advice to help my DH heal (?)

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jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

advice to help my DH heal (?)

Postby jep » Thu Jun 29, 2017 6:22 am

Good morning. Just reaching out as I'm trying to do everything possible to help my DH heal after a bumpy post-op period. Surgery was on May 16 but he was back in the hospital with an infection, and still has 1 surgical drain as well as a center drain at his incision site. He has a small fistula in his colon, and is on a 12 hour TPN cycle at night. He is eating only liquid and smooth foods (yogurt, smooth soups, smoothies, etc.). Throughout all of this, he's lost about 25 pounds. He finished 1 antibiotic, but is still on 2 others which should be finished the day before chemo starts. I'm making him an appointment with a naturopathic doc for next week (to get advice on diet, supplements, etc.) . . . and he's been walking our road 4 times a day. His hemoglobin was down to 7.4, so he had a second blood transfusion on Tuesday and seems better after that. Has anyone else had experience with low hemoglobin? Any suggestions? I guess I'm just looking for any advice to help this fistula heal and to get rid of these drains in time for chemo start date (port goes in on July 14 and chemo begins July 17). Are we missing something? Is there something else we should be doing (or not doing) to help his body heal?
Thanks to all!
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

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Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: advice to help my DH heal (?)

Postby Maggie Nell » Thu Jun 29, 2017 6:48 am

I had a bumpy post-op and needed 2 units of blood because of very low haemoglobin. At this
stage, pushing to be fit for that deadline on July 14 is not allowing for the possibility that
the oncologist may defer the procedure to give his body more time to heal. Bed rest seems to be
indicated here, and lots of it, with reducing the walking to twice a day.

Hold off on the appointment with the naturopath which will be a form of interrogation with a
list of forbidden and allowed foods, for a few more weeks. It's too draining. This is a marathon
not a sprint - his body needs to just chill and not be pushed so hard for now.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: advice to help my DH heal (?)

Postby jep » Thu Jun 29, 2017 6:58 am

Thank you for your reply Maggie. I think you're right about holding off on the naturopathic doc. My DH doesn't have another appt until his drain check on July 6, so why rush it. He has definitely been resting his body quite a bit, but feels the need to walk frequently throughout the day. The docs seem to think it's good for him and his body, but I'll talk to him about not overdoing it. I appreciate your advice.
Thank you,
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

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

Re: advice to help my DH heal (?)

Postby aja1121 » Thu Jun 29, 2017 9:09 am

When my husband was healing from his APR surgery, the plastic surgeon was a big proponent of protein, and suggested supplementing with protein shakes once or twice a day. He said a high-protein diet helps encourage healing. It can be hard to find a shake that tastes good though...
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

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: advice to help my DH heal (?)

Postby Lee » Thu Jun 29, 2017 9:27 am

aja1121 wrote: the plastic surgeon was a big proponent of protein, and suggested supplementing with protein shakes once or twice a day. He said a high-protein diet helps encourage healing. It can be hard to find a shake that tastes good though...


That was going to be my recommendation, protein shakes. Hope he's doing better 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 - 16 years and counting!

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: advice to help my DH heal (?)

Postby Maggie Nell » Thu Jun 29, 2017 9:45 am

Me three with the protein shakes!

I had been flattened by low haemoglobin for so long that it was my 'normal', so after
receiving the transfusions, I was full of beans (and on drugs), while my body had just
undergone a traumatic experience and parts that were never designed to see the
light of day were still going: Bright Light, Bright Light! WTF....auggghhh 8)
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: advice to help my DH heal (?)

Postby MissMolly » Thu Jun 29, 2017 11:00 am

Speaking as a licensed physical therapist myself, I would encourage your husband to be up and walking as he tolerates - short distances with a comfortable frequency as opposed to long distance walks.

I do not support "bed rest" even with his recent low hemoglobin. Bed rest has more detrimental effects that benefits derived from resting the body. Deep vein thrombosis is a real threat with prolonged bed rest. I recall a 22 year old woman, with accompanying obesity, with a fractured ankle that I worked with. She adamantly refused to get out of bed. She developed a pulmonary embolism a week after the fracture and suffered a cardiac arrest and died.

