Radiation

CanadaSue
CanadaSue Member Posts: 339 Member
edited March 2014 in Colorectal Cancer #1
HI all,

A little history:

My husband was dx'ed Jan 2006 withstage 1V Colon Cancer. 3 surgeries later, the first one to remove the tumor, then 3 months later another surgery to remove almost all of the colon, he ended up with a permenet illostomy, they did the hot chemo treatments to his abdomin as well. He was able to make it thru 9 rounds of 5FU, lecorvorin, and irritecan, before they had to stop. In late 2007 they found the cancer had spread to his bladder, prostrate, and rectum, all of these have been removed and he now has a illoconduit. After his last surgery he was complaining of pain in the tailbone area, they did a Ct scan in July and another in September. His Cea tests have been accurate for him, Apr- 2.9, July- 7, Sept- 12. SO they did a Pet scan and found a tumor near the tail bone. We have an appointment tomorrow with the radiology department.

Can I get a feed back on any of you who have had radiation. What are the side affects. What can we expect. Any questions we should be asking. Any feedback is greatly appreciated.

My thoughts and prayers are with you all daily.

Hugs

Sue

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    Radiation
    Sue, I haven't had radiation, just wanted to let you know I was thinking of you and your husband and praying for good results from this newest addition to his treatment. He and you have been through so much already, I am so sorry! God will strengthen you and I will be looking to see how things are going.
    Mary
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    msccolon said:

    Radiation
    Sue, I haven't had radiation, just wanted to let you know I was thinking of you and your husband and praying for good results from this newest addition to his treatment. He and you have been through so much already, I am so sorry! God will strengthen you and I will be looking to see how things are going.
    Mary

    Thanks
    Mary thank you for your kind words!


    Hugs,

    Sue
  • taraHK
    taraHK Member Posts: 1,952 Member
    Hi Sue,
    Sorry I missed your

    Hi Sue,

    Sorry I missed your posting. I had radiation -- although it was focused on my rectal area (where the tumour was), not my tailbone. It seems that radiation is often given for 5 weeks (or 5.5). Five days a week. The radiation session itself doesn't take very long -- you spend more time sitting in the waiting room than getting zapped!. The side effects of radiation often don't start until after about 2 weeks -- but then they can last about 2 weeks after the radiation stops. One possible side effect is fatigue. In my case, that wasn't too bad -- I had a nap every day (wonderful!). Radiation can also cause diarrhea -- but I guess it depends exactly where he is being zapped. I did have pretty bad diarrhea. And, it sometimes cause a 'burn' on the skin (like a bad sunburn). In my case, that was pretty bad. Maybe because I have very sensitive skin, maybe because of the specific area being radiated (ouch!). As I am sure you are used to by this stage, the best approach to side effects (in my opinion) is to let the nurses, technicians, doctors know asap. I found that the radiation staff had some great advice about what to do....very helpful.

    Best wishes to your dear husband (and to you!) as you face this next challenge.

    Tara
  • pamness
    pamness Member Posts: 524 Member
    Radiation
    so sorry to hear about the lastest development. I had a horrible time with chemo - 5FU, leukovorin and oxalatin. I practically ran over to radiation, I did 5.5 weeks with 5FU. five days a week. mine was aimed above my tail bone (colon cancer), I had no burns, no more fatigue than I already had. I had some diarrhea in the final two weeks.

    Be sure to ask the doctors and nurses and techs when you run into difficulty. But I found radiation to be a walk in the park after chemo. I hope you have an easy time with it.

    It is true, that you spend way more time sitting around waiting than anything, the actual radiation treatment took minutes.

    Pam
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    taraHK said:

    Hi Sue,
    Sorry I missed your

    Hi Sue,

    Sorry I missed your posting. I had radiation -- although it was focused on my rectal area (where the tumour was), not my tailbone. It seems that radiation is often given for 5 weeks (or 5.5). Five days a week. The radiation session itself doesn't take very long -- you spend more time sitting in the waiting room than getting zapped!. The side effects of radiation often don't start until after about 2 weeks -- but then they can last about 2 weeks after the radiation stops. One possible side effect is fatigue. In my case, that wasn't too bad -- I had a nap every day (wonderful!). Radiation can also cause diarrhea -- but I guess it depends exactly where he is being zapped. I did have pretty bad diarrhea. And, it sometimes cause a 'burn' on the skin (like a bad sunburn). In my case, that was pretty bad. Maybe because I have very sensitive skin, maybe because of the specific area being radiated (ouch!). As I am sure you are used to by this stage, the best approach to side effects (in my opinion) is to let the nurses, technicians, doctors know asap. I found that the radiation staff had some great advice about what to do....very helpful.

