Newly diagnosed and pretty scared about treatments - Female, 45 and Praying

geneviasue

Hello.
I'm a 45 year old female, recently diagnosed (Sept 19, 2012) with squamous cell carcinoma, anal cancer. I, like many others apparently was told by my family doctor my pain and discomfort were likely a hemmoroid. After a bleeding spell, I insisted on a colonscopy which revealed the tumor. 3 cms or T2. My PET shows no spread, totally localized. My treatment plan in 2-96 hours chemo and 30 radiation treatments (M-F, 6 weeks). The chemo is MIT and pump of 5FU for 96 hours, first week and last.
The radiation burns is where my fear lies and the scarring afterwards I suppose. I'm reading some of these posts about the process, the pain and the oozing of fluids then I read people who work the whole time and call it a "sunburn". I'm totally trusting in the Lord for the mildest route. I'm praying for others listed here that are currently experiencing this horrible things.

A couple of questions:
* What is the recommended lotion/cream/ointment to use to keep my skin hydrated? Someone said if I start early on during treatment that it will help as I near the end.
* So, the worst is after treatment ends? The next week maybe? Should I expect to need help during that time? My husband works but can take off if needed. I'm taking FMLA just so I can totally focus on healing and recovery.
* I'm also concerned about the pain meds. I've never been one to take meds unless I absolutely had too. I don't want to end up addicted to anything either (never have been, never want to be).

I have a good support system around me. My husband is the greatest though we've never faced anything like this before. I'm not a good patient normally and he has a weak stomach. So this might get interesting. My mom is nearby and she is a nurse but I really don't want to lean on her because of the stress it would add to her. I'm very independent and the thought so "helplessnesS" or being "out of control" of this, freaks me out. Not to mention, this is just a horrible area to be dealing with. I'm like someone said in another post. I will probably avoid eating just so I don't have to pass it.

Ok..well, thanks for any feedback and prayers too. My name is Genevia from TN. God bless..

law522

Newly diagnosed and VERY scared too--
Hi Genevia,
I am so sorry you have to be here. but you did find the best place for information on the internet. I found this board a few days after I was diagnosed and the posts/comments from members that have been there is invaluable to me as i prepare for my Journey. The advice and information is the best I have found anywhere. (who better to get it from than those that have been through it or are going through it)

I have my list of "must have" items ready to shop for to help during the healing process which looks like is the worse AFTER the treatment has ended. I also have a list of things I will need to protect my house if i get the messies like some have mentioned and my list of foods just in case i get hungry but honestly, since diagnosed I have lost weight as I am a MESS and have no appetite. Like a lot of people here, one day I was perfectly healthy going in for routine surgery and the next day my world is shattered. (On a positive note, I remember one of the first posts to me on here and it reassured me that if you are going to get cancer, this is the one that is highly curable)

I am going to try and work 5 hours a day in the am during the treatment and then take off the 2 to 4 weeks after depending on how I feel.

I had "hemmy" surgery on Oct 3rd and was diagnosed with squamous cell carcinoma on Oct 9th.

I have also found from reading the posts that everyone reacts different to the treatment.

I healed very quickly from the Hemmy surgery, so I am praying that it will be the same with this treatment.

My main concern is how they want to treat me.
my cancer was 2cm and well defined they classified me as T1 N0 M0
so far they have only given me a CT scan and NOT a PET scan.
the surgeon is suggesting just RAD on the area they removed the hemmy
with chemo and NO Rad on my nodes

I go to see the Chemo Dr today.
This is the last person I need to meet in my team

Do they have a treatment date for you to start?
I was trying to figure out when i am going to feel the worse and looks like my timing sucks and it will be over the Holdidays
I am not sure if postponing treatment for a few weeks would make a difference or not

I will be back tonight and let ya know what Dr has to say

XO Linda

mp327

Hi Genevia--
So sorry that your diagnosis has led you to this site, but as Linda has said, it's a great place for information and support. We really do try to help one another here and I hope we can help you too. Do you have a start date yet for your treatment? You will be getting the standard protocol. While it is true that a lot of people have the worst time in the first couple of weeks following treatment, recovery is relatively quick. The reason those 2 weeks can be so miserable is because the effects of radiation are cumulative and really ramp up during that time. Radiation can continue to work on the tumor for up to 6 months after treatment ends, but fortunately, the somewhat miserable side effects will subside long before the end of 6 months. I was advised to begin using Aquaphor on day 1 of treatment and continue with it until it was no longer effective. At that time, my rad onc prescribe silver sulfadiazine for me, which helped somewhat. Other people swear by Domeboro, pure aloe, vitamin E liquid and others. It really gets down to being what works for each individual. The main thing to remember is to have NO traces of any of these products on your skin prior to receiving a rad treatment, as that can worsen the burning. One very important thing to remember is to drink lots of water! I made it a point to drink 8 oz. of water after each trip to the bathroom so I could avoid dehydration. Many people get diarrhea, as I did, and it depletes the body of essential fluids very quickly, so they must be replenished on a continual basis. Also, appetite can be a problem, but getting enough protein is essential for healing and strength. I always tried to get a little protein with each meal or snack, however, it was difficult towards the end of treatment, as my appetite totally tanked. Do NOT be afraid of taking pain meds. You will need to keep the pain manageable, which means continual use of them once started. Once the pain gets to a certain level after getting off meds, it's extremely difficult, if not impossible, to gain control of it again. This was a huge mistake that I made. Have someone drive you to treatments once you find you need the pain meds. That's what kept me from taking them as I should have, as I was driving myself every day. Don't do that! Mouth sores can be another side effect, so from day one, I would recommend swishing your mouth frequently during the day with a solution of water and baking soda or salt. I would not turn down any offers of help from close family or friends. They want to feel useful and like they are doing something to help you get through this. I tried to be independent (it took me 3 hours to clean my bathroom one day!) and I don't recommend that. There will be days when you may need assistance with every day chores, such as light housekeeping. Don't refuse those offers of help! I know you don't want to stress your mom out, but having her involved in your journey will probably be good for both of you, especially since she lives near you. It is a mother's job to care for her child and I think that it doesn't matter how old that child is. She will feel loved and appreciated and you will have the best care possible.

