Fatigue Advice

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TrojanGirlie
Posts: 16
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Fatigue Advice

Postby TrojanGirlie » Thu Jul 06, 2017 12:01 am

Hi,
My husband is on his second cycle of Keytruda and XELOX. He also developed an abscess that he had to have surgically drained two weeks ago and was put on Cipro and Flagyl antibiotics fir the next two months. With the neuropathy and nausea, he seems to be becoming increasingly frustrated and depressed. The fatigue is what really seems to be bothering him the most. He has decided to take medical leave from work because he can't really stay awake anymore. He probably is awake only for a 2-3 hour period per day. He has been taking some percocet for pain, but only at night. We just lost our oncologist and we have a new one we can't meet with until the end of July so I just was wondering is this type of fatigue normal? Any suggestions for how to improve it?

Thank you so much for your advice. This message board offers a nice ray of sunshine on our gloomy days.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-now
Lynch Syndrome positive and MSI-high

jhocno197
Posts: 803
Joined: Mon May 11, 2015 9:33 pm

Re: Fatigue Advice

Postby jhocno197 » Thu Jul 06, 2017 9:41 am

I suggest consulting with palliative care (NOT the same as hospice). I know sometimes people are given Ritalin to combat the excessive fatigue.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

Lee
Posts: 5076
Joined: Sun Apr 16, 2006 4:09 pm

Re: Fatigue Advice

Postby Lee » Thu Jul 06, 2017 10:59 am

It sure sounds like excessive fatigue. I'm not sure if this is going to help, butt will throw it out there just incase it does help. If he can, maybe some light exercise like walking. Some form of exercise is suppose to help give you energy while on chemo. But I believe jhocno probably has the best advice.

Hope it gets better for him soon.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Brearmstrong
Posts: 19
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Fatigue Advice

Postby Brearmstrong » Thu Jul 06, 2017 11:59 am

I am in the middle of FOLFOX treatments- 6 more to go, so not the same exact meds but when I'm feeling my worse, I drag myself out of bed every few hours and take a mile walk. It makes a HUGE difference for me in that it tends to shorten the days of fatigue and gets me out of my fog for a bit. It's so tempting to just sleep the day away but I really think if you could convince him to keep moving, even if just for a short walk to start, it might help! He also might be dehydrated which will make it worse. Hope he's feeling better soon!
45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations- just bad luck- marathon runner, clean diet, non smoker, no family history
Lap hemi
FOLFOX started April 2017 but reduced both agents after round 2, crashing WBC even with nuelasta shots. Clean CT scan July 2017 watching one small lung nodule

Lee
Posts: 5076
Joined: Sun Apr 16, 2006 4:09 pm

Re: Fatigue Advice

Postby Lee » Thu Jul 06, 2017 2:08 pm

If he walk, it might also help with some of the depression.

Thinking of you both

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
LPL
Posts: 282
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Fatigue Advice

Postby LPL » Thu Jul 06, 2017 5:50 pm

Hi TrojanGirlie,

I just want to ask if your husbands extreme fatigue & other symptoms you are worried about, might have started after he began to take the Cipro medication (and the Percocet) ?

When many things, medications/treatments are happening at the same time it might be hard to know from what symptoms comes? (My DH got bad symptoms from the steroids and we thought it was 'normal' feeling bad from chemo.)

Could it be side effects of Cipro = Ciprofloxacin or a combination of Cipro + Percocet?

Here below are some papers I have read:

FDA's Black Box warning for fluoroquinolones https://www.fda.gov/Drugs/DrugSafety/ucm511530.htm
Unusual tiredness is mentioned as a Side effect of Ciprofloxacin https://medlineplus.gov/druginfo/meds/a688016.html
Ciprofloxacin can be found under "Mayor Drug interactions" with Percocet
https://www.drugs.com/drug-interactions ... -1135.html
Last edited by LPL on Fri Jul 07, 2017 2:17 am, edited 1 time in total.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mhf1986
Posts: 42
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Fatigue Advice

Postby mhf1986 » Thu Jul 06, 2017 8:30 pm

Here's another vote for walking! A buddy at his work told my DH that helped him thru chemo and DH started. Just down to the mailbox to start 7 months ago after surgery and now several miles a day. Sunshine helps too. We take a walk before dinner and after dinner together and see all the neighborhood puppies.

