extreme fatigue

[Matthew]

Hello again everyone - my wife has had her first FOLFOX this past Monday (avastin is on the same week Weds) - result - extreme fatigue - as in she has to be prompted to do everything - EVERTHING - sleeps most of the time, and even when's she's awake, she seems almost like she has ALzheimers...

We were in for hydration at onc Wed, Thurs and today. Normally she manages pretty well on her own, but now I'm thinking I need to get our local home health aide outfit to come in for a few hours until my kids get home (18 and 14) on those days I'm not home with her...

Any suggestions? Onc says NO steroids, no nothing for fatigue...

I breaks my heart to see the vacant look on her face even when she's trying to be awake...

Is this FOLFOX? Does she get "used" to it?

Or...is this...the inevitable slide down...............

[shellfry]

Well I still blame things on "chemo brain" because I still feel like I'm in a fog after almost a year off chemo!

My fatigue level was so bad that I would lay my head down in the middle of my desk until it was time to leave. I only live about a mile away so I'd be changed and in bed for the night before 5 pm! It was horrible. My doctor suggested Ritalin, and I didn't want it at first. After a week of being in bed by 5 everyday, I decided to take her up on the Rx. My first day on it was great! I was still tired, but could make it through work and then dinner. I'd want to go to bed by 8 or so, but it was so much better for me.

[Matthew]

Thanks!


She's not working - basically we just drag out to the onc and that's it. We had a huge field trip to Staples and gas station after onc...who HATES prescribing pills, so to speak...I asked about this and he's just - "well that's chemo," she sick, etc etc etc.

So you think Ritalin would help? I'm up for trying anything because this is truly like she's a zombie...

[waw4]

Any suggestions?

I would wonder about the blood work, particularly regarding number of red blood cells (for oxygen transport) and iron levels. Can you review her latest blood test results? Would her onc test for anemia on her next blood draw?

Is this FOLFOX? Does she get "used" to it?

This level of fatigue is not typical with FOLFOX, in my opinion.

Or...is this...the inevitable slide down

In my opinion it's not this either, with just 1 liver met and a couple in the lungs.

[Matthew]

THanks so much guys - well she gets the steroid with her infusion, which used to keep her going for a few days, then crash, then be ok by Sat/Sun...I did notice once the Avastin started the Sat Sun was more like Sun/Mon, but was ok.

Dr is 1000% no to steriods - worried about masking symptoms, etc etc etc etc....so is Hopkins it would seem....

Re the ritalin - I looked it up guys not for those with liver problems - she's got liver mets...

I don't know what to....if I knew this was one week, then OK, we know this is her "on" week and so be it...but I feel like the...light in here eyes is getting further and further away....

[Matthew]

Guys, waw4, usually a friend of hers takes her to the treatment Mondays, and we do bloodwork either the Fri or Thurs before infusion Monday. Doc never says what her numbers are, but I'm going to get the report from the lab (there are many patients who hang out there until they get their paper!!!!) He always says her #'s are fine...she's always (all her life) been slightly anemic, and she had had transfusions while in the hospital in Jan and Feb because of this, but not a peep out of docs re needing anything...

I had a long chat with the onc's nurse today (very slow day there today) and I asked if her doc is REALLY against supplements, and she said, oh yes he is...

So what I do is on her off weeks I put a crushed regular woman's vitamin into her protein shake...that's it...just a regular vitamin...

I'm not sure why they're so hesitant to address the fatigue...I mean now her quality of life is...not much...

I know they REALLY don't want to stress her liver with anything, but would indeed B12 hurt??

[waw4]

...she's always (all her life) been slightly anemic, and she had had transfusions while in the hospital in Jan and Feb because of this, but not a peep out of docs re needing anything...

This history would make me very suspicious of anemia for 2 reasons:
1) Transfusions for anemia are not given unless iron levels are very low - so low as to be worth the risk of a transfusion; and,
2) Chemo effects the bone marrow and the production of red blood cells - which is partly why they draw blood to test anyway.

