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Newbie here. A few questions

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Hey Everyone,

Newbie here. Like most of you, I never thought this would be a forum I would be joining, but ... here I am. I'm sure I will be inundating you guys with all kinds of questions and I'm glad an outlet like this exists for us. Thank you ACS! Personally, I am in good spirits considering, and trying to stay positive. I'm sure this helps. 

Recently diagnosed about a month ago with colorectal cancer, small but deep. T3 N0 M0 stage IIa. I am about to start a 5 1/2-week round of Chemo (pills, Xeloda)  and Rad 5 days a week. Like most of you I've spent mega hours doing research but thought I'd get some firsthand experience from you guys. I do realize that everyone has different experiences with these chemo drugs/radiation, but I figured I'd ask. At least to get a sence of what to expect. 

So, if any of you out there have, or are going through this, I would appreciate you sharing your experience.Thanks!

 

 

 

 

Mikenh's picture
Mikenh
Posts: 739
Joined: Oct 2017

I went through the Neo-Adjuvant chemo routine that you are about to start.

The radiation started to get painful for me about 2-3 weeks into it and got progressively more painful in that it made holes and things could go out through those holes. The rectum was affected as well and there may have been pain there. The pain went away two weeks after finishing. In general, they'll ask you to drink a fair amount of water 30 minutes before your appointment. The actual radiation treatment doesn't take that long once you get started. Maintain communication with the radioilogy doctor and staff as they can offer stuff to deal with the pains. There are some that have had quite a bit more problems than I have had.

You should have taken a Chemo Course at your hospital or oncologist's place. That gives you an overview of issues related to the Xeloda. It will likely clobber your Red Blood Count and White Blood Count so you will be more susceptible to getting sick from other people. You may also feel a lot more tired or have a lot less stamina as you go through it. This went away for me two weeks after finishing the course. Side effects from the Xeloda that I've seen are Hands and Feet and they manifest in me as my hands and feet feeling arthritic. I didn't have these symptoms during Neo-Adjuvant chemo/radiation but I have them now in Adjuvant chemo (chemo after surgery). I've read that it can become permanent in some people. Others can have it for 6, 12, 18 months.

I had difficulties with my mail-order pharmacy for the chemo drugs. I recommend ordering them the week before you need them if you're using a mail-order pharmacy so that there will be time to fix communications errors. My insurance company requires the use of a mail-order pharmacy for chemo drugs. Otherwise I'd go to the local drugstore.

You can get constipation and diarreah from the chemo and radiation and I found it helpful to take Miralax for constipation. There are a few other things that are recommended.

If you get diarreah, then make sure that you take plenty of fluids and take something to replenish electrolytes.

I used Depends Shields (for men) which are a small pad (I used two of them) with adhesive that you can attach to your underwear. This was to catch leaks. I had small leaks from the radiation and the Shields took care of them.

Welcome to the board and feel free to ask questions.

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

I can tell by both responses so far that this affects people differently from one end of the scale to the other. Getting my targeting CT tomorrow at Rad and will know when we are starting. How long was it from your first rad evaluation to when you started the Neo-Adjuvant chemo routine?

Mikenh's picture
Mikenh
Posts: 739
Joined: Oct 2017

I think that it was a week before. I checked my calendar but I didn't put it in there. This is the thing where they marked you with tattoos and figured out the alignment, measurements, placement, etc. They gave me the schedule on Friday of the week before I started (on Monday).

Nazareth
Posts: 41
Joined: Nov 2017

i went htrough this too- for me i never had any pain with hte radiation- but did get slight 'burning' on the abdomen- but it didn't hurt at all- You must keep up on hydration as it can cause kidney damage if you get dehydrated- buy plenty of gatoraid for the duration- drink plenty of plain water too- You can try loperamide for the diaharheah and ask about lomotil as well- also add some metamucil to help try to combat the D- I was taking 2 spponfuls 3 times a day and it helped some-

 

As mikenh said- be prepared for exhaustion- They will keep tabs on blood cell counts- and will delay chemo if they get too low or high or whqatever-

