Chemo fatigue?

[mcreils5]

Hi to all,
I am a new member to this community, as my wife was recently diagnosed with Stage III colon cancer with 5/15 nodes affected. She had a foot of her colon removed successfully and now is on Folfox. We are on treatment 3 of 12, and each Tx has resulted in 6-7 days in bed. We were told going in this regimen is not too bad with some neuropathy and cold intolerance being the main side effects. My wife is 38 and is having huge fatigue and nausea problems, and it seems like she is getting some of the best anti-nausea meds available. She started with IV emend and compazine for home, and is now on two Sancuso patches. With three young kids in the mix, we both are really struggling with how we are going to do this nine more times?? She even had accupuncture!

We are both trying to look at this as a big picture deal, and in five years this will be a flash in the pan, but seriously, 6-7 days in bed is crazy.

Thanks to all for your valued input, this board has already provided us lots of inspiration and real life education.

God bless

Mcreils5

[karenM]

If she is still getting sick to her stomach then she needs to tell her doctor so they can work on that. Also I was the same stage as she is and yes I slept A LOT. When I would get unhooked you could bet I would sleep 18 or more hrs a day(night sleep and naps) for the next maybe 5 days then would be better for the next 4 or 5 and then it was chemo time again. I have a lot of left over neuropathy and still dont feel my OLD normal yet and it has been over 18 mo since I ended Chemo. I am just glad to be alive Anyway maybe friends and family could give you some help with your home and children,or you could hire someone. I was lucky I was older so kids were older and my hubby is very efficient at doing house work etc so I never really worried about it. And your wife's body is doing the best it can, a lot of poison is doing its job at killing the cancer cells but also hit the rest of her body and it needs rest to recoup.

[tammylayne]

Sorry to hear about your wife, but glad you found us, and hopefully you will gain some tips and insight from the many helpful people on this board. As you have probably already figured out, there isn't much that one of us have not come up against, and we all love to share if it will help.

The one thing I have found, is that we are all different in how we react to cancer, radiation chemo etc... While many people might suffer from a set group of side effects, it is not uncommon for many of us to have a totally different reaction, and to various degrees. Some will sail through treatments, others will get every side effect in the book, and the odd one that no one has heard of. I try very hard not to allow myself to be lumped into a group...ie - You WILL have this, you WON"T have that, because we are all individuals. It is too easy to think there is something wrong, that you are not as strong as others if you allow yourself to be compared to another patient.

I also suffer from extreme fatigue, although my new oncologist reduced my amount of chemo this last round, and the chemo has been a steady 6/10, while last time it peaked at about a 9, but never went below a 7. It could be that your wife is someone who will have this as her major side effect. Bev, one of our favorite posters here on the board suffered major fatigue as well, so hopefully she will comment. My doctor has said that some fatigue is normal, but if it is completely debilitating, we need to try and tweak things a little, which he did this last round. What a difference.

If your wife is also having alot of nausea, she could not be getting enough nutrients, which would also add to her fatigue. Is it possible that protein shakes could be added to her diet? Can you consult with a nutritionist at your cancer center? Mine comes and finds me every appointment, and talks about what I am eating, and what I can do differently to make sure I am getting proper nutrition to feel better.

Be sure to mention all of this to the doctor on her next visit. Perhaps he/she will have some ideas. It is very important that they know ALL of her side efffects, no matter how small, as when they look at the complete picture, they are better able to come up with a solution.

Is your wife sleeping ok at night? This can also be a major contributing factor to fatigue during the day. If she is not sleeping well, she will need to nap more during the day, which also can cause her not to sleep properly at night. Can be a viscious cycle. In my early months after diagnosis, I took adavant at night to help me sleep, and it made a BIG difference. Something else to maybe discuss with the doctors.

You will get some great ideas and feedback from this board. Please feel free to ask anything,,,,but be sure to also discuss with your wife's medical team.

Sendnig you lots and lots of positive energies....

[cbownds]

I am also stage 3 and had the same problem of being stuck in bed and feeling terrible after chemo and I also had the emend. The chemo was wrecking my body so much I had to have shots to raise my white blood cells which were not fun. We kept lowering my doses of oxy and eventually just had to stop it completely. After it was stopped I was finally able to go back to work and feel more normal. I still need a nap during the day and I've been off chemo a couple weeks but it's nowhere near as bad as it was when I was stuck in bed from chemo to chemo. I really hope y'all figure out something that works for you.

[Kathryn in MN]

Hi to all,
I am a new member to this community, as my wife was recently diagnosed with Stage III colon cancer with 5/15 nodes affected.
We are both trying to look at this as a big picture deal, and in five years this will be a flash in the pan, but seriously, 6-7 days in bed is crazy.
Mcreils5

You might think that is crazy, but for many of us it is reality. I don't mean to be negative here, but with the cummulative effect of chemo, don't plan on the fatigue getting better. For the next several months you need to find help with the household - help with the children - and let her focus on getting through chemo. And once she is done, it will still take several months to get closer to being "normal" again.

