Newly diagnosed rectal cancer

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MeAndMine
Posts: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Aug 25, 2019 4:15 pm

I was just going over papers for tomorrow's appointment & I see there is a distress assessment. Similar to this https://www.nccn.org/patients/resources ... ometer.pdf What is that for? I looked at it & of course I would have to check the boxes on being anxious & worried & things like that because I'm trying to navigate this diagnosis & I'm all over the place.

Also, can you eat before an MRI with rectal focus? The only thing I've got says "MRI Pelvis w/ + w/o Contrast" so I'm not sure if it's with or without. On the phone they mentioned an IV so I think that means with. On the insurance papers it says without but that's also what the CT said & they did use contrast.

What happens on your first visit with the oncologist? I was thinking it would just be a meeting to talk but I have no idea. Do they re-do blood work? I have not taken any of my normal vitamins in a while, trying to make sure I don't skew results until I can talk to them to see what I can or cannot take. I'd like to take something OTC to help me sleep tonight as I still don't get much rest. Last night I was worrying about insurance stuff all night. I toss & turn. But don't want it to mess up anything in a blood test. I don't even want to take a Tylenol. I don't know how everything works.

I have a couple of places in my mouth that are still sore from the dentist last week. They accidentally scraped a place in my gums under my lip so I've been swishing with salt water but do I need to mention that at any appointment? I don't want them to do a scan & think something is going on when it's just dental healing.

I know, I'm all over the place this evening. I need to go to bed so tomorrow will get here already.
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: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Sun Aug 25, 2019 4:50 pm

I think that the general directions are not to eat or drink after midnight but I haven't had an MRI in a while. Discussion about food should be on the directions.

I had the following blood tests with the first meeting of the oncologist: CBC, Comprehensive Metabolic Panel, CEA, Ferritin, Iron + TIBC, Hemogram, Differential - Automated. There was a genetic test as well - to make sure that I would be able to metabolize the chemo (5FU) but I don't see it on the lab reports.

These are my notes from the first meeting with the Oncologist. I'm sure that other things went on but this is what I wrote down.

I had a consult with Dr Gehr at Dartmouth Hitchcock and he laid out the treatment plan with about five weeks of chemo using an oral medication called Xeloda and daily radiation treatment. Then surgery with a maximum of one night inpatient followed by six cycles of 5FU treatment. This is via an infused pump with a 46 hour cycle. I wonder if I could just take Xeloda instead as Xeloda is supposed to be oral 5FU. I think that there is huge difference in cost which is why 5FU is usually post-surgery.
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

annieliz
Posts: 21
Joined: Fri Jul 26, 2019 5:13 pm

Re: Newly diagnosed rectal cancer

Postby annieliz » Sun Aug 25, 2019 5:48 pm

Hello MeAndMine,

I totally understand how you feel. I am new to this, too, and I'm finding taking things one step at a time and avoiding all of the "what ifs" helps.

Anyway, I recently had my MRI so I can tell you what the process was like for me. First, there were no eating restrictions. When I got to the appointment they inserted the IV needle and because it was an MRI of the rectum and pelvic area, they had me give myself a micro enema. It's not as bad as it sounds!
The first portion of my MRI was without contrast. My recollection was the MRI took about 45 minutes, but they give you a break every 15 minutes or so. During my second break, they administered the contrast via the IV and did the remaining minutes with contrast. I think that's what the "with and without contrast means." The staff who run the MRI are very kind and understanding and make sure you are comfortable (warm blanket, pillow under your knees) and as others have said, they give you a ball to squeeze if you need their attention. I did not feel claustrophobic - the room was bright, and I could see half of the room in my peripheral vision.

My oncologist stated I could continue my multi-vitamin, but took antioxidant supplements off my allowed list. Tylenol is fine as well. At my first oncologist appointment, similar to Mike's experience, he laid out my treatment plan and explained the process and what to expect. You should have a plan in place at that meeting as he or she will have gone over all of your test results at that point.
Whatever you are concerned about, like mouth sores, or any other issues, just mention it to the nurse or technicians. They understand that all of this is new territory for newly diagnosed patients and are happy to answer all types of questions. At least that has been my experience so far.

I am hoping that you get a good night's sleep — I will be thinking of you as you tomorrow!
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

MeAndMine
Posts: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Mon Aug 26, 2019 6:54 pm

I had a consult with Dr Gehr at Dartmouth Hitchcock and he laid out the treatment plan with about five weeks of chemo using an oral medication called Xeloda and daily radiation treatment.