 

Tell you doctor RIGHT AWAY if you start gettign Peripheral Neuropathy- as this can becoem permament and is not pleasant at all- infact it can becoem downright debilitating- I didn't mention the tingling in my feet and hands until it was too late- because I didn't really recognize what was going on- didn't know about
Peripheral Neuropathy at the time-

It will seem like it's taking forever, but will soon be over- just deal with hte setbacks as they come- and don't get too discouraged abotu the setbacks- they just come with hte game- Listen to your body- get plenty of rest- try to get soem excersize if possible- if not don't worry about it- let htings run it's course-

Sorry ya gotta go through it- but it may not be all that bad- met several peopel who hardly had any complicaitons of side effects at all- everyone is different-

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Thanks for your comment. One thing I have realized is that everyone is different in how this will affect you. 10-4 on the water and I already drink a lot now and always have since I also have Stage 3 CKD. (Chronic Kidney Disease).

I've done so much research and it is exhausting. And my team are all awesome, so I will heed your advice and if my body tells me something, I will get hold of them immediately.

 One thing I have been wondering is even at it's worse are most people bedridden or are you able to sit up, walk around, watch TV? Guess that depends on the effects but just curious how it was with you?

 

Mikenh's picture
Mikenh
Posts: 739
Joined: Oct 2017

Here's a video of me on the next-to-last day of chemo/radiation.

https://www.youtube.com/watch?v=R_ipaq4HTk0&t=184s

I'm on the near side. I worked through chemo/radiation though I worked a lot more from home than usual to avoid getting sick - though I probably didn't have to do that. It helped that the Radiation place is 15 minutes away and on the way to work.

I checked my Garmin activity log and I averaged 55,000 steps per week on chemo and radition.

 

Nazareth
Posts: 41
Joined: Nov 2017

[[I've done so much research and it is exhausting.]]

.

I know how you feel- I have a muscle problem where my muscles are weak and get run down very easily- I've researched and reasearched, and researched- and becoem quite discouraged not finding answers- and yes, exhausting too-

.

I was able to go out and do thingsl iek shop for food, get mail etc- but mostly i just stayed at home durign the period (well, that is when i wasn't running back and forth to doctors)- and just rested and slept whenever the urge to sleep was strong- I found myself falling asleep mid conversations sometimes- it just was so overwhelming for me at times- usually arou8dn evening time, after dinner- It took about 3 weeks afte3r i stopped treatments to get back into usual routine- but the endurance did come back- It felt like it wasn't going to for awhile htough- I'm still not fully recovered, but better than i was and gettign better-

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Thanks for the information. I really appreciate your insight. I realize at best, this is going to really suck! But, I'm tring to maintain a possitive attitude and gain all the info I can to get through this best I can.

Worriedchild
Posts: 51
Joined: Dec 2017

why is your doctor suggesting chemo on t3 no mo

 

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Hey WorriedChild. When I first saw my Cancer team and they did the exam, they had a hard time finding it as it is very small but we didn't know at the time how deep. They discussed it and said that pending the outcome of the MRI, which ended up T3 borderline T4. We didn't know that at the time. So they said I may be going directly to surgery. After the MRI came back I met with the team and they recommended that we shrink or possibly even eliminate it prior to surgery. I did a ton of research and decided that I want to do whatever it takes to give myself the best outcome. Obviously, it was my choice and the direction I decided to go even though the chances of complete eratication are only 10-15%.

danker's picture
danker
Posts: 1150
Joined: Apr 2012

 

Look up my history, as I started like you.

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

So sorry you have a reason to join this group, but am hoping you'll get lots of good information that will help get you through treatment with the least amount of side effects and how to deal with the ones you do experience.  I was treated in 2008 and the good news is I'm still here, after receiving 30 radiation treatments and two rounds of chemo.  I can't say it was fun or easy, but it was doable.  Since you haven't begun treatment yet, you have an opportunity to learn as much as you can, which I did not have prior to treatment, not being a member of this or any other online support group at the time.  The people here will give you as much info as possible if you'll let us know what you need. 

