My fight progess

mp327

KathyMart said:

New to the group. Just started week 2
Hi everyone....Just started week two ...of radiation treatment. Week One I did the 96 hours of the 5 FU with a push of the mitomycin C along with my radiation treatment. I will have the chemo again in my 5th week and have 4 and a half more weeks of radiation treament. The hardest thing right now is the mouth sores and the burning feeling in my mouth. I am to the point I am hardly unable to talk. I do the swish and I was prescribed the miles solution. Not helping. Haven't been able to eat anything for 3 days nows. I am drinking ensures. Any other suggestions? I do see the medical oncologists today. I am terrified to go through that next round in the 5th week. I have Addison's Disease which is an auto immune disease so I wonder if my sympomts are just intensified due to my already compromised immuned system. Thanks for letting me share.

Hi KathyMart--
So sorry you have a reason to be here. The mouth sores can be miserable. I had tenderness in my mouth and thrush, but luckily no actual sores. Have you tried rinsing with a solution of water and baking soda or salt? Some have good luck with that, so you might try it. Soft, room temperature foods might be the most tolerable right now, along with the Ensure or any other nutrition drinks you can swallow. Just try to keep up the nutrition, as it's very important, along with plenty of fluids, as you do not want to get dehydrated. I know this is rough, but you will get through it. Let us help you with any questions or concerns. We are here for you! I wish you the best!

KathyMart

mp327 said:

Hi KathyMart--
So sorry you have a reason to be here. The mouth sores can be miserable. I had tenderness in my mouth and thrush, but luckily no actual sores. Have you tried rinsing with a solution of water and baking soda or salt? Some have good luck with that, so you might try it. Soft, room temperature foods might be the most tolerable right now, along with the Ensure or any other nutrition drinks you can swallow. Just try to keep up the nutrition, as it's very important, along with plenty of fluids, as you do not want to get dehydrated. I know this is rough, but you will get through it. Let us help you with any questions or concerns. We are here for you! I wish you the best!

Hi Mp... Yes My husband made
Hi Mp... Yes My husband made up the solution and I was using it while I was on the chemo before the sores even came. The docs said they had never seen anything like it. Headed out today for radiation, then to see the medical oncologist.Didn't know it would land me in the treatment center for 2 hours because yes I was dehydrated. On the positive side, doc said the mouth sores and the "burn mouth syndrome" will not get worse it can only get better. So while I sat getting some fluids in, my sweet husband went to the grocery store and stocked up on some ensures!! I am wondering will there be any other symptoms of the 5fu that will appear later ie losing my hair, the issue with the hands and feet I have read about? How about the radiation? This all happened so fast to our family. I am 46 with 3 wonderful girls and husband in 2 weeks our whole life changed. Any info would be so appreciated.

Pattie13

torrance said:

some humor to keep in mind!
Pattie,

Congratulations on beginning your journey and being one step closer to done! Each day is one day done and over with. Stay in the moment and keep focused on the journey. Remember your journey will be different than each of ours. Don't get anxious if you do not react the same as one of us might have and always remember you can come here for reassurance.

Mouth sores...my chemo nurses had me drink, sip on supercold ice water when they administered the chemo. I never had a problem with sores. So don't anticipate the worst. Take it as it comes.

I didn't have any problems with sleepiness with Zofran given for nausea. I did faint the day after I started my first round of chemo.

Pain meds...take them if needed and don't hesitate changing them if they are not effective. However, don't stop taking me, like I did. I went through horrible withdrawls and ended up in the emergency room. For me, my pain came when I needed to use the bathroom and I don't think the pain meds did anything to help with that. When I wasn't in the bathroom I wasn't in bad pain. Remember they can also cause constipation.

Immodium and lomotil...lucky for me I didn't have huge issues with this. Be careful, constipation can be just as miserable. You may at some point want to add a stool softener to your arsenal.

Vaginal stenosis...ask your rad onc about using one. If he recommends use during treatment or after. Mine definitely said after as it would be far too painful during treatment. I believe him as when I first started after treatment it was very painful. I also had issue with tissue fusing so you may want to ask him about using premarin at the opening to prevent fusion and keep things softened and flexible.

