Stage 3b 2 positive lymph nodes one year later metastatic to liver

Good morning! Im taking 2000 mg a day 2 morning 2 night I was also on this last year on firsr round of this experience this time i think im better prepared last time (I was on it for 6 months) it took about 4 weeks for side effects to start like hand foot being tired This time im prepping my skin im already using socks at night to heavily coat my feet with good ole fashion bag balm along with Eucrin 40 percent lotion also on my hands with a pair of chepo gloves Drinking lots of water and just ordered last week and additive called Nectar that is sugar free and lots of all natural ingredients including helyam sodium which is more natural My onco also advised me to make sure to eat a full meal before taking take meds within 30 minutes of eating along with ZOFRAN for the nausea. this time im following exactly what she said! Also to lay down for about 30 to 45 minutes after taking So im into day 5 on this round and had no effects (even though last time took a while) because im trying everything possible to stay ahead! Is this your first time on it? I lost the first time way too much weight over 30 lbs but it was after the dose of Oxaliplatinthat did me in ! I had to get hydrated iv for almost 2 weeks! They stopped it increased the Capaecitabian to 3000 mg per day that was rough had mouth sores but she got me Magic Mouth wash I also took Benadryl and it stopped it! so this time i have a bottle here as a safeguard! ok im off to get my port flushed ugh! yes lets keep in touch and compare notes and support each other! xo

@grandmakat5

How did yesterday go?

I have been on capecitabine for almost 3 years due to my pancreatic cancer with metastasis to the liver and bones. I now have my routine down, but each cycle can be a little different. When I started, I was on 2500 mg daily. I was also on another oral chemo called temozolomide for the last five days of the capecitabine 14 day cycle. I then took two weeks off before starting again. The combination of capecitabine and temozolomide is called CAPTEM for short. I took Zofran before taking the temozolomide at night. It REALLY helped with the nausea. The eating before and laying down is just a habit now. They really still help me. That's what I took for the first year. Afterwards, I stopped my TEM part of the chemo regimen and have been on only 2000 mg of CAP since. I still take it 14 days on, 14 days off. The cancer lesions on my liver are still decreasing, I have less in my bones, and my pancreatic tumors are stable. I know the capecitabine is still working.

I have to commend you. The preparation, planning, and execution of the plan is what makes taking capecitabine tolerable for me. You seem to have yours in place. I still get skin issues, if I don't properly "moisturize". Initially, my monthly visits with my oncologist frequently started with, "Hi Tom. How many times have you moisturized today." I still get some dryness, but it is way more tolerable. I keep cerave lotion conveniently available at all times. Same with mouthwash for the mouth sores. I still get some body aches and pains, but I stretch a lot to manage them. Everytime I get in and out of bed, I stretch. I also walk with my dog everyday. You guessed it. I stretch before and after. Being active and stretching really makes a difference for me. There is no getting around the tiredness. I have learned to nap. I have never really done that in my life. I just couldn't nap. I can now. I also stick to a nightly sleep schedule. That has helped me so much. Capecitabine requires rest. Get it the best way you can.

I am a big fan of it capecitabine especially since my ability to tolerate it is mostly manageable. But, I needed to change some behaviors. As an added bonus, it also resolved several squamous cell skin cancer lesions. Capecitabine is kind of a wonder chemo for me. I have to admit, I am fan of it.

Any other questions? How are you feeling today? Do you do anything physical to help with the aches and pains? How are you handling the mental and emotional sides of having cancer? At times, they have been way harder for me to deal with than the physical issues. I can't be the only one that feels like that?

Morning! Yeah im trying to hang in there mentally this waiting on biopsy results is hard im hoping the good ole saying that if they dont call right away its better news. Its just so fricking hard being cleared in December even almost got my port out but didn't thinking I made it to here we go again Another summer bascially in the house (were boaters run around with 5 grandkids to watch baseball and football games etc 3 of them live in Kansas were in So Cal and we use to go back about every 6 weeks for a few days to watch their sports) and now feeling with it spread to liver and 2 small on right upper lobe of lung is this ever going to be the end or is it the end of me! I keep saying i have to much life to live still and im not at all ready to go. I try to keep a positive attitude around my husband family and friends but inside im crushed. My mind spins like is this going to be the last time I experience this! then i try to snap out of it saying fight fight fight So my emotions are all over the place. and yes Capaecitabian has been good med! At least for now i have my hair. one benefit I know that sounds selfish but...

@grandmakat5

I hope it felt good to let that out. If not, say it again and again until it does. You are only human after all and it sounds like you have a lot to live for. I feel very fortunate that I do too. After my diagnosis, the first few months were hard. I felt like humpty dumpty except I thought that I could never be put back together again. I felt completely hopeless. Then I got random calls from family and friends. When my dad eventually called, the toughest person I know, I couldn't hold it together. I completely lost it. He said you have two options. Quit or fight. When you can't fight for you anymore, do it for me. Do it for your wife, your kids, your brothers, your sisters, and everyone else in your life. Do it for us.

I knew that I had to change. The first thing that I did was separate myself from the disease. It was easier for me to learn and study about cancer and put together a battle plan with my care team, if I wasn't the one that had it. Ironically, it became much easier to follow.

The second thing that I did was try to live in the moment. It sounds like you have some sports in your family and so do I. When I coached middle school baseball and basketball, I coached the kids that the most important play is the next one. You can't change what is done good or bad. The only thing that you have control over is the next play. Try to make it your best. I applied that mindset to battling cancer. Make each second the best that I can regardless of how I feel or think. If I can string some good seconds together, I might be able to make a few good minutes possible. Next, try to string a few minutes together. Then, shoot for a few hours with the idea that hours become days. Days become weeks. Weeks become months and so on and so on. The idea of making good seconds really helped me focus on the moment.

The last initial change that I made was to reach out to others that are going through the same thing. I joined Mayo Connect. I realized that I wasn't alone. I could take a deep breath and start to heal mentally and emotionally with others. I can't thank the folks here enough for helping me through some very difficult times.

What motivates you want to fight when you can't do it for you? What keeps you in the house? In your mind, what needs to happen to get you out of the house?

thank you! Well new thing happened the docs office called this afternoon moved the appt to this Friday. They said she wants to discuss alternative treatment plans so now my emotions have really gone crazy Dont know if thats good or bad! and yes were big time sports family including my adult children and 5 grandkids so i completely understand what you mean and its great advice! My son actually played for the Dodgers in the minor legue when they were in Vero Beach. ok well im going to try my best to do this and really appreciate all your great input and suggestions. I just still feel like im in a dream and need to wake up!

I had the biopsy last week Docs office called yesterday to this Friday (a week earlier) the burse told me she wants myself and my husband to come in and talk about alternante treatments I dont know if this is good or bad an earlier appt and alternate treatments! my mind and emotions are spinning now

Wasn't it Tom Petty that said that the waiting is the hardest part? So the appointment is tomorrow? I feel like the doctors are human and want to end the week on a positive. Wouldn't you? I have enjoyed some positive doctor's visits on Fridays. Hopefully, you can continue the trend. Let us know how it goes ok?