Hopefully, treatment and ways to manage side effects have improved in the 10 years since I had treatment.  Things you definitely want to ask your doctors for ahead of time are:  1)  Pain meds;  2)  Anti-diarrheal medication;  3)  Anti-nausea meds.  You may not need all of them, but having them on hand is important.  A common side effect is mouth sores, so you may want to ask about that, too.  My oncologist prescribed "Magic Mouthwash."  My mouth became very tender, so eating some foods became impossible.  Think of foods that you like that are soft and easy to eat and have them on hand.  Note that my appetite really tanked towards the end of treatment and there were very few foods that I even wanted to eat, so weight loss was a real issue for me.  If you are already on the lean side, you might want to gain a few pounds prior to starting treatment.  I got so thin, my doctor threatened to put me in the hospital for IV nutrition.  Fortunately, I was able to not drop any more weight.  I would also line up a driver to get you to and from treatment in the event you find it too difficult to drive yourself.  This may not happen, but it's good to have someone who is available just in case.  I slept a lot and got very weak, unable to climb the stairs in my house without stopping mid-way to rest.  I didn't feel like doing much of anything.  If you have someone who can help a bit with any chores or cooking meals, that would be great.

The bottom line is this treatment effects everyone differently.  You may or may not experience some or all of the side effects that I did.  But that said, it's good to be prepared.  If I had had more information I would have taken my pain medication at the onset of pain and kept up with it and also would have drank more water.  Those two things I highly recommend. 

You will get through this, you will.  It may be rough towards the end, but we are here to help you, so let us know what you need.  I wish you all the best and hope you'll keep us posted when you are able.  Soon you'll be on the other side of this in recovery mode, so keep your eye on the prize.  You can do this!

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Thank you for your response. I have done tons of reseearch for over a month and have prepared myself for worse case scenario. That way, if it's less, that will be a plus. Thankful for this forum!

darcher's picture
darcher
Posts: 244
Joined: Jun 2017

  You're just getting started and it can be a wild ride.  I started about a year ago.  I was expecting the worst with radiation and chemo (xeloda).  I got set up with 28 sessions of it at first for pre-surgery.   By all appearances the radiation wasn't having an affect. Not at first anyhow.  Post treatment is when I got the wind knocked out of me. Certain side affects are very possible.  Watch out for the burning sensation when you urinate. That's a precursor to getting retrograde ejaculation.  Numbness in fingers and toes.  That's tied to the xeloda.  Got that one too but it didn't happen until the follow up phase post surgery.  4 months of Xeloda will make you feel like the walking dead after a while.  You might want to lighten up on the reading.  The mental side of this can be just as crippling as the physical.  All the stats will get depressing after a while and when you've got this you're much more susceptible to it's impact.  You'll need to trust the doctors opinions since it would take many years to catch up to their knowledge level in order to make an informed decision.     

Annabelle41415's picture
Annabelle41415
Posts: 5536
Joined: Feb 2009

Welcome to the boards and glad that you found us.  First off, don't go on the internet to get your information as it is very outdated.  The treatment you are about to receive is pretty common, radiation is easy to go through but can give you burns inside and out and it is cumulative so you won't recognize it until it happens.  I'm not sure if you have rectal cancer or not.  It is doable to get through all of this, but sometimes coming on here is a blessing as we can answer most of what you are going through.  Wishing you well and if you have any specific questions, please let us know.

Kim

tanda
Posts: 147
Joined: Jan 2015

It appears that you are being treated for colon or rectal cancer?  Most of the people in this particular group have anal cancer.  The treatment for a.c involves CONCURRENTchemo/radiation

Radiation is usually for 5-6 weeks.  Chemo is usually concurrent with the radiation and can either be Xeloda or Mitocmycin/5FU  infusion for 5 days in the beginning and 5 days at the end of treatment.

Although everyone reacts somewhat differently  the time frame and the dosages are probably different than what you mentioned.  AC patients don't always have surgery.

