G'day There

I'm glad that I came across this site,  Its  real  scary getting diagnosed with T3 N1 this july4th.  Tumour taking up 1/3 of rectum and thru the wall into 2 lymph nodes and pressing up against the sacrum also lump in liver and lung. Pet scan didnt show a definite link but surgeon says they're not 100% accurate and will know more once they open me up and see the full extent.

It's been slowly building up with a very painful bad back kind of pain - like someone trying to strangle your spine, along with the feeling of needing to go to the toilet all the time - lots of farting and very small poo with blood. Have just started taking some painkillers and am hoping i dont get too constipated as it hurrts enough as it is.

I start radio/ chemo this week to shrink it down before surgery

Well thanks for reading and drop me a line if you want to share your experience or give me a bit of an insight into what's in store for me.

Mickb 

Mickb,

Yep, you hit the nail on the head.  It is scary getting diagnosed but remember it truly is NOT the end of everything.  I was diagnosed last June ('06) and am doing well.  Originally diagnosed as T3N0M0 (final surgeon later said should have benn T2N0M0) so I know a fair amount about what you are going through.  My tumor encompassed about 75% of my rectum.

Radiation is a good first step.  Since you didn't state how old you are, I will tell you that I was just shy of 50 when I started my radiation.  Within weeks, you will notice a difference as to how much your pain will go away and how much easier it is to go to the bathroom!  YEAH!  I was prepared for all the horror stories that I had heard about radiation, but didn't get very many of them.  So here are some things you need to know.

1.  You WILL burn IF you don't take super care of yourself.  I didn't get much info from the rad onc about how NOT to get burned, because honestly, I get the impression that they all think you WILL burn. 

2.  You will get some diarrhea from the chemoradiation.  Count on it.  However, it does NOT have to be as bad as possible.  You can depend on the rad onc to say its the chemo and the onc to say its the fault of the radation!

3.  If possible, AVOID a port.  I took the oral form of 5FU and would highly recommend it over anything else!  The port has a LOT of disadvantages. It's a pain in the butt (no pun intended) to have that needle and catheter coming out of your chest for 5-6 weeks.  Hard, if not impossible, to get a good shower for the duration and just a complete creepy thing.  The infused 5FU causes more discomfort, tiredness, etc. than the oral form.  Studies have proven this fact and have also proven that the oral form is at least as good, and in some case, a slight bit better than the infused form.

4.  Yes, you will get tired, but again this depends a LOT on your age.  I didn't get that tired-no worse than beind tired with a cold.  It also doesn't start right away.

5.  Stay out of the sun!  Being on chemo can cause you to burn more easily.

Okay, now for some of the solutions.  You don't have to burn with radiation.  I spoke with a lot of people who also had radiation (not for rectal cancer) and found out what they used and then sort of got my own protocol together (approved by the rad onc).  This has been used on a friend who was radiated from her neck to her pelvis for 6+ weeks and not one burn.  FIrst things.  Skin like your lips, nipples and anus will burn quicker than skin on your legs, stomach, etc.  Do not make the mistake that I made and think that because you buns are in the way that your anus won't burn - believe me IT CAN and it HURTS!  So, make sure that you slather it with whatever you choose to use.  Here is what I used (except on my anal area because I thought I was protected haha!).  First of all, as soon as possible after your radiation, slather (and I mean SLATHER) on clear aloe vera.  I actually got sticky from putting on soooo much!.  Then in the afternoon (this is all assuming you have radiation first thing in the morning-alter times for when you have your treatments) rub in a lot of something called RadiaGel.  Sometimes you can get a Rx for it from the rad onc or you can also get a non-Rx type at www.walgreens.com.  Not sold in their stores.  It is wonderful stuff.  Next before bed, rub in cocoa butter about 4-5 times a week.  The other 2-3 times a week, I used something called Johnson & Johnsons SoftLotion 24 hour.  YOU NEED TO MAKE SURE THAT WHATEVER YOU USE IT CONTAINS LITTLE TO NO ALCOHOL!  This is important as your skin, like burn victims, is thinner and dried out.  The last thing you need is to add any alcohol to your skin which will only dry it out even more!  So read the labels of everything very carefully.  Don't skimp on anything that you use.  Don't think that you just need a little.  The cocoa butter (try to get the creme-not lotion) and the other lotion is for moisturizing your skin-particularly your anal area.  As I said earlier, this skin in this area gets very thin and is very sensitive.  You need to try and keep it as moist as possible.  Another thing. DON'T USE ANYTHING LIKE HEMORRHOID PADS. They contain a lot of witch hazel & alcohol which also dry the skin. If possible, particulary at night, wear no underwear, etc to let the area be exposed to the air. 