I wish you all the very best in this journey. It's not easy, but you can do it, as the rest of us have. Please come here often to cry, vent, or seek support or advice. We are here for you! Take care and keep us posted.

geneviasue

law522 said:

Newly diagnosed and VERY scared too--
Hi Genevia,
I am so sorry you have to be here. but you did find the best place for information on the internet. I found this board a few days after I was diagnosed and the posts/comments from members that have been there is invaluable to me as i prepare for my Journey. The advice and information is the best I have found anywhere. (who better to get it from than those that have been through it or are going through it)

I have my list of "must have" items ready to shop for to help during the healing process which looks like is the worse AFTER the treatment has ended. I also have a list of things I will need to protect my house if i get the messies like some have mentioned and my list of foods just in case i get hungry but honestly, since diagnosed I have lost weight as I am a MESS and have no appetite. Like a lot of people here, one day I was perfectly healthy going in for routine surgery and the next day my world is shattered. (On a positive note, I remember one of the first posts to me on here and it reassured me that if you are going to get cancer, this is the one that is highly curable)

I am going to try and work 5 hours a day in the am during the treatment and then take off the 2 to 4 weeks after depending on how I feel.

I had "hemmy" surgery on Oct 3rd and was diagnosed with squamous cell carcinoma on Oct 9th.

I have also found from reading the posts that everyone reacts different to the treatment.

I healed very quickly from the Hemmy surgery, so I am praying that it will be the same with this treatment.

My main concern is how they want to treat me.
my cancer was 2cm and well defined they classified me as T1 N0 M0
so far they have only given me a CT scan and NOT a PET scan.
the surgeon is suggesting just RAD on the area they removed the hemmy
with chemo and NO Rad on my nodes

I go to see the Chemo Dr today.
This is the last person I need to meet in my team

Do they have a treatment date for you to start?
I was trying to figure out when i am going to feel the worse and looks like my timing sucks and it will be over the Holdidays
I am not sure if postponing treatment for a few weeks would make a difference or not

I will be back tonight and let ya know what Dr has to say

XO Linda

Treatment
Hi Linda,
I start my treatments on Monday, Oct 29, 2012. I haven't decided on any sort of diet yet. I've read what not to eat and looks like I need to stock up on anything white. My radiation is IRMT at a dose of 54 which I think is the most commonly used now. I did purchase some blue pads, some alcohol free disposable wash cloths and some disposable undies. I've cleaned everything in my house..some things twice. I heard lots of different responses about hair loss too. I guess I will know soon enough.
Hope you do well. I will have you in my prayers. God is able to do all things.

Lorikat

law522 said:

Newly diagnosed and VERY scared too--
Hi Genevia,
I am so sorry you have to be here. but you did find the best place for information on the internet. I found this board a few days after I was diagnosed and the posts/comments from members that have been there is invaluable to me as i prepare for my Journey. The advice and information is the best I have found anywhere. (who better to get it from than those that have been through it or are going through it)

I have my list of "must have" items ready to shop for to help during the healing process which looks like is the worse AFTER the treatment has ended. I also have a list of things I will need to protect my house if i get the messies like some have mentioned and my list of foods just in case i get hungry but honestly, since diagnosed I have lost weight as I am a MESS and have no appetite. Like a lot of people here, one day I was perfectly healthy going in for routine surgery and the next day my world is shattered. (On a positive note, I remember one of the first posts to me on here and it reassured me that if you are going to get cancer, this is the one that is highly curable)

I am going to try and work 5 hours a day in the am during the treatment and then take off the 2 to 4 weeks after depending on how I feel.

I had "hemmy" surgery on Oct 3rd and was diagnosed with squamous cell carcinoma on Oct 9th.

I have also found from reading the posts that everyone reacts different to the treatment.

I healed very quickly from the Hemmy surgery, so I am praying that it will be the same with this treatment.

My main concern is how they want to treat me.
my cancer was 2cm and well defined they classified me as T1 N0 M0
so far they have only given me a CT scan and NOT a PET scan.
the surgeon is suggesting just RAD on the area they removed the hemmy
with chemo and NO Rad on my nodes

I go to see the Chemo Dr today.
This is the last person I need to meet in my team

Do they have a treatment date for you to start?
I was trying to figure out when i am going to feel the worse and looks like my timing sucks and it will be over the Holdidays
I am not sure if postponing treatment for a few weeks would make a difference or not

I will be back tonight and let ya know what Dr has to say

XO Linda

Linda, I am one year after
Linda, I am one year after treatments, in remission, and have NEVER had a PET scan.... Only CT scans. I was dx SCC, Anal, T2NOMO. I go to
MD Anderson in Houston and they are one of the best cancer treatment hospitals known (if not THE best!). I am on my way to Houston for my one year ck up and will ask why one type of scan is chosen over the other.... Being scared and worried is sooo normal. Liz, one of the ladies here on the site walked me through the beginning of this journey, and her input and explanations (along with the many kind people on this site) kept me sane during treatment and afterwards.