You will get excellent support and information on this site.  There are also some excellent Colon Cancer sites (ie Colon Cancer Alliance, acor.org (colon community) etc

 

Wish you the best...stayin touch...we can all speak to how to manage side effects

 

Trubrit's picture
Trubrit
Posts: 4296
Joined: Jan 2013

You are in the right place here on the CRC forum. 

I personally did the surgery before chemo and then chemo & radiation. Compared to the radiation, the surgery and first chemo were a doddle. Each person reacts to chemo and radiation differently. Some breeze through it, others suffer.  You will not know how it will effect you until your into it.  

It is good to be prepared for the good, the bad and the in-between. 

We're here for all of your questions. 

Tru

tanda
Posts: 147
Joined: Jan 2015

This is the anal cancer discussion board...there is a separate Colorectal Cancer Board

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Sorry, I didn't realize that. I thought by the breadcrub trail on the page I was in the correct board. Discussion boards › Cancer specific › Colorectal Cancer

Trubrit's picture
Trubrit
Posts: 4296
Joined: Jan 2013

I scrolled to the top and it says Colorectal Cancer Forum.  I rarely as in almost never visit the Anal board. 

Maybe the forum is having a problem.

Edit: I think this may be showing up on both the Anal forum and the CRC forum.  It looks like the initial post was on the Anal forum and the mods moved it, and now its showing up on both.   See, I got it sorted Cool

Tru

sephie's picture
sephie
Posts: 651
Joined: Apr 2009

hi,,, i hit the anal cancer discussion tab which is the first one listed on discussion..... i have been coming since 2009 so i dont know what has happened to our discussion but Anal cancer is very different from rectal or colon.....so now, i am struggling to read all the posts from everyone..... I do not chime in as often as i used to because it would be reptitious..... but we all have problems so i will try to see why these different cancers have crossed on this site.....sephie

Trubrit's picture
Trubrit
Posts: 4296
Joined: Jan 2013

Its only this one post. 

Our new friend, SonicSedition posted on the Anal forum, and the mods moved it to the CRC forum. I believe (which means I don't know for sure) that the post is now visible on both forums. 

Hope this helps.

Tru.    P.S. LOVE THE MODS and all the work they do -

SandiaBuddy's picture
SandiaBuddy
Posts: 416
Joined: Apr 2017

Are the mods the ones that dress in bright colors and say "yeah man" a lot?  Just joking, of course,  I was telling someone about the "Mod Squad" today.  Anyone else remember that TV show?

https://www.youtube.com/watch?v=e0-XrZoHj2k

https://en.wikipedia.org/wiki/Mod_(subculture)

Trubrit's picture
Trubrit
Posts: 4296
Joined: Jan 2013

When I was very young, there were the Mods and Rockers in England.   

Lots of leather and bikes and the usual youthful dissatisfation.  - Maybe thats where the Rolling Stones got their song from 'I can't get no, Satisfaction' HA! 

Tru

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

The reason you were directed to this board is because you clicked on the topic of discussion on the anal cancer board that was moved to the colorectal board by the admins.  It threw me off too.  The anal cancer board is still there as it has always been in the past.  If you go back to anal cancer and click on any of the other topics besides this one, you will still be in the anal cancer board.  I hope this answers your question. 

JanJan63's picture
JanJan63
Posts: 1933
Joined: Sep 2014

SS, you're in the right place. This is the colorectal cancer forum, like it says at the top. 

As to what you've asked- for me the radiation was easy and I had no issues. I had chemo at the same time and it made me very tired and made me feel crappy but it wasn't the oral Xeloda, it was 5FU. I was on Xeloda last summer and it wasn't too bad but it did cause some fatigue and sun sensitivity. The sun sensitivity made me feel like I was burning almost immediately when I was in the sun and I'd burn quickly. It was unpleasant but was probably the least amount of side effects of any of the chemos I've been on. It never bothered my stomach.

Sorry you found the need to be here.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 5536
Joined: Feb 2009

You are on the right board colo/rectal board.  A lot of anal cancer people come on this board because there is not much discussion on their board (didn't know they had one - so sorry) because it is the closest to their cancer.  Please continue to come on this forum and ask your questions as you will get a lot of people that can help.