Is your DH on Zofran for nausea? I found that can send mine into nap time and depression quicker than anything. I read something about it affecting seratonin levels. I am not a nurse or MD so don't take this as gospel, just one observation.

Hugs,
Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastian added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: liver stable, CEA 15, OX discontinued due to neuropathy
8/17: liver stable, CEA 14, vitamin D added
9/17: CEA 21

User avatar
CRguy
Posts: 9166
Joined: Sun Feb 10, 2008 6:00 pm

Re: Fatigue Advice

Postby CRguy » Fri Jul 07, 2017 10:06 pm

TrojanGirlie wrote:Any suggestions for how to improve it?


Maintain good hydration as a basic comment.

Also don't know about labs and blood work BUTT he maybe needs to have these checked :
RBC / WBC, iron / ferritin levels, blood glucose, / HgbA1C, electrolytes and maybe some cortisols ??????

The drug side effects are certainly worthy of consideration ... BUTT if some sleuthing by the docs into other causes is not done
well, then they won't find anything will they :twisted:

best wishes
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

KElizabeth
Posts: 379
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Fatigue Advice

Postby KElizabeth » Sat Jul 08, 2017 12:41 am

I've been battling an abcess that won't heal also. When it gets funky the fatigue is incredible. The only other time in my life when I've been so tired was when I was infected with a drug resistant hospital bug after childbirth. I can tell now within hours if the abcess is filling up.
I never sleep sitting except during infusion but I've been falling asleep at my desk or any chair now.
The chemo adds to the fatigue on certain days in the cycle and sleep is all I want then.
I have no real solution to suggest but you might seek a second opinion on the abcess. Maybe there is more than one? Maybe the one you know about is just not draining well enough. All the antibiotic in the hospital won't help unless you get the infected pus to stop pooling.
Before I was properly diagnosed I was admitted for a few nights because the doctors were not trained to recognize and find anal abscesses. They feared systemic infection due to my fever and heart rate so they put me on four different antibiotics. I went home on two and the pain, sweating, and fatigue returned in 24 hours. I found a colorectal surgeon who rocks and just had another drain installed in my little friend again today.
Female age 38- ,two kids, age eleven and fifteen.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFURI plus Avastin - Sept, 2015 - current
Art therapy January 2015 to current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA:: 10.2 December, 2016
CEA: 40.3 January, 2017
CEA: 16.4 March 2017
Facebook.com/natureinink

User avatar
CRguy
Posts: 9166
Joined: Sun Feb 10, 2008 6:00 pm

Re: Fatigue Advice

Postby CRguy » Sat Jul 08, 2017 1:10 am

EXACTLY why I would push for more bloods and a deeper look into ...
WHY ??????....

It is well known that chronic inflammation and /or infection will produce their own "anemia" type syndrome by supressing the bone marrow

SO ... you have a major infection ... AND your body is going anemic = YOU HAVE NO ENERGY TO START WITH .....AND NO RESERVES

IF NOBODY IS LOOKING AT BLOOD RESULTS ... ain't gonna get found !!!!!!!!!!!!!!

I am also a veteran of post op abscess infection
(( and treated thousands of vet patients for systemic infections ... :twisted: ))

NEVER had any other life experience as severe as that
Had "rambocillin" and IV supports for a few days ... then started to feel better
Gladly mine was treated ASAP and short lived .... BUTT still it was a major occurence in my healing process.

KEEP pushing the docs for answers and curative measures
BE the squeaky wheel until YOU are back on your game

WORD !

CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

TrojanGirlie
Posts: 16
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Fatigue Advice

Postby TrojanGirlie » Sat Jul 08, 2017 2:55 am

Thank you all for your responses.
Jhocno197: We have been meeting with palliative care. They have been amazing!!! They are so supportive and accessible, that it really makes us feel like someone actually cares about us.

Lee and Brearmstrong: I will definitely work on getting him to start walking. He is still working right now, but I am hoping once he goes on Leave of Absence, he will work in some light exercise time.