I just know I would have freaked if I had not already known about dialators being used during radiation treatments! Hugs

geneviasue

mp327 said:

Hi Genevia--
So sorry that your diagnosis has led you to this site, but as Linda has said, it's a great place for information and support. We really do try to help one another here and I hope we can help you too. Do you have a start date yet for your treatment? You will be getting the standard protocol. While it is true that a lot of people have the worst time in the first couple of weeks following treatment, recovery is relatively quick. The reason those 2 weeks can be so miserable is because the effects of radiation are cumulative and really ramp up during that time. Radiation can continue to work on the tumor for up to 6 months after treatment ends, but fortunately, the somewhat miserable side effects will subside long before the end of 6 months. I was advised to begin using Aquaphor on day 1 of treatment and continue with it until it was no longer effective. At that time, my rad onc prescribe silver sulfadiazine for me, which helped somewhat. Other people swear by Domeboro, pure aloe, vitamin E liquid and others. It really gets down to being what works for each individual. The main thing to remember is to have NO traces of any of these products on your skin prior to receiving a rad treatment, as that can worsen the burning. One very important thing to remember is to drink lots of water! I made it a point to drink 8 oz. of water after each trip to the bathroom so I could avoid dehydration. Many people get diarrhea, as I did, and it depletes the body of essential fluids very quickly, so they must be replenished on a continual basis. Also, appetite can be a problem, but getting enough protein is essential for healing and strength. I always tried to get a little protein with each meal or snack, however, it was difficult towards the end of treatment, as my appetite totally tanked. Do NOT be afraid of taking pain meds. You will need to keep the pain manageable, which means continual use of them once started. Once the pain gets to a certain level after getting off meds, it's extremely difficult, if not impossible, to gain control of it again. This was a huge mistake that I made. Have someone drive you to treatments once you find you need the pain meds. That's what kept me from taking them as I should have, as I was driving myself every day. Don't do that! Mouth sores can be another side effect, so from day one, I would recommend swishing your mouth frequently during the day with a solution of water and baking soda or salt. I would not turn down any offers of help from close family or friends. They want to feel useful and like they are doing something to help you get through this. I tried to be independent (it took me 3 hours to clean my bathroom one day!) and I don't recommend that. There will be days when you may need assistance with every day chores, such as light housekeeping. Don't refuse those offers of help! I know you don't want to stress your mom out, but having her involved in your journey will probably be good for both of you, especially since she lives near you. It is a mother's job to care for her child and I think that it doesn't matter how old that child is. She will feel loved and appreciated and you will have the best care possible.

I wish you all the very best in this journey. It's not easy, but you can do it, as the rest of us have. Please come here often to cry, vent, or seek support or advice. We are here for you! Take care and keep us posted.

I hate cancer!!
Hi MP,
Thanks for your comments. This site is great and the ppl on it are amazing. Treatments start Mon, Oct 29, 2012. I appreciate your thoughts on my mom. I will lean on her when I get to that point. I would want to do it for my children and she is no different. Just trying to protect her I suppose. I have two grown sons too one of which is an EMT so he understands a great dealt about this process.
I've never looked so forward to looking back on anything. My radiologist did say this cancer is totally treatable. He also said that in the end that I would be considered cured vs in remission.
I'm 45 and in pretty good shape. I could lose a few lbs but I'm average I suppose. I can't imagine going through as an elderly person or someone who doesn't have family/friends nearby. I also can't imagine facing cancer without the assurance from the Lord that "my plans are to prosper you not harm you" Jeremiah 29:11.
I'm blessed to have found this site and now connected to an outlet and understanding fellow AC'ers.

chrisfromny

mp327 said:

Hi Genevia--
So sorry that your diagnosis has led you to this site, but as Linda has said, it's a great place for information and support. We really do try to help one another here and I hope we can help you too. Do you have a start date yet for your treatment? You will be getting the standard protocol. While it is true that a lot of people have the worst time in the first couple of weeks following treatment, recovery is relatively quick. The reason those 2 weeks can be so miserable is because the effects of radiation are cumulative and really ramp up during that time. Radiation can continue to work on the tumor for up to 6 months after treatment ends, but fortunately, the somewhat miserable side effects will subside long before the end of 6 months. I was advised to begin using Aquaphor on day 1 of treatment and continue with it until it was no longer effective. At that time, my rad onc prescribe silver sulfadiazine for me, which helped somewhat. Other people swear by Domeboro, pure aloe, vitamin E liquid and others. It really gets down to being what works for each individual. The main thing to remember is to have NO traces of any of these products on your skin prior to receiving a rad treatment, as that can worsen the burning. One very important thing to remember is to drink lots of water! I made it a point to drink 8 oz. of water after each trip to the bathroom so I could avoid dehydration. Many people get diarrhea, as I did, and it depletes the body of essential fluids very quickly, so they must be replenished on a continual basis. Also, appetite can be a problem, but getting enough protein is essential for healing and strength. I always tried to get a little protein with each meal or snack, however, it was difficult towards the end of treatment, as my appetite totally tanked. Do NOT be afraid of taking pain meds. You will need to keep the pain manageable, which means continual use of them once started. Once the pain gets to a certain level after getting off meds, it's extremely difficult, if not impossible, to gain control of it again. This was a huge mistake that I made. Have someone drive you to treatments once you find you need the pain meds. That's what kept me from taking them as I should have, as I was driving myself every day. Don't do that! Mouth sores can be another side effect, so from day one, I would recommend swishing your mouth frequently during the day with a solution of water and baking soda or salt. I would not turn down any offers of help from close family or friends. They want to feel useful and like they are doing something to help you get through this. I tried to be independent (it took me 3 hours to clean my bathroom one day!) and I don't recommend that. There will be days when you may need assistance with every day chores, such as light housekeeping. Don't refuse those offers of help! I know you don't want to stress your mom out, but having her involved in your journey will probably be good for both of you, especially since she lives near you. It is a mother's job to care for her child and I think that it doesn't matter how old that child is. She will feel loved and appreciated and you will have the best care possible.

I wish you all the very best in this journey. It's not easy, but you can do it, as the rest of us have. Please come here often to cry, vent, or seek support or advice. We are here for you! Take care and keep us posted.

Hi Genevia!
Sorry to hear about your diagnosis, but the number one thing to keep in mind is that it has a very high cure rate! Keeping a positive mindset is one of the most important things to dealing with the stress and recovery.

I haven't been diagnosed with AC myself, but my mom has and she's one week post-treatment as of today. I agree 100% with everything mp327 said, but I did want to include a comment about the mouth sores.

My mom's doctor had originally told her to use baking soda + water as a mouth rinse, but a friend of ours said that her doctor had suggested Biotene. It's certainly more expensive than a little box of baking soda, but we found it to work better (we used it during the 2nd chemo treatment) than the baking soda, and it's easier because it's sitting there ready to go. No fussing with mixing it.