Kim

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

I have been on the anal cancer board for years and I beg to differ.  There has been a tremendous amount of discussion there over the years.  It may be a little quiet right now, but I can assure you that if someone new comes on there, they will get support.

Trubrit's picture
Trubrit
Posts: 4296
Joined: Jan 2013

that these two forums have crossed.  Lots of new friends to make, in my opinion. 

I am sure Kim didn't mean that your forum didn't have good discussion, just that like ours, it can run a little slow. 

I joined back when our forum was running by pages ever day, but now has slowed down - wish that meant less CRC, but alas...... - 

I have popped over to the anal forum and gained lots of great knowledge, especially concerning raditation side effects.  

Like I said above, I think that this thread is visible in both forums, due to the mods initially moving it. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 5536
Joined: Feb 2009

I'm so sorry if that was stated incorrectly by me.  When starting here the anal cancer board wasn't very active or didn't even know about it.  I'm sure that there is very great wealth of knowledge over there and if I've misspoke I'm sorry.  This whole support system on the ACS is awesome and no matter what site we are from there is always wonderful, caring people.  Wishing you continued health.

Kim

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

No offense taken.  However, one topic that has been discussed often on the anal cancer board is the stigma associated with AC that does not exist with colon or rectal cancer.  As someone who has suffered through that, I have been so appreciative of the frank discussions and support that I've gotten from other AC survivors in that regard.  The "bottom" line (no pun intended), is that these are different types of cancer with some commonalities, however, likely causes and treatments are not the same.  All that said, support is support, no matter who or where it comes from.

Annabelle41415's picture
Annabelle41415
Posts: 5536
Joined: Feb 2009

You are right - the treatments are probably not the same just like mine was rectal cancer and most others here are colon cancers and the treatment is different.  I'll have to check out the AC board as I'm suffering so with issues closer to the "bottom" with terrible bathroom issues than the colon patients.  Thank you for your support on the boards.

Kim

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

You are most welcome to search the AC board and present your current issues there to seek out information and support. 

dln1014
Posts: 5
Joined: May 2018

I am brand new and have been reading everyones posts. I'm a survivor of stage 3B anal cancer for 7 years and just want to be sure I'm in the correct place. Having some major issues for the last few years from chemo and radiation. I'm only 53 and it's really made my life pretty much nonexistent. Just wondering if I'm the only one alone here.

JanJan63's picture
JanJan63
Posts: 1933
Joined: Sep 2014

You're not alone on this forum. I'm wondering what's the difference between anal and rectal cancer, though. Like you, my life is not and probably never will be the same. I am so grateful for the days when I feel almost normal and they are few and far between. Right now I've been feeling good for a couple of months but I'm worried about when the axe is going to fall again. I hate that. Not being able to fully enjoy life anymore.

Jan

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

Obviously, the first difference between anal and rectal cancer is the location.  Secondly, they are treated differently because, typically, the type of cancer cells are different.  While there may be some similarities, these are two different types of cancers.

"Anal cancer is a rare type of cancer that arises from the lining of the anus. The anus is lined by skin cells and, as a result, most of the anal cancers are squamous. (The word “squamous” refers to cells that are thin and flat, most often skin cells.) On the other hand, the rectum is internal and is the lower part of the colon that connects the colon to anus. As rectal cancer arises from the mucosa or lining, it is typically an adenocarcinoma (in other words, cancer of glandular tissue).

