I Don't Think This Is What They Meant

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TheLadySkye
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Joined: Thu Oct 24, 2013 1:40 pm

Re: I Don't Think This Is What They Meant

Postby TheLadySkye » Wed Feb 25, 2015 9:04 am

scottyg wrote:I too was told to eat what ever I could during treatment. So I did. For the first year after treatment I had a hot fudge sundae every night. EVERY NIGHT. I eventually just kinda quit. I didn't think about it I just did. I had gained my weight back and my pants would stay up. I still love hot fudge on ice cream just not every night.


That was totally me for a couple months once the cold-sensitivity from the oxaliplatin subsided - ice cream every night whether I wanted it or not! Now I'm trying to limit it to just when I really want it, but I totally get the sentiment.
TheLadySkye
Stage 2b (T4N0M0) small intestine (jejunum) 8/13
Small bowel resection 9/13
CT 10/13 - NED
FOLFOX chemotherapy 11/13 - 4/14
CT 6/14 - NED and my nemesis (the power port) out!
Clean colonoscopy and endoscopy 9/14
CT 12/14, 6/15 - NED!!!

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TheLadySkye
Posts: 269
Joined: Thu Oct 24, 2013 1:40 pm

Re: I Don't Think This Is What They Meant

Postby TheLadySkye » Wed Feb 25, 2015 9:05 am

MamaN wrote:My doc said same thing eat what ever you want! I was a little shocked by this butt they want you to eat what you can handle ,whatever that may be ! I eat a lot of Italian cookies and pizza ! Go figure . Now that chemo is done ,I do try to eat healthier more fruits s and veggies. Nice to hear from you again!


Thank you for the welcome back! I really appreciate it :)
TheLadySkye
Stage 2b (T4N0M0) small intestine (jejunum) 8/13
Small bowel resection 9/13
CT 10/13 - NED
FOLFOX chemotherapy 11/13 - 4/14
CT 6/14 - NED and my nemesis (the power port) out!
Clean colonoscopy and endoscopy 9/14
CT 12/14, 6/15 - NED!!!

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: I Don't Think This Is What They Meant

Postby KWT » Wed Feb 25, 2015 9:31 am

Christine, just make sure after your ice cream you follow up with a walk on the beach!

And stick with Ben and jerrys 8)

Eat whatever you want seems to be the standard answer. We have to police ourselves, my body seems to let me know when I'm eating the right things or not.

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TheLadySkye
Posts: 269
Joined: Thu Oct 24, 2013 1:40 pm

Re: I Don't Think This Is What They Meant

Postby TheLadySkye » Wed Feb 25, 2015 12:22 pm

Thank you all so much for the replies and feedback. I feel a little like I'm banging my head against a wall when it comes to asking my doctors about nutrition, supplements, appropriate exercise, mental health support, followup on residual issues, etc. While I am hugely grateful that so far so good post-chemo, I REALLY wish there was a lot more support for what to do next in terms of immune support, mental health, physical changes, what to expect and dealing with the "new normal" and...well, all sorts of things really.

I am VERY grateful to my doctors, but I feel like unless there's a needle to be stuck in my arm or radiation to blast at me for a scan, the rest of my care I'm just on my own. My oncologist even told me that they don't really set aside time to discuss such things because they're focused on the immediate and critical issues. Which I understand. But it's leaving me feeling a little at sea and I'm finding out I'm not very well equipped to plan, execute, AND evaluate everything that comes after.

And it seems like a pretty big ball to drop, ya know? Not sure how many chances one gets to "get it right." :(
TheLadySkye
Stage 2b (T4N0M0) small intestine (jejunum) 8/13
Small bowel resection 9/13
CT 10/13 - NED
FOLFOX chemotherapy 11/13 - 4/14
CT 6/14 - NED and my nemesis (the power port) out!
Clean colonoscopy and endoscopy 9/14
CT 12/14, 6/15 - NED!!!

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: I Don't Think This Is What They Meant

Postby cathy123 » Wed Feb 25, 2015 1:19 pm

I found out somewhat accidently that my hospital cancer center has a nutritionist I can see for free. (She called because the radiation nurse had sent her a question about whether it was OK for me to take curcumin during radiation). She sent me some information with foods that show proven or possible links with colon cancer. I don't have it nearby right now but can get it - I know red meat was on the bad list and dairy and exercise were on the good list but don't remember it all. And, she said I can make an appointment to come in for more information - I plan to do that down the line after finishing surgery, chemo, reversal etc since I know my diet will be limited during that time.

