crushing fatigue from xelox...any way to prevent/aleviate?

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cmewrrie
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Joined: Fri Mar 13, 2015 9:03 pm

crushing fatigue from xelox...any way to prevent/aleviate?

Postby cmewrrie » Tue Oct 06, 2015 6:26 pm

DH is 10 days into cycle one of xelox. the biggest issue he is still having is terrible fatigue...only able to be awake 6 hours or so a day and can barely get out of bed. We see the oncologist tomorrow to discuss his current symptoms and plan next cycle. I am wondering if there are any pre-meds that we should inquire about that could help prevent the fatigue or any supplements, meds, etc. that might help him feel at least a bit more human during the cycle.

we expected fatigue but this is way worse and lasting much longer than we expected so I don't know if its just a variation of normal and/or if there are things we should bring up with the onc to try...I am even open to nutritional supplements, vitamins, etc. just want to clear them with the doc.
wife of DH (04/24/15 dx: age 43) Low RC T3N0M0 stage 2
4/27/15 clear CT
5/18 - 6/25 chemo/rad (ended xeloda on 6/19 due to side effects)
8/12/15 - ULAR scheduled - APR performed due to location - path showed T1N0M0
9/25 begin 5 rounds of xelox
10/30/15 - switch to xeloda only due to allergic reaction
1/22/16- last xeloda!
3/27/16 - post treatment CT - clear except soft tissue presacral area (possibly scar tissue) CEA .5
4/20/16 - post treatment colonoscopy

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NZJay
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Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby NZJay » Tue Oct 06, 2015 7:25 pm

Is he taking any anti-nausea meds?
I was prescribed nozinan to fight my nausea, and found it gave me crippling fatigue as it acts on the central nervous system.
Basically, I ended up in a situation where I had to choose between fatigue and nausea; both being horrific.
Exercise (walking and weights) were the only things which helped me overall.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby cathy123 » Tue Oct 06, 2015 7:59 pm

I had much milder side effects - sorry he is having such a rough time. I will second Jay's advice about easy exercise - when I was dragging if I went out and took a walk I tended to feel quite a bit better after. But I think his reaction is pretty extreme for the first round so definitely look to the onc for help.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby Sams wife » Tue Oct 06, 2015 8:27 pm

Check his blood pressure? If he stands & get dizzy or BP is low he might be dehydrated?
My hubby's sodium got low. He hates tomatoes & nurses ended up making him drink a v8 a day. That was fun.
That Ativan does knock him on his butt. Is he on Prilosec or something that may help with nausea, so he doesn't have to take Ativan so much?
Just throwing out guesses here tho.
My hubby is on the one shot of 5fU a week. He is tired, tired today but BP was normal. I guess he is just tired. We will see tomorrow.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

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Jacques
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Location: Occitanie

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby Jacques » Wed Oct 07, 2015 3:50 am

I had the same "unexplained tiredness" problem when I was on adjuvant Xelox therapy but I didn't manage it very well and I suffered the consequences. Basically, I thought that the longer I slept during the day the faster my body would recover from the other side effects, but I think I was totally wrong. I developed severe dehydration, then kidney stones and a bladder stone and had to delay my next Xelox cycle until these problems resolved. I also missed a number of my meals and medication sessions and lost 20kg in just a few weeks. I also slept right through the filling up of my stoma bag several times, and it therefore burst while I was asleep, causing big messes in the bed.

Your DH is so lucky to have you there to help. You can help him right now by (1) making sure that he eats at least something twice a day and then takes his Xeloda pills 30 minutes after the morning and evening meals; (2) making sure that he drinks at least 8 glasses of electrolyte liquids (e.g., Gatorade, or Oral Rehydration Salts, etc.) each day. (Note: Drinking pure water doesn't help much if he is having severe diarrhea at the same time; the consumed liquids must already have electrolytes in them), (3) monitoring his colostomy bag activity for onset of severe diarrhea (DH may need to keep a log of the amount and type of output per day.); (4) making sure that he washes his mouth very well with good mouth wash each time he has a vomiting session, so as to avoid getting more mouth sores; (5) clipping his toenails short and filing them smooth so that he doesn't snag his toenails on the bedding when the Hand Foot Syndrome and the peripheral neuropathy set in at the same time.