You've found a great community of people here! They've help me and my mom immensely!!! Don't hesitate to ask questions to the group...we've found that in many ways we get more helpful and complete answers than from our own team of doctors.

Wishing you all the best!
Chris

geneviasue

chrisfromny said:

Hi Genevia!
Sorry to hear about your diagnosis, but the number one thing to keep in mind is that it has a very high cure rate! Keeping a positive mindset is one of the most important things to dealing with the stress and recovery.

I haven't been diagnosed with AC myself, but my mom has and she's one week post-treatment as of today. I agree 100% with everything mp327 said, but I did want to include a comment about the mouth sores.

My mom's doctor had originally told her to use baking soda + water as a mouth rinse, but a friend of ours said that her doctor had suggested Biotene. It's certainly more expensive than a little box of baking soda, but we found it to work better (we used it during the 2nd chemo treatment) than the baking soda, and it's easier because it's sitting there ready to go. No fussing with mixing it.

You've found a great community of people here! They've help me and my mom immensely!!! Don't hesitate to ask questions to the group...we've found that in many ways we get more helpful and complete answers than from our own team of doctors.

Wishing you all the best!
Chris

Thanks!!
Chris,
So funny to see your response here. I had clicked on your posts (which are awesome by the way) and was going to reply to one of them when I saw your reply. I appreciate the Biotene. I'll get some today..I've seen it in stores.

I've been very positive and feel I have dealt with this pretty well considering, well, that it's cancer. I'm so thankful that the cure rate is so high. I want to go to heaven, just not anytime soon..I still have work to do here.

I'll be praying for you and your mom. She is blessed to have you so close to her and I know that this has to be taking on toll on you too. My oldest son is an EMT and he understands this kind of stuff well. I've shielded my sons from all this information because I want them to go about life as normal. My husband and I will handle everything up until it gets to a point they need to know. Of course, that's what I'm telling myself. They have probably already done their research and likely more as much as I do. sigh...

I think I'll post my story too because I think it's important for people to understand that the "doctor" process is a nightmare. I've had 4 "intelligent fingers" examine me and each one said the same thing. I've had a CT Scan then a PET scan..why even do the CT if you're going to do a PET. I've had a problem with my doctors knowing what the other one is doing. My chemo was suppose to start on Oct 22nd but I hadn't even met with the radiologist yet so it was delayed a week. I did meet with him on the 22nd (late afternoon) and did all the set up stuff. I have the "X's" to prove it..haha. I was also told I would get 3 small blue tattoo'd dots in my pelvis area so that the radiation is perfectly aligned each time.

Chris, I'm sending nothing but great thoughts and prayers toward you and your mom. Thanks for posting great information and know that you are blessing..to your mom and to us!!

GiGi

geneviasue

geneviasue said:

Thanks!!
Chris,
So funny to see your response here. I had clicked on your posts (which are awesome by the way) and was going to reply to one of them when I saw your reply. I appreciate the Biotene. I'll get some today..I've seen it in stores.

I've been very positive and feel I have dealt with this pretty well considering, well, that it's cancer. I'm so thankful that the cure rate is so high. I want to go to heaven, just not anytime soon..I still have work to do here.

I'll be praying for you and your mom. She is blessed to have you so close to her and I know that this has to be taking on toll on you too. My oldest son is an EMT and he understands this kind of stuff well. I've shielded my sons from all this information because I want them to go about life as normal. My husband and I will handle everything up until it gets to a point they need to know. Of course, that's what I'm telling myself. They have probably already done their research and likely more as much as I do. sigh...

I think I'll post my story too because I think it's important for people to understand that the "doctor" process is a nightmare. I've had 4 "intelligent fingers" examine me and each one said the same thing. I've had a CT Scan then a PET scan..why even do the CT if you're going to do a PET. I've had a problem with my doctors knowing what the other one is doing. My chemo was suppose to start on Oct 22nd but I hadn't even met with the radiologist yet so it was delayed a week. I did meet with him on the 22nd (late afternoon) and did all the set up stuff. I have the "X's" to prove it..haha. I was also told I would get 3 small blue tattoo'd dots in my pelvis area so that the radiation is perfectly aligned each time.

Chris, I'm sending nothing but great thoughts and prayers toward you and your mom. Thanks for posting great information and know that you are blessing..to your mom and to us!!

GiGi

Dilator Question
Ok. I spoke with my radiologist and he mentioned a device specifically designed for vaginal dilation. I'm 45 so this is still important to me..well, at some degree anyway.

So, what should I do. Buy one? Have him order me one? I understand that this are designed for the "scarring" period which is sometime after the rad treatments. Any thoughts on how I go about this? Does it come with instructions? Is there another website for that? Just searching for answers. I don't want to wake up one day and realize I could have done more to make this part of my life less painful.

(If my kids ever see this I'll just die..Grandma asking about a dilator..lol)

Thanks everyone.

GiGi

z

geneviasue said:

Dilator Question
Ok. I spoke with my radiologist and he mentioned a device specifically designed for vaginal dilation. I'm 45 so this is still important to me..well, at some degree anyway.

So, what should I do. Buy one? Have him order me one? I understand that this are designed for the "scarring" period which is sometime after the rad treatments. Any thoughts on how I go about this? Does it come with instructions? Is there another website for that? Just searching for answers. I don't want to wake up one day and realize I could have done more to make this part of my life less painful.

(If my kids ever see this I'll just die..Grandma asking about a dilator..lol)

Thanks everyone.

GiGi

GIGI
Hello, Sorry you had to find us. I was also a T2NOMO, and completed the same exact treatment that you will be having on 6-3-09, and so far so good. I know its scary and we are here for you. The 1st thing my general surgeon told me is this is a very curable cancer. I which you the best. Lori

mp327

geneviasue said:

Dilator Question
Ok. I spoke with my radiologist and he mentioned a device specifically designed for vaginal dilation. I'm 45 so this is still important to me..well, at some degree anyway.

