Kinda O/T, Kinda not - Nutrition

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sjring
Posts: 181
Joined: Mon Jun 30, 2014 3:16 pm
Location: Philadelphia, PA

Kinda O/T, Kinda not - Nutrition

Postby sjring » Fri Jan 01, 2016 8:38 pm

I've had a bit of a rough go of things over the past 6 weeks or so.

It started in Mid-November when I suffered a gallstone induced attack of pancreatitis that landed me in the local hospital for a week. Initially they were very hip on removing my gallbladder but once I spoke with the local hospital GI about the cancer and other complicating factors, he agreed with me that I should consult my oncology team at the major cancer center/hospital I regularly treat at. When I was discharged from the local hospital, I was still having a fair amount of pain but was able to hold down sufficient food (according to them) to be discharged, which was fine by me. In reality my diet was extremely limited to soups, Jell-O and maybe a turkey sandwich or some sliced chicken breast.

I followed up with my oncologist and a member of the surgical team she is affiliated with. Part of the issue being that the pain I have been experiencing was not necessarily correlating with the gallbladder or where MRI was showing the cancer to be. So the plan we came up with was to remove the gall bladder and attempt to repair a hernia behind my navel that MRI showed contained a small met. We had to delay surgery a few more weeks to give chemo a chance to wash out of my system, and I was able to largely maintain that limited diet and I lost quite a bit of weight over that 1 month period or so.

Surgery turned out to be more complicated than initially thought. The gallbladder was able to come out laproscopically, but it was more inflamed than they thought and some bile spilled during the procedure that required quite a bit of clean-up. The hernia was more of an open procedure (21 CM incision with 24 staples) and the "met" that the MRI showed hiding in there was in actuality an 8 CM tumor. The good news out of this is at least there is a tissue sample large enough to go biomarker and genetic testing on that we were unable to do with the samples when I was first diagnosed. The bad news is that they saw significant more metastatic activity on the abdominal wall and liver than MRI was showing.

Recovery is also taking longer than expected, in part because I'm still having trouble tolerating food.

Sorry for the long set-up but we're getting to the crux of my question.

At this point they want me to get protein and calories in anyway I can. I've never been particularly able to handle Ensure, Boost, etc. Even the lactose free versions cause considerable gas and bloating. I've tried Carnation instant breakfast using Lactaid milk to mix it with essentially the same effect. In fact today it's made me so unsettled, I've had trouble even eating broth. The surgeon is concerned about my strength to be able to resume chemo in the next 2 weeks or so.

Does anyone know of a brand of supplemental shake that does not have any milk solids (not just lactose free)? Or do you have recipes for smoothies or something similar (I seem to be ok with yogurt) that you like, High Protein, low-ish sugar (Though at this point I'll sacrifice glycemic control somewhat to get something I can tolerate)?

Thanks all, and happy new year.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.

peanut_8
Posts: 2340
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Re: Kinda O/T, Kinda not - Nutrition

Postby peanut_8 » Fri Jan 01, 2016 8:59 pm

Hi sjring,

Sorry you are having problems.

I have made my own yogurt for quite a while now. It's pretty easy, and I can decide what kind of milk to use and if I want to add sugar.
I usually use whole milk, as the yogurt will be thicker, and stevia for sweeter. I did get some lactose-free milk at Costco on my last visit, and it makes a nice yogurt.
The yogourmet electric yogurt maker is the model I use. It's available on Amazon...http://www.amazon.com/Yogourmet-104-Ele ... =yogourmet. They have extra containers available as well, so I can always have yogurt. The longer you process the yogurt, the tangier it gets. I usually let mine go overnight.

Smoothies are pretty tasty with home-made yogurt. I add kale, frozen bananas, frozen blueberries and strawberries. You can go in whatever direction you like. Sometimes, I even add canned beets for the pretty color, and extra nutrition.

If you have any questions feel free send a PM my way. A heavy duty blender is also a good investment IMO.

Best Wishes, peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

MissMolly
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Location: Portland, Ore

Re: Kinda O/T, Kinda not - Nutrition

Postby MissMolly » Fri Jan 01, 2016 10:28 pm

Orgain is a nutritional supplement drink that was actually created by a physician who, himself, was undergoing chemotherapy. I use Orgain myself and like the taste; it is quite palatable, not overly sweet. I share your distaste for Ensure and Boost.

www.orgain.com

In browsing the Orgain website, you will want to look specifically at the Vegan Orgain and the Almondmilk Orgain - given your stated sensitivity to milk-based protein. The original Orgain supplement drink has milk listed as an ingredient.

You can purchase directly from the Orgain website. Orgain is available through grocery stores like Whole Foods and Safeway. It is also available through Amazon.com.
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.

