Newly diagnosed rectal cancer

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NHMike
Posts: 2273
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Sun Sep 08, 2019 9:44 am

My minimum is 64 ounces or half-a-gallon. I had a cardiac incident last summer because I wasn't drinking enough water. I have to record fluid intake daily to make sure that I get enough.

I get cramps when I don't get enough electrolytes. I've had them the past couple of days as I've been eating less and the cramps can be quite painful. Your doctor will get baseline numbers on bloodwork but not all of them will pay attention to it unless the numbers are really low. My doctor added Magnesium supplements to some of my Adjuvant chemo infusion sessions. I normally need to take an additional 400 mg per day if I'm not eating enough or my salt intake is low. I took 900 mg a few days ago as I took 400 in the morning and had cramping issues at night, so I took another 500 at night.
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

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Jacques
Posts: 521
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Sun Sep 08, 2019 9:52 am

Caat55 wrote:...As I mentioned Miaderm and prescription Biafine were great. There is a study from Wash U Barnes Cancer Hospital published last October that found many creams safe to use during radiation. Published in JAMA Oncology.

.
.
For your information, there are some recent 2018 articles that seem to say that metallic-based creams (e.g., zinc oxide) are not so bad after all, provided the patient does not have substantial amounts of the cream still on the skin while in the radiation machine. In other words, applying a lot of cream on the skin and not removing all of it before going in for radiation seems to be the problem. But some of those creams are so greasy that it is very difficult to clean the excess from the skin without eventually causing abrasions or excoriations on the tender skin.

It should also be noted that the main scientific findings in the original 2018 JAMA article were based on lab studies and studies of rats under radiation -- i.e., pre-clinical studies.

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Jacques
Posts: 521
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Radiation+Xeloda - Side Effects

Postby Jacques » Mon Sep 09, 2019 2:46 am

Is this the week when you'll be starting your neo-adjuvant chemo/radiation? If so, good luck and let us know how it goes!

Have you seen this earlier post from 2013?

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44619&p=321925#p321925

There are three things I forgot to mention earlier.

1. Hand and foot hygiene - It's important to have a good manicure and a good pedicure before you start. This is to remove bacteria from around the nails to help prevent infection.

2. Oral hygiene - It is important to have a dental check-up and tooth cleaning before you start. This is to remove bacteria and plaque from under the gums and to help prevent mouth sores.

3. Scalp hygiene - It is important to wash your hair regularly and clean your scalp with medicated scalp cleaner. This is to avoid fungal and bacterial scalp infections. https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=49109&p=373859#p373859

And there's a 4th one I forgot to mention:

4. More frequent change of bedding - While under chemo/ radiation your bedding might become moist or damp due to night sweats or long sleep sessions. Sheets and pillowcases need to be changed more often than before. This is because moist, dirty linen attracts infestations of dust mites, leading to various health problems.
Last edited by Jacques on Tue Sep 10, 2019 12:12 am, edited 1 time in total.

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Mon Sep 09, 2019 7:08 am

Is this the week when you'll be starting your neo-adjuvant chemo/radiation?

Yes, I'll be starting on Wednesday. Thank you for the links!

I sent a note in to my oncologist this morning because I won't see them until after starting treatments. They didn't prescribe any nausea meds or anything to go with the chemo and I wanted to make sure if I needed to have them on hand just in case. I do have Imodium in case of diarrhea and Mirilax in case of constipation.

I've got a pillow for my desk chair, lotion for my hands and feet and mouth rinse to ward off mouth issues.

I thought about going to get my nails done before but I didn't want to take the chance of getting nicked or scratched or something beforehand so I didn't go. I do need to cut my nails short today though, according to the pharmacy counselor. I think that may bug me to have them shorter than I'm used to because you get used to using them in a certain way and they won't be there but at least I won't accidentally scratch myself.

I had my teeth deep cleaned last month and my daughter bought me some ultra soft tooth brushes. I have a sensitive toothpaste that I always use but might just use baking soda in case even that bothers me, I'm not sure on that.

I have head and shoulders shampoo. I guess that's not really medicated though so thank you for that suggestion.

Did anyone use a particular kind of soap during treatment? I've always used Dial for years. It's an antibacterial soap and I have used it for years to help with skin issues. I'm not sure if it's drying and if I should switch to something like Dove with moisturizers or just plain Ivory soap.
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: 2273
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Mon Sep 09, 2019 7:17 am

MeAndMine wrote:
Is this the week when you'll be starting your neo-adjuvant chemo/radiation?

Yes, I'll be starting on Wednesday. Thank you for the links!

I sent a note in to my oncologist this morning because I won't see them until after starting treatments. They didn't prescribe any nausea meds or anything to go with the chemo and I wanted to make sure if I needed to have them on hand just in case. I do have Imodium in case of diarrhea and Mirilax in case of constipation.

