Sharing and looking for advice Stage 4C Colorectal Cancer

I don’t have any advice, but wanted to pass along my thoughts and prayers to you both. Chemotherapy is hard on your body m, but even worse when your body is already depleted. The CEA dropping is good news, and left sided colon cancer seems ti have a better prognosis. But, ultimately you two need to figure out what the best option is. It’s hard for an oncologist to know exactly how much time chemo will give. Your post doesn’t say whether surgery will ever be an option?
I had Stage 2 and was only able to tolerate two of my recommended treatments, but my tumor was able to be removed surgically. I had loads of complications and surgeries, but am cancer free four and a half years later. My Mom had lung cancer, and surgery wasn’t an option. Her oncologist never told us the stage, just that it was advanced and not curable. She started chemo and it just depleted her. Ultimately, she passed away after two and a half months and I know I wish she hadn’t done chemo because her quality of life was less than before. But, we also couldn’t handle not doing anything, so we encouraged her to try. It’s a difficult decision no matter what. Hopefully she gets some relief from her pain and gets yer iron levels up.

Thanks for the reply and the kind words and support. We initially met with the chief of surgery for Sharp in Southern California. We have been told surgery is not an option at all due to the extensiveness of the tumors in the other areas. Left side does seem to be better but with MSS and KRAS, not so much. She is now down 55lbs from January of this year and seeing her go through it without knowing if it is working yet makes it very hard for her to stay positive.

With the anemia, she wasn't very active before treatment but she could at least walk around the house and do a few things. Even that is gone now. When she gets really down, she says things like "I don't know if I can take this again", knowing the side effects will get worse as treatment goes on. I am keeping her spirits up as best I can and sounding like a broken record "it's f'n hard".

I felt compelled to share our story, to say that hope continues here. I also love data and tech, but instead of googling odds, start looking for resolutions and things that might help. I'm not a doctor, just a determined 9 month care-giver.

Husband, 49, diagnosed with advanced colon cancer, metastized to liver Dec 2022. He had dropped well over 30 lbs (my guess is almost 50), and was anemic according to blood work. But we struggled to keep at 173lbs. Chemo started late Jan 2023, sounds like same one, florafox or something like that (sorry we have been on a lot of drugs hard to keep names straight). - this one delivered by PICC line. Feb 1, he experienced shoulder pain. Took him to er, they said well the ekg or ecg looks like he may be having a heart attack but we not sure. We will continue to monitor. 6 hours later discharged from hospital with allegedly nothing wrong. Feb 2, experienced shortness of breath - called ambulance admitted to ER and then ICU. Liver engulfed, multiple organ failure (heart, kidney, liver, etc.). Was told, 48 hours if we are lucky. Somehow after one week in ICU and one week in general, he made it home. CEA was 444, weight had dropped to a low of 156lbs. End of March, oncologist says we have to restart chemo, doesn't have 3 months without it. Husband refuses PICC line, oncologists finds oral pill (we pick our next round up later this week so I can give you real name then), something like carboplastin...so it begins again.
April, somehow his heart had spontaneously recovered, they aren't sure how, but I won't be asking questions about the miracles we keep receiving. We have been doing oral pills ever since, along with blood thinners (dalterparin) and blood pressure pills. What else we have been doing: I was tracking his blood pressure every day until it evened out in may. I also tracked all his BM and asked for descriptors so I could link up with the food I was making, what was the impact (helping, not helping, not sure). I made all his food at home from whole foods, and I tried to supplement some of the items that he was lacking with food - for example, lacking iron, we added spinach to almost every meal. For weight gain (if needed) we used ensure complete that has 30 grams of protein and 350 calories per serving, he took this twice a day. If it wasn't available, I used the boost with 27g of protein or the tiny ensured that are 218ml with the 9g of protein -4 a day. To gain weight, (if needed), I basically added cheese, full fat cream and red meat (sorry everyone) to everything. As his liver improved it seemed that he was able to add back some weight. I adjusted diet based on his feedback of how he is feeling - for example, nausea I made ginger based meals. Constipation - I add more fibre and liquids (i.e. whole fruits and veggies, veggies cooked if stomach is hurting). If he can't eat a whole apple can he eat a slice or two? If he cant eat the whole Greek yogurt portion, how about a few swallows on it? Can I make smoothies to add to the ensure diet. We also had a nutritonalist that really helped us out, gave us goals and focus points - for us it was calories and protein only - she said not to worry about the other stuff. If decisions had to be made at the time, calories first.