However, the test for iron deficiency is not normally part of the Complete Blood Count - you have to ask for it and insurance may not pay for it (@$15 or something small). If she is not currently being tested for iron related anemia, how would anyone know if she had iron related anemia or not?

I would definitely request her iron levels be tested at the next blood draw. If needed, I doubt her oncologist would object to iron supplements.

I requested printouts of all my blood test results, put them in a spreadsheet and tracked them from my hospital stay to end of chemo. The presence or absence of trends can be informative.

[Matthew]

THANKS! We don't do anything of course without onc's ok - but you're right - getting hard #'s unless you ask, you don't get around here...I wish I had posted this yesterday...I would have asked them to do new bloodwork today!'

Oh and because of her liver situation guys they do test her iron levels - in hospital they gave her so much iron, her iron levels were through the roof!!!

[SkiFletch]

What you're describing is not normal Matthew, although it's not out of the realm of possibility. It's interesting on the steroid issue. Some onc's are very Pro, and some are very No. The answer to your trouble lies in determining the source of the fatigue. There are a few sources with someone on chemo. First would be poor hemoglobin. Although that usually also manifest's itself with shortness of breath in addition to the fatigue. Low B12 is possible, as is just general response to chemotherapy. There are also a small handful of folks who are genetically intolerant of 5FU which produces usually extreme fatigue and more-than-normal mouth sores, GI upset, and sometimes allergic-like responses to the drug. It might be worth asking the oncologist about that as there is a test for 5FU inolerance. Lastly, I'm a firm believer that fatigue especially (but other symptoms as well) can be highly related to overall mental health. I don't mean to insinuate that your wife is crazy, but it's very possible that she's depressed about her diagnosis/condition/treatment/future/whatever and that depression is magnifying what might be "normal" levels of fatigue. Tending to her mental health might really pick her up out of that fatigue basement. It's certainly worth a try.

One more thing before I go. I'm sure others will remember possibilities I haven't. It's even more likely that the cause of her problem is a combination of one of many sources. Fatigue is very complex and not something you can always put a quick bandaid on, but should be CONSTANTLY addressed with her oncologist. And if her onc blows her off when she's experiencing truly debilitating fatigue... Find a new one. She shouldn't have to suffer like you describe.

Edit, one note about Iron/anemia/etc. The MOST important number to look for is Hemoglobin. That should ideally be above 10, but more like 11-13 for a woman. You CAN have high free-iron in the blood but low hemoglobin. It takes a while for the body to produce RBC and "catch up" to the supplements, especially if they're not the most bio-available.

[Matthew]

Thanks so much SKI!!!!!! I am 1000% certain that she is depressed without a doubt - period.

Also, if this doesn't improve by Monday, I'm going to take her in for bloodwork - I kick myself utterly for not thinking about this and not asking for you all's advice - they were EMPTY today - it would have been no big deal...!

[helen098]

My fatigue just got worst as my chemo went along
I could sleep 11 hours and wake up tired
It stinks but she can try naps during the day, keep hydrated and some light exercise
All can help a little..but for me the only thing that helped was finishing chemo

You and your wife hang in there

[SoConfused]

Fatigue does get worse as your progress along the course of treatment ... some fatigue is expected from the onset. Others have offered valid possibilities and great suggestions. I just wanted to add that perhaps depression is a contributing factor? Sometimes, our emotions do get the best of us and given that your wife has been through a LOT in a fairly short period of time, she may simply be overwhelmed ... withdrawn, distressed and the walls are closing in, so it's easier to shut off what surrounds us than to deal.

[Matthew]

Thank you all!!! I think so confused you're absolutely right even though she denies it.... she won't even admit it as a possibility.. .I just don't know how I'm going to keep her hydrated until Monday... she gets very emotional and leaves the room....

I wish she did Facebook but all she does is stare at the floor... .

[DanInMN]

I don't think I can take it if the fatigue is going to get worse. I'd almost rather risk ending chemo. I feel like I am awake in a coffin burred 6 feet under. I know this is foolish, but I feel so desperate.

[Matthew]

Dan I think that's how she probably feels BUT you also have a great chance at beating this beast!