Questions for a friend recently diagnosed
I have been on this site for over three years (Lymphoma Board) and am thankful for the good and caring folks here and all the support we give each other. I am writing here for a friend who was recently diagnosed with stage 2 colon cancer. Evidently the tumor is outside the rectum near the anus and not attached to any organs, etc. He will start a regimen of chemo and radiation treatment on Dec. 15th for 6 weeks. From what I understand, he will receive both daily Mon-Fri over this period.
Radiation:
He will receive daily radiation treatments targeting the tumor and nearby lymph nodes over the period. I think he said they would alternate targeted areas throughout therapy.
Chemo:
He will receive a port and be treated with Fluorouracil (5FU), Mutamycin. Evidently he will have a device to take home with him to do the infusion.
===============
He is aware of this site and has read some of the posts. I'm hoping some of you have experience with same/similar treatments and can share and offer any advice/information that may be helpful to my friend.
Thank you so much for your responses and I wish you all well,
Jim
Comments
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Radiation
Bless his heart! He is in for a ride if Radiation is anything like what I went through.
I do hope you can entice him to join our group, as he will benifit from it no end.
There are lots of little things he must and must not do when he gets his radiation. I know that they will tell him NOT to use any kind of creams or unctions around that area before he goes in for his treatment, but afterwards, well, he's going to have to find what works for him, and maybe, if he can get some stuff in before he starts, that would be better.
I tried almost everything to aliviate the pain that came with the radiation burn. Nothing really worked, but there were some that soothed better than others.
I will list a few, but like I said, different things work for different people.
Aubrey Organic Pure Aloe Vera (its pure, so not a gel but runny) and needs to be kept in the fridge, thus it is cool and soothing.
Bert's Bees Vitamin E Oil - Still a favourite for those side-effect that linger on
Polysporin - When it was REALLY REALLY bad with open sores this was a God-send
Bio-Oil - I LOVED this but was a bit worried about the mineral oil in it. Still, I used it allot, along with the Vitamin E oil and Polysporin.
CeraVe - I have used this on my body for a long time, and found that it worked good around the anus area as well.
Balmex Adult Care I found this after treatments, when the sores continued. Its like Desitin, so REALLY thick and messy.
Aquaphor - Messy but there were times when it worked fine
DEPENDS - Not to be scoffed at. The Diarrhea can be unbelivable. It waits for no-one and comes out whenever it wants.
Now I've said that, he may not experience anything half as bad as I did. I pray that he doesn't, because radiation was by far the worst part of my whole journey.
As for the pain, tell him to expect it and then if it isn't painful, consider himself blessed. For me, the pain was excruciating beyond words.
I'm not usually all doom and gloom, but when someone told me before my radiation how bad it was for them, I remember thinking I hope that doesn't happen to me, but when it did, I knew it was normal albeit unpleasant. Being prepared for the worst and hoping for the best worked for me. .
What a good friend you are. He will really benifit from your support and expereince.
Tell him that I wish him all the best and to seriously think of coming to join us.
Blessings!
Sue - Trubrit
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Warm baths in epsom salts,Trubrit said:Radiation
Bless his heart! He is in for a ride if Radiation is anything like what I went through.
I do hope you can entice him to join our group, as he will benifit from it no end.
There are lots of little things he must and must not do when he gets his radiation. I know that they will tell him NOT to use any kind of creams or unctions around that area before he goes in for his treatment, but afterwards, well, he's going to have to find what works for him, and maybe, if he can get some stuff in before he starts, that would be better.
I tried almost everything to aliviate the pain that came with the radiation burn. Nothing really worked, but there were some that soothed better than others.
I will list a few, but like I said, different things work for different people.
Aubrey Organic Pure Aloe Vera (its pure, so not a gel but runny) and needs to be kept in the fridge, thus it is cool and soothing.
Bert's Bees Vitamin E Oil - Still a favourite for those side-effect that linger on
Polysporin - When it was REALLY REALLY bad with open sores this was a God-send
Bio-Oil - I LOVED this but was a bit worried about the mineral oil in it. Still, I used it allot, along with the Vitamin E oil and Polysporin.