I've got a pillow for my desk chair, lotion for my hands and feet and mouth rinse to ward off mouth issues.

I thought about going to get my nails done before but I didn't want to take the chance of getting nicked or scratched or something beforehand so I didn't go. I do need to cut my nails short today though, according to the pharmacy counselor. I think that may bug me to have them shorter than I'm used to because you get used to using them in a certain way and they won't be there but at least I won't accidentally scratch myself.

I had my teeth deep cleaned last month and my daughter bought me some ultra soft tooth brushes. I have a sensitive toothpaste that I always use but might just use baking soda in case even that bothers me, I'm not sure on that.

I have head and shoulders shampoo. I guess that's not really medicated though so thank you for that suggestion.

Did anyone use a particular kind of soap during treatment? I've always used Dial for years. It's an antibacterial soap and I have used it for years to help with skin issues. I'm not sure if it's drying and if I should switch to something like Dove with moisturizers or just plain Ivory soap.


I didn't have any nausea medications for Neo-Adjuvant chemo - none were offered and I didn't run into any problems. I did absolutely need them on Adjuvant chemo though. It was the Oxaliplatin. And it was sometimes a problem when they wore off. The gave me a prescription and I filled it but I never took it. I went for ginger - ginger snaps, ginger ale, ginger tea, ginger ice cream, crystallized ginger to help with the nausea. Hopefully you won't have any nausea issues at all.

I did not change shampoos or soaps but the stuff I use is probably very mild. I use the store brand stuff.

I was advised not to shave during chemo - the reasoning is the potential for getting cut. That was around the time that Gilette was raising prices so I generally shave once every three to four weeks these days - I look a lot more scraggly these days.
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

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Jacques
Posts: 521
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Mon Sep 09, 2019 8:06 am

MeAndMine wrote:...Did anyone use a particular kind of soap during treatment?

I think you are probably OK with the products that you mentioned. Personally, though, I usually avoid consumer products containing a lot of artificial ingredients.

What are Parabens and Phthlates and Why You Should Avoid Them
https://themodcabin.com/what-are-parabens-and-phthalates-and-why-you-should-avoid-them/

FDA Bans 19 Chemicals Used In Antibacterial Soaps
https://www.npr.org/sections/health-shots/2016/09/02/492394717/fda-bans-19-chemicals-used-in-antibacterial-soaps?t=1568033037113

Why There's Antifreeze in Your Toothpaste: The Chemistry of Household Ingredients
https://www.amazon.com/Why-Theres-Antifreeze-Your-Toothpaste/dp/1556526970

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Mon Sep 09, 2019 11:17 am

I went for ginger - ginger snaps, ginger ale, ginger tea, ginger ice cream, crystallized ginger to help with the nausea.

I have some ginger root capsules that we take from time to time for motion sickness but thank you for the suggestion! I'll have to get some of the other things, too.

I think you are probably OK with the products that you mentioned.

I think natural is always better but we have lots of both.
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: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Tue Sep 10, 2019 4:43 am

I sent my oncologist a message on the patient portal yesterday morning but no one replied so maybe that is not the way to go with that doctor. With my GI doctor, I got a response way faster by contacting them on the patient portal than when I called and left a voicemail. I'll have to call today when they open.

I haven't talked to them since my last visit, before the medicine arrived in the mail or we had a definite date to start radiation. When I left that day, he told me to start taking the medication the day I start chemo. They told me how many and how to do it, but I feel like I need to check in with them to let them know I will be starting and I would really like to have a nausea prescription on hand in case I need it. I'm hoping for no nausea but I get it so easily on a normal day that I worry about that one. I can't even watch the kids playing video games some days because I get motion sickness sitting on the couch, watching the screen. With that kind of thing, I feel it coming on and change what I'm doing and handle it. I'll probably be fine with the chemo pills, too, I would just like to be prepared.
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

Rock_Robster
Posts: 348
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Newly diagnosed rectal cancer

Postby Rock_Robster » Tue Sep 10, 2019 6:27 am

To your soap question, I discovered this stuff during radiation, and my wife and I both still use it today :)

https://moogoo.com.au/milk-wash
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

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Jacques
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Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Tue Sep 10, 2019 8:24 am

MeAndMine wrote:... I would really like to have a nausea prescription on hand in case I need it. I'm hoping for no nausea but I get it so easily on a normal day that I worry about that one...

While you are waiting tor your nausea prescription to come through you might want to look at some of the home remedies available for nausea:

Home Remedies for Nausea
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59589&p=473087#p473087

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Jacques
Posts: 521
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Wed Sep 11, 2019 8:31 am

MeAndMine wrote:Looks like my oral chemo will be pills through mail order. The doctor said he prescribed Xeloda, the pharmacy that called said they are still working on it but it's the generic version. Have any of you read about or noticed any difference in using one or the other? She said they could ask the doctor to switch it to Xeloda. I notice on my insurance website, Xeloda is over $9,600 where the generic is $1,600.