And on a funny note....I heard this about the plight of anal cancer survivors..."Everyone wants to save the boobies, no one wants to save an ****!" So I thought maybe I should have a badge made for my rad onc that says,, "I save ****!" And another one...if we are the face of anal cancer, does that make us buttheads! Hope it doesn't offend anyone, isn't meant to, but hopefully provides a chuckle to someone.

UR in our thoughts and prayers!
Joanne

I save ****'s
I really like the idea of your buttons Joanne!|
You have some good advice too. Thank you. Been getting through the 3rd day now. 1st day went great, no problems. 2nd and 3rd... not so much. It's not so much nausea as a dizziness and lightheadedness feeling. I don't like it at all. Not sure if it's the anti-nausea meds (Ondansetron and procholorperazine) or the Chemo tabs. Going to try and switch the number of tabs I take in the morning (Dr. said I could) I have been taking 4 in the am and 3 in the pm but going to try and switch tomorrow to see if it helps. Anyone else get the dizzy and lightheadedness feeling? And what did you do to combat it? Have to run off for another round of radiation in a bit.
Thanks for all your support everyone.
hugs and prayers
Pattie

Pattie13

KathyMart said:

New to the group. Just started week 2
Hi everyone....Just started week two ...of radiation treatment. Week One I did the 96 hours of the 5 FU with a push of the mitomycin C along with my radiation treatment. I will have the chemo again in my 5th week and have 4 and a half more weeks of radiation treament. The hardest thing right now is the mouth sores and the burning feeling in my mouth. I am to the point I am hardly unable to talk. I do the swish and I was prescribed the miles solution. Not helping. Haven't been able to eat anything for 3 days nows. I am drinking ensures. Any other suggestions? I do see the medical oncologists today. I am terrified to go through that next round in the 5th week. I have Addison's Disease which is an auto immune disease so I wonder if my sympomts are just intensified due to my already compromised immuned system. Thanks for letting me share.

New to the group
Hi Kathy,
Sorry you have to be here with us, but glad you found these guys just like I did. I am now 3 days into my treatment but have been give the pills instead of having the port or pump. I am not sure how long my radiation will last. (techs said 5 weeks but the Dr. said 7 at one point) I see the Dr. tomorrow anyway and will ask him then, if only 5 weeks... then yes, I will be happy. Do not feeling out of sorts like this at all. I do hope you find some relief for the mouth sores.
Hugs and prayers
Pattie

mp327

KathyMart said:

Hi Mp... Yes My husband made
Hi Mp... Yes My husband made up the solution and I was using it while I was on the chemo before the sores even came. The docs said they had never seen anything like it. Headed out today for radiation, then to see the medical oncologist.Didn't know it would land me in the treatment center for 2 hours because yes I was dehydrated. On the positive side, doc said the mouth sores and the "burn mouth syndrome" will not get worse it can only get better. So while I sat getting some fluids in, my sweet husband went to the grocery store and stocked up on some ensures!! I am wondering will there be any other symptoms of the 5fu that will appear later ie losing my hair, the issue with the hands and feet I have read about? How about the radiation? This all happened so fast to our family. I am 46 with 3 wonderful girls and husband in 2 weeks our whole life changed. Any info would be so appreciated.

Hi KathyMart--
I hope your docs are right about the burn mouth syndrome getting better. Sorry you had to get fluids, but dehydration is not good, so that was the right thing to do. As for hair loss, I experienced thinning of my hair (which was thin to begin with) and probably lost almost half of it. It started coming out on day 21. There isn't much you can do about it, but I would recommend not shampooing very often and not using the blow dryer. Also, using a shampoo and conditioner that contains biotin may be helpful. I got some good products at GNC, brandname Jason. As for the neuropthy, I did not experience that. I'm not sure it's a common side effect of these chemo drugs, but I could be wrong about that. My main issues were diarrhea, loss of appetite and burns. Make sure if you are using any types of creams, ointments or lotions on your skin that you have removed them completely prior to getting a radiation treatment, then reapply afterwards.