Common sense prevails. Periods of rest tempered with gentle walking and stretching to maintain strength and pulmonary capacity.

Carnation Instant Breakfast is a good source of protein. It is tasty and palpable to people with taste aversions due to chemotherapy. Never underestimate the value of Carnation Instant Breakfast.

Another favorite protein supplement that I use is called Orgain. It is a nutritional supplement drink developed by a physician who himself was undergoing chemotherapy. Orgain is available on Amazon and is sold at natural-based grocery stores.

Best wishes,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: advice to help my DH heal (?)

Postby jep » Thu Jun 29, 2017 12:02 pm

Thank you for all of your thoughts/advice! We're definitely seeing the protein theme in these posts, and we will heed the advice. The Orgain on Amazon looks good, and I'm also going to try the Carnation Instant Breakfast (as my DH is looking to switch things up a bit). Thanks Karen for your thoughts on walking. My hubby is a mover, and I think it helps him mentaly as well. I don't think he's overdoing it, so as long as he listens to his body he should be good. Thanks for the well wishes and I'll post an update after our July 6th "drain check" appointment. We sooooooo want to get rid of that other surgical drain (as well as the bag at incision site). We'll just keep taking little steps and living one day at a time. Very glad I found this forum . . .
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: advice to help my DH heal (?)

Postby mhf1986 » Thu Jun 29, 2017 4:18 pm

While he wasn't excited about it, DH drank a brand called Premier Protein. Said it was tons better than Ensure. Different flavors too. Comes in a squarish box/bottle.

Gatorade makes one called Recover Chocolate Peanut Butter Shake that tasted like a milk shake if chilled. Comes in an orange bottle. The have vanilla and other flavors too.

You can also buy powdered milk and mix it into regular whole milk for a boost. Add a little chocolate syrup and a little decaf coffee, spray whipped cream on top and you've got mocha.

Or use that Carnation instant breakfast mix in chocolate flavor, add decaf coffee and whole milk for another kind of mocha.

DH lost 40 pounds with his surgery last October (thank you sepsis!). He's gained 20 back which is really plenty for now. He too loves to walk. I found it's pretty good for him if he stays hydrated.

Melissa
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

ashima2016
Posts: 36
Joined: Thu Dec 01, 2016 10:56 am

Re: advice to help my DH heal (?)

Postby ashima2016 » Fri Jun 30, 2017 11:39 am

I am not healthcare professional, but I've known this medicine for years, which is great for stopping bleeding (both internally and externally) and helping healing process. Here is a link from MSKCC. I would check with the oncologist first.

https://www.mskcc.org/cancer-care/integ ... nan-baiyao

And I agree with mhf, keeping hydrated is key for recovery.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: advice to help my DH heal (?)

Postby Lee » Tue Jul 04, 2017 5:12 pm

jep wrote:. . . . My hubby is a mover, and I think it helps him mentaly as well. I don't think he's overdoing it, so as long as he listens to his body he should be good.
jep


Hope DH is doing better. We lived in Atlanta, GA for a few years. We had only been in our house a few months when I came home and found someone had mowed our lawn. Front and back. I didn't think it was bad yet :shock: . Anyway a few hours later, my neighbor came over and confess it was her. Every so often she has of take care of her parents for several day up to a week. Guess it can be frustrating at times. This time especially so. Anyway, she found moving her lawn to be therapy and far cheaper then a therapist. When she finished her lawn, she was still venting and decided to mow our lawn. Was that okay with us? Could she do it again if she needed? I express my gratitude and told her she could mow our lawn any time and as often as she wanted/needed to.

Your above comment put a smile on my face 8) .

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 - 16 years and counting!

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: advice to help my DH heal (?)