As for the diarrhea, basically you will get some, even though I said that you will notice that it is easier to go to the bathroom.  This is due to the fact that not only is the radiation killing the tumor, but it is also killing the good bacteria in your colon that you need to digest food.  You can eat a lot of yogurt, but I would recommend going to either a nutrition store or WalMart (Walgreens also carries this) and getting some supplement that is just lactobacillus-what the radiation is killing off.  I found some stuff at WalMart & Walgreens called Digestive Advantage for Irritable Bowel Syndrome (again OK'd by onc) and took ususally 2 in the morning and 2 in the evening.  I never truly got ahead of the game, but compared to others, my diarrhea was not that bad.  Most days, I would take one Immodium only in the morning and I would be fine for the day.  But, if I didn't take that lactobacillus, did I ever notice it.  Also, stay on a bland diet during this time and for a few weeks after radiation is over.  Bread (white not wheat) is great.  I liked to make those Pillsbury breadsticks (low fat) that come in the tube and you bake them.  Too much roughage and you will be sorry!  Stay away from fresh veggies and fruits (cooked ones are okay) and just keep things bland.  Rice, applesauce, toast, meat, bananas (this fresh fruit is okay-just no peels-too much roughage), etc. are all fine.  Also, they want you to try and not lose weight during your radiation because once you are tatooed, they don't want the field shifting if you lose too much weight. I found that when I was on the pump 5FU, I had absolutely NO appetite and then they got upset.  I went off of the pump and on the oral (Xeloda) and had an appetite again.  Another good reason to try and not do the pump.

You will not experience the tiredness, etc.until a few weeks in.  Take advantage of the first few weeks.  Do some things you want, but rest.  Later you will want to nap for a little while a day.  Again, a lot of your reaction depends on your age, attitude, etc. from the beginning.

I have a lot more to tell you about your treatment, etc. but I don't want to keep taking up this forum.  I have done amazingly well and have exceeded everyone's expectations.  I was able to avoid the radical surgery because the radiation totally eradicated my tumor based on the pathology report. If you want some more tips/info, etc. please email me off site at:

weisssoccermom@hotmail.com

Hope this has been of some help.  Honestly, you will get through this, put is behind you and move on.  I started my chemoradiation last August 1st and except for a small hemorrhoid because of treatment, I am fine. Think positively.  Email

On 7/28/2007 mickb wrote:

I'm glad that I came across this site,  Its  real  scary getting diagnosed with T3 N1 this july4th.  Tumour taking up 1/3 of rectum and thru the wall into 2 lymph nodes and pressing up against the sacrum also lump in liver and lung. Pet scan didnt show a definite link but surgeon says they're not 100% accurate and will know more once they open me up and see the full extent.

It's been slowly building up with a very painful bad back kind of pain - like someone trying to strangle your spine, along with the feeling of needing to go to the toilet all the time - lots of farting and very small poo with blood. Have just started taking some painkillers and am hoping i dont get too constipated as it hurrts enough as it is.

I start radio/ chemo this week to shrink it down before surgery

Well thanks for reading and drop me a line if you want to share your experience or give me a bit of an insight into what's in store for me.

Mickb 

I was diagnosed with colorectal cancer in 2005, and went through the radiation/chemotherapy for six or eight weeks to shrink the tumor.  I had a resection in November and started chemothereapy in December.  It has since spread to the liver .. had a liver resection in November of 2006 followed by chemo.  Now it is back in the liver and the lungs.  I am presently seeking a second opinion for treatment.. possible clinical trials.

I have three drugs that I need to read up on nexavar, sutent, torisel. 

Be strong and hopeful my friend.  You are in my prayers.

 HI Maann,

Sounds like a long hard time youve had. Can I ask what age you are and did you have the 5fu chemo? I'm 42 and am just about to go onto my 5th week along with my 2nd round of chemo 5fu which is through a picc line and is pumped into me non stop day and night for a week. Did you have this too?