PainInTheAss
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Re: Kinda O/T, Kinda not - Nutrition

Postby PainInTheAss » Sat Jan 02, 2016 6:35 am

I completely lost my appetite after surgery and dropped 20 pounds pretty fast. My Onc was also concerned about me starting chemo and losing even more weight. My APR wound wasn't healing and it was just sucking the life out of me. One of my wound care nurses explained that healing requires lots of protein so I had to figure out some way to eat it with my limited appetite. I just couldn't eat anything dry like meat. It had to be really liquidy and I could only eat a few bites at a time. The nurse recommended some foods and I patched together a high protein diet with cottage cheese (with some fruit on top, like canned peaches), Greek yogurt (2 a day, Greek has way more protein than regular... I still eat it everyday), stouffer's Mac and cheese (tastes really great and loaded with protein... Read about it on this forum so I'm passing it along), carnation instant breakfast with protein powder, and I kept a large chocolate bar with a jar of peanut butter by my bed and just snacked on that throughout the day. You could add the protein powder to anything else, like oatmeal, if you don't want the carnation instant breakfast. I had a really hard time drinking that stuff, too. Campbell's bean and bacon soup is also easy to eat and high in protein. My wound started healing much faster when I loaded up on protein.
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

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dianetavegia
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Location: Villa Rica, Georgia

Re: Kinda O/T, Kinda not - Nutrition

Postby dianetavegia » Sat Jan 02, 2016 10:29 am

I asked my gastro for a gall bladder diet and his nurse printed out a list of things to avoid. That's been almost 7 years (had it removed halfway thru chemo) but if I eat too much dairy, I bloat up and have gas pains for days.

Feel better soon and I do hope they can find a good solution to all your concerns.

Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

bitchslapped
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Location: PNW/USA

Re: Kinda O/T, Kinda not - Nutrition

Postby bitchslapped » Sun Jan 03, 2016 1:41 pm

Nutrition is so On Topic here!

Just want to add that you might consider Lactaid Fast Act pills in addition to the Lactose milk. It might take both if you are highly sensitive. Have had to do just that for my family. You can get them anywhere, are OTC pills, also stores have their own brands. I'm not sure there is a protein drink out there that doesn't have some form of milk solid unless you go w/soy base. A couple of protein drinks out there (milk solids) that don't taste too bad as far as "after taste" in the chocolate flavor that are high protein (25 to 30 g)/low carb are Premier Protein (ready made) or ON (Optimum Nutrition) Whey Gold Standard, both sold @ Costco & elsewhere. However, I will mention that I don't mind the taste of Boost or Ensure.

https://www.lactaid.com/products/fast-act-caplets
http://www.premierprotein.com/
http://www.optimumnutrition.com/product ... p-201.html

Hope you find something that works for you.

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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

Re: Kinda O/T, Kinda not - Nutrition

Postby Sams wife » Sun Jan 03, 2016 8:46 pm

What about peanut butter & crackers? Tuna or chicken salad? After I started handing hubby small bites of high protein stuff, he started doing better. I think. Boiled eggs? Of course I had to be reminded on here :D

maybe you could mix banana or peanut butter with the yogurt. I tried for hubby but he is picky. He didn't like it. But I made it a month ago & he liked it!! He ate alot of oatmeal during the first chemo. Now go figure. He's not liking oatmeal to much.
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

Jachut
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Re: Kinda O/T, Kinda not - Nutrition

Postby Jachut » Mon Jan 04, 2016 3:07 am

I love coconut yogurt and that's pretty high in fat and calories, sigh. I've also been known to eat peanut butter or nutella by the spoonful. I wont drink any of that ensure or boost, yuck yuck yuck, disgusting. I'm not big ondrinking milk products at all but I would eat cheese, butter and sour cream on a baked potato too.

sjring
Posts: 181
Joined: Mon Jun 30, 2014 3:16 pm
Location: Philadelphia, PA

Re: Kinda O/T, Kinda not - Nutrition

Postby sjring » Wed Jan 06, 2016 8:39 pm

Thanks everyone for the suggestions.

@MissMolly, the Orgain Vegan did the trick. Finally something that's not causing really bad gas pain!

AS far as other suggestions, I'm starting to be able to get some things in and keep them down. Hopefully we can kickstart the recovery now.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.

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

Re: Kinda O/T, Kinda not - Nutrition

Postby Sams wife » Wed Jan 06, 2016 11:10 pm

sjring wrote:Thanks everyone for the suggestions.

@MissMolly, the Orgain Vegan did the trick. Finally something that's not causing really bad gas pain!

AS far as other suggestions, I'm starting to be able to get some things in and keep them down. Hopefully we can kickstart the recovery now.


Glad something is helping!
Have you ever tried whole rolled oats. Crock pot oats? Just checking. Anyone?
Might be better Gluetin free I think. I'm about to make them for my husband. He just doesn't know it yet :)
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

sjring
Posts: 181
Joined: Mon Jun 30, 2014 3:16 pm
Location: Philadelphia, PA

Re: Kinda O/T, Kinda not - Nutrition

Postby sjring » Fri Jan 08, 2016 4:32 pm

No I haven't. I do the Quaker Instant but with water instead of milk.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.


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