It might help for her to push herself just a bit to get out and get a walk in the fresh air each day, even if it is very short. Not always, but often if I can get fresh air and sunshine it does help me some. I'm lucky that my children are older (youngest in high school), and that my business is Internet based, so I can work from my bed. While you hear stories of some people that breeze through chemo, others of us really struggle. No way to predict who will have it easier or harder till you are in the middle of it.

How are her white counts and platelets holding up? Hemoglobin? Check on these and if her bloodwork is doing ok, then there may not be much anyone can do except let her rest when she needs rest. More than anything else right now, she needs your support, and needs to know that it is ok if she has to rest.

[waw4]

How are her white counts and platelets holding up? Hemoglobin? Check on these and if her bloodwork is doing ok, then there may not be much anyone can do except let her rest when she needs rest. More than anything else right now, she needs your support, and needs to know that it is ok if she has to rest.

Yeah, I would agree with Kathryn there are a couple of things you can check, but in the end she may just need her rest. I would check:
1. Hemoglobin level from the blood tests (keep a record of all blood test results) - chemo can drop the hemoglobin levels to anemic levels, an issue you would discuss with her onc. - low hemoglobin levels = low oxygen in the bloodstream = low energy/fatigue;
2. Steroid dosage at time of infusion - augments effects of anti-nausea drugs (good!) but can lead to energy crash a couple of days later (bad!) as they metabolize out of her system - you may be able to lower your dosage if she's not experiencing nausea;
3. Drink plenty of water each day (particularly around chemo days) - 64+ ounces - all of the drugs have to metabolize out of her body and staying hydrated helps ensure this happens as quickly as possible.

[RayGirl]

Do they still offer Emmend in the pill form for Day 2 and 3 of chemo? This may help better than compazine. Or you may want to try a different combination. Not all nasua drugs work for everyone, so your wife may need a different combo, talk to onc about options.

Fatigue was really one of my worse side effects. Some nights I would fall asleep on the couch before the kids bathtimes. They learned to kissing mommy night-night without waking me. But no it did not consistenly get worse and actually some later treatment were actually better than a few in the middle. I was probably less stressed/more rested going into those and the onc adjusted the chemo to help a bit too.

Sorry you are going through this but you are 25% done now! And I feel 200% better now. I even feel better than I did for probably a year before the dxn.

[lydia123]

Sorry it is so rough. It sounds rough, but not unusual. It also sounds like you haven't found the right anti-nausea cocktail yet.

Relative to my husband's nausea regime, your wife is lightly medicated. He was far from average with the nausea, but it isn't unheard of to take WAY more than one drug at a time. Perhaps the problem is that the emend is in an IV, and not as a pill an hour earlier -- theory being it is easier to stop nausea before it starts? (Yes, RayGirl, emend still comes in the three pack.) What finally worked for us well enough to keep him out of the hospital was a) emend and ativan an hour before b) zofran, compazine, more ativan, dexamethazone and reglan plus benedryl prior to infusion, c) infusion followed by a nap, and then round the clock compazine zofran reglan until pump removal. Oh year, emend on the morning of day 2 and 3. (Your wife isn't male, so half as likely to get hiccups, thus the reglan may be unnecessary, although combined with the zofran it helps "get things going again.") We learned the hard way not to wait for nausea to begin, but to use the clock and my judgement about his color (pale green, agitated pink, deathly yellow...)to determine what pills should come next.

I'm spelling this out precisely because it is so different from your current regime. Call the oncologist. You don't have to wait for an appointment to adjust the regime.

I bet if the nausea were more controlled, the fatigue might lessen somewhat. It may not. Please don't call it crazy -- it may be the best she can do.

Good luck. Chemo is not for the meek, and nor is caregiving.

[Gaelen]

One note about Emend in pill form - my onc gave it to me IV in the two Folfox infusions that started this round because according to their billing office, insurances including mine (United Health Care) were no longer paying for patients to get it in pill form, only as an IV. Only Medicare patients could get it paid for to be dosed in pill form and dispensed by the clinic. Kinda makes sense since my insurance for prescriptions (Caremark, which covered my Emend pills scrip through my local pharmacy) is a different company than my healthcare insurance company. If they insist on patients getting it IV, then UHC gets to be reimbursed for it.

My plan, had I continued on Folfox, was to have a tantrum and insist on getting it in pills (which had worked) since the IV Emend was not cutting it. However, my second infusion I had a reaction to oxaliplatin and we discontinued Folfox and moved to straight 5FU, on which I've been able to better control the nausea.