You may want to check if your hospital has anything like that? Seems like MSKCC would?
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: I Don't Think This Is What They Meant

Postby Laurettas » Wed Feb 25, 2015 11:31 pm

My dad is 87 now and 15 years post stage 3 colon cancer. He lives on Twinkie-type desserts, potato chips and coffee! And the majority of "meals" when they eat a meal are pre-made from the grocery store. He just had a colonoscopy last year and not one polyp. Very little exercise either. I am really beginning to wonder if any of this makes any difference. For a woman I have eaten massive amounts of red meat all my adult life because we had a small farm and raised it. We ate half pound burgers regularly. Had a colonoscopy 4 years ago when I was 56 and not a polyp. Then I read about all of the super-healthy people on here getting colon cancer........ Decided I am going to continue eating what I darn well want!
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

scottyg
Posts: 135
Joined: Tue Apr 17, 2012 6:40 pm

Re: I Don't Think This Is What They Meant

Postby scottyg » Mon Mar 02, 2015 1:53 pm

TheLadySkye wrote:
scottyg wrote:I too was told to eat what ever I could during treatment. So I did. For the first year after treatment I had a hot fudge sundae every night. EVERY NIGHT. I eventually just kinda quit. I didn't think about it I just did. I had gained my weight back and my pants would stay up. I still love hot fudge on ice cream just not every night.


That was totally me for a couple months once the cold-sensitivity from the oxaliplatin subsided - ice cream every night whether I wanted it or not! Now I'm trying to limit it to just when I really want it, but I totally get the sentiment.



I just had to chime in again. After reading this the other night I decided that it had been to long since I had a hot fudge sundae. I went and got the ice cream out and then discovered that I did not have any hot fudge. So I made my own. It came out really good and well... I am off and running again. Homemade hot fudge sundaes every night. I keep telling my self that my pants are too loose. Oh and ice cream is evil and must be eaten to save the world. Yeah thats it.
DX Nov 11
Stage 4
6 Folfox + Avastin Dec 11 - Feb 12
Surgery March 15 Took part of Colon and Part of Liver
Folfox + Avastin May 12 - July 12
NED!!! Yippee!!!!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: I Don't Think This Is What They Meant

Postby midlifemom » Mon Mar 02, 2015 3:19 pm

Scotty, how do you make homemade hot fudge?
I've tried to eat healthy but, I swear, every time I have a salad my body craves ice cream immediately afterwards! So I generally indulge. We're supposed to listen to our bodies, right?
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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TheLadySkye
Posts: 269
Joined: Thu Oct 24, 2013 1:40 pm

Re: I Don't Think This Is What They Meant

Postby TheLadySkye » Tue Mar 03, 2015 7:30 pm

Scotty - sounds legit to me! :D
TheLadySkye
Stage 2b (T4N0M0) small intestine (jejunum) 8/13
Small bowel resection 9/13
CT 10/13 - NED
FOLFOX chemotherapy 11/13 - 4/14
CT 6/14 - NED and my nemesis (the power port) out!
Clean colonoscopy and endoscopy 9/14
CT 12/14, 6/15 - NED!!!

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Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: I Don't Think This Is What They Meant

Postby Voxx66 » Tue Mar 03, 2015 7:32 pm

If you want it - I can certainly give you a good recipe for homemade hot fudge.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

scottyg
Posts: 135
Joined: Tue Apr 17, 2012 6:40 pm

Re: I Don't Think This Is What They Meant

Postby scottyg » Wed Mar 04, 2015 1:13 pm

I am not sure that what I am making is really hot fudge. Honestly I don't care if it is or not. I like it. Maybe too much. All I am doing is melting some dark chocolate in the microwave, adding some butter, sugar and half and half. I don't measure anything when I cook. Ever. Baking is a different story. The ratio is about 1/4 butter to chocolate. So two ounces of chocolate gets a half ounce of butter. Sugar to taste and enough cream that it does not solidify when it gets cold but not so much that it stays runny when cold. Mmmm tasty.
Scotty
Great. I have not had breakfast yet and am now wondering how I can rationalize ice cream for breakfast.
DX Nov 11
Stage 4
6 Folfox + Avastin Dec 11 - Feb 12
Surgery March 15 Took part of Colon and Part of Liver
Folfox + Avastin May 12 - July 12
NED!!! Yippee!!!!

