off his clinical trial for Immuotherapy . Certainly there is some positive results with it .

I think in cancer care there is often a tipping point where the body starts to decompensate with the disease and the treatment . Up until that point anything is possible .If the Doctor is offering treatment they must feel there is a clinical benefit .
What are your own thoughts as you know him best ?

Thinking of you ,

Stu

Hey Momserati,

Where is your husband being treated? If not at one of the top rated cancer centers, please seek treatment there. MSK in NYC is my facility of choice...probably because they saved my life a couple times.

God bless.

hiker

stu wrote:Hi Momserati,

Just want to reach out to you as that is a very difficult situation you are in . Watching someone you love endure so much is heartbreaking plus parenting children under pressure too . Not easy at all .

Where are you located ? It is a shame he had to come off his clinical trial for Immuotherapy . Certainly there is some positive results with it .

I think in cancer care there is often a tipping point where the body starts to decompensate with the disease and the treatment . Up until that point anything is possible .If the Doctor is offering treatment they must feel there is a clinical benefit .
What are your own thoughts as you know him best ?

Thinking of you ,

Stu

We are located in Warren NJ and seen by Dr Martin Gutierrez at Hackensack Cancer Center. he's been losing weight lately almost no appetite but once in a while he has days where he eats a little bit better and gets out of bed, hangs out with us for a little bit in the leaving room but I do hate that the kids get to witness the pain ( he makes noises ) and we can't let the kids make too much noise or run around as the pain makes him intolerant to noises and very impatient with everyone. The other concern I have is how to prepare the children in case something does happen to him. They are aware he has cancer but unaware of the magnitude of his disease. i do not want them to suffer in advance and do not know what the best approach is.

Some days I look at him and have a feeling that death is close, others he looks better and my hope that he will be ok comes back. I keep looking for examples of cases like him with success stories but as I mentioned in my previous post I can never find patients with such disease progression.

I appreciate the replies and will keep coming here for support.

Hi ,

Is there anyway you can speak with his consultant to give you a better insight? You are all having a tough time there so I am very pleased that you are willing to come here for support and we will most certainly try to help .

I am in the Uk but I think there are online resources to guide you in how to approach children with regards to cancer . I would be the same as I would not want to over expose them prematurely but would also want to be prepare with materials , community support etc to ease the situation where possible .

It so tough on you balancing your husbands needs and your children’s . I can fully understand after all he is going through that noise disturbs him . I feel very much for you all .

Keep in touch and take special care,

Stu

I live near Portland, Maine where there is a wonderful organization called The Center for Grieving Children. They work with families that are experiencing serious illness and loss. If you could find something like that in your area, it might be helpful for all of you. Perhaps if you contact them they might have a referral in your area.

http://www.cgcmaine.org/about-us/

This is the toughest of circumstances where it is hard to see a path. Perhaps a frank discussion with his oncologist would help? I have a friend in a chronic state (something that can be worse than cancer) and she doesn't expect to live more than a few months and she has prepared her children and has her financial affairs in order. Those of us around her chat with her and I think that that's the most we can do.

His oncologist would likely know of cases where patients survived spread. I would think that only something like immunotherapy could cure a lot of spread because it hits everything at once.

Momseriti:
Palliative Care is a service that would be of benefit to your husband as well as you and your children.

Palliative Care is whole person care that focuses on comfort and minimization of distressing symptoms for anyone facing a serious, life-limiting illness. I have been receiving Palliative Care for two years and can speak personally for its benefits. It is a multi-disciplinary model of care that comes to my home. A Palliative Care physician, RN, physical therapy, social worker, psychologist, nutritionist, Chaplin. The team also works with my family, providing ongoing support and communication and stress reduction.

Your husband’s oncologist or primary care physician should be able to make a referral to you for Palliative Care.
Karen

Thank you for all the replies. I have visited a center near home that gives support to families going through situations like mine or have had someone dealing wth death. It's for both adults and children, they offer sessions twice a month and I took both boys there and they absolutely loved it. I wasn't able to participate in the adult session that runs at the same times because I had my 2-year-old with me but will next time they meet. I will keep updates just i case anyone is interested in knowing. He has been vomiting a lot lately and unable to keep food down so the weight loss is starting to give him that sick/unhealthy look that you can tell right away that something is wrong with me. Up to this moment, he looked pretty good and no one would guess that inside thigs were as chaotic as they are. to Sorry for my bad english, portuguese is my native language