Need help....for my folks.

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Daddy's girl
Posts: 13
Joined: Wed Apr 29, 2015 8:21 pm

Need help....for my folks.

Postby Daddy's girl » Mon Mar 27, 2017 4:31 pm

You folks are so helpful and I need some advice or simply your thoughts. I haven't been on here for quite some time now, but another colon surgery has us back to "colon focus". Daddy is still holding up extremely well. We've had two colon surgeries now, an issue with a clot in his port, way too much blood thinner for said clot (oncologist prescribed before she spoke to surgeon..stupid!) which prompted an ER visit and a 30 day wait to have a new port installed and now we are dealing with new chemo cocktail. Phew! Anyway, I think I have this cocktail treatment correct: Two week intervals of Oxaliplatin with a "splash" of Avastin for good measure. This is given in the office via his port for about 3-4 hours. Then he goes home with a 5-FU pump for 48 hours. Once the pump is removed, back to the office the following day for a white blood cell booster shot. It's quite time consuming....for both him and my Mother.

Here's the problem now: Although his CEA number dropped 22 points last bloodwork (YAY!), he's having severe and sometimes explosive diarrhea. He's eating Immodium AD like candy at times to get it to stop. Mom is exhausted from it all too, but still very supportive. Any suggestions as to foods he should avoid or those he should consume to alleviate this problem? As you might expect, he's lost some weight and can't seem to get it back and is fearful of eating anything sometimes. And this diarrhea isn't helping with weight gain. I've read that Chobani yogurt is good since it deals with probiotics. I've also learned anything "white" like potatoes, rice, white bread and saltines. Carbs...lots of carbs. What do you all say/think? We are scheduled to go to next round tomorrow, and I'd like to ask any questions y'all may offer. I feel so stupid at times, but I can't really help with this latest issue (it would be embarrassing) so I advise from afar...thanks in advance for all your help...you don't know how much I appreciate it.
Dad's bowel resection 4/10/15
Stage IIIC; Chemo "cocktail" to start 5/15
Canceled due to PET scan results 5/15
Lung Biopsy 5/21-lung surgery 6/4/15
Started Avastin 7/15 for lungs...ignore colon
Colon surgery 11/16 again.. :(
Clot in port..new port installed 2/17
5-FU pump, Avastin, Oxaliplatin started 2/17...and here we go again.

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Need help....for my folks.

Postby BeansMama » Mon Mar 27, 2017 8:25 pm

He can try the BRAT diet, I have heard like you said that carbs can help. Have you talked to his oncologist? He may need something stronger than immodium to stop it. Unfortunately diarrhea is a common side effect with chemo. Always bring up problematic side effects with your onc.

Oh and edited to add, rather than going back to the doc for the neulasta / neupogen (WBC boosting shots) if they are willing your mom can give them to him at home or he can do them himself. It avoids another trip to the doctors office. I used to do mine myself at home. They may have to come from a specialty pharmacy (my insurance required it) but they ship them to your home packed in ice as they need to be refrigerated.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Need help....for my folks.

Postby Stewsbetty » Tue Mar 28, 2017 1:02 am

I am sorry to hear that your dad is having a hard time. From what I learned from the nurses and dr. it is the 5FU that is the major cause of the diarrhea. I was not able to tolerate the full dose (severely dehydrated and in hospital for a week). So they cut the dose to 3/4 and it was much more manageable for me. I would only have 3-4 days that I needed to be taking imodium. Maybe talk to the oncologist about the possibility of a lower dose. I also made a concerted effort to be drinking lots of water. I put an app on my phone for tracking my fluid intake.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Need help....for my folks.

Postby Deb m » Tue Mar 28, 2017 8:35 am

my husband had very bad diarrhea during his chemo days. There are different prescription meds they can give you that are much stronger than Imodium. They worked very good for my husband. Just ask the oncologist, it's pretty common.

deb m

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: Need help....for my folks.

Postby Sams wife » Thu Mar 30, 2017 4:43 pm

I was gonna say brat diet but when Betty mentioned 5fu, that is what happened with my husband. They reduced some & he got constipated. So they moved it back up.

My husband was having cramps as soon as he ate & someone told me to watch out for folic acid. I think it was lee or painintheass. 5fu is folic acid I think. But we were buying cereal with 100% in it. It wasn't the milk, it was the cereal. But he also ended up with thrush around the same time. He was 115 lbs by the time they put him on iv antibiotics. Watch out for thrush!! That pretty much stopped diarrhea immediately
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

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Need help....for my folks.

Postby aja1121 » Fri Mar 31, 2017 11:11 am

Have him ask his oncologist about Lomotil. During my husband's worst episodes of diarrhea, alternating Lomotil and Imodium helped a lot...
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died


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