So, what should I do. Buy one? Have him order me one? I understand that this are designed for the "scarring" period which is sometime after the rad treatments. Any thoughts on how I go about this? Does it come with instructions? Is there another website for that? Just searching for answers. I don't want to wake up one day and realize I could have done more to make this part of my life less painful.

(If my kids ever see this I'll just die..Grandma asking about a dilator..lol)

Thanks everyone.

GiGi

HI GiGi--
My rad onc gave me my first dilator the day I finished treatment. I began using it as soon as it was not overly painful to do so. I soon realized I needed to use a larger one, so I ordered a set from a company called Vaginismus. They have a website (Vaginismus.com), so take a look. There are, of course, other kinds than what they offer, which are hard plastic. Some dilators are more flexible, as I understand. I have been using my dilators for 4 years. It's important to do this for reasons of future gyno exams and a resuming a sex life.

As for discussing dilators, that's probably only the beginning of discussions that you thought you'd never have! However, if it concerns this disease, we talk about it here. No need to be embarrassed because we all understand!

mxperry220

Suggestions
I like you am somewhat of a "control freak". During this treatment process I had to realize this was out of my control and in the hands of my doctors. I found Aquaphor ointment worked best for me. I tried several ointments but this one worked the best for me. You can get it at Target, Walmart, CVS, etc. It is over the counter ointment. I did not blister during treatment, but week 5 is when the radiation effect began to really show up. My groin and anal area was very sentitive. I had like a severe sunburn without the blisters. About 3-4 weeks after treatment this began to clear up. I found Advil worked best for me for pain. I took 6-8 daily. I tried the narcotics but either they did not work or there was one that made me totally out of it.

As far as not eating I suggest you try not to do that. It is important that your body has the necessary vitamins and minerals to promote healing. I mainy ate dill pickles, ice cream, toasted cheese sandwiches on white bread, eggs, and drank Ensure. Ensure is full of nutrients. I liked the banana the best. I remember telling my radiation oncologist I hated to eat anything because I knew I would immediately have diarrhea issues. He said it was critical that I ate to give my body the necessary vitamins and minerals it needed to promote healing. I also took and still take immodium. I am 3 years 9 months post treatment and take 3 immodium daily. The radiation doctor said it would not do any harm to take immodium indefinetly. Even though I do not have diarrhea issues my BMs went from 1-2 per day to 3-4 BMs now. This seems to be my new norm.

I was able to drive myself to my treatments. I did have a port in my chest implanted to admisister the chemo and had to have someone take me for this procedure since they put me under anesthesia to do the procedure. I like you wanted to handle the whole treatment process by myself. I treated this as my job during this time and that seemed to help me mentally.

Hope this helps some,
Mike

StruTanToot

Hi Genevia:
I know what you
Hi Genevia:

I know what you are going through...hang on, it does it better, and the wonderful people on this site are here for you. Know that first of all.

I finished treatment on Oct. 8 and am on the mend. When I was first diagnosed, I tried to put together a list of stuff that I would need during treatment. I made sure I had everything before treatment started. Now...side effects don't usually start until the third or fourth week, so you can still get some things your first weeks of treatment.

Everyone responds differently though, so I got as much as I could ready. Below, I am providing a list of things you might need. Some you might not. I read a lot of posts and put this list together.

undergarments (or pads...there is "drainage")
L-glutamine (15 grams twice a day) -- helps with radiation burns. I think this really helped.

bed pads - or towels...so you can lay with your skin exposed.
thermometer
plastic trash cans - for nausea. I put a plastic container with a lid in the car.
ice packs (I did not need)
biotene mouthwash, toothpaste, gum
Dermoplast - spray to ease pain (heard about, but did not use)

Aqauphor - you can get a prescription to have lidocaine .5% mixed with the aquaphor. I did not know this at first. My copay for the prescription was less than the cost of the aquaphor.

Wet wipes--very important. Don't rub, tap after a bm and then dry area with hair dryer. Make sure the wipes have NO alcohol.

domeboro soaks (Domeboro Astringent Solution)
oatmeal baths (I found these very helpful for a sitz bath)
lip balm or vaseline if your lips get dry
Imodium
zyrtec - a lifesaver for me...totally stopped the itching.
protein drinks (Premier are the lowest price for highest amount of protein)
ice/popsicles
ginger tea (for nausea)
Ginger Ale
Water, water, water

My chemo nurse gave me a good IV mixture of anti-nausea meds. I did not get sick at all. Also, one thing causes diarrhea while another thing causes constipation. I was fortunate in that my balanced out and I didn't have to take anything for either for a while.

Near the end, when I was taking more pain medication, I did take a stool softener or laxative. Anyway, have both imodium and a stool softener on hand just in case.

BTW...I kept all my receipts so I could return things I didn't use. I had read some horror stories and bought Depends and all kinds of stuff like that. Didn't need it.

To prevent mouth sores:

• eat/suck on ice starting 15 minutes before your chemo infusion. The coldness prevents the chemo from damaging the mouth. This really works!
• Also, gargle several times a day with a mixture of salt and baking soda. This will also help prevent mouth sores.

I'm sorry to bombard you with information, but I hope this list will help you and save you some time.

All the best to you. You will get through this thing!!!

mp327

StruTanToot said:

Hi Genevia:
I know what you
Hi Genevia:

I know what you are going through...hang on, it does it better, and the wonderful people on this site are here for you. Know that first of all.

I finished treatment on Oct. 8 and am on the mend. When I was first diagnosed, I tried to put together a list of stuff that I would need during treatment. I made sure I had everything before treatment started. Now...side effects don't usually start until the third or fourth week, so you can still get some things your first weeks of treatment.