LPL: Thank you so much for the links. That information definitely is concerning because he is showing some signs of those drug interactions. I also found it interesting that the colorectal surgeon who recommended Cipro and Flagyl told us that the oncologist might look at the antibiotics and question the choices, but to tell the oncologist that she, the surgeon, is the expert and he shouldn't be questioning her. It was kind of an awkward moment, but it does make me wonder why she was becoming so defensive about the antibiotic combo.

Mhf1986: He is on Zofran and Compazine, but still has nausea and vomiting. Mainly first thing in the morning and right at night. I will ask the oncologist about the effect those might be having on his energy levels, or possibly adjusting the nausea meds since they don't seem to be working anyway.

CRGuy: He is anemic. Not as much as he has been in the past. He used to have iron given to him in an IV, but they stopped that once he started the Keytruda and XELOX treatment plan. I might bring that up again with the oncologist. Some of those other lab tests, he has not had done so I will also mention that to our oncologist as well. Having to be the squeaky wheel is very frustrating, but necessary. We are between oncologists right now and I feel like we are getting lost in the shuffle. Our old oncologist transferred to a different site and will no longer help us even remotely because he was upset that we pushed for Keytruda instead of doing just FOLFOX, the covering oncologist won't cover anything and just tells us we need to wait until we meet the new oncologist, who we are told has no availability until the end of July. We've been trying to get a Leave of Absence letter written for the last 2 weeks. I've filed 2 grievances and today palliative care called us to let us know that they would write us a temporary leave note until we can meet with the new oncologist. It's been almost 2.5 months since we have had an oncology appointment, which seems excessive. But I just gotta keep being pushy.

KElizabeth: I'm so sorry to hear you are also having to deal with an abcess. I hope you will begin to have better luck with the healing. I will look into getting a second opinion for my husband's abcess.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-now
Lynch Syndrome positive and MSI-high

MissMolly
Posts: 381
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Fatigue Advice

Postby MissMolly » Sat Jul 08, 2017 8:01 am

Trojan girl:
That your husband is on an immunotherapy drug gives possibility that the fatigue is an affect of a hyper-immune response - an auto-immune body-on-body response.

Physicians are not always alert to possibly serious body-on-body reactions in that the field of immunotherapy is so new. I would be strongly advocating that a physician explore for an auto-immune (body-in-body) response that is manifesting as profound fatigue. Make no mistake, an unleashed immune system that fights against the body can be serious. I would act in this possibility ASAP.

The other possibility is a mantra that I have repeated on this forum re: low serum/blood cortisol due to pituitary suppression that can be caused by IV premedication dexamethasone (a corticosteroid). Long-term use of opiates/narcotics also contributes to the development of secondary adrenal insufficiency. The fatigue of secondary adrenal insufficiency is deep and not a fatigue that is relieved by rest. It is a profound and pervasive fatigue.

A morning 8 am baseline cortisol lower than 10 ug/dl would be suspicious and/or a morning ACTH lower than 12 ug/dl would be suspicious for secondary adrenal insufficiency. It is important that the blood draw be done between 7-8 am, as your husband's lab result will be compared to statistical expected norms that correlate to the morning.

Cortisol levels in the blood vary during a 24 hour day in a diurnal pattern that regulates the body's wake and sleep cycle (among other functions). Cortisol does not have a fixed serum level, thus the need to have diagnostic testing during a morning window between 7-8 am. Cortisol is a life essential hormone that is needed by every cell in the body. Every cell.

Flagyl and Cipro are wise choices by the surgeon, despite possible conflict with your husband's particular chemotherapy.

Both flagyl and Cipro are specific to bacterial intruders to the colon and urinary tract. They are both first line antibiotic choices for bowls and urinary based infections. Flagyl, in particular, has neuro-toxic effects that can be troubling (ex. Non-intentional tremor, tardy diskinesia) if taken at high doses or for long periods of time. Augmentin is another colon specific antibiotic that you can keep in mind to discuss with the surgeon. I have been on all 3 at one time or another for a residual abscess from surgery.