    Best wishes to your dear husband (and to you!) as you face this next challenge.

    Tara

    Thanks!
    Thanks Tara,

    Thank you for your response. I think we should move much closer to our Cancer Centre if it is going to be be 5 days a week. Were you able to drive your self to treatments?

    Thanks again,

    Hugs,

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    pamness said:

    Radiation
    so sorry to hear about the lastest development. I had a horrible time with chemo - 5FU, leukovorin and oxalatin. I practically ran over to radiation, I did 5.5 weeks with 5FU. five days a week. mine was aimed above my tail bone (colon cancer), I had no burns, no more fatigue than I already had. I had some diarrhea in the final two weeks.

    Be sure to ask the doctors and nurses and techs when you run into difficulty. But I found radiation to be a walk in the park after chemo. I hope you have an easy time with it.

    It is true, that you spend way more time sitting around waiting than anything, the actual radiation treatment took minutes.

    Pam

    Thanks Pam
    After reading yours and Tara's responses, I think I was getting worried for nothing...
    And we certainly could use a walk in the park right about now..LOL

    Have a great day!


    Hugs,
    Sue
  • KathiM
    KathiM Member Posts: 8,028 Member
    One thing from a patient partner...
    Young Male. Had radiation. Had a few 'performance issues' for awhile.

    (He was so cute...he called me, stumbled about a little, I could FEEL him blushing...but he said "I HOPE I can discuss anything with you....")

    It cleared up. (ROFL)

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    KathiM said:

    One thing from a patient partner...
    Young Male. Had radiation. Had a few 'performance issues' for awhile.

    (He was so cute...he called me, stumbled about a little, I could FEEL him blushing...but he said "I HOPE I can discuss anything with you....")

    It cleared up. (ROFL)

    Hugs, Kathi

    Seriously, now...
    My tumor was against my tailbone. The major thing I noticed was the burn, right above my anus. I couldn't use Silvadene, because it would get places (vagina) that burned like heck. Your hubby shouldn't have that trouble, this maybe something for him.

    Since that didn't work, I came up with (PLEASE don't laugh) cornstarch. Alternating with Aquaphor or A&D Ointment (barrier cream) to keep the anus as dry and protected as possible. Also, I dabbed, not wiped. I didn't realize at first that it WAS a burn, so I let it go longer than I should have (you should have seen the stretching I had to do to see the area...lol!).

    Hugs to you both,
    Kathi
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    KathiM said:

    Seriously, now...
    My tumor was against my tailbone. The major thing I noticed was the burn, right above my anus. I couldn't use Silvadene, because it would get places (vagina) that burned like heck. Your hubby shouldn't have that trouble, this maybe something for him.

    Since that didn't work, I came up with (PLEASE don't laugh) cornstarch. Alternating with Aquaphor or A&D Ointment (barrier cream) to keep the anus as dry and protected as possible. Also, I dabbed, not wiped. I didn't realize at first that it WAS a burn, so I let it go longer than I should have (you should have seen the stretching I had to do to see the area...lol!).

    Hugs to you both,
    Kathi

    Seriously
    Kathi,

    Thank you!

    You always make me laugh when I just want to cry!
    Bill's tumor appears to be in the same spot as yours (was), he is constanly in pain, so
    this just has to work. I will have him watch out for the burn.

    Thanks again!


    Hugs,

    Sue
  • KathiM
    KathiM Member Posts: 8,028 Member
    CanadaSue said:

    Seriously
    Kathi,

    Thank you!

    You always make me laugh when I just want to cry!
    Bill's tumor appears to be in the same spot as yours (was), he is constanly in pain, so
    this just has to work. I will have him watch out for the burn.

    Thanks again!


    Hugs,

    Sue

    He must not be a pain hero!!!!
    I was, like an idiot...tailbone pain is the WORST!!!!

    Finally, when I started taking my Vicodin to the max, I got a bit of relief. I was always afraid that I would become addicted...it never happened, and the stats show that when you justify it for a reason, the addiction rate is very low....

    As my treatment progressed, I DID notice a marked decline in the pain, I was able to stop the Vicodin. This happened about week 2 or so. I was on the 1/2 punch...chemo and rads at the same time.

    I'm sending my best vibes!!!