Everyone responds differently though, so I got as much as I could ready. Below, I am providing a list of things you might need. Some you might not. I read a lot of posts and put this list together.

undergarments (or pads...there is "drainage")
L-glutamine (15 grams twice a day) -- helps with radiation burns. I think this really helped.

bed pads - or towels...so you can lay with your skin exposed.
thermometer
plastic trash cans - for nausea. I put a plastic container with a lid in the car.
ice packs (I did not need)
biotene mouthwash, toothpaste, gum
Dermoplast - spray to ease pain (heard about, but did not use)

Aqauphor - you can get a prescription to have lidocaine .5% mixed with the aquaphor. I did not know this at first. My copay for the prescription was less than the cost of the aquaphor.

Wet wipes--very important. Don't rub, tap after a bm and then dry area with hair dryer. Make sure the wipes have NO alcohol.

domeboro soaks (Domeboro Astringent Solution)
oatmeal baths (I found these very helpful for a sitz bath)
lip balm or vaseline if your lips get dry
Imodium
zyrtec - a lifesaver for me...totally stopped the itching.
protein drinks (Premier are the lowest price for highest amount of protein)
ice/popsicles
ginger tea (for nausea)
Ginger Ale
Water, water, water

My chemo nurse gave me a good IV mixture of anti-nausea meds. I did not get sick at all. Also, one thing causes diarrhea while another thing causes constipation. I was fortunate in that my balanced out and I didn't have to take anything for either for a while.

Near the end, when I was taking more pain medication, I did take a stool softener or laxative. Anyway, have both imodium and a stool softener on hand just in case.

BTW...I kept all my receipts so I could return things I didn't use. I had read some horror stories and bought Depends and all kinds of stuff like that. Didn't need it.

To prevent mouth sores:

• eat/suck on ice starting 15 minutes before your chemo infusion. The coldness prevents the chemo from damaging the mouth. This really works!
• Also, gargle several times a day with a mixture of salt and baking soda. This will also help prevent mouth sores.

I'm sorry to bombard you with information, but I hope this list will help you and save you some time.

All the best to you. You will get through this thing!!!

Great advice, StruTanToot!
I would add to the list of things to have on hand some hard candy and crackers to carry with to help quell nausea. I never went anywhere without them and I never vomited, not even once.

Premier Protein is great stuff! I am a weight lifter and drink it often after a workout or as a meal replacement. It has 30 grams of protein per carton and some nutrients too. I buy mine at Costco by the case. Plenty of protein is essential in the healing process.

Marynb

StruTanToot said:

Hi Genevia:
I know what you
Hi Genevia:

I know what you are going through...hang on, it does it better, and the wonderful people on this site are here for you. Know that first of all.

I finished treatment on Oct. 8 and am on the mend. When I was first diagnosed, I tried to put together a list of stuff that I would need during treatment. I made sure I had everything before treatment started. Now...side effects don't usually start until the third or fourth week, so you can still get some things your first weeks of treatment.

Everyone responds differently though, so I got as much as I could ready. Below, I am providing a list of things you might need. Some you might not. I read a lot of posts and put this list together.

undergarments (or pads...there is "drainage")
L-glutamine (15 grams twice a day) -- helps with radiation burns. I think this really helped.

bed pads - or towels...so you can lay with your skin exposed.
thermometer
plastic trash cans - for nausea. I put a plastic container with a lid in the car.
ice packs (I did not need)
biotene mouthwash, toothpaste, gum
Dermoplast - spray to ease pain (heard about, but did not use)

Aqauphor - you can get a prescription to have lidocaine .5% mixed with the aquaphor. I did not know this at first. My copay for the prescription was less than the cost of the aquaphor.

Wet wipes--very important. Don't rub, tap after a bm and then dry area with hair dryer. Make sure the wipes have NO alcohol.

domeboro soaks (Domeboro Astringent Solution)
oatmeal baths (I found these very helpful for a sitz bath)
lip balm or vaseline if your lips get dry
Imodium
zyrtec - a lifesaver for me...totally stopped the itching.
protein drinks (Premier are the lowest price for highest amount of protein)
ice/popsicles
ginger tea (for nausea)
Ginger Ale
Water, water, water

My chemo nurse gave me a good IV mixture of anti-nausea meds. I did not get sick at all. Also, one thing causes diarrhea while another thing causes constipation. I was fortunate in that my balanced out and I didn't have to take anything for either for a while.

Near the end, when I was taking more pain medication, I did take a stool softener or laxative. Anyway, have both imodium and a stool softener on hand just in case.

BTW...I kept all my receipts so I could return things I didn't use. I had read some horror stories and bought Depends and all kinds of stuff like that. Didn't need it.

To prevent mouth sores:

• eat/suck on ice starting 15 minutes before your chemo infusion. The coldness prevents the chemo from damaging the mouth. This really works!
• Also, gargle several times a day with a mixture of salt and baking soda. This will also help prevent mouth sores.

I'm sorry to bombard you with information, but I hope this list will help you and save you some time.

All the best to you. You will get through this thing!!!

Great list, Strut!
Wish I had that list before treatment!

Marynb

Genevie
Hi Genevia,

Sorry you have to go through this! I am a little more than one year post treatment. I trust that you are at a good hospital for comprehensive treatment! I want to allay some of your fears. I had the same treatment that you describe. I was 59 years old at time of treatment and I also have another cancer, which is not treatable except with surgery. I tell you that so you know that I was not a specimen of good health at time of treatment. That being said, the treatment is very doable. I did not get nauseous from the chemo, did not lose hair, and was able to take care of myself quite well. I am a divorced mom and at the time my daughter was away at college. I cleaned my own home, cooked my own meals, shopped for my own groceries, Shoveled my own driveway, took care of pets,etc. the entire treatment and post treatment. Twice I had very low blood counts and needed neuprogen shots which made me feel like I had the flu. During that time, I used grocery delivery service. I did have the usual radiation burns that were quite painful, but I wore lose sweat pants when I went out, and no underwear. Yes, it was painful for a few weeks, but knowing it was going to heal made it easier to endure.I took nothing but Tylenol. I didn't go the pain killer route because I did not want to add to my troubles and because I needed to take care of myself. Also, I did not find lotion s helpful at all. For me, it was better to keep the area clean. As far as the burns, I doubt anyone could tell where the burns were by looking at me in a bathing suit now. The burns have faded.

