A Noob with a Question

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
Phuong
Posts: 1496
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

A Noob with a Question

Postby Phuong » Tue Jun 15, 2010 2:27 pm

Not new to having cancer, just to this forum...

I am a 31 year old with stage IV met. I was originally diagnosed at stage IIC in the Summer of 2007 (my 3 year comes in 3 days) after being misdiagnosed with IBS. I've gone through radiation, chemo (folfox, folfiri, and irinotecan) and surgeries (rectal, liver, and lung). I went a year clean after the lung surgery, but recently found out that it's back in the liver. This time around they won't be able to resect just a piece of it - they're going to have to take the right lobe. I go in tomorrow for a portal vein embolization, then the big surgery is at the end of July. My question is - does anyone know how I can expect my diet to change following the big surgery? I haven't been able to find the answer anywhere and would like to start transitioning to my new diet in the next month so that it isn't a sudden change.

I am so happy to have found this forum. Like others here, I've become an honorary octagenarian! I look around treatment rooms and all I see are old people. In my first appointments all the doctors told me I'm too young to have this. More importantly to me though, like others here, I don't see this as a poor pity me campaign. I look healthy since I've had a year off therapies and people see me as a healthy person, but when I broke the news about the cancer being back in the liver, they suddenly saw me as sickly. People must think that I'm nuts, but in some ways I have seen this as a blessing. It has brought me so much closer to my family and that is always something I will appreciate. It has also made me realize how much we take for granted and it made me savor every aspect of life. My family, friends, and doctors are all amazed at my continued positive attitude, but they tell me it's contagious too. I'm so glad to have found a place where I'm not alone in that attitude!

~ Phuong

SkiFletch
Posts: 6361
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: A Noob with a Question

Postby SkiFletch » Tue Jun 15, 2010 5:21 pm

Well Phuong, sorry you have to be here, but as you already know, this is a great place. To answer your question, your diet shouldn't have to change much at all with only half a liver. You might have some issues if you eat too much fatty food, and you'll have to watch out for meds that are tougher on the liver like tylenol, but it really shouldn't affect your diet all that much. Things like really fatty fast foods should be avoided, and don't go eating whole sticks of butter, but you should be OK without much change.
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

User avatar
surfingon
Posts: 448
Joined: Mon Dec 28, 2009 4:11 pm

Re: A Noob with a Question

Postby surfingon » Tue Jun 15, 2010 5:56 pm

Hi Phuong,

My husband's eating habits were totally unaffected by his liver lobectomy. His docs told him he could eat whatever he wanted, just to take it easy with alcohol consumption. It wasn't the lobectomy itself that caused changes in his diet, it was the Coumadin they put him on after a pulmonary embolism while recovering from the lobectomy...

Best wishes for a successful surgery and a speedy recovery.
caregiver to husband John
Stage III CC 3-05
liver+ colon resect Nov '06
FolfoxA , FolfiriA
7 liver RFA's, 1 lung RFA
died April 29, 2009
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com

User avatar
CRguy
Posts: 10234
Joined: Sun Feb 10, 2008 6:00 pm

Re: A Noob with a Question

Postby CRguy » Tue Jun 15, 2010 6:08 pm

I second that !

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: A Noob with a Question

Postby dianne052506 » Tue Jun 15, 2010 7:01 pm

When I had my liver resection, nobody mentioned that they were also removing my gall bladder. Apparently the attitude is that you don't need it, and it's just in the way when they are doing the surgery. Ask if that is the case for your surgery. If so, a low fat diet would certainly help.

With all you've been through, you probably know what you can and can't tolerate already.

Best of luck with your surgery.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

User avatar
tmm903
Posts: 137
Joined: Tue May 11, 2010 10:23 am
Facebook Username: Tracy Green Mariano
Location: Williamsport, PA

Re: A Noob with a Question

Postby tmm903 » Tue Jun 15, 2010 7:09 pm

Hi Phuong!

You have the right attitude--being positive! I shock people all the time when they see my port and ask what it is and I explain that I am going through chemo for colon cancer. I haven't changed in any way to "look" like I'm sick. ANd to be honest, even after chemo I don't feel sick or look sick. I may be tired for a day or two, but I don't pity myself. My ultimate goal is to be able to speak about my experience with stage IV colon cancer and how I survived it. that may be a ways off, but that is my ultimate goal. I have a lot to live for and take one day at a time.

Best of luck with the surgery and to a speedy recovery!
Tracy
DX 12/28/09 Stage 4 CC w/mets to liver
Sigmoid colon resection 1/11/10
FOLFOX Chemo FINISHED 8/27/10
Ileostomy reversed 10/11/10
FOLFIRI chemo FINISHED 5/6/11
married to Mike and mom to Austyn, age 6

User avatar
Gaelen
Posts: 3833
Joined: Fri Jun 13, 2008 12:57 am
Location: CNY
Contact:

Re: A Noob with a Question

Postby Gaelen » Tue Jun 15, 2010 9:22 pm

Phuong wrote:My question is - does anyone know how I can expect my diet to change following the big surgery? I haven't been able to find the answer anywhere and would like to start transitioning to my new diet in the next month so that it isn't a sudden change.