Thanks for the info Mike, my appointment went about the same way & it was nice to know what I might expect! He did blood work after we spoke just to update the numbers & see where they were. I had them done on the 5th so I wasn't sure if he'd do them again. He described the treatment plan as the regular protocol of Xeloda with daily radiation for 5-6 weeks.

Did you take Xeloda 7 days a week? I read your story when I first came to the site but I'll have to go read that stage again. He said most people do fine with it but if it gets hard, you can do 5 days & take the weekend off because it's most important to take it as you're doing radiation. I hope I don't have to stop any. I hope I can get through it all & take the maximum dosage of everything.

He made me an appointment with the radio oncologist but the first appointment they have is next week. Hurry up & wait! He said they would do a trial run to see figure out the exact place to radiate & that it would be about 3 weeks before treatment actually starts.

They sent my Xeloda prescription in but it said it would come through the mail like I believe yours did. Right now they are trying to go through the approval process with the insurance & see where we stand but the doctor said they usually have it on hand at the pharmacy downstairs so maybe I can pick it up after the first one, I'm not sure.

My oncologist stated I could continue my multi-vitamin, but took antioxidant supplements off my allowed list.


Thank you, Annie, for the MRI & the vitamin info. Mine said the same thing, take your multi-vitamin but don't take antioxidants. I asked about D's too but he said for now, just do the multi.

The MRI walk-through you told me really helped calm my nerves a lot. It was a little different in that I didn't get any breaks in between. I have a shoulder issue & boy was it hard to lay there for so long like that. She did many different "snapshots". She would say "this one will be about 4 minutes" & go for it. I counted seconds in my head to try to pass the time. It was a 4 min., a 4 min., another 4 min., then a 5 min. After the 5 minute one, she wasn't there anymore. I said "Did you leave?" but she wasn't in the room so I was laying there about 5 minutes more waiting on the radiologist to tell her the view he wanted on the next scans. She came back in when she knew what he wanted & then did 5 more min. and 5 more again then one more I think. After that, she put the contrast in & said those would go quicker so it was about 3 more of 2 minutes each. I liked counting those the best.

Oh & I didn't get the micro enema. They filled my rectum with a dye instead. She said it was a blue gel & just kept putting syringe after syringe in & asking me if I felt full. I didn't really feel it other than it was cold. Then she said it would leak out but it never did. She gave me something to wear home so it wouldn't stain anything but so far, I see nothing. That worries me a bit, like where did it go? She said the dye would fill the rectum so they could see the layers better.

Regarding the drug, the first time (years ago) I got a prescription from my doctor in advance.

Boxhill, I went to the oncologist before the MRI so he prescribed just what you mentioned, Ativan to take half an hour before my appointment. I really didn't tell much difference in having it or not but my daughter said I just thought there was no difference because it calmed me & I was fine. I imagine without it I would have been less serene!

I tried to focus on diet and exercise during the waiting periods. I just wanted to feel like I was doing something positive.


CF, that's a great goal & one I'm going to work toward. I've been going to so many appointments but they are slowing down for the rest of the week & I can do more. And you were right, they did blow cool air on my face during the MRI which was nice!

The electromagnets used in MRI machines vibrate slightly during the procedure, which is what makes the noise. However, it's no louder than sitting in the cabin of an aircraft - around 90dB.

Thank you Julie, that description helped a lot & they did give me ear plugs. It wasn't bad at all, thinking of it the way you described!

From my understanding, the CT is a great tool for finding cancer in the liver/lungs (which yours didn’t—yay!)

Punky, that makes a lot of sense. I'm learning more about what these tests do every day. And thank you for always cheering me on!

Maybe find something nice you (and the family?) like doing and try to immerse yourself in that for a few days!

I'm going to take that advice, Rock & try to forget about tests & doctors for a few days & try to enjoy each other!

NCCN Guideline for Rectal Cancer Patients
https://www.nccn.org/patients/guideline ... index.html

Thank you for the link Jacques! I'll send it to my kids to read up on also.

Also, one huge help is that I started a binder right away. I printed out a calendar and began writing all appts along with phone numbers and contact info.

Silver, that is an excellent idea & helps me to keep it all in once place. The kids like things digital so they put everything where they can get to it & I keep the binder with pages I can write in, along with business cards & a printout of the digital calendar.