Postby PainInTheAss » Tue Jul 04, 2017 5:50 pm

Yes, yes on the protein. I couldn't stand the taste of the protein shakes, so I just ate a lot of foods high in protein. Greek yogurt is very high in protein. Same with Stouffer's Mac and Cheese. I also kept peanut butter by the bedside and dipped chocolate in it. I could only eat a couple of bites at a time so I had to make them count. I ate cottage cheese also. And cheese sticks. Carnation instant breakfast is a good alternative to protein shakes. I tried adding protein powder to them, but couldn't stand the taste. I couldn't eat anything dry like meat, so these kinds of wet, easy to make foods were a staple for months after surgery. I lost a lot of weight also. Don't worry too much about that because it's great to eat fattening foods to gain it back later. Pie for breakfast, yum!
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: advice to help my DH heal (?)

Postby jep » Tue Jul 04, 2017 9:15 pm

Thank you guys! Yes, I'm quite happy to make my man smoothies with Haagen daazs ice cream (lots of fat)....I've been adding peanut butter and protein powder and he loves it! He's up to about 156, which is great! He's normally 175-180. He's eating scrambled eggs and yogurt...so happy with his progress. He's getting his personality back and he insisted that we grill tonight for the 4th (even though he's not eating that type of food). I was going to make pasta (lol)...love this man so much....drain check on Thursday...hoping that last surgical drain will finally come out! It's been almost 2 months since that intense surgery! Thanks to all for your thoughts and informed responses. I'm humbled by your knowledge . . . kind of on my own with this (mentally, at least). Holding it together for our girls.
XO
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: advice to help my DH heal (?)

Postby LPL » Wed Jul 05, 2017 6:33 am

Hi jep,
Good Luck on Thursday !
In case you want to read some reseach about "Protein and Healing" - here is a review from 2016
Benefits of post-operative oral protein supplementation in gastrointestinal surgery patients: A systematic review of clinical trials
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: advice to help my DH heal (?)

Postby mpbser » Wed Jul 05, 2017 8:09 am

These are all great comments and I don't have much to add except my experience with my husband and his recovery from anemia.

His Hg levels were 6.4 at the lowest level detected when he was in acute congestive heart failure Feb 28-Mar 1. This was the symptom that the ER doctors suspected a slow, unnoticed GI bleed and the initial symptoms that lead us to later discover his CC.

With this diagnosis of anemia, we made sure to have heme-based iron-rich food at least 1 to 2 times every week. Since husband can't stand all iron-rich food except red meat, shrimp, and chocolate, he usually chooses steak-ums. (He didn't learn about the chocolate as a high-iron food until mid-April.)

He was also diagnosed mid-March with diabetes, so his sugar consumption became very restricted because he choose diet control over metaformin or other pharmaceutical diabetes management methods.

His Hg improved a little within the first two weeks post-colonoscopy. On April 12th, the date of his 1st colonoscopy it was 7.3. That day, a mass in his colon was found. On April 14th, we learned that the mass in his colon was malignant.

As the person in our household who does all the grocery shopping and food preparation, I started to make sure that the meals I prepared were the healthiest possible that he would be happy with.

Around this time, he also began a regime of eating a piece of 85% high quality cacao dark chocolate daily.

On May 2nd, his Hg was an improved 9.3. We credit the improvement in his Hg to his lifestyle (very low sugar, iron-rich food, near total elimination of carcinogenic processed meats, etc) having an impact on the blood supply to the tumor and the consequent invasion/expansion/bleeding.

On May 18, the day before his left hemi-colectomy, his Hg was 9.5.

His levels during his post-op time in the hospital decreased due to blood loss due to surgery and very frequent blood draws. On day four after surgery, May 23, his Hg was 7.6.

By June 2, his Hg was back up to 9.6.

He hasn't had a CBC since then but his pallor is wonderful, his weight is great, and he's feeling better than he has in his entire adult life.

Personally, I am so glad that he did not rush into chemotherapy. He has complications, like another tumor (thank goodness non-cancerous!) in his colon that needs to get removed and a spot in his liver that *might* need ablation, that have put the adjuvant chemo on hold for the time being.

I hope this helps!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


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