CeraVe - I have used this on my body for a long time, and found that it worked good around the anus area as well.
Balmex Adult Care I found this after treatments, when the sores continued. Its like Desitin, so REALLY thick and messy.
Aquaphor - Messy but there were times when it worked fine
DEPENDS - Not to be scoffed at. The Diarrhea can be unbelivable. It waits for no-one and comes out whenever it wants.
Now I've said that, he may not experience anything half as bad as I did. I pray that he doesn't, because radiation was by far the worst part of my whole journey.
As for the pain, tell him to expect it and then if it isn't painful, consider himself blessed. For me, the pain was excruciating beyond words.
I'm not usually all doom and gloom, but when someone told me before my radiation how bad it was for them, I remember thinking I hope that doesn't happen to me, but when it did, I knew it was normal albeit unpleasant. Being prepared for the worst and hoping for the best worked for me. .
What a good friend you are. He will really benifit from your support and expereince.
Tell him that I wish him all the best and to seriously think of coming to join us.
Blessings!
Sue - Trubrit
Warm baths in epsom salts, they gave me Glaxolbase cream (I think it's called), one of the best things for me was that after the radiation I got into my cold car with leather seats and that soothed things right away. I got irritation like a sunburn but not a bad one. And tell him to not underestimate the fatigue. I thought "oh fatigue, I can just lie in bed lots" but I was wrong. The brain actually gets fatigue. It didn't start until a few weeks into it but I'd lie for hours in my bed staring out the window at the sky. I didn't even read or watch TV, I just couldn't focus and wasn't interested.
Another side effect I got was a super strong sense of smell. I couldn't stand the smell of my clean sheets and had to use fragrance free dryer sheets. And everyone around me had to have mints.
Jan
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JanJan's post reminds meTrubrit said:Radiation
Bless his heart! He is in for a ride if Radiation is anything like what I went through.
I do hope you can entice him to join our group, as he will benifit from it no end.
There are lots of little things he must and must not do when he gets his radiation. I know that they will tell him NOT to use any kind of creams or unctions around that area before he goes in for his treatment, but afterwards, well, he's going to have to find what works for him, and maybe, if he can get some stuff in before he starts, that would be better.
I tried almost everything to aliviate the pain that came with the radiation burn. Nothing really worked, but there were some that soothed better than others.
I will list a few, but like I said, different things work for different people.
Aubrey Organic Pure Aloe Vera (its pure, so not a gel but runny) and needs to be kept in the fridge, thus it is cool and soothing.
Bert's Bees Vitamin E Oil - Still a favourite for those side-effect that linger on
Polysporin - When it was REALLY REALLY bad with open sores this was a God-send
Bio-Oil - I LOVED this but was a bit worried about the mineral oil in it. Still, I used it allot, along with the Vitamin E oil and Polysporin.
CeraVe - I have used this on my body for a long time, and found that it worked good around the anus area as well.
Balmex Adult Care I found this after treatments, when the sores continued. Its like Desitin, so REALLY thick and messy.
Aquaphor - Messy but there were times when it worked fine
DEPENDS - Not to be scoffed at. The Diarrhea can be unbelivable. It waits for no-one and comes out whenever it wants.
Now I've said that, he may not experience anything half as bad as I did. I pray that he doesn't, because radiation was by far the worst part of my whole journey.
As for the pain, tell him to expect it and then if it isn't painful, consider himself blessed. For me, the pain was excruciating beyond words.
I'm not usually all doom and gloom, but when someone told me before my radiation how bad it was for them, I remember thinking I hope that doesn't happen to me, but when it did, I knew it was normal albeit unpleasant. Being prepared for the worst and hoping for the best worked for me. .
What a good friend you are. He will really benifit from your support and expereince.
Tell him that I wish him all the best and to seriously think of coming to join us.
Blessings!
Sue - Trubrit
I got SOOOO COLD during chemo and even more so during radiation. It was 106 F outside and I was under an electric blanket and a heavy quilt.
