How are people with liver mets doing?
Comments
-
Sending healing thoughts and virtual hugs your way!💞
1 -
Has anyone heard from @threetree ? Her last post was on 3/23 and she mentioned that she was having tech problems, but she is usually an active poster. I believe that she also lives alone and I'm concerned for her.
0 -
@eleanora - Eleanora, thank you so very much for thinking of me. I really appreciate it and actually started crying when I read your post this morning. I'm here, and I'm OK, but I've been having a lot of ups and downs. Sadly, I haven't been able to follow along and keep up with everyone, but I hope to get back to it in the not too distant future. Yes, I have an ongoing tech problem that I just haven't had the energy to pursue, so can only type on my phone right now. My computer keyboard remains unconnected to the monitor, so not really able to use it, and it's difficult and tedious for me to type on my phone.
I started Xeloda in the middle of January and it causes a lot of both physical and mental fatigue, and that is some of the reason I've been absent. Then I got RSV for pretty much the whole month of April, and that just added to all the fatigue and my inability to stay up with everyone. I was just starting to get some energy back and feel better a couple of days ago, but then yesterday I had a setback with some kind of post viral (I think) ailment that causes terrible nausea, lightheadedness, dizziness, brain fog, and fatigue. I've gotten better as the day has worn on, so I'm hopeful.
Finally for the good news: The Xeloda has brought my tumor markers down dramatically and they are now back in the normal range. I had scans in mid April and it was reported that bone lesions are healing, and none of the 10 spots in my liver were visible! My oncologist says this is a "big deal" and both he and the palliative care nurse couldn't understand why I wasn't just jumping for joy and celebrating. I told them that I think the fatigue from the RsV and the Xeloda, kind of buried the joyI did feel with all of this. The happiness is there, but I just feel too tired to really express it much. I'm also wary, because we just never know how long these occasional positives will last. The oncologist told me that it was his medical advice that I do something big to celebrate, but that hasn't happened yet.
I do think about everybody here and wish I could just keep up like I used to. Fingers crossed 🤞 in that regard. I just want to say hi to all, and a very Happy Mother's Day to all the mothers on this board!
Eleanora, once again, I can't thank you enough for your thoughtfulness and concern. Sending hugs to you!
3 -
It's early Saturday morning here on the east coast and I have tears in my eyes and a big smile on my face as I'm reading your post. Totally understand the overwhelming fatigue and nausea (I'm currently having iron infusions and B12 injections for the fatigue and Zofran is my friend for the nausea). Quite a few people have Ritalin prescriptions to use as needed to combat fatigue, but I haven't tried that yet. I hate typing on phones as well, so purchased a lightweight laptop about 6 months ago and I'm sitting in my favorite chair with the laptop on a pillow on my lap, drinking coffee and "talking" to you.
I'm over the moon with joy for you at the Xeloda results and I completely agree with the oncologist's advice to do something big to celebrate. We must make the most of our victories so that we have those memories to cushion us through the defeats we know will come. I've had some ups and downs the past few months which I'll tell you about another time, and at the end of my most recent MO Zoom appointment, she smiled at me and said "go book a trip".
If you'd like a trip that accommodates the variability of your condition, I highly recommend a cruise. I've taken three in the last few years and they are the most relaxing, least demanding form of travel that I've found. You might be surprised at the number of walkers and wheelchairs among your fellow passengers.! Viking has small ships with no children and no casinos, and I prefer that atmosphere. If that sounds too exhausting, just pick a city a reasonable distance from you, check out the upcoming activities (theater, concerts, art shows) and book yourself a nice hotel room. If energy permits, you'll have new scenery to walk through, and if fatigue is an issue, sit in the lobby or on a terrace and watch all the new people walk by. Perhaps the friend who has been so steadfast in accompanying you to the fulvestrant injections would like to join you.
Will sign off before I exhaust you by reading this. Please check in periodically, even if only with a short post. You have been missed. ❤️
1