You will have a few weeks that won't be fun, but trust me, once you get through treatment, healing happens pretty quickly. Keep your eye on the finish line as you take it one day at a time. So many of us have done this and you will too! We're here if you need us.

sephie

KathyMart said:

New to the group. Just started week 2
Hi everyone....Just started week two ...of radiation treatment. Week One I did the 96 hours of the 5 FU with a push of the mitomycin C along with my radiation treatment. I will have the chemo again in my 5th week and have 4 and a half more weeks of radiation treament. The hardest thing right now is the mouth sores and the burning feeling in my mouth. I am to the point I am hardly unable to talk. I do the swish and I was prescribed the miles solution. Not helping. Haven't been able to eat anything for 3 days nows. I am drinking ensures. Any other suggestions? I do see the medical oncologists today. I am terrified to go through that next round in the 5th week. I have Addison's Disease which is an auto immune disease so I wonder if my sympomts are just intensified due to my already compromised immuned system. Thanks for letting me share.

caphosol (spelling?)
in the first week of chemo, i had horrible huge mouth sores despite using baking soda,salt water every day. could not get this caphosol until the 6th day. but once started it, it really helped. i rarely hear of this anywhere else but it works. it is expensive but my insurance helped with some of cost. get a script for it. even in Houston regular pharmacies did not carry it but MDAnderson did. sephie

Bella_G

Pattie13 said:

I save ****'s
I really like the idea of your buttons Joanne!|
You have some good advice too. Thank you. Been getting through the 3rd day now. 1st day went great, no problems. 2nd and 3rd... not so much. It's not so much nausea as a dizziness and lightheadedness feeling. I don't like it at all. Not sure if it's the anti-nausea meds (Ondansetron and procholorperazine) or the Chemo tabs. Going to try and switch the number of tabs I take in the morning (Dr. said I could) I have been taking 4 in the am and 3 in the pm but going to try and switch tomorrow to see if it helps. Anyone else get the dizzy and lightheadedness feeling? And what did you do to combat it? Have to run off for another round of radiation in a bit.
Thanks for all your support everyone.
hugs and prayers
Pattie

Dizzy
I got dizzy the first weeks and felt I wasn't drinking enough fluids. Chemo made food and drink taste bad so I had no interest in eating.

I started taking a protein shake each morning and that helped. Kefir, yogurt and cottage cheese added needed protein without hurting my mouth sores.

Take care and try to stay hydrated!

MyHopen413

KathyMart said:

Hi Mp... Yes My husband made
Hi Mp... Yes My husband made up the solution and I was using it while I was on the chemo before the sores even came. The docs said they had never seen anything like it. Headed out today for radiation, then to see the medical oncologist.Didn't know it would land me in the treatment center for 2 hours because yes I was dehydrated. On the positive side, doc said the mouth sores and the "burn mouth syndrome" will not get worse it can only get better. So while I sat getting some fluids in, my sweet husband went to the grocery store and stocked up on some ensures!! I am wondering will there be any other symptoms of the 5fu that will appear later ie losing my hair, the issue with the hands and feet I have read about? How about the radiation? This all happened so fast to our family. I am 46 with 3 wonderful girls and husband in 2 weeks our whole life changed. Any info would be so appreciated.

The mouth sores will get
The mouth sores will get better. I didn't have them the second round of treatment, perhaps you won't either. It is really important that you drink alot, more than you think. 5FU can cause hair loss, but it grows back. If you get diarrhea, you can combat it by taking either Imodium and/or Lomotil (which is a prescription drug). Also, avoid high fiber foods and milk products. My doctor gave me information about a low fiber diet. Radiation can make you fatigued, so get plenty of rest.
The treatment can be difficult, but it only lasts a few weeks and is usually very successful. Just hang in there

KathyMart

MyHopen413 said:

The mouth sores will get
The mouth sores will get better. I didn't have them the second round of treatment, perhaps you won't either. It is really important that you drink alot, more than you think. 5FU can cause hair loss, but it grows back. If you get diarrhea, you can combat it by taking either Imodium and/or Lomotil (which is a prescription drug). Also, avoid high fiber foods and milk products. My doctor gave me information about a low fiber diet. Radiation can make you fatigued, so get plenty of rest.
The treatment can be difficult, but it only lasts a few weeks and is usually very successful. Just hang in there

