Tips to help prepare for Treatment?
I'll be starting the Nigro Protocal soon and trying to think of things I can do now while I still feel good to help be prepared...or am I over thinking it? I do have a supportive partner but one person can only do so much and work full-time too.
I've signed up for daily transportantion (if I just can't). Gotten a bunch of comfortable clothes, easy on and off stuff. Getting reconnected with my spiritual community and meditation and healing.
Thinking about one of those meal delivery services and online grocery delivery as well.
The main fears at the moment though are being ready for the side affects of Mitomycin and 5-FU and 6 weeks of Radiation followed by financial worries going into short term dissability.
Seems mouth ulcers are high up there on the common affects so have baking soda and L-Glutamine ready, any other advice? I can probably count on the diarrhea since I lean that way anyway so any advice besides immodium is wonderful. I'm already not a big eater and not overweight so this too will most likely be a struggle to keep nourished. I'm also fair skinned so they already warned me I might burn more than some.
These are just a few things I've thought about so please, anything you learned helped you in order to be more prepared would be so appreciated.
Thank you all
Comments
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Guyflyworth it
I think you have made some good preparations so far. If there are supplies like high quality toilet paper or baby wipes you can stock up on that might be good. I also stocked up on laundry detergen, etc so I didn’t have to make any trips to Walmart. If there are any special occasions that fall during your treatment you might want to get those gifts/cards now too. I went out and got my kids’ Christmas presents early too since that fell during my treatment too. There is a magic mouthwash the oncologist can prescribe for you if the mouth sores get bad, as well as prescription strength diarrhea meds. They will prescribe those if and when you need them. Keep us posted on how you are doing. Focus on how good the results from treatment are, I’m assuming you have no spread to lymph nodes? Prognosis is great for you so all this will be worth it!
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Good adviceMollymaude said:Guyflyworth it
I think you have made some good preparations so far. If there are supplies like high quality toilet paper or baby wipes you can stock up on that might be good. I also stocked up on laundry detergen, etc so I didn’t have to make any trips to Walmart. If there are any special occasions that fall during your treatment you might want to get those gifts/cards now too. I went out and got my kids’ Christmas presents early too since that fell during my treatment too. There is a magic mouthwash the oncologist can prescribe for you if the mouth sores get bad, as well as prescription strength diarrhea meds. They will prescribe those if and when you need them. Keep us posted on how you are doing. Focus on how good the results from treatment are, I’m assuming you have no spread to lymph nodes? Prognosis is great for you so all this will be worth it!
I finally get my petscan this week so will know for sure but they didn't think it has spread by the catscan, nothing obvious anyway. One of the nurses told me to get one of those attachments for the toilet so I got one called Tushy lol...wash instead of wipe she said. I hadn't thought about cards and stuff, nice idea! Thank you!
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guyfly
Good that you are trying to be prepared as possible. I had no one to ask for advice when I went through treatment in 2008, so I was pretty clueless. Treatment could have been easier for me had I known back then what I have learned since. Here are some things I learned on my own and from others.
DIET: Your appetite may crash and your taste may change, so be ready to switch things up quickly so you can keep up your weight as much as possible. Protein is important during treatment, and eggs, chicken and fish are good sources. Beef (with caution) if your insides can handle it. Protein shakes and Greek yogurt are also good. I think the main thing is eat what you have a taste for and just eat!
MOUTH SORES: On day 1 of treatment, begin swishing with a mix of baking soda or salt in water several times daily. If that doesn't work, at the first sign of mouth sores, ask your doctor to prescribe Magic Mouthwash for you.
DIARRHEA: One of the most horrible side effects, especially when the bum starts feeling the burn. Toilet paper is pretty abrasive, so wipes may be better--just don't flush them unless they are the flushable type. There is a type of bidet attachment for a toilet that some people use. As for trying to control the diarrhea, make sure to have Immodium on hand and if that is not effective, ask your doctor to prescribe Lomotil for you. Try to avoid foods with fiber, primarily fresh fruits and veggies. If diarrhea plagues you, try the BRAT diet: Bananas, Rice (white), Applesauce and Toast (white) for short-term relief.