My opinion on the generic vs. branded issue is this: If the generic version is manufactured by a US company in one of its US-based labs, then the generic product should be just fine for use. This is because the US has very strict rules requiring GMP (Good Manufacturing Practice) compliance for generic drug manufacturers.

However, if the mail-order pharmacy is selling a generic product that was manufactured abroad, then that's a different matter. It all depends on which foreign country produced the generic drug and how closely and how frequently the manufacturing process is monitored by that government's regulatory agency. The countries most suspect, I think, are the ones that rank very high on Transparency International's corruption index. This is because of the high level of graft and corruption existing in those countries which then allows strict manufacturing criteria to be easily bypassed.

This is just my personal opinion based on discussions with my oncologist while I was on Xeloda adjuvant therapy. My oncologist did not want to prescribe the generic version because he claimed that the local pharmacies got their supply from unreputable manufacturers abroad.

For reference, here is a list of the top 10 generic drug manufacturers:

https://www.thebalance.com/top-generic-drug-companies-2663110

Also, here is a link containing a list of 11 generic capecitabine manufacturers in the US.

https://www.drugs.com/cdi/capecitabine.html

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Wed Sep 11, 2019 3:49 pm

My minimum is 64 ounces or half-a-gallon.

I've had at least 64 oz. water today. I started off counting but then had water in cups in the waiting room and got off track with the amount but I've at least had that much from my own water bottles.

For reference, here is a list of the top 10 generic drug manufacturers

Thank you, I looked it up and my generic is made by the second name on your list.

Day one of radiation and capecitabine is almost complete. I didn't get any nausea with the medicine but I've only had one dose. Is that one of the things that accumulates and you feel it later? I think at least the diarrhea part will come later but for now, things are okay.

The time on the table at my appointment was longer than normal as they had to complete the set up appointment before doing the actual radiation. It was hard to hold my arms in position and they fell asleep but I managed to get through it. I was fidgety but started counting seconds in my head to try to not think about it so much. It won't be that long next time so it should be easier.

I asked again about sitz baths and peri/bidet bottles but they act like they've never heard of someone asking that question before. I thought maybe I asked the wrong person last time but that must be something that office doesn't contemplate. I will order some off of Amazon, which I should have done before now.

I've tried to eat more today but am still lacking in calories and protein even with greek yogurt and protein drinks. I will keep at it and figure it out. I feel so full already but need to eat soon to take the last dose for today.

I didn't ask if it was okay to take Tylenol or anything but I'm feeling a headache coming on. I think I can make it through dinner and capecitabine and head on up to bed before long. I meant to get out and walk this afternoon but got sleepy and laid down. I couldn't fall asleep though so that might be part of the headache feeling, too.
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

Zod
Posts: 20
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Newly diagnosed rectal cancer

Postby Zod » Wed Sep 11, 2019 4:40 pm

I sent my oncologist a message on the patient portal yesterday morning but no one replied so maybe that is not the way to go with that doctor

My various does differ a lot for how to contact them:
1 Portal message
2 Instant (phone) message
3 Email
4 Variations on calling nurse during day and on-call oncologist at night
5 Oncologist has a detailed list of who to contact for what and different for regular versus off hours.

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Thu Sep 12, 2019 1:56 pm

My various does differ a lot for how to contact them

I think I just have to figure out the right method for each of the doctors. I really prefer the portal as you can type a message then get a reply before long instead of waiting for a phone call that may come in while you're at another appointment. That's happened to me a few times already. I usually try to hand my phone to someone to answer for me in case I miss them.
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: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Thu Sep 12, 2019 2:18 pm

I woke up this morning nauseous. I only had one full day of treatment and I was wondering how I was going to handle it if I was sick already. I think maybe it was just me having an empty stomach for too long.

I woke up around 3am. I usually get up around 4 or so but if I wake up earlier, I will check emails and read things instead of getting my day started. Maybe that time was too long to have an empty stomach. I was trying to go back to sleep but I couldn't. I may need to take something upstairs with me at night in case I wake up so my stomach isn't empty. I had to take a nausea pill and was worried about needing more the rest of the day. I did feel nauseous but not enough to have to take another one so I think it's maybe me being anxious over it. I know I need to enjoy the next week or so before things really set in. Hopefully I can keep a good frame of mind.

I know some of you only had oral chemo on the days you had radiation. Mine is set up to take them 7 days a week so even on weekends when there is no radiation planned. The oncologist said if it got too rough, we could skip weekends. I'm hoping I will be able to do all of the treatments as planned.
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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