As for what to eat, I don't know what to suggest, but I can give you a list of what I ate in order to regain some of my lost weight. (Note: be sure to check with doctor before trying any of these): Ripe avocados, macaroni with tuna and cheese, peanut butter, protein bars, ginger snaps, bananas, cooked oatmeal, canned sardines, canned mackerel, blueberry yoghurt smoothies.

As for suggestions for what to do next, you might want to discuss with the oncologist the possibility of reducing the doses of oxaliplatin and/or Xeloda. Right now DH is on 3 pills twice a day, which is 75% normal dose for adjuvant therapy Xelox for his body weight. You could ask if he could drop down to 2 pills twice a day, which would be 50% normal dose and which is the lowest Xeloda dose thought to be clinically effective.

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby Sams wife » Wed Oct 07, 2015 5:52 am

Hubby's nurse did mention a "shot" that might help fatigue. I'm assuming they meant B12. Idk. I wasn't back there with him. I asked if that was it & he said "I think".

I didn't think doc wanted him on vitamins but I guess they give them when needed I've seen them put magnesium in his drip. I guess we will be asking about it Friday. Good luck tomorrow
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby Nik Colon » Wed Oct 07, 2015 10:48 pm

One thing as far as meds is meds for adhd, I would recommend Ritalin over Adderall. I have known too many who abuse Adderall and from my knowledge it is more addictive. I was given Ritalin years ago but only tried it a few times, don't take cuz my anxiety, but it is known for giving energy. Sometimes Adderall is known as the "legal" meth. Other than that, which I don't personally take, I have not found anything, over many many years of fatigue, that has helped. But everyone is different, hope you find something that works for you. I sleep all the time and it sux!
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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cmewrrie
Posts: 168
Joined: Fri Mar 13, 2015 9:03 pm

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby cmewrrie » Thu Oct 08, 2015 9:08 am

Yesterday was much better...I think the nasty cold DH was fighting just added to the fatigue. Regardless, the oncologist (did say how much I love our oncologist?!) spent a good 45 minutes with us listening to the side effects, trying to help trouble shoot this bladder pain that won't resolve but seems to have nothing to do with chemo, securing an appointment with a urologist and explaining options.

His feeling is that since the tumor was significantly downgraded from t3 to t1 during chemo/rad and the surgeon aggressively removed everything possible, we could reduce the oxy to 80% next cycle. If that proves to be too much still, the remaining cycles will be xeloda only. I kind of hope the 80% I tolerable because I like to have that extra insurance but trust the doctors opinion so we will re-evaluate after next cycle.

Last day of cycle one...time to celebrate "vacation week"!
wife of DH (04/24/15 dx: age 43) Low RC T3N0M0 stage 2
4/27/15 clear CT
5/18 - 6/25 chemo/rad (ended xeloda on 6/19 due to side effects)
8/12/15 - ULAR scheduled - APR performed due to location - path showed T1N0M0
9/25 begin 5 rounds of xelox
10/30/15 - switch to xeloda only due to allergic reaction
1/22/16- last xeloda!
3/27/16 - post treatment CT - clear except soft tissue presacral area (possibly scar tissue) CEA .5
4/20/16 - post treatment colonoscopy

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby Sams wife » Thu Oct 08, 2015 1:42 pm

Hopefully 80% goes much better. I finally noticed that t1 in your signature just the other day! Hope y'all have a good "off" week
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

RickWhosoever
Posts: 47
Joined: Sun Sep 27, 2015 11:47 am

Re: crushing fatigue from xelox...any way to prevent/aleviate?

Postby RickWhosoever » Thu Oct 08, 2015 9:34 pm

The biggest factor that I found in fighting fatigue was to eat as much as possible. Now I used to be a 265 lb weightlifter so I know a thing or two about eating. Whenever I was supposed to eat I simply chose the most calorie dense option. I didn't load up on junk food but ate whatever I wanted. Also eating every few hours seemed to keep nausea at bay.
Jan '15 Dx Stage 2 Rectal Cancer
5 weeks chemo/radiation
May '15 LAR
Oct '15 Finished 8 cycles of Oxi & Xeloda
Now - trying to live life to its fullest


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