The doctor hasnt given any promises and can only say that it may shrink enough to operate and may stop the liver and lung ones too. So i guess its going to be a long battle for us both

Good luck to you and write back when you feel up to it.

Thanks Mick 

On 8/8/2007 maann wrote:

I was diagnosed with colorectal cancer in 2005, and went through the radiation/chemotherapy for six or eight weeks to shrink the tumor.  I had a resection in November and started chemothereapy in December.  It has since spread to the liver .. had a liver resection in November of 2006 followed by chemo.  Now it is back in the liver and the lungs.  I am presently seeking a second opinion for treatment.. possible clinical trials.

I have three drugs that I need to read up on nexavar, sutent, torisel. 

Be strong and hopeful my friend.  You are in my prayers.

 Hi Soccermom,

Thanks a lot for all your advice - it really came in handy i'm now in the 5th week and the 2nd round of 5fu chemo with a picc line and a pump that is very creepy especially at night while trying to sleep.They were going to leave the picc line in until the next chemo but it got infected and i got blood clots - very painful on top of all the other pains.

It feels as though it has shrunk a little although i started on panadol and nurofen as well which helped a lot and balanced out the not too hard or soft stools - well sometimes! By the way i'm 42 and live in sydney Australia so wasnt able to get to a walmart store but have found some similar things to take.

I'll write more when i can and thanks again

Good luck Mick 

On 7/28/2007 soccermom wrote:

Mickb,

Yep, you hit the nail on the head.  It is scary getting diagnosed but remember it truly is NOT the end of everything.  I was diagnosed last June ('06) and am doing well.  Originally diagnosed as T3N0M0 (final surgeon later said should have benn T2N0M0) so I know a fair amount about what you are going through.  My tumor encompassed about 75% of my rectum.

Radiation is a good first step.  Since you didn't state how old you are, I will tell you that I was just shy of 50 when I started my radiation.  Within weeks, you will notice a difference as to how much your pain will go away and how much easier it is to go to the bathroom!  YEAH!  I was prepared for all the horror stories that I had heard about radiation, but didn't get very many of them.  So here are some things you need to know.

1.  You WILL burn IF you don't take super care of yourself.  I didn't get much info from the rad onc about how NOT to get burned, because honestly, I get the impression that they all think you WILL burn. 

2.  You will get some diarrhea from the chemoradiation.  Count on it.  However, it does NOT have to be as bad as possible.  You can depend on the rad onc to say its the chemo and the onc to say its the fault of the radation!

3.  If possible, AVOID a port.  I took the oral form of 5FU and would highly recommend it over anything else!  The port has a LOT of disadvantages. It's a pain in the butt (no pun intended) to have that needle and catheter coming out of your chest for 5-6 weeks.  Hard, if not impossible, to get a good shower for the duration and just a complete creepy thing.  The infused 5FU causes more discomfort, tiredness, etc. than the oral form.  Studies have proven this fact and have also proven that the oral form is at least as good, and in some case, a slight bit better than the infused form.

4.  Yes, you will get tired, but again this depends a LOT on your age.  I didn't get that tired-no worse than beind tired with a cold.  It also doesn't start right away.

5.  Stay out of the sun!  Being on chemo can cause you to burn more easily.

 

