Newly diagnosed rectal cancer

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MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sat Sep 07, 2019 6:48 am

[quoteDoesn’t it feel empowering to have a stage and know how you’re going to attack it? I remember it did for me with my mom.][/quote]

It's certainly way better to know that to wonder what is going on!

The surgeon still says we can hope for enough shrinkage to save the sphincter muscles and be able to have a reversal. I really don't see how that is even a possibility, seeing as to where the tumor is. I don't want to have an ostomy but I also believe it is better than taking a chance on leaving anything that could possible regrow. But we aren't even at that bridge yet.

I'm still having such a hard time sleeping and not taking any kind of medication for pain, anxiety or sleep. I quit all of my supplements as soon as I was diagnosed and my doctors have said not to start them back. I've always been low on D's and miss them but they suggested I wait for now.

Does Tylenol interfere with anything? I need to ask before I start chemoradiation next week. My shoulder stays stiff though I've been working on it. The way I lay on the radiation table, my arms are up crossed under my head. I could manage to lay there for the time it took for them to do the preliminaries but my arm and neck were screaming by the end of it. I'm wondering if taking Tylenol before treatments would help. Then again, I don't know that it's a good idea to take something every day. I also have some cream I could rub on it. I'm afraid of things interfering with each other.

I've never been one to take medicines and am not sure what I should do. I know I shouldn't hurt when I could be taking something but so far when I've spoken to the different doctors, they haven't said I should be doing anything so I don't have anything to take. I'm not sure which one needs to be the one to tell me what to take though.

I spoke to the oncologist and the radiation oncologist about a skin problem--I'm worried it will flare up with chemo--but they weren't concerned. When I mentioned it to the surgeon, and told me to go ahead and start applying antibiotic ointment to the areas. I need to ask the radiation oncologist if any of the creams will interfere with the radiation. He's the watch and wait type and doesn't want to do anything proactively but I know my skin. Any time I start to get sick or my immunity is out of balance, I have issues.
Last edited by MeAndMine on Sat Sep 07, 2019 7:02 am, edited 1 time in total.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sat Sep 07, 2019 6:55 am

If the weather is very hot, then they will pack it with ice packs in styrofoam


I asked about keeping the medicine cool and they said it didn't require any refrigeration so they sent it in a plain box. It was only in the high 80's when it was delivered though.

Did they give you a calorie/protein count when you went through radiation with Xeloda? I'm losing weight but had it to lose so I thought it wasn't a big deal but they are adamant that I eat 2,120 calories a day. I tried yesterday. I felt like I was eating all day long and was still only around 1,800 when I went to bed. I felt so bloated and full all night and didn't even want to think about eating when I woke up. I have no idea how I'll be able to do more than that after beginning treatment.

The nutritionist also said to eat between 106-159 grams of protein a day. That's kind of a big window so I wrote down 130 I think to be more than the minimum.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Sat Sep 07, 2019 8:38 am

MeAndMine wrote:
If the weather is very hot, then they will pack it with ice packs in styrofoam


I asked about keeping the medicine cool and they said it didn't require any refrigeration so they sent it in a plain box. It was only in the high 80's when it was delivered though.

Did they give you a calorie/protein count when you went through radiation with Xeloda? I'm losing weight but had it to lose so I thought it wasn't a big deal but they are adamant that I eat 2,120 calories a day. I tried yesterday. I felt like I was eating all day long and was still only around 1,800 when I went to bed. I felt so bloated and full all night and didn't even want to think about eating when I woke up. I have no idea how I'll be able to do more than that after beginning treatment.

The nutritionist also said to eat between 106-159 grams of protein a day. That's kind of a big window so I wrote down 130 I think to be more than the minimum.


They didn't give me any calorie goals but I think that they assumed that I was up on nutrition because I work out a lot.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
Jacques
Posts: 518
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Sat Sep 07, 2019 3:55 pm

MeAndMine wrote:... Does Tylenol interfere with anything? I need to ask before I start chemoradiation next week...

You can use a Drug-Drug Interaction Checker to check for interferences, e.g.,

https://www.drugs.com/drug_interactions.html

Just enter the drug you want to check, and then add each one of the other drugs that you will be taking. Then check for interactions between all of them.

There are different kinds of interferences. Some interferences reduce the effectiveness of other drugs. Some drugs trigger new or stronger side effects. Some drugs actually increase the potency of other drugs and send them into the toxic range. etc., etc. For example, some tranquilizers taken just before surgery will cause the general anaesthesia to be much more potent than intended

Here is an example of a major interaction with Tylenol:

https://www.drugs.com/interactions-check.php?drug_list=11-12,1034-14582

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sat Sep 07, 2019 5:41 pm

You can use a Drug-Drug Interaction Checker to check for interferences

Thank you Jacques!

They didn't give me any calorie goals but I think that they assumed that I was up on nutrition because I work out a lot.