Dress In Blue Girl
Posts: 171
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Location: seattle wash

Re: I Don't Think This Is What They Meant

Postby Dress In Blue Girl » Wed Mar 04, 2015 4:10 pm

I am 10 yrs out from diagnosis and I had bad habits before cancer and after Diagnosis I went crazy healthy , no sugar no pop, no coffee, basically I drank v 8 juice in morning and only had whole wheat, fish, veggies . NOTHING yummy or salty, well I got down to 105 almost too thin for my liver surgery, Had to work like crazy to gain 10 pds to go back on chemo. I was so depressed ,to think I had to give up all I liked, it made me feel even more alone at social events.

I actually had to carry around ensure around like a water bottle and sip on it all day to gain weight. I gained very slowly,After I was done with treatment.

I my weight back and I eat what ever I want now. I do not eat hamburgers everyday but if I want one I will eat one. I also will have diet coke not everyday but maybe once or so a week ( mostly with Captain Morgans in it and lime) I was a 2 cans of diet coke a day girl before diagnosis.

I do try and eat more veggies and be more thoughtful of getting enough protein etc.. But I do not limit myself from anything.

I had a natural path tell me if you don't like what your eating, that is not good for your digestive system ether . So while I don't eat ice cream in place of meals , I also don't stress life is to short. From what I have seen, being around awhile ,the only thing that can increase your odds of not recurring is exercising regularly and that's only for some people.

its great to eat healthy but i think it we put to much pressure on ourselves to try and change it all... cancer patients have enough stress thats just my opinion.
anita

IV feb 2005 colon resection,
folfori w/avastin,
Aug 2005 liver resection/rfa to get rid of 8 liver tumors
Sept 2005 folfox w/avastin NED!!!!
avastin till Jan 2007
port out July 2007

Be the change you want to see in the world

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Voxx66
Posts: 1844
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Facebook Username: Michael Void Ward

Re: I Don't Think This Is What They Meant

Postby Voxx66 » Wed Mar 04, 2015 4:25 pm

That is a chocolate sauce but not hot fudge. I make a similar sauce though the microwave is never allowed near my chocolate. Hot fudge like what is commercially available generally is made with Dutch-process cocoa powder.

Here is My chocolate sauce recipe:

1 cop heavy cream
1/4 cup light corn syrup (For the glucose in it - it prevents the sauce from crystalizing)
4 Tablespoons unsalted butter
Pinch of salt (Always add salt to sweet things - it greatly improves the flavor)
8 oz bittersweet chocolate (I use Valrhona 61% cocoa Le Noir but it is pricey. Callebaut is also great but costs about the same. - for a savings - try Hershey's special dark - it works surprisingly well in this recipe)

Chop the chocolate either with a chef's knife or in a food processor.
Boil the other ingredients.
Pull the pan off the heat and add the chopped chocolate in.
Cover and let sit off heat for about 5 minutes. Whisk it together and enjoy.

If you like this recipe hit me up and I will share my Hot fudge recipe as well.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: I Don't Think This Is What They Meant

Postby midlifemom » Wed Mar 04, 2015 6:52 pm

Voxx, thanks for the recipe. I will have to go shopping, but will definitely try it.


Scotty, there is a 'ice cream for breakfast' holiday. You can find it online. I think it is supposed to be in February, but March seems close enough to me.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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TheLadySkye
Posts: 269
Joined: Thu Oct 24, 2013 1:40 pm

Re: I Don't Think This Is What They Meant

Postby TheLadySkye » Thu Mar 05, 2015 5:23 pm

You guys are makin' my hungreeeeeeeeeeeeeeeee!
TheLadySkye
Stage 2b (T4N0M0) small intestine (jejunum) 8/13
Small bowel resection 9/13
CT 10/13 - NED
FOLFOX chemotherapy 11/13 - 4/14
CT 6/14 - NED and my nemesis (the power port) out!
Clean colonoscopy and endoscopy 9/14
CT 12/14, 6/15 - NED!!!


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