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Howdy (Intro and fatigue question)

Real Tar Heel
Posts: 52
Joined: Nov 2019

I don't know if there's a place where everyone does hellos to the group, at least I couldn't find one, so I've started a thread, lol.

I'm Mark, 53, with oligometastatic CRC. I was diagnosed in Feb 2019 after a few years of complaining about anemia and chronic diarrhea (I didn't have a PCP). Doctors always seemed to ask me about my sexual history... Frownmarried for 15 yrs....

Eventually, I just got lucky and ran into someone who prescribed a colonoscopy and got my insurance to approve. That revealed a 6 cm tumor in the ascending colon with a malignant core (like 2 cm), nothing in the lymph nodes or anywhere else. After the surgeon removed that, they believed that I was in the clear until the CT scan revealed a smaller tumor in the liver. The surgeon used RFA to burn it away, and then prescribed adjuvant chemo (FOLFOX) for 6 months. I'm in the second month. 

Strange thing, insurance is whining about paying for another CT scan so that's holding up the approval of the next round of chemo. I get a week off and I feel like I needed it.

First round, smooth! Second round, okay... Third round...I can't get out of bed. Fourth...slightly better than the third...

Fatigue was my biggest problem. My CBC looks okay, hemoglobin not that far off normal, but it feels like I cannot do anything, which is horrible for me, being a former college athlete. I'm self-employed but have been finding it difficult to do any work lately. The second biggest issue is the difficult bowel movements (I've read here people describe them as feeling like passing shards of glass and I concur!). I'm feeling the cold sensitivity (neuropathy) and bizarre taste sensations but those are more annoyances than anything.

So, what do you guys do for fatigue? I've been taking iron supplements, I don't know if it's helping that much. Before the partial colectomy I was taking iron and folic acid, and the addition of folic acid seemed to help with the anemia but my oncologist has said "NO!" to folic acid supplements. I feel as if I'm not contributing to my fight because I can't exercise, I can't contribute to my family because I'm near useless some days and the Oncologist wants to try positive thinking or some such...

Kazenmax's picture
Kazenmax
Posts: 395
Joined: Feb 2016

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
Posts: 52
Joined: Nov 2019

Thanks!

StillDancing
Posts: 9
Joined: Nov 2019

 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:) 

AnneO1965's picture
AnneO1965
Posts: 111
Joined: May 2019

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.

Real Tar Heel
Posts: 52
Joined: Nov 2019

Wow, that was a lot. The surgeon cut out a couple of feet from my lower colon thankfully left me with a few feet more, so I still have to worry about stains, lol. I had such a strange appetite during the chemo, sometimes I eat nothing and sometimes I eat all of Burger King. I generally avoid fast food but in the evenings I'm the only adult and I don't feel up to cooking so we do have a burger or chicken once or twice per week.

I thought electrolytes might help the fatigue so I was only drinking sports drinks for a week but all that did was raise my resting heart rate. I'm able to walk around, almost felt like working out this weekend ... almost. Doing work around the house is draining most of my remaining energy.

Thanks for the advice and support!

Canadian Sandy's picture
Canadian Sandy
Posts: 545
Joined: Jul 2016

I love your sense of humour Mark. That will take you a long way. Keep positive! As for the fatigue, your body has been through a lot so Give it lots of rest. Do make sure your blood test results are okay. I had lost my electrolytes and that's what caused me to be extremely tired. Good luck in your journey. I am 3 1/2 years in remission...hopefully you can do it to.

Real Tar Heel
Posts: 52
Joined: Nov 2019

Hi Sandy. It's usually only my kids who think I'm funny, so I appreciate the compliment. Last blood test showed low hemocrit but not enough to bother my Onc. I'm starting to think it's a conspiracy because she went to Duke (Tar Heel joke) and maybe she's looking the other way... Actually she is awesome, I lucked out. As I posted above...maybe I read one of your posts?... I have been drinking sports drinks to up my electrolytes and keep hydrated. I don't know if it is making a difference, if it is the iron tabs or both.

Well, the days directly after the FOLFOX is done are the worst, I'm hoping it will be a little better this time.

AnneO1965's picture
AnneO1965
Posts: 111
Joined: May 2019

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.

Real Tar Heel
Posts: 52
Joined: Nov 2019

Yes, sleep... (whispering: I live with a massive snorer so I may have to sleep on the top of the house like snoopy to get some sleep)

I try to get enough but I'm kind of a night owl. During my 2nd round when the first signs of neuropathy showed I was waking up in the middle of the night because my leg would twitch at the knee. Thankfully that has gone away after the last round.