I know nutrition as to how to eat balanced and to lose weight but not to gain. I've never had that problem. I tried to eat more today but really I can't eat like that. I'm going to have to buy shakes or something. I did way less than yesterday and I'm getting ready to turn in.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

User avatar
Jacques
Posts: 518
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Sat Sep 07, 2019 11:03 pm

MeAndMine wrote:... I know nutrition as to how to eat balanced and to lose weight but not to gain. I've never had that problem. I tried to eat more today but really I can't eat like that. I'm going to have to buy shakes or something...

If you have a blender, you can make all kinds of tasty smoothies. You can vary the ingredients until you find a mixture that suits you.

During chemo, most of my meals were smoothie meals, either sweet ones or savory ones. There are lots of websites that have smoothie recipies for cancer patients. Also there are web pages around by "oncology certified registered dietitians" (see link below). Yes, there is a certification program for cancer dietitians. Try to find an oncology-certified registered dietitian if you can.

https://stanfordhealthcare.org/medical-clinics/cancer-nutrition-services/during-cancer-treatment/high-calorie-snacks.html

Jacques wrote:...As for what to eat, I don't know what to suggest, but I can give you a list of what I ate in order to regain some of my lost weight. (Note: be sure to check with doctor before trying any of these): Ripe avocados, macaroni with tuna and cheese, peanut butter, protein bars, ginger snaps, bananas, cooked oatmeal, canned sardines, canned mackerel, blueberry yoghurt smoothies.
...
Ref. https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52710&p=414918#p414918
Last edited by Jacques on Mon Sep 09, 2019 11:45 pm, edited 1 time in total.

AlexandraZ
Posts: 47
Joined: Fri Aug 23, 2019 8:25 am

Re: Newly diagnosed rectal cancer

Postby AlexandraZ » Sun Sep 08, 2019 3:26 am

Hi,

Have you been told to avoid any foods? If not, it should be possible to reach your caloric goals without too much effort if you eat smart. Eating healthy high-fat foods will get you there quickly. Avocado, coconut oil, olive oil, tree nuts, seeds... There are tons of calories in those things. Over 300 calories in one avocado. If you find nuts that you like, you can get there fast too. Trail mix has loads of calories. Hemp seeds are high in calories as well as protein. A smoothie with banana and peanut butter will pack quite the caloric punch as well.

My boyfriend has a crazy-fast metabolism and he has had to eat SO MUCH during the past 6 months of chemo to keep his weight up. He's lost a little weight, but after we worked out a good routine he stopped losing and has been gaining weight steadily.

You might already know these things, just wanted to pitch in in case I could help. Best of luck!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Sep 08, 2019 6:12 am

Try to find an oncology-certified registered dietitian if you can.


My oncologist has a nutritionist in his office that I haven't seen. My oral chemo came with a subscription to a website for nutrition but on there I can't see how to limit the foods I'm not supposed to eat. The nutritionist I saw last week was part of my radiology team. But I will look into finding someone with more info. I'm just so used to try to limit calories, I need to change my mindset.

I have been entering my food at the end of the day, feeling full all day and not realizing I was low until evening. I will start tracking throughout the day to do better. I am enjoying peanut butter toast this morning. I love my wheat bread but they told me not to eat that when beginning treatment so I'm going to enjoy it this weekend.

Thank you for the high calorie snacks link, I have added it to my favorites!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Sep 08, 2019 6:28 am

Have you been told to avoid any foods?

Hi Alexandra! I have foods to avoid so that is kind of what is making me have a harder time to figure it out. I get mixed info from the different doctors as to what to cut out/avoid but it's for sure I have to cut out the fiber, nuts, seeds, raw vegetables and things that we usually are told we need and to eat lots of.

My kids asked what was on the lists so I sent them a copy of one thing but I have another paper that contradicts what that one says. I think it's because the things are different for each treatment.

The radiation doctor has things not to eat but they said that is to keep your bowel quiet so it doesn't move while they are doing treatments. I was always told potatoes were a good thing but their list has it on the "maybe" list.

This is the list to avoid from the radiation nutritionist:
Vegetables: Onions, celery, carrots, Brussels sprouts, cucumber, cabbage, cauliflower, radishes
Beans
Fruit: Raisins, bananas, apricots, prunes, dried fruits
Carbohydrates: Bagels, wheat germ, pretzels
Peas
Green Salads
Bran cereal / foods high in bran
Brown rice
Leeks, parsnips

You can see why that's confusing. I'd heard bananas were a good thing to have with chemo but they say not to with this radiation. Also heard that carrots were good if they were cooked well, but they are on the no list, too.

The allowed list is:
Meat: fowl, fish
Vegetables: lettuce, peppers, avocado, tomato, asparagus, zucchini, okra, olives
Fruits: cantaloupe, grapes, berries
Carbohydrates: white rice, chips, popcorn, graham crackers
All Nuts
Eggs, jello, fruit ice

Now, saying that, most of the "allowed" things on this list from the radiologist is on the "avoid" list from my low residue diet they told me to do. I have to sit down and compare the lists. I understand the above list is just to eliminate gas which would make a problem with things moving during radiation.