We passed out 3 month mark at the beginning of July. We just saw our oncologist on Monday of this week (14). CT scan from Jul shows that tumors in lover continue to shrink. All three are now under the 5cm*5 cm mark. No new tumors which I will take as another miracle. After drastic decline from March's high of 444, CEA is swaying between 18 and 36 at start of last few rounds. Weight has stabilized at our goal of 190lbs (hes 6 foot). While he experienced hand and foot syndrome this past round, and I will not allow him spicy food at all on the second week of chemo, he's overall doing swell. He's trying to get his exercise in everyday, he's eating 2-3 salads a day now plus other items I can whip up, and down to just one ensure a day (it's my insurance policy). Sure, I know the numbers too, but I believe my husband is in that small successful percentage for now and we are doing everything we can to keep it that way. Im sending you best wishes and lots of hope for you and your wife.

Sorry, me again, last comment - I called my family and his family to help boost the morale. We have a rotation, which is the best I can do. I hear you, it's hard to keep spouse spirits up. However, this is the time to call in a few favours. For my hubby, my mom stayed a couple of weeks with us and the two of them started playing game show night with wheel and jeopardy every night. Trying to guess the answers - the funnier your answer the funnier it really is! Even though my mom went back home, I've picked up this torch nightly.... Speaking of which, it's almost that time 🙂

I also recommend barrage of comedy movies, stand up comedy shows (you can make it like a date night,) bedside puzzles that she can do on a bedside table is she is feeling up to it.

I’m so sorry for your wife’s diagnosis. The decision of treatment, how far to go, & are the pain & side effects worse than living your best life possible without treatment… are the hardest decisions we make in this life, in my opinion. I won’t bore you with my entire story, just try to hit the parts that have helped me with my personal plan. I was a primary caregiver (with her husband) for my sister. She was diagnosed at stage IV cancer (I’m not sure of the letter designation), she fought for 3-1/2 years before passing away at 57yrs old. She had many side effects, & wished she would not have had the last 8 months of procedures. Two years after she died, I was diagnosed with an unrelated stage IV cancer, I had surgery, chemotherapy for 4 months, before the side effects became too great to continue, followed by radiation. At the end of it, I said I would not do that again. My care is palliative, my surgery was not successful at removing the cancer. Eighteen months after the first treatment, a new cancer showed up, again stage IV, because the treatment was different, & the doctors were very optimistic about the results, I had chemo radiotherapy (chemo & radiation at the same time). It was very difficult. For me, I am done with systemic treatment, & radiation. For me the cost is too high. Experiencing my sisters path, definitely guides my decision. I started watching YouTube videos on death & dying, as it isn’t really discussed. I’ve found them immensely helpful. I’ve had my husband watch them with me, although it’s extremely hard to deal with, he has also found it helpful. There are many good ones, but this is the one that helped me explain to my husband why I will not be doing every suggested treatment. https://youtu.be/KQEWc3LVfyc
If the link doesn’t work, it’s a TEDTalk on YouTube called; Living, Dying and the Problem with Hope by Dr. Leslie Blackhall. There are many other good ones.
I hope for clarity for you & your wife. I hope her (& your) pain is well managed. I’m sorry for this long post. Best wishes, Amy

Thank you for sharing Amy. I have read very similar experiences on other sites. I have also read a number of stories/studies in the deficiencies of oncologists and how they speak to a patient and what/how they tell them what is really happening. Long story short, when oncologists give the honest bad news, they get horrible reviews and patients go to other doctors who will give them a more (dishonest) rosy or obscure picture. So, now even though the oncologists have gone through training on what they should tell their patients, they still don't. After doing lots of research I have a list of pretty blunt questions to ask the doctor on Monday and will see what they say.

Thankfully my wife is finally feeling a bit better after this last round, less pain and dehydration under control but we start again on Tuesday. Oy... I am so thankful we have each other, I just can't imagine anyone having to go through this type of thing alone.

I’m glad you’ve figured out the questions you need to have answered. My oncologist is very candid, & realistic without taking hope away. Which I believe is a real talent.
I’m glad your wife is feeling a bit better, & hope the next cycle isn’t too bad.