This really is an awesome place to come to if you are in the CRC club.

Soccermom, I appreciate you all so much. It's so nice to have a heads up when you're going into something new. I always have lots of questions & am very thankful for the answers. I'm thankful I found you all.
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: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Mon Aug 26, 2019 7:11 pm

Did you take Xeloda 7 days a week? I read your story when I first came to the site but I'll have to go read that stage again. He said most people do fine with it but if it gets hard, you can do 5 days & take the weekend off because it's most important to take it as you're doing radiation. I hope I don't have to stop any. I hope I can get through it all & take the maximum dosage of everything.


I took Xeloda on the same days as the radiation so five days a week. The adjuvant chemo (chemo after surgery) was seven days a week. BTW, I recommend some kind of diary on when you take the Xeloda; if for no other reason, then so that you know whether you've taken it or not so that you don't accidentally take it twice. I think that it's a good idea to try to take it at the same times every day. If you have an early radiation appointment, then it can be a rush to prepare for it as you have to make sure that you drink all of the water, then travel to the appointment and get set up.

He made me an appointment with the radio oncologist but the first appointment they have is next week. Hurry up & wait! He said they would do a trial run to see figure out the exact place to radiate & that it would be about 3 weeks before treatment actually starts.


It was similar to what happened with me They have to figure out where to apply the radiation and they put two tiny tattoos on your body for alignment for the treatment.

Radiation is another lengthy topic but you have some time to read up on it before you start.

They sent my Xeloda prescription in but it said it would come through the mail like I believe yours did. Right now they are trying to go through the approval process with the insurance & see where we stand but the doctor said they usually have it on hand at the pharmacy downstairs so maybe I can pick it up after the first one, I'm not sure.


I had a fair number of problems with our mail-order pharmacy and there were some close calls where I didn't think that I'd get them in time. I spent a lot of hours on the phone with the mail-order pharmacy and always managed to get the Xeloda but it was a lot more effort than it should have been. I guess the reason is the cost of the drugs. The name-brand stuff is about $8,000 for the 28-day supply. Generics are a lot less but the amount is still considerable. If you can get them from a pharmacy, then you control when you get it. If you have to use mail-order, get the stuff ahead of time if possible. Also make sure that you get the right number of each kind of pill. The pills come in two mg amounts and you need to be able to add them up to the amount that you are prescribed and the overall numbers of pills will allow you to take the right doses in the morning and evening.
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

Jacques
Posts: 497
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Mon Aug 26, 2019 10:34 pm

NHMike wrote:... Radiation is another lengthy topic but you have some time to read up on it before you start....

MeAndMine -

If you want to do some reading on radiation, you could start here:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936&p=372445#p372445

MeAndMine
Posts: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Tue Aug 27, 2019 7:46 am

If you want to do some reading on radiation, you could start here:

https://coloncancersupport.colonclub.co ... 45#p372445


Thank you for the link. I'm really worried about that. The surgeon said it'll be like a little sunburn. I haven't met with the actual radiation team yet but hopefully they'll tell it like it is & not downplay things so I can be on top of it!
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: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Tue Aug 27, 2019 7:48 am

BTW, I recommend some kind of diary on when you take the Xeloda


That's an excellent idea. I have a hard time remembering if I did something if it's a daily thing. I will think I did it & then think, "Maybe that was yesterday?" If I write it down, I will know it is done.
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

Soccermom2boys
Posts: 212
Joined: Tue Nov 10, 2015 10:29 pm

Re: Newly diagnosed rectal cancer

Postby Soccermom2boys » Tue Aug 27, 2019 6:56 pm

Even better, buy a pill box that does a.m. and p.m. for the week. They are only a few bucks at pharmacy and for sure helps to see if you have taken it at both times during the day. I would then sit down on Sunday night and count out the pills for the following week.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Jacques
Posts: 497
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Wed Aug 28, 2019 12:17 am

MeAndMine wrote:...The surgeon said it'll be like a little sunburn. I haven't met with the actual radiation team yet but hopefully they'll tell it like it is & not downplay things so I can be on top of it!

MeAndMine -

I think that if you ask focused questions the radiation oncologist will attempt to give answers if he has the information. I get the impression that they don't like open-ended questions.

For example, a focused question would be something like, "If I have a tumor located on the rear wall of the lower rectum, is the radiation likely to cause tailbone pain afterwards?" This is the kind of question they can handle, in my opinion.