Oh, this is bringing it all back to me. I have thankfully forgotten allot of what I went through, excepting the terrible things that still haunt my dreams.
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Chemo/radiation
Everyone reacts differently to treatment. I did the Xeloda with my radiation instead of the 5FU. I did not have any fatigue with my 30 radiation treatments with the Xeloda. Make sure he takes the list of recomendations from his radiation oncologist seriously and starts them right away. Being proactive with the side effects is key. I was careful not to use any creams etc on my skin through radiation. I made sure to clean the area carefully and to make sure I rinsed off all soap after showering. I was stage III rectal. Good luck to your friend.
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Many thanksTrubrit said:Radiation
Bless his heart! He is in for a ride if Radiation is anything like what I went through.
I do hope you can entice him to join our group, as he will benifit from it no end.
There are lots of little things he must and must not do when he gets his radiation. I know that they will tell him NOT to use any kind of creams or unctions around that area before he goes in for his treatment, but afterwards, well, he's going to have to find what works for him, and maybe, if he can get some stuff in before he starts, that would be better.
I tried almost everything to aliviate the pain that came with the radiation burn. Nothing really worked, but there were some that soothed better than others.
I will list a few, but like I said, different things work for different people.
Aubrey Organic Pure Aloe Vera (its pure, so not a gel but runny) and needs to be kept in the fridge, thus it is cool and soothing.
Bert's Bees Vitamin E Oil - Still a favourite for those side-effect that linger on
Polysporin - When it was REALLY REALLY bad with open sores this was a God-send
Bio-Oil - I LOVED this but was a bit worried about the mineral oil in it. Still, I used it allot, along with the Vitamin E oil and Polysporin.
CeraVe - I have used this on my body for a long time, and found that it worked good around the anus area as well.
Balmex Adult Care I found this after treatments, when the sores continued. Its like Desitin, so REALLY thick and messy.
Aquaphor - Messy but there were times when it worked fine
DEPENDS - Not to be scoffed at. The Diarrhea can be unbelivable. It waits for no-one and comes out whenever it wants.
Now I've said that, he may not experience anything half as bad as I did. I pray that he doesn't, because radiation was by far the worst part of my whole journey.
As for the pain, tell him to expect it and then if it isn't painful, consider himself blessed. For me, the pain was excruciating beyond words.
I'm not usually all doom and gloom, but when someone told me before my radiation how bad it was for them, I remember thinking I hope that doesn't happen to me, but when it did, I knew it was normal albeit unpleasant. Being prepared for the worst and hoping for the best worked for me. .
What a good friend you are. He will really benifit from your support and expereince.
Tell him that I wish him all the best and to seriously think of coming to join us.
Blessings!
Sue - Trubrit
Thank you, Sue, for sharing your wisdom and experiences. I know your advice will be very benficial along my journey. Is there anything I need to do before treatment begins?
Michael
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Thank youCoppercent said:Chemo/radiation
Everyone reacts differently to treatment. I did the Xeloda with my radiation instead of the 5FU. I did not have any fatigue with my 30 radiation treatments with the Xeloda. Make sure he takes the list of recomendations from his radiation oncologist seriously and starts them right away. Being proactive with the side effects is key. I was careful not to use any creams etc on my skin through radiation. I made sure to clean the area carefully and to make sure I rinsed off all soap after showering. I was stage III rectal. Good luck to your friend.
Hi Coppercent, I am grateful for sharing your experiences. Would please explain "Be proactive with the side effects?"
Michael
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Hi jimwins and MusicGuyRaleighMusicGuy said:Thank you
Hi Coppercent, I am grateful for sharing your experiences. Would please explain "Be proactive with the side effects?"