There is an association between HPV and anal cancer, as HPV is found in some of the cases. The risk of HPV infection increases with increased sexual activity. There is also an association between anal cancer and HIV infection, as well as being a smoker."

https://www.everydayhealth.com/colon-cancer/specialists/how-to-figure-out-if-cancer-is-anal-or-rectal.aspx

Wisteria83's picture
Wisteria83
Posts: 155
Joined: Feb 2017

When I was first referred to the surgeon, the papers said "Rectal Cancer."  Later, after scans and other pre treatment testing, it is still listed as Anal/Rectal CA.  So which is it?  I was treated with the Nigro Protocol, and all signs of cancer are gone.  Even the surgeon who did the biopsies (and dealt with the hemorrhoids) said it presented differently than what she had seen before.  It was WAY up inside the anus and kind of into the rectum.  Turned out to also infiltrate the vagina too.  Now, after treatment is complete...by over a year, my records still refer to it as Anal/Rectal cancer.  Whatever it was, it's gone now, thank goodness.

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

There is an anal cancer board too, so please check it out.  I normally post on that board.  I'm glad you have reached the 7-year survivor mark, but sorry to hear you are having some serious issues.  Please explain and perhaps we can help, either here or in the other group or both. 

linda7408
Posts: 12
Joined: Mar 2018

Hi there! I started with rectal cancer. Had 28 rounds of radiation first. I never had a problem until about the last 3.  It was painful and just made me feel a little beat up in that area.

Next I was to have 8 rounds of FOLFOX. I got through half of it (they gve you meds for nausea and anything you have) and I started getting serious pain when trying to go to the bathroom. After surgeon checked with scope, it didn't hurt anymore. However we did surgery anyway. They were afraid rumor was growing. So, I had the rectum, spincter and anus removed. Then I finished the rest of the chemo. All in all its about a 12 month fix.

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Hey everyone! Want to thank you for all your assistance. only 3 days left of my 28-day treatment. I can say I am very fortunate that the side effects were/are very minimal. I've experienced little chemo (Xeloda) side effects. Doc said I should be thankful because I'm like in the 10% or less range of the average patient. No pain so far from the radiation, but just now started experiencing the diarrhea (using Imodium) and the urination frequency/urgency issues (no meds for that). Hopefully this will subside once I’m all done. Next, exam from surgeon next week and then I'm sure another MRI to see where we are at. Then surgery. Thanks again for everyone’s help and concern. It means a lot.

Kim Gaia
Posts: 63
Joined: Mar 2018

Good luck on your final 3 days Sonic Sedition, and your upcoming exams.

kim

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

I'm glad you are doing so well through treatment and I hope the last 3 days go well for you!

Ottawamarc1234's picture
Ottawamarc1234
Posts: 75
Joined: Feb 2018

Feeling better in some ways but other strange after effects as well. The 'hole or fissure' the Rad burned into me is my big hurdle these days. Treating it as a 'Fissure'.

 

Strange muscle pains and tingling sensations continue 34 days after. Old male 56 and a slow healer I guess. Follow up MRI late September.

 

Best of Luck to you.

SonicSedition's picture
SonicSedition
Posts: 17
Joined: May 2018

Haven't been around for awhile but wanted to update my status. Saw my surgeon last week and my MRI showed a reduction of about 60+ % of the tumor Smile 

Surgery is schedule for Sept 5th and since it's shrunk so much and back from the sphincter, I may not need a permanent colostomy. Issue is that would mean a second operation. Of course she said once she gets in there that may change. Apparently, if shes able to cut out the section and hook everything back up, there is still up to a 30% chance of it leaking and all kinds of incontinence etc issues. Can anyone here let me know your experience. I'm not so sure I wouldn't prefer one and done. Millions live with a colostomy and I'm retired so not really concerned about work etc etc.

Trubrit's picture
Trubrit
Posts: 4296
Joined: Jan 2013

That is good news. 

We have several folks who have experience with colostomy and reversals. I'm sure they will pop along soon to share their advice. 

I will be thinking of you on the 5th. 

Tru

plsletitrain
Posts: 186
Joined: Jul 2017

Mine is reversible but I didn't have it reversed by choice.  I'm very comfortable with it.  Miles way better than when I didn't have this.  There's really no issue except that you just have to handle it well so that it won't easily leak.  Its very convenient because I just drain it when its full.

mp327's picture
mp327
Posts: 4329
Joined: Jan 2010

I'm glad you got good news on the shrinkage of the tumor.  May your surgery go well on September 5th.

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