On the other hand, if you ask an open question like, "What's the radiation going to be like for me?", it puts pressure on them to choose a suitable answer from among a very wide range of possibilities, which may be a bit difficult for them to do, so you end up getting a very shallow, generic answer.

In my meetings with doctors, I usually came in with a prioritized list of focused questions, and that usually worked out OK.

MeAndMine
Posts: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Wed Aug 28, 2019 6:28 am

Thank you all for the suggestions!

I was just going over the blood tests from Monday. My CEA is up from 3.9 to 7.1 in just a week. That seems so fast! My platelet count & BASO% are also high.

It's scary to read reports.
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: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Thu Aug 29, 2019 7:13 am

I've been trying to think "one step at a time". I'm trying not to think too far ahead but it's getting the best of me.

How did you get ready for Xeloda & radiation? Both doctors have said the Xeloda is not bad & the radiation is like a sunburn but not much more than that. I haven't seen the actual radiation oncologist yet & won't get to until the end of next week. On one hand, I'm ready to get going! On another, I feel okay right now & don't want to feel bad. It's still 2-3 weeks off from starting treatments I think.

Did you do any special prep to prepare your skin for radiation? I know I read not to use zinc based products once you start. I used to use Desitin on summer rashes or burns but I think it's hard to wash off so I won't buy that. I have read so much but at the time I didn't take notes like I should have at the time. I'm wondering if there is anything I can start using before hand to help out or what products I should buy now to have on hand.

I remember we used to put cream or lotion on our hands & feet & sleep with them in a plastic glove and/or socks to combat rough skin. I asked the doctor about that for the hand foot syndrome & he said, no, just put lotion on like normal. Did you all have any tricks for that?

I'm going to read back through the threads & take notes, but thought I'd ask in case any of you found a product recently that you thought was really good at taking care of the issues.

As for exercise, I believe they say it's a good idea to at least walk every day & keep moving to help with fatigue. I read that you should not do anything that causes friction on your feet or hands to combat the hand/foot syndrome but I think making sure you are walking/exercising should be a top priority to feel your best, right? I'm also a big crafter so I was planning lots of crochet/knitting projects while I'm resting in between. I wonder if that kind of pressure would be a problem.
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: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Thu Aug 29, 2019 7:49 am

MeAndMine wrote:I've been trying to think "one step at a time". I'm trying not to think too far ahead but it's getting the best of me.

How did you get ready for Xeloda & radiation? Both doctors have said the Xeloda is not bad & the radiation is like a sunburn but not much more than that. I haven't seen the actual radiation oncologist yet & won't get to until the end of next week. On one hand, I'm ready to get going! On another, I feel okay right now & don't want to feel bad. It's still 2-3 weeks off from starting treatments I think.

Did you do any special prep to prepare your skin for radiation? I know I read not to use zinc based products once you start. I used to use Desitin on summer rashes or burns but I think it's hard to wash off so I won't buy that. I have read so much but at the time I didn't take notes like I should have at the time. I'm wondering if there is anything I can start using before hand to help out or what products I should buy now to have on hand.

I remember we used to put cream or lotion on our hands & feet & sleep with them in a plastic glove and/or socks to combat rough skin. I asked the doctor about that for the hand foot syndrome & he said, no, just put lotion on like normal. Did you all have any tricks for that?

I'm going to read back through the threads & take notes, but thought I'd ask in case any of you found a product recently that you thought was really good at taking care of the issues.

As for exercise, I believe they say it's a good idea to at least walk every day & keep moving to help with fatigue. I read that you should not do anything that causes friction on your feet or hands to combat the hand/foot syndrome but I think making sure you are walking/exercising should be a top priority to feel your best, right? I'm also a big crafter so I was planning lots of crochet/knitting projects while I'm resting in between. I wonder if that kind of pressure would be a problem.


I really didn't look ahead that much. I saw other people with scary stories but I didn't think that much about it. The thing is that you will see scary stories here on just about every topic. But you'll also see good stories and we don't know how our story will be until we get into it. It could be that you tolerate Xeloda and Radiation well or it could be difficult. When it's difficult, you ask questions and the folks here provide things that can help a lot.

Neo-Adjuvant Xeloda is not bad. The Xeloda dose after surgery is a lot higher. But that's for me. I know some that took the Xeloda and it made them quite tired.