NAUSEA: Hopefully, your doctors will prescribe anti-nausea meds for you prior to the start of treatment. Take them at the first hint of queasiness, when they will be the most effective.
RADIATION BURNS: Yes, it can happen. I was initially given Aquaphor, but there are other things to try if that doesn't help, such as Aloe and other products, such as Domeboro. There are many different ones that individuals have tried and found effective. I wish I could give you more names, but please understand that my treatment was 11 years ago, so I've probably forgotten more than I remember after all these years!
REST: I was extremely fatigued, a common side effect. I am not a person who naps during the day, but I found it necessary during treatment. Rest is good!
PUBLIC PLACES: Your immune system will be knocked down during treatment, so keep in mind that going out in public, even to the hospital or treatment center, can expose you to germs, viruses, etc. Avoid people who appear to be sick, such as having a cold, and even wear a mask if necessary.
As I said above, it's been awhile for me and I'm sure I'm leaving out some very important points. If I think of anything else, I will come back and add. I hope you will get the best possible news once you have your PET scan--that your tumor has not spread. My tumor was right on the borderline of stage 1 and 2, with no spread. I had 2 rounds of Mitomycin and Fluorouracil and 30 radiation treatments. I am still here 11 years later and life is good--just a few little hiccups with the bowels now and then, but nothing I can't handle. My hope for you is that 11 years from now, you will be coming back here and helping others who will just be beginning their journey. I wish you all the very best and hope you'll keep us posted on how things go for you. You can do this!
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Great News!mp327 said:guyfly
Good that you are trying to be prepared as possible. I had no one to ask for advice when I went through treatment in 2008, so I was pretty clueless. Treatment could have been easier for me had I known back then what I have learned since. Here are some things I learned on my own and from others.
DIET: Your appetite may crash and your taste may change, so be ready to switch things up quickly so you can keep up your weight as much as possible. Protein is important during treatment, and eggs, chicken and fish are good sources. Beef (with caution) if your insides can handle it. Protein shakes and Greek yogurt are also good. I think the main thing is eat what you have a taste for and just eat!
MOUTH SORES: On day 1 of treatment, begin swishing with a mix of baking soda or salt in water several times daily. If that doesn't work, at the first sign of mouth sores, ask your doctor to prescribe Magic Mouthwash for you.
DIARRHEA: One of the most horrible side effects, especially when the bum starts feeling the burn. Toilet paper is pretty abrasive, so wipes may be better--just don't flush them unless they are the flushable type. There is a type of bidet attachment for a toilet that some people use. As for trying to control the diarrhea, make sure to have Immodium on hand and if that is not effective, ask your doctor to prescribe Lomotil for you. Try to avoid foods with fiber, primarily fresh fruits and veggies. If diarrhea plagues you, try the BRAT diet: Bananas, Rice (white), Applesauce and Toast (white) for short-term relief.
NAUSEA: Hopefully, your doctors will prescribe anti-nausea meds for you prior to the start of treatment. Take them at the first hint of queasiness, when they will be the most effective.
RADIATION BURNS: Yes, it can happen. I was initially given Aquaphor, but there are other things to try if that doesn't help, such as Aloe and other products, such as Domeboro. There are many different ones that individuals have tried and found effective. I wish I could give you more names, but please understand that my treatment was 11 years ago, so I've probably forgotten more than I remember after all these years!
REST: I was extremely fatigued, a common side effect. I am not a person who naps during the day, but I found it necessary during treatment. Rest is good!
PUBLIC PLACES: Your immune system will be knocked down during treatment, so keep in mind that going out in public, even to the hospital or treatment center, can expose you to germs, viruses, etc. Avoid people who appear to be sick, such as having a cold, and even wear a mask if necessary.