    Hugs, Kathi

    P.S. (I even debated on saying this....)Don't be surprised if he starts passing a fair amount of blood. You should share the info with his oncologist (!), but this tumor (or at least mine) was so close to the anus, that my body didn't have time to reabsorb the blood. One of my strongest memories was of me sitting on the toilet, self-talking "Yes, they know about it, yes it's ok, yes, it means the treatment is working and the tumor is breaking up".
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Radiation Burn
    Hi Sue,

    My tumour was not in the same place as your husband's so I can't comment on that situation exactly, but I did have radiation on my abdominal wall. To do this, they zapped me from above, then zapped me from the side, then zapped me from below. So a bunch of various bits and pieces got hit by the Big Bertha (the Zapping Radiation Machine).

    If your husband has any experience like mine, he'll be just fine... and the sooner that zapping starts working on the tumour, I'm sure the pain level will go down. But, like Kathi says, if he is having pain, make sure he gets his doctor to prescribe a good, strong painkiller... one that will work now and he can wean himself off of it as the pain goes away. THAT is what prescription painkillers are for... to fight pain!

    As for the radiation itself... how should I put this delicately?? I am what could be described as a full figure girl. I have a lot of figure for the radiation to zap through. Because of that, I have a belly. Wherever you have a fold in the skin... and trust me, a belly produces a nice big fold... if that fold is anywhere near where the radiation is fixing, then you probably will get what is known as radiation burn. You probably have heard others talk about it. It can be compared to a "Oops, been out in the sun too long" burn, or like a "diaper rash". Do NOT be shy about telling the radiologist or the radiology technicians that a burn is just starting to form. They can prescribe a cream (or tell you about any over the counter creams) and these clear it up before it even happens... well, it has to start first, otherwise you won't know where it will happen :)

    As for driving... I found no problem driving myself. When I first started chemo, we all had these horror thoughts in our head that I was almost going to have to be carried out to the car. So two friends would come with me... and my friend, Steve, REFUSED to let me drive. Well, sure enough, after each chemo treatment, I was my same old self... then when I started radiation, I told him, "Look, I'm going to drive myself! If I find I'm having problems or just too tired to be driving, we'll go back to me having you drive me". I went through the whole 6 weeks, Mon-Fri, driving myself, and then going shopping, or out to lunch with a girlfriend (darn... that appetite was still there!), or out to an afternoon movie.

    So your mileage really does vary... everyone is so different. But the one thing I did learn throughout all of this... my imagination was WAY worse than any of the treatments ever were for me. Yes, I got tired... but hey, an excuse for a nap in the afternoon was a great idea to me :) Sometimes I can say that it was more than just being tired... it was the fatigue. When that happened, I just made sure I got plenty of rest and sleep... and darn it all, I always woke up for meals .

    Keep us posted on how it goes!!

    Hugggggs,

    Cheryl
  • msccolon
    msccolon Member Posts: 1,917 Member

    Radiation Burn
    Hi Sue,

    My tumour was not in the same place as your husband's so I can't comment on that situation exactly, but I did have radiation on my abdominal wall. To do this, they zapped me from above, then zapped me from the side, then zapped me from below. So a bunch of various bits and pieces got hit by the Big Bertha (the Zapping Radiation Machine).

    If your husband has any experience like mine, he'll be just fine... and the sooner that zapping starts working on the tumour, I'm sure the pain level will go down. But, like Kathi says, if he is having pain, make sure he gets his doctor to prescribe a good, strong painkiller... one that will work now and he can wean himself off of it as the pain goes away. THAT is what prescription painkillers are for... to fight pain!

    As for the radiation itself... how should I put this delicately?? I am what could be described as a full figure girl. I have a lot of figure for the radiation to zap through. Because of that, I have a belly. Wherever you have a fold in the skin... and trust me, a belly produces a nice big fold... if that fold is anywhere near where the radiation is fixing, then you probably will get what is known as radiation burn. You probably have heard others talk about it. It can be compared to a "Oops, been out in the sun too long" burn, or like a "diaper rash". Do NOT be shy about telling the radiologist or the radiology technicians that a burn is just starting to form. They can prescribe a cream (or tell you about any over the counter creams) and these clear it up before it even happens... well, it has to start first, otherwise you won't know where it will happen :)

    As for driving... I found no problem driving myself. When I first started chemo, we all had these horror thoughts in our head that I was almost going to have to be carried out to the car. So two friends would come with me... and my friend, Steve, REFUSED to let me drive. Well, sure enough, after each chemo treatment, I was my same old self... then when I started radiation, I told him, "Look, I'm going to drive myself! If I find I'm having problems or just too tired to be driving, we'll go back to me having you drive me". I went through the whole 6 weeks, Mon-Fri, driving myself, and then going shopping, or out to lunch with a girlfriend (darn... that appetite was still there!), or out to an afternoon movie.