I would characterize radiation as quite a bit more challenging than sunburn. The idea of radiation is to kill a tumor inside your body so it's going to necessarily damage everything between the outer layer of skin to the tumor. It will likely cause problems like constipation or diarrhea or both and there may be considerable pain going to the bathroom. The positive thing is that the pain typically doesn't show up until around the third or fourth week and that it is finite (mine was gone two weeks after the end of treatment). You can also see the tumor shedding and feel it getting smaller, at least I could because mine was so large.

I did not use anything for my skin though they did provide me with a bunch of samples. One big help for me was [*][*]Everlasting Comfort Memory Foam Seat Cushion Designed for Back, Hip, and Tailbone Pain - Fits Office Chair and Car that I ordered from Amazon. I still use it today in my home office chair. It helps take pressure away from the spot that gets hit with the radiation. I sometimes used it on long drives too.

https://www.amazon.com/gp/product/B01EB ... UTF8&psc=1

My oncologist recommended two walks of ten minutes per day at a minimum. He told me that some patients couldn't do that. He also told me about a patient that asked if it would be okay to run a half-marathon while on chemo and radiation. So the range of people and their capabilities is very wide. I did walk, run, do weights and play tennis while on chemo and radiation - but I'd say that I only had about one-third the stamina compared to normal. The treatment kills your red-blood-count so your body can't get anywhere near as much oxygen to your muscles.

Here's a video of me (on the right) hitting tennis balls on the next-to-last day of chemo and radiation.

https://www.youtube.com/watch?v=R_ipaq4HTk0

I was able to work full-time through treatment and my oncologist told me that the majority of people on treatment work through it. I have run into some people (on another board) that said that they felt like sleeping all day on Xeloda.

They will ask you to drink about 24 ounces of water 1/2 hour before radiation. This is important stuff as the water will absorb radiation so that it doesn't inadvertently hit other organs. It can feel unpleasant to hold the water, particularly when you're on the table and feel like freezing into position as the radiation is applied. During radiation, you can hear the arms moving into position and then there's a different sound as the radiation is applied. I always tried to remain as still as possible. I think that the machine aligns based on the tattoos and then applies the radiation so moving out of position wouldn't be a good idea.

You probably have about two weeks before you feel the effects of the treatment so you will get somewhat used to the routine before you get hit with any side-effects.
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: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Thu Aug 29, 2019 8:47 am

One big help for me was [*][*]Everlasting Comfort Memory Foam Seat Cushion Designed for Back, Hip, and Tailbone Pain - Fits Office Chair and Car that I ordered from Amazon.


Thank you for your comments, it really helped to read! My husband has the seat cushion similar to yours. I have a more donut shaped one but it has like a bump in the front that is weird & I can't figure out what the point was in that. I will try my husband's cushion out to get it on order before treatment.

Here's a video of me (on the right) hitting tennis balls on the next-to-last day of chemo and radiation.

You make it look easy! I know you weren't feeling up to par but you look so strong. I will do some walking. Hopefully I can keep the right mindset & get out & enjoy the cooler temps we should be having before long.

I think that the machine aligns based on the tattoos and then applies the radiation so moving out of position wouldn't be a good idea.


What position were you in the machine? Is it like an MRI? Was it very long? My shoulder is the thing that gets me in all of these routines. One of them I had to have it over my head & it was hard but doable with some pillows for it to prop on. Then one wanted it up but settled for that arm to be down & the other up. The MRI was arms down but was so long it that position that it ached to hold it that way, too. I'll manage it, but just wondering what to expect.

I am so glad to have found you all & feel better prepared being here!
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: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Thu Aug 29, 2019 9:26 am

MeAndMine wrote:What position were you in the machine? Is it like an MRI? Was it very long? My shoulder is the thing that gets me in all of these routines. One of them I had to have it over my head & it was hard but doable with some pillows for it to prop on. Then one wanted it up but settled for that arm to be down & the other up. The MRI was arms down but was so long it that position that it ached to hold it that way, too. I'll manage it, but just wondering what to expect.

I am so glad to have found you all & feel better prepared being here!


I was on my stomach. The machine is used for all different kinds of cancer so there are all kinds of positions I assume but I think that you're on your stomach for rectal cancer.

The table is fairly narrow and you have to step up on something to get on it. They put pieces of stuff on it to hold your body and put towels on it. You might ask to see the table or room when you meet the radiation oncologist.

Sometimes your appointment is delayed because a patient takes longer than expected. It can be hard to hold the water in if you have to wait an extra 30 to 60 minutes.
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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