These are the things that you will want to get prior to treatment: several pairs of loose fitting pants made of soft fabric, or skirts. I got some soft pullon pants from LL Bean( you won't want zippers) Sitz bath and some solution to put in it, hand held shower( for me essential), baby wipes with no alcohol, thermometer, baby shampoo, wide tooth comb. Also, get your teeth cleaned prior to treatment. If you don't you may get mouth sores. I did not get mouth sores because I had teeth cleaned prior to treatment. You will rinse your mouth with mild saline solution several times a day.

Try not to worry. The treatment is usually not as bad as you are probably imagining. Prayer helped me get through this andmI will surely remember you in my prayers as you go through this. Hugs!

geneviasue

Marynb said:

Genevie
Hi Genevia,

Sorry you have to go through this! I am a little more than one year post treatment. I trust that you are at a good hospital for comprehensive treatment! I want to allay some of your fears. I had the same treatment that you describe. I was 59 years old at time of treatment and I also have another cancer, which is not treatable except with surgery. I tell you that so you know that I was not a specimen of good health at time of treatment. That being said, the treatment is very doable. I did not get nauseous from the chemo, did not lose hair, and was able to take care of myself quite well. I am a divorced mom and at the time my daughter was away at college. I cleaned my own home, cooked my own meals, shopped for my own groceries, Shoveled my own driveway, took care of pets,etc. the entire treatment and post treatment. Twice I had very low blood counts and needed neuprogen shots which made me feel like I had the flu. During that time, I used grocery delivery service. I did have the usual radiation burns that were quite painful, but I wore lose sweat pants when I went out, and no underwear. Yes, it was painful for a few weeks, but knowing it was going to heal made it easier to endure.I took nothing but Tylenol. I didn't go the pain killer route because I did not want to add to my troubles and because I needed to take care of myself. Also, I did not find lotion s helpful at all. For me, it was better to keep the area clean. As far as the burns, I doubt anyone could tell where the burns were by looking at me in a bathing suit now. The burns have faded.

These are the things that you will want to get prior to treatment: several pairs of loose fitting pants made of soft fabric, or skirts. I got some soft pullon pants from LL Bean( you won't want zippers) Sitz bath and some solution to put in it, hand held shower( for me essential), baby wipes with no alcohol, thermometer, baby shampoo, wide tooth comb. Also, get your teeth cleaned prior to treatment. If you don't you may get mouth sores. I did not get mouth sores because I had teeth cleaned prior to treatment. You will rinse your mouth with mild saline solution several times a day.

Try not to worry. The treatment is usually not as bad as you are probably imagining. Prayer helped me get through this andmI will surely remember you in my prayers as you go through this. Hugs!

Amazing Responses Thanks Everyone
Thanks for the wonderful responses with items. So, I went shopping today and added to my stash of supplies. I got Biotene rinse, toothpaste, spray and gel, Ensure, small plastic trash cans, Aquaphor, bed pad with vinyl backing, a shower sprayer nozzle thingy, a pitcher for pouring water over myself during BM or Pee, pill containers, Imodium and I'm sure other things I've forgotten about.
Everyone is so inspiring. "This is do-able", "you can do this", "it's tough but you will make it". Those comments mean the world to me. God bless you all!!

chrisfromny

geneviasue said:

Thanks!!
Chris,
So funny to see your response here. I had clicked on your posts (which are awesome by the way) and was going to reply to one of them when I saw your reply. I appreciate the Biotene. I'll get some today..I've seen it in stores.

I've been very positive and feel I have dealt with this pretty well considering, well, that it's cancer. I'm so thankful that the cure rate is so high. I want to go to heaven, just not anytime soon..I still have work to do here.

I'll be praying for you and your mom. She is blessed to have you so close to her and I know that this has to be taking on toll on you too. My oldest son is an EMT and he understands this kind of stuff well. I've shielded my sons from all this information because I want them to go about life as normal. My husband and I will handle everything up until it gets to a point they need to know. Of course, that's what I'm telling myself. They have probably already done their research and likely more as much as I do. sigh...

I think I'll post my story too because I think it's important for people to understand that the "doctor" process is a nightmare. I've had 4 "intelligent fingers" examine me and each one said the same thing. I've had a CT Scan then a PET scan..why even do the CT if you're going to do a PET. I've had a problem with my doctors knowing what the other one is doing. My chemo was suppose to start on Oct 22nd but I hadn't even met with the radiologist yet so it was delayed a week. I did meet with him on the 22nd (late afternoon) and did all the set up stuff. I have the "X's" to prove it..haha. I was also told I would get 3 small blue tattoo'd dots in my pelvis area so that the radiation is perfectly aligned each time.

Chris, I'm sending nothing but great thoughts and prayers toward you and your mom. Thanks for posting great information and know that you are blessing..to your mom and to us!!

GiGi

Thanks, GiGi!
GiGi,

I'm so glad to hear that someone has benefited from what I've posted. I also realize that I've benefited in so many ways from this site and I plan to stay involved long after our ordeal is over with! I'm so happy that you were able to find it, too.

In terms of doctors, we started the process feeling well informed (we didn't know any better). It was certainly a crazy time with so many doctors appointments...repeating ourselves so many times...and so on. What I've come to realize is that you (and also your husband) really need to the be in the driver's seat of your treatment. Sure, they have the degree and we most certainly can't decide on where to aim the radiation or the dosage, etc. ...but push your doctors to give you answers and elaborate on things when you have questions. If you're told something that you think may be contrary to what you've been told somewhere else...bring it up. We've certainly run into circumstances where we we were told something, interpreted it slightly differently, and then needed clarification. That's TOTALLY ok. That's what your team is there for. During the first few weeks of treatment, I'd equate my mom and I to being "along for the ride". We did what we were told, and didn't press for anything further. That was absolutely our biggest mistake throughout this entire process. Peace of mind and knowing that you're doing what you're supposed to be doing...as opposed to questioning your own actions...would have been so nice during treatment. Having those answers from the start would have alleviated so much of our (mostly unnecessary) stress.

