Howdy (Intro and fatigue question)

Hi Mark,

First of all, sorry that CRC brought you to this board but welcome. Yea, fatigue is tough. I don’t know what can help with that. I would be careful with the iron as that has a tendency to cause constipation. My onc said that folic acid is not good. I had no idea and before my first treatment, I bulked upon the folic acid. As a result, my first treatment caused me a lot of pain in my bones. Not sure if folic acid was the problem, but my doc said most likely.

I found that medical marijuana helped with fatigue and the general malaise. But sometimes you have to listen to your body and rest.

Good luck fighting the insurance company. Sometimes they need a solid push back.

This board has been a great help to me. Feel free to ask any questions.

k

Real Tar Heel said:

Thanks!

Thanks!

 Hi Mark:)

I'm also new here. My name is Kristine and I'll be 53 on the 30th. My doctors tell me I have stage 4 colon cancer, but besides dealing with some killer neuropathy I'm doing okay. I had the chemo pump for four months, 7 rounds of chemo 8-9 hours a round, and the chemo pills. Chemo to me is like hiking up a mountain where when you start it's not that hard, but the more you climb the harder it gets. You are going to be tired from chemo since your body is in the fight of its life. I strongly recommend a port. Mine became my security blanket. I thought the chemo pills were going to be a walk in the park, but for me they were the hardest. I stopped chemo after the 7th round because my gallbladder pooped out and I had it removed. You can stop chemo at anytime or give it a rest. I tried the chemo pills three times, tweaking the dose before I stopped taking them. I took the chemo pills after my middle right lung lobe was removed. That surgery was a walk in the park and I was back on my tredmill in three days.

If I could go back in time before my chemo started this is what I would tell myself, but everyone is different.

Read all your paperwork on the meds you're taking. STUDY the list of side effects and google them. If you have a problem don't wait, call your doctor. It's okay to change doctors and or hospitals. Have water with you ALWAYS and take little drinks all the time. Wash your hands and double wash them when you come home. Change your clothes when you come home and wash everything. GOOGLE C-Diff!!! If you use the public bathroom in the hospital and it is "EXTRA STINKY"...LEAVE! Find bathrooms where not a lot of people use especially at the medical buildings. I had C-Diff twice and I caught it during chemo visits. If you think you have C-Diff get tested right away. Wear a mask if you go out when having chemo or after. Limit your visitors...they might have cooties! Ask for help when you need it. When people ask what they can do for you ask for prayers:) or what you need. Stay away from sugar and alcohol. Eat foods that work well with your body. Mine would be Apples, oranges, blueberries, roasted veggies with olive oil and seasonings, sweet potatoes, THE GREEN ONES:)!, yogurt, salmon, chicken, gingersnapps, goldfish and lightly frosted animal crackers. OKAY, you can skip the animal crackers or only eat the pink ones:) Stay away from all nuts (I LOVE them so I do nipple walnuts sometimes) and NO seeds. Even almond flour feels like glass going through me. Avoid pop, but I still have the Monster zero ultra. I don't think I could function without them, but my doctor wouldn't agree. I don't like fastfood so that was easy. Just because something works for others it may not work for you. IGNORE most people giving advice. Just because it worked for Uncle Bob it may not work for you. Everyone's body and cancer is different and your doctor knows more then your next door neighbor or mother...LOL! Get orginized, simplify your life and put you and your family first. REST when you feel tired, but try to keep a balance so you are not up all night. If you are up all night don't let your worries spiral. Read books on your cancer, but also read books you enjoy:)...even the steamy paperback novels:0! Fill your self with thoughts, activities, music that are positive. If you are up to it, make it to church ON TIME!!! That was a hard one for me, but I have been getting better:) DON'T pull that little "thread" if you have stiches...it will get infected. Walk on the tredmill everyday even if it's 10 minutes! An ostomy is not the end of the world. You will never have poop streaks in your undies, not that I ever did, but it will make your boys laugh and they can relate since you did do their laundry:) Skip the one piece ostomy supplies (they are so gross) and go for the two piece click pouch by Coloplast, you will always feel "DAISY FRESH". Hollister will give you a terrible rash. Use the stomahesive powder or protective skin barrier around your stoma before putting on your "package". Use the barrier strips (the half circle ones) over the sides of your wafer if you are going to be out in public for quite a while. Don't flush baby wips down the toilet, it will plug it. Put your used supplies in zip lock baggies so you don't stink up the bathroom and carry them in your purse when going out. Always bring 3X more supplies then you need and even extra ones when going to Frankenmuth! Adhesive remover wips work great on poison ivy. Make everyday special for your Love & kids. Tell them what is going on. There imagination is bigger then reality. LOVE YOURSELF:)...and it's going to be OKAY, one way or another:) 

Welcome to the forum, although it sucks that you have to be here.

I highly reccomend sleep for the fatigue. Only thing I found that really worked.  LOL  Seriously though, lots and lots of protein helped me out alot with the chronic tired. Didn't make it go away, but I found I was less of a dragon if I kept my protein level high.

Good luck with treatment, it's a real booger. Let us all know if there is something we can help you with.