Okay, now for some of the solutions.  You don't have to burn with radiation.  I spoke with a lot of people who also had radiation (not for rectal cancer) and found out what they used and then sort of got my own protocol together (approved by the rad onc).  This has been used on a friend who was radiated from her neck to her pelvis for 6+ weeks and not one burn.  FIrst things.  Skin like your lips, nipples and anus will burn quicker than skin on your legs, stomach, etc.  Do not make the mistake that I made and think that because you buns are in the way that your anus won't burn - believe me IT CAN and it HURTS!  So, make sure that you slather it with whatever you choose to use.  Here is what I used (except on my anal area because I thought I was protected haha!).  First of all, as soon as possible after your radiation, slather (and I mean SLATHER) on clear aloe vera.  I actually got sticky from putting on soooo much!.  Then in the afternoon (this is all assuming you have radiation first thing in the morning-alter times for when you have your treatments) rub in a lot of something called RadiaGel.  Sometimes you can get a Rx for it from the rad onc or you can also get a non-Rx type at www.walgreens.com.  Not sold in their stores.  It is wonderful stuff.  Next before bed, rub in cocoa butter about 4-5 times a week.  The other 2-3 times a week, I used something called Johnson & Johnsons SoftLotion 24 hour.  YOU NEED TO MAKE SURE THAT WHATEVER YOU USE IT CONTAINS LITTLE TO NO ALCOHOL!  This is important as your skin, like burn victims, is thinner and dried out.  The last thing you need is to add any alcohol to your skin which will only dry it out even more!  So read the labels of everything very carefully.  Don't skimp on anything that you use.  Don't think that you just need a little.  The cocoa butter (try to get the creme-not lotion) and the other lotion is for moisturizing your skin-particularly your anal area.  As I said earlier, this skin in this area gets very thin and is very sensitive.  You need to try and keep it as moist as possible.  Another thing. DON'T USE ANYTHING LIKE HEMORRHOID PADS. They contain a lot of witch hazel & alcohol which also dry the skin. If possible, particulary at night, wear no underwear, etc to let the area be exposed to the air. 

As for the diarrhea, basically you will get some, even though I said that you will notice that it is easier to go to the bathroom.  This is due to the fact that not only is the radiation killing the tumor, but it is also killing the good bacteria in your colon that you need to digest food.  You can eat a lot of yogurt, but I would recommend going to either a nutrition store or WalMart (Walgreens also carries this) and getting some supplement that is just lactobacillus-what the radiation is killing off.  I found some stuff at WalMart & Walgreens called Digestive Advantage for Irritable Bowel Syndrome (again OK'd by onc) and took ususally 2 in the morning and 2 in the evening.  I never truly got ahead of the game, but compared to others, my diarrhea was not that bad.  Most days, I would take one Immodium only in the morning and I would be fine for the day.  But, if I didn't take that lactobacillus, did I ever notice it.  Also, stay on a bland diet during this time and for a few weeks after radiation is over.  Bread (white not wheat) is great.  I liked to make those Pillsbury breadsticks (low fat) that come in the tube and you bake them.  Too much roughage and you will be sorry!  Stay away from fresh veggies and fruits (cooked ones are okay) and just keep things bland.  Rice, applesauce, toast, meat, bananas (this fresh fruit is okay-just no peels-too much roughage), etc. are all fine.  Also, they want you to try and not lose weight during your radiation because once you are tatooed, they don't want the field shifting if you lose too much weight. I found that when I was on the pump 5FU, I had absolutely NO appetite and then they got upset.  I went off of the pump and on the oral (Xeloda) and had an appetite again.  Another good reason to try and not do the pump.

You will not experience the tiredness, etc.until a few weeks in.  Take advantage of the first few weeks.  Do some things you want, but rest.  Later you will want to nap for a little while a day.  Again, a lot of your reaction depends on your age, attitude, etc. from the beginning.

I have a lot more to tell you about your treatment, etc. but I don't want to keep taking up this forum.  I have done amazingly well and have exceeded everyone's expectations.  I was able to avoid the radical surgery because the radiation totally eradicated my tumor based on the pathology report. If you want some more tips/info, etc. please email me off site at:

weisssoccermom@hotmail.com

Hope this has been of some help.  Honestly, you will get through this, put is behind you and move on.  I started my chemoradiation last August 1st and except for a small hemorrhoid because of treatment, I am fine. Think positively.  Email

 

On 7/28/2007 mickb wrote:

I'm glad that I came across this site,  Its  real  scary getting diagnosed with T3 N1 this july4th.  Tumour taking up 1/3 of rectum and thru the wall into 2 lymph nodes and pressing up against the sacrum also lump in liver and lung. Pet scan didnt show a definite link but surgeon says they're not 100% accurate and will know more once they open me up and see the full extent.

It's been slowly building up with a very painful bad back kind of pain - like someone trying to strangle your spine, along with the feeling of needing to go to the toilet all the time - lots of farting and very small poo with blood. Have just started taking some painkillers and am hoping i dont get too constipated as it hurrts enough as it is.

I start radio/ chemo this week to shrink it down before surgery

Well thanks for reading and drop me a line if you want to share your experience or give me a bit of an insight into what's in store for me.

Mickb