    So your mileage really does vary... everyone is so different. But the one thing I did learn throughout all of this... my imagination was WAY worse than any of the treatments ever were for me. Yes, I got tired... but hey, an excuse for a nap in the afternoon was a great idea to me :) Sometimes I can say that it was more than just being tired... it was the fatigue. When that happened, I just made sure I got plenty of rest and sleep... and darn it all, I always woke up for meals .

    Keep us posted on how it goes!!

    Hugggggs,

    Cheryl

    Your appetite
    ROFL! I have to agree with you, although until cancer came along, I was actually that woman/girl you wanted to just slap because no matter what I ate I never gained an ounce! But, since I am a determined eater and knew that i either consumed enough calories to combat the wear and tear of the chemo, or I let the cancer consume me, I am now in a state where I SERIOUSLY need to lose some poundage! However, I still have pics of how DISGUSTINGLY thin I had been after coming home from the surgery from my recurrence. Apparently I never saw beyond the huge belly I had from the ascites and didn't realize I was losing so much weight. I was wearing size 0s my daughter still had around the house from when she was in high school and they weren't even CLOSE to being tight. We all still cringe when we remember those first few weeks! I am sure you have discovered as I have, there really ARE things more important than the size of the package we come in!
    Mary
  • Kanort
    Kanort Member Posts: 1,272 Member
    Healing Thoughts!
    Hi Sue,

    I never had radiation so I can't add to these comments, but it sounds like you have gotten some great information and advice. Sending prayers and hugs your husband's way for an uneventful experience with radiation. Please keep us posted.

    Hugs,

    Kay
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    Radiation
    Hi Sue: I had radiation done on my hip bone, and it lasted for 10 days, and I understood that to be the strongest dose they could give me. The only side effect I had was fatigue, which got worse as the days progressed. The good news is that it went away within days of stopping radiation and I no longer have any pain on my hip. Good luck to you and your husband. You'll be in my prayers. Monica
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    KathiM said:

    He must not be a pain hero!!!!
    I was, like an idiot...tailbone pain is the WORST!!!!

    Finally, when I started taking my Vicodin to the max, I got a bit of relief. I was always afraid that I would become addicted...it never happened, and the stats show that when you justify it for a reason, the addiction rate is very low....

    As my treatment progressed, I DID notice a marked decline in the pain, I was able to stop the Vicodin. This happened about week 2 or so. I was on the 1/2 punch...chemo and rads at the same time.

    I'm sending my best vibes!!!

    Hugs, Kathi

    P.S. (I even debated on saying this....)Don't be surprised if he starts passing a fair amount of blood. You should share the info with his oncologist (!), but this tumor (or at least mine) was so close to the anus, that my body didn't have time to reabsorb the blood. One of my strongest memories was of me sitting on the toilet, self-talking "Yes, they know about it, yes it's ok, yes, it means the treatment is working and the tumor is breaking up".

    Pain
    HI Kathy,

    Bill was up to 10 percocet per day, but they have now put him on morphine twice a day, and he is to use the percocet for break thru pain.


    Thanks for all your help! It will be helpful in the coming days.

    Hugs,

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    Kanort said:

    Healing Thoughts!
    Hi Sue,

    I never had radiation so I can't add to these comments, but it sounds like you have gotten some great information and advice. Sending prayers and hugs your husband's way for an uneventful experience with radiation. Please keep us posted.

    Hugs,

    Kay

    Thanks
    Thanks Kay

    I am not in a real good place right now after the news we got yesterday. It was not at all what we were expecting.....

    We were told that the radiation would not kill all the cancer.

    But I will do a new post on that once I get settled down here.


    Once again thanks for your post!

    Hugs,

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member

    Radiation
    Hi Sue: I had radiation done on my hip bone, and it lasted for 10 days, and I understood that to be the strongest dose they could give me. The only side effect I had was fatigue, which got worse as the days progressed. The good news is that it went away within days of stopping radiation and I no longer have any pain on my hip. Good luck to you and your husband. You'll be in my prayers. Monica

    Thanks
    Thanks for your post,

    Keep saying those pryaers.

    Hugs,

    Sue