Postby Bev G » Sat Jul 25, 2015 11:17 am
EDITED TO ADD:
Toto, you and I were writing at the same time, so I just saw your second post. I was assuming you'd just been diagnosed when I wrote this. I would still recommend that you get a second opinion at an NCI center, especially to make sure you were properly informed about the discontinuation of chemo, as well as any surgical options you might have. As far as the cancer fatigue, it is real and it is really hard. I was diagnosed stage IV 5+ years ago. I has extraordinary fatigue at the time I was diagnosed. Unfortunately, I still have it. I don't know that it's a sign of end-of-life in your case, butt, it is very, very common for many of us. Sometimes docs prescribe Ritalin or similar drugs to counteract the fatigue---something you could talk to your onc about.
Hi Toto, and welcome. Probably this is the scariest time of your life, and I'm so sorry you are going through this. We've had lots of members here who were given a matter or months to live when just diagnosed, and many are still alive years later. Of course no one here knows exactly what is going on with you, so giving you much in the way of advice at this point isn't likely to be very helpful.
However, a few suggestions for right now might help:
1) Do WHATEVER you have to do to get to an NCI cancer center. I would suggest that even if you aren't close to one, find a way to get there. I'll post a link to the NCI site so you can see where you need to go. With a new stage IV diagnosis you want the experts to help you get on it right away. I am guessing that you are not at an NCI based upon what the oncologist told you.
2) Get copies of all of your lab work, scans and whatever other testing has been done. Get a big notebook with dividers and start filing that stuff in it. My notebook from just the first two years after my stage IV diagnosis is 3" thick.
3) You might want to explore joining the Caring Bridge site as a means to let your family and friends know whatever you want them to know, so you are not burdened my endlessly repeating yourself about what is going on. There are also sites what provide a means for asking for the help you need (transportation, meals, help with childcare, etc) I'm sorry I can't remember the names of any of them, butt a Google search should help you locate them.
4) The initial time after diagnosis is always total chaos. You are probably feeling both terrified and totally out of control. As a plan for the management of this develops, you will feel better. Don't jump to ANY conclusions right now. You are embarking on a "journey" no one ever asked to go on. You will find you are able to do things you never imagined you would. While all the initial stuff is sorting out, don't forget to B-R-E-A-T-H-E.
5) Don't Google colon cancer stats. You will freak yourself out, and it becomes so difficult to remember that the stats DO NOT APPLY SPECIFICALLY TO YOU. Many of them are outdated, and you won't yet have the context to helpfully apply them to your situation.
6) Get help if you need it in talking about your diagnosis to your kids. It will depend upon their ages, and a number of other things. I hope there is a social worker affiliated with your onc's practice who can help you with this.
Come here as often as you'd like. Between all of the members here, we've pretty much been through it all. We will do everything we can to support you through this.
Best wishes to you,
Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now