As I said above, it's been awhile for me and I'm sure I'm leaving out some very important points. If I think of anything else, I will come back and add. I hope you will get the best possible news once you have your PET scan--that your tumor has not spread. My tumor was right on the borderline of stage 1 and 2, with no spread. I had 2 rounds of Mitomycin and Fluorouracil and 30 radiation treatments. I am still here 11 years later and life is good--just a few little hiccups with the bowels now and then, but nothing I can't handle. My hope for you is that 11 years from now, you will be coming back here and helping others who will just be beginning their journey. I wish you all the very best and hope you'll keep us posted on how things go for you. You can do this!
Wow, congratulations on your recovery! Thank you for all the wonderful information and support!
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guyflyguyfly said:Great News!
Wow, congratulations on your recovery! Thank you for all the wonderful information and support!
You are most welcome! One more thing I forgot to note when listing things to help with radiation burns is there is a cream called Silver Sulfadiazine, available by prescription. It was prescribed for me and is commonly prescribed for people going through this treatment. One word of caution with it--make sure it is completely removed prior to radiation treatments, as it contains metal and will intensify the burning effects of the radiation.
Again, I wish you all the best with your treatment!
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My only thought (depending on
My only thought (depending on your hospital) is not to stock up too much on special creams since UCSF told me exactly what they wanted me to use, they didn't want me to use anything else, and they provided them all to me. (So it made it easy.)
One think that I had to order from Amazon when it was happening was adult diapers because I had it very very bad with the Diarrhea. My case was extreme, and they put me on heavy medication to prevent it , but for a while there, I couldn't get from the bed to the bathroom.
Meal delivery is a great idea. I used that too.
I didn't have any mouth sores.
Take the anti-nausea medicine BEFORE you start to feel bad. The only trouble I had was when I didn't and "tried to sleep it off" when I had an upset stomach. Otherwise, it wasn't too bad.
I was tired and slept almost every afternon after treatment.
Although in week 1 it seems like the six weeks will never end, you will see that it goes by fast. Give yourself a couple of weeks after treatment to start to feel better before going back to work.
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Items Useful furing Treatment/Post Treatment
I was diagnosed with Stage 2 anal cancer in 2008. Below is a list of items that might be useful for you.
Ensure
Immodium
Jello
Aquaphor
Moist Alcohol Free Towelettes
Hand Held Shower Spray
Bananas
White bread for toast and toasted cheese sandwiches
I liked dill pickles
Gatorade
Sanitary pads to line you underwear
Waterproof pad for your bed that can easily be washed
Loose fitting underwear
Dove body wash for private areas
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Useful
I used a portable bidet, disposable wipes, took painkillers as required and was prepared for next level of pain relief, and kept on top of nausea medication. I used a mouthwash which helped with the sore mouth problem. As the treatment went on, I sat on a sheepskin rug (It became my best friend for a while). Loose clothing and go commando whenever possible. My appetite was completely disrupted going off some things completely even months after treatment (that ended in January 2013).
Best wishes for an uneventful journey in your treatment!
Liz
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How to prepare
I finished treatment June 2018 and I am cancer free so worht it all. I would say one of the worst side effects for me was my mouth! Coconut oil put a teaspoon in your mouth and swish for about 3 mintues. It coats and soothe your mouth. Ask what is in the that mouth wash, holy crap it is horrendous.
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Magic Mouthwash
Here is a link for the ingredients in Magic Mouthwash, as given on the Livestrong website.
https://www.livestrong.com/article/123756-ingredients-magic-mouthwash/
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GREAT LISTmxperry220 said:Items Useful furing Treatment/Post Treatment
I was diagnosed with Stage 2 anal cancer in 2008. Below is a list of items that might be useful for you.
Ensure
Immodium
Jello
Aquaphor
Moist Alcohol Free Towelettes
Hand Held Shower Spray
Bananas
White bread for toast and toasted cheese sandwiches
I liked dill pickles
Gatorade
Sanitary pads to line you underwear
Waterproof pad for your bed that can easily be washed
Loose fitting underwear
Dove body wash for private areas
Thanks for the great list...I've gotten pretty much all of it and more like lots of soups and juices, stuff for great protein shakes but hadn't thought about the pads...great idea as not keen on wearing depends yet, hoping it wont happen but knowing up front helps.