HI, Phuong. My diet changes a bit after each abdominal surgery because after each one, my guts seem to think they're back to those first few weeks after I had my colostomy placed in 2005. I have to eat a low residue diet that is limited to about 15-20 foods, mainly easily digestible protein, fats and just a very few specific fruits and vegetables (all cooked.) I have to stay on that pretty controlled diet for anywhere from 6 months after surgery (the first time) to about 8 weeks after surgery (the third time.) Then I can slowly add in new foods one at a time. But the limits on my diet are because of the intestinal changes due to my colostomy and a peristomal hernia - not so much because of my liver. I can't really eat nuts (unless they're ground up into nut butter) or any quantity of raw vegetables or fruits (too high fiber.) No corn, only very small amounts of things like broccoli or asparagus, no artichokes, nothing with seeds.

So today (26 months after my last surgery) I had about 1 1/2 cups of spinach salad (spinach, red onions, mushrooms, parmesan cheese, shredded cucumber, chopped bacon) and I put about a half-cup of full fat greek-style yogurt on top as 'dressing.' No nuts or seeds, no croutons. Baby spinach is easier to digest (lower fiber) than, say, romaine, but 1 1/2 cups of baby spinach is about the limit of my greens consumption for a couple of days. ;)

dianne052506 wrote:When I had my liver resection, nobody mentioned that they were also removing my gall bladder. Apparently the attitude is that you don't need it, and it's just in the way when they are doing the surgery. Ask if that is the case for your surgery. If so, a low fat diet would certainly help.


SkiFletch wrote:Things like really fatty fast foods should be avoided, and don't go eating whole sticks of butter, but you should be OK without much change.


Your mileage will definitely vary with the advice to avoid fatty foods or to eat low fat. ;)
I had 65-70% of my liver resected - all of one lobe, and two smaller wedges from two other lobes - and my resection included removing my gall bladder. I had my resection after 16 rounds of conventional systemic chemo over nine months, followed by another 13 months of chemo administered by HAI pump directly into my liver. My post-liver-resection liver has mostly-normal liver enzymes and lipid profiles. I low-carbed prior to cancer, controlled my carb intake while on active treatment, and low carb at weight-loss/maintenance levels now...and low carbers who do it right do *not* eat low fat because proper low carbing teaches our bodies to use fats and proteins for fuel. Yes, some of us actually *might* use most of a stick of butter (or a 1/4 cup of extra virgin olive oil or a 1/4 lb of nitrite free bacon) in a recipe. ;) I don't have any issues digesting fats, whether animal fats or things like extra virgin olive oil or unrefined coconut oil - and in fact, my calorie ratios are around 15% carbs : 30% protein : 55% fat. Low carbers also find out, soon enough, that reasonable fat intake helps moderate any constipation issues. I don't really deep fry foods, but I eat full fat dairy, I leave the skin on poultry (and eat it!), I eat fatty fish, I don't trim the fat off beef or pork, I put butter or EVOO on my vegetables, etc. I don't add a lot of extra fats to food, and I avoid partially hydrogenated oils (trans-fats) but I don't limit the other kinds of fats in my diet.

The things I've found that affect me following my resection are that I simply cannot consume more than a very small pour of wine or beer (cheap date!), and I can't really tolerate harder liquor at all. For practical purposes, I don't drink much. As mentioned, I also don't take much in the way of liver-toxic over-the-counter drugs like Tylenol and Ibuprofen - in fact, I don't take much in the way of OTC drugs at all. ;) But those are really the only limits imposed on me by the liver resection.

Hope that helps.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: A Noob with a Question

Postby jdepp » Tue Jun 15, 2010 9:53 pm

Hi Phuong,

Like Gaelen, I had a big percentage of my liver removed & poured gallons of chemo into the fragment that was left. I eat differently than she does, though: I eat the runner's diet: about 50-60% (complex) carbs and the rest mixed between fat & protein. I don't drink and don't do otc pain meds either (exc aspirin.) I haven't had any real digestive issues since going off chemo last August. Brown rice, whole wheat bread & pasta, eggs, fish, poultry (but skinless for me), pork, all kinds of fruits & veg, mega-salads, greens, dairy, cheese, olive oil. No processed meat, very little beef. I happen to love mushrooms, cabbage & onions & eat them all the time. I also eat liver so I can crack jokes. I have been trying to maintain my weight so I eat a lot.

Good luck to you. I congratulate you for thinking ahead so far -- personally my only advice would be to make whatever changes you think you should make for general health & to prevent recurrence of cancer.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

User avatar
Phuong
Posts: 1496
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: A Noob with a Question

Postby Phuong » Tue Jun 15, 2010 10:26 pm

Thank you for all the responses!!! It's so helpful to see what others are doing to see what might be right for me. I eat pretty healthy anyway, so it sounds like it won't be too much of a transition for me. The only red meat that I really crave would be an occasional rack of lamb. I don't really go for fast food, so I can work past that without too much difficulty. Basically I think I can still indulge my cravings in very small amounts.

I remembered seeing something online about the gall bladder typically being removed with the lobe, but I had forgotten about that so thanks for the reminder. I'll make a note to talk to my surgeon about it.

It's amazing who you find along the roads of life. I'm so happy to have found my new friends here! Thank you all. I look forward to getting to know you and your stories!

~ Phuong
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

User avatar
karin
Posts: 1278
Joined: Fri Jul 24, 2009 12:24 am
Facebook Username: Karin Tobin Fagner
Location: Austin, TX

Re: A Noob with a Question

Postby karin » Tue Jun 15, 2010 11:46 pm

Welcome, Phuong!!

Luvin' that positive attitude!! Please keep us posted!! We'll be sending strong positive thoughts your way and follow along with you on this part of your journey!!

Warmest wishes,
Karin
Karin
BFF dx'd June09 w CRC & peritoneal mucinous carcinomatosis @ age 40
She beat cancer for 20 months!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Varspool and 5 guests