Michael
I usually post on the anal cancer forum but saw this post and thought, gee, that treatment protocol sounds very familiar. MusicGuy, your treatment plan is very close to the treatment we receive for anal cancer - 6 weeks of radiation and 5FU, mitomycin. Our treatment consisted of only two rounds of 5FU and mitomycin though, not weekly. The radiation can cause a lot of bowel issues but they often resolve after time. It can take a long time though. Removing any creams or ointments prior to radiation is very important, as they can make the radiation burns worse. I used Aquafour around the butt area and soaks in Aveeno oatmeal bath w/water during and after treatment (both helped a lot). You might want to post over at the anal cancer forum too - there are many wonderful people there (as there are here) who will be glad to help you along your journey.
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Hello thereRaleighMusicGuy said:Many thanks
Thank you, Sue, for sharing your wisdom and experiences. I know your advice will be very benficial along my journey. Is there anything I need to do before treatment begins?
Michael
How wonderful that you have joined. Well, not wonderful that you had to, but now that you have the dreaded C, might as well join us and we can help you along the way.
I think I would say that, if you are not already doing it, try your very best to eat a wonwderful, healthy diet. Lots of water, fresh fruit, veg, good old wholesome foods. None of this boxed and tinned rubbish, make it all yourself.
Now don't get me wrong, I do eat the bad stuff too. Well, not bad bad, I eat chocolate, ice cream, cookies and way too much bread. I pretty much make all the bad stuff from scratch, telling myself its only half bad that way. HA!
Have you started a thread of your own to introduce yourself?
Blessings!
Sue - Trubrit
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Hey Michael,
Was diagnosed with the same cancer in May of 3013. Radiation wasn't much of a problem for me. Infact it got rid of my very severe pain down there. Bio-oil worked for me the best, but everybody is different.
Can't you take Xeloda pills instead? It's much more conveniant and has the same effect.
By being proactive we mean that you start moisrerizing the area, your hands and feet starting pretty much now. Radiation and chemo reduces the production of skin glands that keep our skin moist. This medication also causes hand and foot syndrom where they might turn purple an start peeling.
The radiation and initial chemo is the same for almost everyone, but it is very important that you also find a good surgeon. Can you share the size and location of your cancer?
We will be here for you all the way.
Laz
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Pump at home
Hi Jim,
What your friend will be taking home will be a pump to continue the 5FU infusions. 5FU has a short time where it is actually acting on the cancer, so a continuous infusion over time is necessary for the full benefit.
After whatever other chemo he has for the day is done, the pump will be hooked up to his port and he will go home with it. It will be his constant companion (although probably not a beloved one) for however long his oncologist prescribes. I had mine in for 48 hours at a time every two weeks. While it is in he will not be able to shower, so hobo baths will be the order of the day. He will probably have a carrier for it which can be converted to either sling over his shoulder like a bag or set up like a fanny pack, depending on what he is doing and how much he want to bother. Please caution him to always remember it is hooked up; I think there are many of us on this forum who have forgotten, gotten up and had the needle yanked out by the weight of the pump; always remember it is there.The best advice I can give are these three things:
1. Hydrate, hydrate, hydrate. The 5FU may not be long-acting on the cancer, but the chemicals are still there turning into a toxic dump. The more he hydrates, the faster this stuff will get flushed and the better he will feel. Even if he doesn't feel like it, he must drink lots of water.
2. Nutrition, nutrition, nutrition. Same as before. He may not feel like eating, but he must keep up with his nutrition. He will rebound faster and feel better.
3. Move, move, move. He doesn't have to run marathons, but even though he will feel beset with fatigue, he must move. Chemo patients are prone to blood clots and keeping the blood flowing will help prevent that. A few short walks a day will suffice. If he is feeling really bad/fatigued, even going to the mailbox and back several times a day will help.
Do encourage him to join this forum. Excellent advice and support from people not directly involved with him may be priceless. One finds oneself comforting others who are frightened on one's behalf and then we hesitate to tell them exactly what's going on in our heads. Here, we can freely say exactly what is going on in our heads without feeling bad about it. I don't know if I would have made it through quite sanely if I hadn't found this forum.
I hope your journey is going well and that an end to the madness is in sight for you. You're a good friend, Jim.