For example, when you're prescribed a medication, don't just settle for "this will help you with _____". Ask questions. What are the possible side effects? What happens if I think I have a reaction? Is it ok to take this along with my other medication? (We have resorted to bringing all of my mom's medications with us in a plastic bag to each and every doctor visit. Her doctors assume that we know all the names of each one, but we don't. They change so often. I simply dump out the bag and let them look through each time.)

Also, and probably most importantly, ask every doctor you have what you should do if you have questions or issues outside of normal office hours. Our doctors are flat out pathetic when it comes to 'emergency' or after-hours care. Hopefully yours are better. But make sure you ask that question if they don't tell you explicitly what you are to do. Ask questions like What should I do if I run a fever? What should I do if the pain is unbearable in the middle of the night? Things like that. Have your husband (or whoever brings you to appointments) bring a pen and paper to write everything down. We thought we'd remember...but there are too many details to accurately remember them all (at least for us).

Bottom line...USE your medical team. Don't be afraid to ask questions. Call and ask them when you forgot something at your appointment. Nothing is out of bounds, and they should be willing to give you the answers you are looking for at any time!

Feel free to send me a private email through the CSN Email link on the right if there's anything I can do to help.

You will beat this!
Chris

Marynb

law522 said:

Newly diagnosed and VERY scared too--
Hi Genevia,
I am so sorry you have to be here. but you did find the best place for information on the internet. I found this board a few days after I was diagnosed and the posts/comments from members that have been there is invaluable to me as i prepare for my Journey. The advice and information is the best I have found anywhere. (who better to get it from than those that have been through it or are going through it)

I have my list of "must have" items ready to shop for to help during the healing process which looks like is the worse AFTER the treatment has ended. I also have a list of things I will need to protect my house if i get the messies like some have mentioned and my list of foods just in case i get hungry but honestly, since diagnosed I have lost weight as I am a MESS and have no appetite. Like a lot of people here, one day I was perfectly healthy going in for routine surgery and the next day my world is shattered. (On a positive note, I remember one of the first posts to me on here and it reassured me that if you are going to get cancer, this is the one that is highly curable)

I am going to try and work 5 hours a day in the am during the treatment and then take off the 2 to 4 weeks after depending on how I feel.

I had "hemmy" surgery on Oct 3rd and was diagnosed with squamous cell carcinoma on Oct 9th.

I have also found from reading the posts that everyone reacts different to the treatment.

I healed very quickly from the Hemmy surgery, so I am praying that it will be the same with this treatment.

My main concern is how they want to treat me.
my cancer was 2cm and well defined they classified me as T1 N0 M0
so far they have only given me a CT scan and NOT a PET scan.
the surgeon is suggesting just RAD on the area they removed the hemmy
with chemo and NO Rad on my nodes

I go to see the Chemo Dr today.
This is the last person I need to meet in my team

Do they have a treatment date for you to start?
I was trying to figure out when i am going to feel the worse and looks like my timing sucks and it will be over the Holdidays
I am not sure if postponing treatment for a few weeks would make a difference or not

I will be back tonight and let ya know what Dr has to say

XO Linda

Linda, re. Timing
Hi linda,

I understand how you feel about possibly delaying treatment due to the holidays. Just want to add my 2 cents......don't delay. I was told of the diagnosis at 5 pm, the night before Thanksgiving. My daughter was on her way home from college and I was picking her up at the train station 2 hours later. I decided that I did not have enough information and so decided not to tell anyone until I knew more. Because of the holiday, everything was closed until the following Monday. So, I kept it to myself, got through the holiday, did all my christmas shopping, put my girl back on the train Sunday night and started calling doctors Monday. They got me into the hospital the next day and we got started onWednesday with all the scans, etc. By the following Monday, I was in treatment. My daughter was in college exams, so I did not tell her until she came home for Christmas break on December 20th.
For me, the very worse part was not getting started. Once I got started, I felt so much better because I was on my way to getting healed! I had my chemo pack on at Christmas and it wasn't bad.
You have been living with this diagnosis for much longer than I did before I started treatment. You must be getting anxious. Just my opinion, but waiting until after the holidays is only going to add to that. It is such a great feeling to finish. I think severe side effects are unusual. You will do just fine with all the support that you have at home. Putting cancer in your past will feel so amazing! I hope you don't mind me adding my two cents.

geneviasue

geneviasue said:

Amazing Responses Thanks Everyone
Thanks for the wonderful responses with items. So, I went shopping today and added to my stash of supplies. I got Biotene rinse, toothpaste, spray and gel, Ensure, small plastic trash cans, Aquaphor, bed pad with vinyl backing, a shower sprayer nozzle thingy, a pitcher for pouring water over myself during BM or Pee, pill containers, Imodium and I'm sure other things I've forgotten about.
Everyone is so inspiring. "This is do-able", "you can do this", "it's tough but you will make it". Those comments mean the world to me. God bless you all!!

Hair Loss
I know everyone is different but wondering about hair loss. Did each of you or the person you care for lose their hair on the treatment I've listed above (MIT in office with 96 hours 5FU, at week 1 and week 5 or 6).

Marynb

geneviasue said:

Hair Loss
I know everyone is different but wondering about hair loss. Did each of you or the person you care for lose their hair on the treatment I've listed above (MIT in office with 96 hours 5FU, at week 1 and week 5 or 6).

Hair loss
Hi genevia,

I had the same treatment and had no hair loss at all. My hair actually got thicker and wavier. I have no idea why some lose hair and some don't. I used baby shampoo and Infusium 23. I did not blow dry my hair and used a wide tooth comb. I was very gentle with my hair andate a lot of protein. I washed my hair with water that was as cold as I could stand. I was lucky. Honestly, except for the low white blood counts, i didn't have any side effects from the chemo.