Use your Palliative Care team to get started on the necessary diagnostic tests. I am on Palliative Care and the MD who oversees my care is my contact person for most of my health needs. Palliative Care is Whole person care. I am glad that you have access to its services.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

stomper71
Posts: 1
Joined: Fri Jul 14, 2017 8:10 pm

Re: Fatigue Advice

Postby stomper71 » Fri Jul 14, 2017 9:02 pm

My husband has stage IV colon met to the peritoneum his on 5FU and his blood pressure was getting out of control so they started upping his Metropolol to 100mg twice a day. His fatigue got so bad he could not get up and absolutely anything. We went to the cardiologist and he decreased the medication to half the dose and it has decreased the fatigue incredibly. I would check any medication changes or the side effects of the medications your taking for other problems.

I hope it helps.

TrojanGirlie
Posts: 16
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Fatigue Advice

Postby TrojanGirlie » Sat Jul 15, 2017 3:48 pm

Thank you for all the suggestions. We met with our covering oncologist today since our old oncologist was just promoted to a new position at a different hospital and the new oncologist has not begun yet. We had to fight to get an appointment today because my husband wants to begin his leave of absence from work, but our old oncologist and the covering oncologist were refusing to sign the paperwork. Went in today to meet the covering oncologist. He said he still wouldn't sign the leave of absence paperwork because he doesn't know what the procedure is up in our region(Lancaster/Palmdale). He only knows the process for his region (Los Angeles). Told us he has never seen the XELOX and Keytruda treatment protocol and is a little confused as to why my husband is on it if he is already Stage 4 with mets to liver and lymph nodes. Said he wouldn't order anymore tests or adjust medication because fatigue and vomiting are just "that's what chemo does to you." Told us he didn't understand why we would think surgery would ever be an option at Stage 4 and said the cancer is incurable and we should focus on being comfortable until it's over. We asked for a referral to a clinic in Woodland Hills (recommended by UCLA) and he told us he wasn't authorized to do that. I feel like it was a waste of an appointment. We got nothing done and just had to deal with all of this negativity. I already filed two grievances (one verbal and one written to have documentation) with the hospital for not being able to get the leave of absence note signed. This seems so frustrating and now I'm wondering if we are being silly to think that there is a possibility he will ever be cancer free.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-now
Lynch Syndrome positive and MSI-high

veckon
Posts: 84
Joined: Thu Jul 27, 2017 7:44 am

Re: Fatigue Advice

Postby veckon » Mon Jul 31, 2017 6:59 am

TrojanGirlie wrote:Thank you for all the suggestions. We met with our covering oncologist today since our old oncologist was just promoted to a new position at a different hospital and the new oncologist has not begun yet. We had to fight to get an appointment today because my husband wants to begin his leave of absence from work, but our old oncologist and the covering oncologist were refusing to sign the paperwork. Went in today to meet the covering oncologist. He said he still wouldn't sign the leave of absence paperwork because he doesn't know what the procedure is up in our region(Lancaster/Palmdale). He only knows the process for his region (Los Angeles). Told us he has never seen the XELOX and Keytruda treatment protocol and is a little confused as to why my husband is on it if he is already Stage 4 with mets to liver and lymph nodes. Said he wouldn't order anymore tests or adjust medication because fatigue and vomiting are just "that's what chemo does to you." Told us he didn't understand why we would think surgery would ever be an option at Stage 4 and said the cancer is incurable and we should focus on being comfortable until it's over. We asked for a referral to a clinic in Woodland Hills (recommended by UCLA) and he told us he wasn't authorized to do that. I feel like it was a waste of an appointment. We got nothing done and just had to deal with all of this negativity. I already filed two grievances (one verbal and one written to have documentation) with the hospital for not being able to get the leave of absence note signed. This seems so frustrating and now I'm wondering if we are being silly to think that there is a possibility he will ever be cancer free.


Reading this makes me think we need to get your husband to somewhere like Memorial Sloan Kettering or MD Anderson for surgical evaluation. I also was told originally that surgery was pointless when stage 4, but once I met my current oncologist at MSK he ignored that and instead consulted with my liver surgeon to evaluate my case. He was confident he could do it and be able to remove all visible disease. If he didn’t discover peritoneal spread while I was on the operating table I am confident I’d be cured by now. They have amazing surgeons on staff who can do things other doctors will say is impossible.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering


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