Friendly Doctor, But doesn't give prognosis or seem to see how serious the condition is. Please Help

Lobsterdinner

My younger brother has Stage 4 Colon Cancer. He was diagnosed almost one year ago. They did surgery to remove the tumor in his colon. He underwent Chemo right away. The PET scans have shown the cancer getting worse each time. It metastasized to his liver on the first PET Scan. The last PET scan showed it moved to the lungs. He has been receiving chemo for about 9 months…………………….. When it got to the lungs they increased his chemo to that very high F. U. 5 dose. This put him in the hospital for 3 days. He developed 3 blood clots in the lungs the doctor says due the the new chemo regimen.…Oh it gets worse!! He also has major pain in the Esophagus and has had that for about a month. It has caused him not to be able to eat and he has been on a liquid diet since the hospitalization. He is has been home from the hospital for two weeks. He is has lost 45 pounds and still loosing……… The esophagus pain has gone away a lot. Not able to do any procedures on the esophagus due to the blood thinners.

They gave him a Chemo treatment one week ago. He is getting weaker and weaker every day. He can no longer drive. He can not leave his house as he does not have enough energy. He can't even check his mail. No energy at all !!! Zero !!! He sleeps all day in a living room chair. He is 58 years old. Prior to the last 4-5 months-he rode his pedal bike every day, and swam. He's always been a very active, physically fit guy. People always thought he was in his 40's when he was pushing 60.

My question is: What is going on with him still getting chemo. Why? ? He's so WEAK !

He does want to fight and keep fighting, but I am watching him in real time get so frail and weak.

He has level 8 -9 pain in his back. My online research tells me it is possibly a new tumor and /or the Liver being inflamed and pushing on the nerves causing intense pain. He sits with a heating pad all day-every day. He is now taking strong pain relievers 2X a day-and the fought so hard to not have to take them-but now needs them.

1/2 the time they don't seem to work. He is still in pain 2 hours after taking them.

I live 3 hours away. I am moving in with him this week. It has now come to that point. However, we were at the Oncologist 5 days ago and they don't give us any idea of prognosis. It seems sadly-to me…… that he is now actively dying. ? ? I can barely write it. Yet they have him taking his chemo treatment in a few days.

I have palliative / home health care finally coming next week for an evaluation. Thank goodness he agreed to it. I've tired beef and he has not wanted palliative care. I had to inquire with the dr. office who to call. They don't offer any information at all to the family, or the patient.

Any and all advice would be so greatly appreciated. I am the only family living in the State. We have another brother 12 hours away that comes to help often. Mom and Dad are gone. His wife passed away last year (age 56) of Kidney failure. This is the hardest thing I have ever experienced in my life-and I've raised kids. Nothing tears you apart like watching your love one suffer so much. Thanks for reading.

bibliophile

I'm so sorry to hear about all your struggles and what your brother is going through. I also am battling stage IV colon cancer, and the chemo can be tough.

I am sorry that you don't feel like you are getting the answers that you want from your doctor. I, also, have found that some doctors are less likely than others to give you prognoses. I sometimes just have to ask them outright. And sometimes it has helped when instead of asking about a prognosis to ask questions framed more like, "If we continue to do ______, what is the outcome you think will be most likely? What if we did ___________ instead? What do you think the most likely outcome would be?" "What is the short-term goal of this particular treatment we are pursuing right now? What is the long-term goal of this treatment?" Because results are so specific to individuals it is, legitimately, hard for doctors to make predictions, but I have found the above questions to be helpful as I try to decide what types of treatments I want to pursue and what the trade-offs are.

If you have the ability, second opinions have also been very helpful for me. If they confirm my local doctor's advice, that is very comforting. If they offer more or different options, that can also be helpful. Many insurance plans offer free second opinions with major cancer centers and some of mine were even available virtually so I didn't have to travel. I know sometimes the thought of even more appointments can be overwhelming, but if you are questioning current treatment decisions, maybe a second opinion can offer some additional insight.

I find it useful to keep a list of side effects I am experiencing (because it is hard to remember everything in the moment) and make sure to bring them up to the doctor during appointments. First, it makes sure the doctor has a full picture of what is happening at home. Second, they may adjust dosages to help. Third, they may have advice about how to relieve symptoms. And my chemo nurses have been excellent resources for dealing with side effects because they see so many patients and hear the nitty-gritty details.

That is incredibly kind of you to move in with your brother. I am sure that he is very thankful, and I am sure you are making lots of sacrifices. I am not a caregiver, but I see all my husband does for me and am so thankful for him, but I know it is hard on him, too. I am usually on the chat at night. I was reading back because I missed a few days and I think you popped in. It is a really great place to talk and people are usually there from about 9 ET for a few hours. I hope that you will come back on when it is convenient and hopefully we can talk more. Or I would be happy to answer any other questions you have if you want to keep replying on this discussion board.

So sorry for all you are both going through. Best wishes!