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thank youpializ said:Useful
I used a portable bidet, disposable wipes, took painkillers as required and was prepared for next level of pain relief, and kept on top of nausea medication. I used a mouthwash which helped with the sore mouth problem. As the treatment went on, I sat on a sheepskin rug (It became my best friend for a while). Loose clothing and go commando whenever possible. My appetite was completely disrupted going off some things completely even months after treatment (that ended in January 2013).
Best wishes for an uneventful journey in your treatment!
Liz
Ohhh sheepskin, good idea! Somebody said one of those donut pillows too but haven't found a comfortable one yet. Adding sheepskin rug to my list thank you! I got the bidet and a hand help shower attatchemnt and love them already.
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awesomekevans9092 said:How to prepare
I finished treatment June 2018 and I am cancer free so worht it all. I would say one of the worst side effects for me was my mouth! Coconut oil put a teaspoon in your mouth and swish for about 3 mintues. It coats and soothe your mouth. Ask what is in the that mouth wash, holy crap it is horrendous.
Coconut oil got it! Right now already swishing whenever I think about it with soda and sea salt.
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Tips to help prepare for treatment
Hope you will be fortunate and have wonderful nurses, especially the nurses that work wtih the radiation oncologists. Nurses, more so than MDs are the ones that can offer suggestions about dealing with side effects; often they will supply you with creams, and other things
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Thank you yes!tanda said:Tips to help prepare for treatment
Hope you will be fortunate and have wonderful nurses, especially the nurses that work wtih the radiation oncologists. Nurses, more so than MDs are the ones that can offer suggestions about dealing with side effects; often they will supply you with creams, and other things
My Radiation Oncology Nurse is name Free and is a really great compassionate cool lady. Another one is the Radiation tech for the TOMO machine, I enjoy talking to her every day. Done with Week two of treatment and all is pretty great. Worse side affect so far is only Mucositis in my mouth and throat that sux but so much better off than I thought I would be and yes, the nurses and techs are being so great!
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Magic Mouthwashkevans9092 said:How to prepare
I finished treatment June 2018 and I am cancer free so worht it all. I would say one of the worst side effects for me was my mouth! Coconut oil put a teaspoon in your mouth and swish for about 3 mintues. It coats and soothe your mouth. Ask what is in the that mouth wash, holy crap it is horrendous.
Yep it's horrendous alright but as my Musositis is progressing the numbing by that stuff is appreciated more and more. I do not like to swallow it though.
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I am glad that your first twoguyfly said:Thank you yes!
My Radiation Oncology Nurse is name Free and is a really great compassionate cool lady. Another one is the Radiation tech for the TOMO machine, I enjoy talking to her every day. Done with Week two of treatment and all is pretty great. Worse side affect so far is only Mucositis in my mouth and throat that sux but so much better off than I thought I would be and yes, the nurses and techs are being so great!
I am glad that your first two weeks went OK. Hang in there. Only 4 more to go.
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Note of Cautionguyfly said:Thank you yes!
My Radiation Oncology Nurse is name Free and is a really great compassionate cool lady. Another one is the Radiation tech for the TOMO machine, I enjoy talking to her every day. Done with Week two of treatment and all is pretty great. Worse side affect so far is only Mucositis in my mouth and throat that sux but so much better off than I thought I would be and yes, the nurses and techs are being so great!
I did not start to have the severe side effects until week 5 of treatments then all hell broke loose as they say.
Mike
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Just Wanted To Send Some Positive Vibes To You...
I hope you are getting through treatment alright. I know it's rough but you can do it! I'm about 9 weeks from last radiation and doing well. Didn't think I would feel as good as I do so fast. The 2 weeks after treatment were pretty tough but healing started quickly after that. Soaking, using creams, resting a lot, and a pain pill helps a lot to get through the day.
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