On top of that, the same doctor gave me another handout that says:
Lifestyle:
Avoid nuts, seeds and popcorn during treatment. No other preventative dietary changes are necessary.

So two handouts in the same packet, one says popcorn or nuts is allowed, the other said not to eat them.

I was told sweet potatoes were good at one appointment but have a handout that says instead of a sweet potato, have a baked potato. Just a lot of conflicting information but I also read every little thing and think too much so I make it harder on myself!

I think I need to stick to the low residue diet for the most part and add to it the things to avoid from the other list.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Sun Sep 08, 2019 6:41 am

MeAndMine wrote:
They didn't give me any calorie goals but I think that they assumed that I was up on nutrition because I work out a lot.

I know nutrition as to how to eat balanced and to lose weight but not to gain. I've never had that problem. I tried to eat more today but really I can't eat like that. I'm going to have to buy shakes or something. I did way less than yesterday and I'm getting ready to turn in.


If you workout a lot, it's pretty easy to gain weight by just working out less and eating the same amount. I had the problem of gaining weight on chemo because I didn't feel like working out as much while on it.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Sep 08, 2019 7:38 am

I had the problem of gaining weight on chemo because I didn't feel like working out as much while on it.


I have been so tired. And treatment hasn't even started. I walked up the hill to the mailbox then came back home instead of walking. I know I need to be doing that and don't understand why I'm already this tired.

I read your thread but I can't remember, did you have any special skin treatment that you did while undergoing the radiation? I'm going to go look through again but wondered if you had any tips for keeping things from breaking down, down there. Did you use lotions or creams or can you recommend anything?
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

User avatar
Jacques
Posts: 518
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Sun Sep 08, 2019 7:40 am

MeAndMine wrote:
Try to find an oncology-certified registered dietitian if you can.

... The nutritionist I saw last week was part of my radiology team. But I will look into finding someone with more info. ..

You might try the search function on the website below after entering your zip code and choosing the "Search by Expertise" option and checking the "Cancer/Oncology Nutrition" checkbox. Maybe you can find someone near you who really understands the different nutrition needs of cancer patients at all phases of their treatment program:

https://www.eatright.org/find-an-expert
.

NHMike
Posts: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Sun Sep 08, 2019 8:07 am

MeAndMine wrote:
I had the problem of gaining weight on chemo because I didn't feel like working out as much while on it.


I have been so tired. And treatment hasn't even started. I walked up the hill to the mailbox then came back home instead of walking. I know I need to be doing that and don't understand why I'm already this tired.

I read your thread but I can't remember, did you have any special skin treatment that you did while undergoing the radiation? I'm going to go look through again but wondered if you had any tips for keeping things from breaking down, down there. Did you use lotions or creams or can you recommend anything?


I have a high pain tolerance so I didn’t use anything. I did use pads to contain the small amounts of leakage. Everything was fine two weeks after the end of radiation.

The mental pressure can get to you and make you feel tired. I found, while on chemo, that I didn’t feel like walking, but felt better after walking. Make sure you are getting enough water and electrolytes too.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Newly diagnosed rectal cancer

Postby Rock_Robster » Sun Sep 08, 2019 8:12 am

MeAndMine wrote:Did you use lotions or creams or can you recommend anything?

I was lucky and the skin symptoms were quite mild, but MooGoo Udder Cream was perfect for the itchiness and redness. I used it twice a day (after a shower in the morning, and before bed), and they say it’s best to start before you have symptoms. They market it for radiation dermatitis, amongst other things. Some folk also like Udderly Smooth - I think they’re different brands of a similar concept. There are stronger medicated creams if this isn’t enough, of course.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Sep 08, 2019 9:27 am

You might try the search function on the website below after entering your zip code and choosing the "Search by Expertise" option and checking the "Cancer/Oncology Nutrition" checkbox.

Thank you for the link! There were way less people on the list after that checkbox but there are some.

Make sure you are getting enough water and electrolytes too.

Did you have a specific amount of water you made sure to get in each day? They told me. I wrote it down but can't remember at this second. I think she said only 3 quarts or something. Whatever it was, I remember thinking that wasn't as much as I used to drink when I was making sure to get enough. Also, I have never liked the taste of Gatorade, didn't even like KoolAid growing up so those kind of sweet drinks are just not my thing. I wonder if drinking broth or bouillon would work as well for the electrolytes.

I was lucky and the skin symptoms were quite mild, but MooGoo Udder Cream was perfect for the itchiness and redness.


Thank you, the ingredients for MooGoo look better than the one my doctor said to get. The MooGoo has aloe and the Working Hands one doesn't. It has other things but I just realized this one is just for my hands & feet. Were you able to use the MooGoo on private areas? I looked up the other Udder Cream and it doesn't have aloe but it does have lanolin. The Working Hands one I have has neither of those!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine


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