Hello everyone, my name is Sarah and I am the wife to Brian who was diagnosed with stage 4 colon cancer at the end of November 2016
I started reading this board back when I was sitting at his bedside following the initial emergency surgery to remove a blockage in the cecum. This board has been a source of great comfort and a wealth of information.
I avidly follow everyone's journeys here, you all are so brave, compassionate and kind. I've tried to put as much information into my signature as I can, but to briefly summarize our situation.
My husband is 41 years old, he had no warning signs, and no health issues, he was in good shape, we were climbing mountains in Colorado in August.
In November he woke me in the middle of the night with intense pains in his right side, which was relived slightly after vomiting. We thought this might have been a gallbladder attack and went to the local ER.
After they ran a series of tests and imaging they informed us it was colon cancer that had spread to the liver, with possible lung involvement.
He underwent a colon resection the following day , recovered well and was allowed to go home 5 days later
The doctor in ER who made the initial diagnosis in addition to 3 gastrointestinal doctors who came to visit him , all told us he had a month to live, I have no idea what they felt the need to tell us that, the emotional toll on me at that time was unbearable, it was like living in some kind of nightmare, especially given that I had just lost my mother 2 moths prior to this to stage 4 breast cancer.
They were all wrong, he is still alive and (chemo side effects aside), doing well 3 and half months later
As you can imagine we did not stick with that hospital for subsequent treatment but went to a larger cancer hospital which is affiliated with MD Anderson
The surgery and pathology confirmed the primary as colon cancer with enlarged lymph nodes, mets to the liver, peritoneum and possibly lungs, although we have not had the lung things confirmed by biopsy or other method.They are very small
After 5 weeks of healing he had a port placed and began chemotherapy on Jan 5th 2017.
He has just this week completed his 5th treatment , which he is tolerating reasonably well, the first treatment was the worst, severe nausea and vomiting, the nausea has improved with treatment although the fatigue doesn't get much better , he has developed hand foot syndrome and has to self administer Neupogen shots for 6 days every fortnight. No neuropathy to date and no sensitivity to handling cold things. He did have a scary incident when riding his bike on the day of treatment , it was very cold outside and the cold air caused his throat to close up and breathing to become very difficult. Fortunately his cycling buddy happens to be a paramedic and handled the situation calmly. In about 15 mins of being back in the warm and sipping some hot tea the situation resolved itself. Lesson learned, no cycling in the cold on the day of treatment
Side effects aside, he is still in good shape considering and rides his bike when he feels able to, eats well after the first few days following treatment, has managed to maintain his weight and is experiencing no pain and symptoms from the mets. His CEA dropped in half after 2 chemotherapy treatments, this was also around the time when his white blood cell count took a hit and also I notice from his blood work his LDH levels spiked and doubled, they have subsequently dropped back to normal, but all this activity after 2 chemo treatments seems to suggest something was happening. His CEA continues to decline.
He has only had the one CT scan since beginning treatment and that showed a small amount of shrinkage and no new growth.
From that I think we can say he is responding failry well to the chemo, but my fear is that this will not continue in long term , and almost certainly will not lead to a long term remission
We have read about HAI for the liver involvement but I very much doubt that would be a possibility given the other sites of metastases, and of course surgery is not an option now and who knows if ever in the future.
I also feel as if we are playing a virtual chess game, with trying to work out what our next best move is. I am very interested and excited about immunotherapy and see that there is currently a trial recruiting in Atlanta where we live, specifically they are recruiting people who are MSS. If I correct I think this is for Opdivo in conjunction with another drug that can potentially help facilitate it's use on MSS tumors, but I might have that confused?
I am so confused as to what to do, do we stick with the chemo which is working for him, although I fear the long term damage ,and of course that the cancer will eventually stop responding, do we abandon it to give this trial a go with no guarantee that it will have any effect, and yet knowing the chemo is not a long term solution and the extent of his mets I feel as if immunotherapy may be our best option
I'm not so much asking for anyone to 'tell us what to do, but just looking for opinions, it is all so overwhelming sometimes.
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12