Kirsten
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5 f-u pump
My brother had the pump for 48 hours. They usually have to flush the port before they attach it. Like someone else said, they usually give it to you in a sling type bag or a fanny pack. When the 48 hours are up, you turn it off and go back to have it removed and the port flushed again. Make sure you keep on top of the diarrhea if you get it. my brother takes Lomotil and imodium. ue is right, don't be shy about using depends. My brother has to use them because since his rectal surgery, he has accidents because he can't make it fast enough to the bathroom. Sue once told me, "depends become your best friends.) LOL, it has saved my brother and dad from doing a lot of laundry. My brother had the 5_FU, irinotecan, leucovorin and erbitux until he got really sick with blood clots. He was placed on low doses of the meds but recently found his heart is weak from chemo drugs he had in 2000 for non hodgkins lymphoma, as well as the chemo meds he's on now. I guess it's just becoming too much for his heart. He is on irinotecan only now, but at a low dose.
I wish you well with your journey to fight this monster.
Lin
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Michael, I forgot when IUncleBuddy said:5 f-u pump
My brother had the pump for 48 hours. They usually have to flush the port before they attach it. Like someone else said, they usually give it to you in a sling type bag or a fanny pack. When the 48 hours are up, you turn it off and go back to have it removed and the port flushed again. Make sure you keep on top of the diarrhea if you get it. my brother takes Lomotil and imodium. ue is right, don't be shy about using depends. My brother has to use them because since his rectal surgery, he has accidents because he can't make it fast enough to the bathroom. Sue once told me, "depends become your best friends.) LOL, it has saved my brother and dad from doing a lot of laundry. My brother had the 5_FU, irinotecan, leucovorin and erbitux until he got really sick with blood clots. He was placed on low doses of the meds but recently found his heart is weak from chemo drugs he had in 2000 for non hodgkins lymphoma, as well as the chemo meds he's on now. I guess it's just becoming too much for his heart. He is on irinotecan only now, but at a low dose.
I wish you well with your journey to fight this monster.
Lin
Michael, I forgot when I mentioned the cream I was given, never use it before the treatment, only after. Otherwise it's like putting lotion on to get a better tan. It takes a couple of weeks to really get the side effects, I found. I had the pump full time 24/7 for five weeks. They called it a baby bottle. It's about the size of a can of pop, maybe a bit bigger.
The radiation takes a really short amount of time, maybe a couple of minutes.
Jan
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Welcome
Welcome to another link of ASC and you were helpful to me on the other board regarding my brother. That sounds like very common practice and he has a very good chance with the protocol that he will be receiving. He probably will have some discomfort down there because of the radiation so if that happens have him get Calmoseptine (over the counter) to alleviate the burn. Tell him he is welcome anytime on this board and thanks for being such a good friend to him.
Kim
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Sue, that's what I found wasTrubrit said:One more thing
Sitz Bath - Oh my word, this one thing saved my rear so many times.
Sue - Trubrit
Sue, that's what I found was wonderful, too. But the sitz bath didn't fit anywhere so I just used epsom salts in the tub with luke warm water a few inches deep.
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Thanks again
Thank you all for sharing and support. Michael has had his port put in and will start treatments (radiation and chemo) this coming Monday, Dec. 15th. He's in good spirits. Thank goodness the treatment is only 6 weeks. By the time he may possibly have side effects, he'll be half way through so that's good.
Thanks again everyone,
Jim
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Sending best wishesjimwins said:Thanks again
Thank you all for sharing and support. Michael has had his port put in and will start treatments (radiation and chemo) this coming Monday, Dec. 15th. He's in good spirits. Thank goodness the treatment is only 6 weeks. By the time he may possibly have side effects, he'll be half way through so that's good.
Thanks again everyone,
Jim
Tell Michael (Raleighmusicguy - I like the name) to pop in on us now and again, espeically if he has any more questions. And also, I am sending him good thoughts, vibes and much swinging of the chickens, that all goes well, and he breezes (one of my Oncologists favourite words) through treatments.
Sue - Trubrit
0
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