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Newbie here. A few questions

SonicSedition's picture
SonicSedition
Posts: 7
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: 669
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: 7
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: 669
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: 39
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: 7
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: 669
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: 39
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: 7
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: 46
Joined: Dec 2017

why is your doctor suggesting chemo on t3 no mo

 

danker's picture
danker
Posts: 1137
Joined: Apr 2012

 

Look up my history, as I started like you.

mp327's picture
mp327
Posts: 4234
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: 7
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: 202
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: 5330
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: 135
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

 

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