I also asked for Zofran in regular swallowable pills, vs. the kind that dissolve in your mouth. There were the nastiest bad-cherry-sweet-tart tasting things I've ever taken...they'd have provoked nausea if I'd had it at the time. Insist on the regular pills.

[lydia123]

Emend: As of the end of 2010, BCBS was paying for Emend pills that we'd pick up at the CVS. We'd reached our deductible for the year already, so it was "free" and covered. If my husband were to go with the IV because of $$, I would insist we showed up an hour early for that first infusion and didn't start the rest for a while longer.

Zofran: Funny that your disolving ones were cherry -- feh. Ours ("ours" because Chris' were my leftovers from H1N1) tasted like chalk -- no flavoring at all. The disolving ones are better (the flavorless ones) when nausea is out of control (since you don't have to really drink with them), but the swallow kind are much, much cheaper.

Gaelen - glad the nausea is better controlled.

[disco nap]

Hello, I can tell you that for me, the fallout from each round of folfox was different. The first few were rough - then it seemed like I almost got used to it and rounds 4-9 were not too bad at all.

I had new and different side effects almost every round. My hair started to fall out around round #5, and started to grow back on round 10. I had acne sometimes, mouth sores occasionally, head-rushes,etc...all mild and tolerable.

Round 10-12 really laid me out, but now, a little more than two months after finishing chemo, I'm almost back to normal (energy-wise - I am still having a bit of neuropathy in hands/feet)

[Surroundedbylove]

Fatigue was one of the most common side effects for me and quite intense. However I did learn in my case that my white counts dropped rapidly on 5FU (the 5FU part of FOLFOX). In just one cycle of chemo they went from a nice higher side of normal to well below normal. So low that the doc withheld chemo for a week to see if they would rebound and had to give me Neupogen shots. During that one cycle I slept and slept. After that cycle my oncologist switched me to XELOX (Xeloda and oxaliplatin) - I did much better on that. My white counts stayed up until the last few weeks.

Separate issue - during my chemo/radiation time I had to have a red blood cell blood transfusion because I was so anemic. Once I got that my fatigue significantly improved.

My other tips for fatigue - even though it seems contrary - are to be sure to get out of the house and walk - even if it is just around the block. Often a cancer patient is depressed and it manifests itself with fatigue - getting out of the house helped to "normalize" how I felt and the movement is actually good to help build energy and not get even more fatigued. You may want to talk with the oncologist about depression in cancer patients, about your observations of the fatigue, etc. One thing I've noticed is that sometimes some patients think they are supposed to feel bad so when an oncologist asks "how are you doing? how is the fatigue? how is the nausea?" the patient may answer in a way that makes the doctor think it isn't quite as bad as a caregiver may actually observe. So, both of your impressions may be valuable.

On the subject of anti-nausea. Each person is different but keep speaking up to the onc and keep trying different combos. For me, I needed Emend at infusion, dexamethasone at infusion, Emend pills on days 2 and 3, zofran the evening of infusion day and each morning and evening after that, compazine in the morning, evening, and during the day - basically maxed out on compazine and had 2/3 of the recommended zofran dosage. If I had a little breakthrough nausea during the day I'd take that 3rd zofran pill but most days didn't need it. If I didn't follow this cocktail formula I'd be really, really nauseated and then I couldn't get ahead of the curve. The key for me was to get ahead of it so it was more controllable.

Kytril is supposed to also be good (but expensive) - worth asking about.

[RixInPhx]

Don't know what state you're in, but here in AZ medical pot becomes legal on Friday.
I haven't had any major issues to be addressed by it (loss of appetite, moderate/continual pain, and NAUSEA), so I haven't applied for a card.

But it's my understanding that a couple quick tokes does an immediate wonder for serious nausea.
Consider it if legal in your locale.

And whoever thought that oral medication was a good delivery system for nausea???

[mcreils5]

You guys are all amazing, I can't wait to read these posts to my wife tomorrow! She will get great inspiration from your experiences. And now to know that her situation is not "crazy" will really help us stay positive. Knowing what we need to do for several months will be easier than hoping it gets better each cycle, although I really appreciate the aggressive anti-nausea feedback you offered. This is truly a remarkable place for hope, understanding, compassion, and knowledge. Thank you for your wonderful input. When she feels good, my wife is a warrior and I know we will get through this.

Mcreils5

[Terry]

I'm glad her surgery went so well. Yes, it's normal to sleep that much. I was down for about a week each time also. For me it became even longer with time since I was on chemo for almost two years. I spent quite a bit of time napping and resting. But the good news is when she's done, she'll start to feel better soon after. It will take her some time to get hergh level back to 100%, possibly 6 months to a year, maybe sooner.