I wear a Fitbit which I commend to everyone, you can track your own stats. It's pretty accurate on heart rate but I wish it had a blood pressure and VO2 tracker.

Trubrit's picture
Trubrit
Posts: 5009
Joined: Jan 2013

Sorry you have found yourself here, its not the 'happening place'. 

But, you are here now, and we are full of info, support, love. We even have a laugh now and again. Its not all doom and gloom. 

I never did find anything to conqure the ftigue. I think I could have done a bit more exercise, as several of our members - especially NewHere - have said that if they push through, it helps, but it does not eliminate. 

I had the form of fatigue that would bring me to my knees, literally. And once I got to the couch, I could not move. It was proably up there at the top of my list of worst side effects. 

Stick with us, and we will help you through. 

Tru

Real Tar Heel
Posts: 52
Joined: Nov 2019

Thanks.

SoCal42
Posts: 78
Joined: Jul 2017

I've had lots of fatigue issues with various chemotherapy combos, and have never found anythng that  actually helps the fatigue. It's frustrating, because before going on medical leave, I worked 10-hour shifts at a very busy job. Mostly I've just tried to learn to accept the fatigue as part of the chemo package. Sometimes that means I just have to sit down for a while and rest, and sometimes it means I have to take a nap, no matter what time of day it is. I know I'm having a good day when I don't need to nap. The other extreme is when I sleep 10 hours at night, then need to take two or even three more naps during the day.

Real Tar Heel
Posts: 52
Joined: Nov 2019

Thanks. Taking a nap no matter the time of day is definitely my life now. Glad I work (worked?) from home.

Annabelle41415's picture
Annabelle41415
Posts: 6349
Joined: Feb 2009

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
Posts: 52
Joined: Nov 2019

Hi! Thanks for the reply. Looks like there is some movement on the insurance front. Just waiting on the schedule to change now. I don't know if missing a week will be a problem but I did enjoy the week off...

Annabelle41415's picture
Annabelle41415
Posts: 6349
Joined: Feb 2009

One week off isn't going to make a difference as the chemicals stay in your body for awhile.  Glad to hear that insurance company might be waking up to reality.  Hoping you get back onto treatment soon.

Kim

OnTheRoad
Posts: 15
Joined: Jul 2018

Hello, Mark

Welcome to this forum. I had the full 12 rounds of Folfox... and my onc was always pushing me to try to not reduce any medication dosage. Fatigue was one of my biggest problems. The not so good side of it is that chemo has cumulative effects, so, during the treatment the fatigue might get stronger. 

During my treatment what I did was to use my lunch time to take a quick nap. That gave me energy to be productive until the end of the working day... and then I got home and had another nap and got some energy to endure the night until 9-10PM. 

The good side of it is that you should recover completely some time after the treatment. Just stand strong during the chemo treatment. It is harsh, but it will end.... and count on the very nice people here in the forum to help !

Real Tar Heel
Posts: 52
Joined: Nov 2019

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.

AnneO1965's picture
AnneO1965
Posts: 111
Joined: May 2019

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.

Trubrit's picture
Trubrit
Posts: 5009
Joined: Jan 2013

I had terrible chemo brain, and it stayed bad for a few years. It is still not 'right', but much better. I think it is at the stage where it is only obvious to me, now. 

Here is an example from six years out of treatment.   

One of the big things for me with chemo brain, was going totally blank. When it hit, I would look out into space, like some kind of zombie.  One day last year, I was serving a customer in the little shop I used to work in. Three purchases, 2 $30 purchases and on $7 purchase. I couldn't use the till, becasue two were tickets. Anyway, I could NOT add 30+30+7.  I looked off into space. I work alone, but that day my boss was there - typical - Everybody was looking at me like I was some kind of fool.  My boss shouted out the total. I was mortified. 

So there, run with it. Have fun with it. Don't let it get you down. It is horrible, and you will feel like you're going mad, but you're not. 

Tru

beaumontdave's picture
beaumontdave
Posts: 1015
Joined: Aug 2013

Hi and welcome to the Fighter's Lounge, er blog. Fatigue was a big fight during the "Twelve Rounds of Folfox, my doctor gave to me". Sorry, anyway I recall drinking alot of coffee and taking the Norco liberally to get through work, which was physical, as I'm a contractor. The wife helped alot, going with me as much as she could and helping when I'd feel like crap and had to sit in the truck at regular intervals. She drove when I wanted to snooze or just veg. It would have been so much harder without that sweet, sturdy creature. This doesn't help you cope I'm sure, but know others have found a way, and in my case it was a bit of will, a lot of luck in scheduling and weather, and the perfect partner in life. Good luck to you!..............................................Dave

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