StillDancing said:

Hello:)

 Hi Mark:)

I'm also new here. My name is Kristine and I'll be 53 on the 30th. My doctors tell me I have stage 4 colon cancer, but besides dealing with some killer neuropathy I'm doing okay. I had the chemo pump for four months, 7 rounds of chemo 8-9 hours a round, and the chemo pills. Chemo to me is like hiking up a mountain where when you start it's not that hard, but the more you climb the harder it gets. You are going to be tired from chemo since your body is in the fight of its life. I strongly recommend a port. Mine became my security blanket. I thought the chemo pills were going to be a walk in the park, but for me they were the hardest. I stopped chemo after the 7th round because my gallbladder pooped out and I had it removed. You can stop chemo at anytime or give it a rest. I tried the chemo pills three times, tweaking the dose before I stopped taking them. I took the chemo pills after my middle right lung lobe was removed. That surgery was a walk in the park and I was back on my tredmill in three days.

If I could go back in time before my chemo started this is what I would tell myself, but everyone is different.

Read all your paperwork on the meds you're taking. STUDY the list of side effects and google them. If you have a problem don't wait, call your doctor. It's okay to change doctors and or hospitals. Have water with you ALWAYS and take little drinks all the time. Wash your hands and double wash them when you come home. Change your clothes when you come home and wash everything. GOOGLE C-Diff!!! If you use the public bathroom in the hospital and it is "EXTRA STINKY"...LEAVE! Find bathrooms where not a lot of people use especially at the medical buildings. I had C-Diff twice and I caught it during chemo visits. If you think you have C-Diff get tested right away. Wear a mask if you go out when having chemo or after. Limit your visitors...they might have cooties! Ask for help when you need it. When people ask what they can do for you ask for prayers:) or what you need. Stay away from sugar and alcohol. Eat foods that work well with your body. Mine would be Apples, oranges, blueberries, roasted veggies with olive oil and seasonings, sweet potatoes, THE GREEN ONES:)!, yogurt, salmon, chicken, gingersnapps, goldfish and lightly frosted animal crackers. OKAY, you can skip the animal crackers or only eat the pink ones:) Stay away from all nuts (I LOVE them so I do nipple walnuts sometimes) and NO seeds. Even almond flour feels like glass going through me. Avoid pop, but I still have the Monster zero ultra. I don't think I could function without them, but my doctor wouldn't agree. I don't like fastfood so that was easy. Just because something works for others it may not work for you. IGNORE most people giving advice. Just because it worked for Uncle Bob it may not work for you. Everyone's body and cancer is different and your doctor knows more then your next door neighbor or mother...LOL! Get orginized, simplify your life and put you and your family first. REST when you feel tired, but try to keep a balance so you are not up all night. If you are up all night don't let your worries spiral. Read books on your cancer, but also read books you enjoy:)...even the steamy paperback novels:0! Fill your self with thoughts, activities, music that are positive. If you are up to it, make it to church ON TIME!!! That was a hard one for me, but I have been getting better:) DON'T pull that little "thread" if you have stiches...it will get infected. Walk on the tredmill everyday even if it's 10 minutes! An ostomy is not the end of the world. You will never have poop streaks in your undies, not that I ever did, but it will make your boys laugh and they can relate since you did do their laundry:) Skip the one piece ostomy supplies (they are so gross) and go for the two piece click pouch by Coloplast, you will always feel "DAISY FRESH". Hollister will give you a terrible rash. Use the stomahesive powder or protective skin barrier around your stoma before putting on your "package". Use the barrier strips (the half circle ones) over the sides of your wafer if you are going to be out in public for quite a while. Don't flush baby wips down the toilet, it will plug it. Put your used supplies in zip lock baggies so you don't stink up the bathroom and carry them in your purse when going out. Always bring 3X more supplies then you need and even extra ones when going to Frankenmuth! Adhesive remover wips work great on poison ivy. Make everyday special for your Love & kids. Tell them what is going on. There imagination is bigger then reality. LOVE YOURSELF:)...and it's going to be OKAY, one way or another:) 

The poop stain comment was great!!  I tell my grandsons at random moments "Guess what I'm doing" and they say "what". I then say "Pooping" and it cracks em up every time.

Welcome to the board you never wanted to join, but you have come to a great group of people that will help you get through this. 

It sounds like you have already been through some of this already and have some symptoms that a lot of us experience.  The painful bowels are one that is common and that happened with me.  Just make sure that you drink lots of fluids as it will help with constipation.  Also, a barrier (like calmoseptine) helps with the acid burn from the loose stools during treatment.

It's hard to believe that they won't continue treatment without a CT scan.  My doctors wanted treatment done first and then scan, or some will scan half way through treatment.  Maybe your doctor's office can call your insurance company and explain better their plan for you.

As far as fatigue, rest when you can, but don't become a couch potato either.  It's sometimes better to push a little bit even when you don't feel like it - but don't overdo. 

Wishing you the best going forward.

Kim

Real Tar Heel said:

Thanks for the reply. I don't

Thanks for the reply. I don't know if I could carry on working, my hat is off to you (I don't wear hats because I have long hair but I'll tip it anyway). I mostly stare at the screen for a few hours and it seems to fool my family into thinking I'm working so that's the best I can do for now. Chemo brain seems to be real! Congrats for making it through 12 rounds. That's awesome.

LOL chemo brain is SO real... One time I was going for my treatment and I seriously couldn't remember my name. Of course I started to cry and the receptionist was looking at me like I was a weirdo... I had to go sit back down, and about 15 minutes later I remembered my name. And I'm a year out from my last chemo treatment and my brain still isn't right. I've learned to laught at the blank spots and the randomness although sometimes it's not really all that funny. But I've even got my grandkids claiming they have chemo brain when they do something that doesn't make sense.