Thanks for the glimmer of hope!!!!
MyHopen so glad to hear you didn't have them the second round of treatment. How long did they last the first round? I am already at the second week and they are still killing me. My endo, which is my primary prescribed me Triamcin/orabas rub on.. kind of hard but it helps. I still am doing the swish and the miles solution. Even drinking hurts, I now go in for fluids twice a week through my picc line for dehydration. I think my hair is thinning but not seeing any around the house.. ie pillow. I have extremely thick hair. I am so happy at the thought I may not have the sores the 2nd round. GIVES ME SOME HOPE!!!!!!!.The Imodium thus far seems to be doing the trick I am up to 5 a day.Today marks the end of my second week of radiation. Any info you can give me is so helpful!!!!

Pattie13

Bella_G said:

Dizzy
I got dizzy the first weeks and felt I wasn't drinking enough fluids. Chemo made food and drink taste bad so I had no interest in eating.

I started taking a protein shake each morning and that helped. Kefir, yogurt and cottage cheese added needed protein without hurting my mouth sores.

Take care and try to stay hydrated!

Dizzy
Not as good of a weekend as I thought it would be from not taking the meds. I've been in pain almost constantly and may be going on the vicodin tonight. I did get one of those donut type pillows (it's actually a travel neck pillow that does the job perfectly and is somewhat adjustable) so that helps me when I am driving.
I talked with my boss today about working from home from here on out, since I only have periods of about 2-3 hours that I kind of feel ok enough to work. And then at some point in the next few weeks I won't work at all for a while. They are totally ok with it and support me 100%.
Didn't get to dizzy today so that was a good thing. Been really watching for the mouth sores and they haven't happened yet.... knock on wood. I am taking preventive measures by brushing with a soft toothbrush, using biotene toothpaste and brushing after I eat anything and also using a tongue scraper. Also have been rinsing out my mouth with baking soda and water. So far so good. I do notice a change in taste though and of course it's all the sweet and salty (comfort foods.... NO FAIR) that are really not tasting good at all right now. Roasted potatoes and chicken gravy is doable though. :-) Cannot believe I do not like chocolate right now... like... come on.... LOL. Hope I like it again a few months after I am done.
I heard of someone using a Peri... type bottle to rinse with instead of the rough TP but I could not find anything in the medical section in the stores. Instead, I was walking through the grocery store and in the utensils and such were some condiment plastic bottles, kind of like the old picnic ketchup and mustard bottles but these were clear. Perfect for filling with lukewarm water and rinsing. So I bought 2. :-)
Anyway, started my second week of radiation today.
Was able to talk to my Dr. after radiation last Thursday..... man he sure doesn't pull any punches (kind of glad though). He said I am T4. It has not spread to anywhere else in my body or my lymph nodes, but it is big and deep and sitting on my sphincter muscle and that why it's T4. He says "If you survive the first 5 weeks of radiation, I will do another scan and then for 2 more weeks hit it with all I've got".... so 7 weeks of this stuff, if my body can handle it. He expects my side effects to be really bad... so he says, because as he say's he is burning it out of me.
Whew... guess thats enough for now.
Hugs and prayers
Pattie

RoseC

Pattie13 said:

Dizzy
Not as good of a weekend as I thought it would be from not taking the meds. I've been in pain almost constantly and may be going on the vicodin tonight. I did get one of those donut type pillows (it's actually a travel neck pillow that does the job perfectly and is somewhat adjustable) so that helps me when I am driving.
I talked with my boss today about working from home from here on out, since I only have periods of about 2-3 hours that I kind of feel ok enough to work. And then at some point in the next few weeks I won't work at all for a while. They are totally ok with it and support me 100%.
Didn't get to dizzy today so that was a good thing. Been really watching for the mouth sores and they haven't happened yet.... knock on wood. I am taking preventive measures by brushing with a soft toothbrush, using biotene toothpaste and brushing after I eat anything and also using a tongue scraper. Also have been rinsing out my mouth with baking soda and water. So far so good. I do notice a change in taste though and of course it's all the sweet and salty (comfort foods.... NO FAIR) that are really not tasting good at all right now. Roasted potatoes and chicken gravy is doable though. :-) Cannot believe I do not like chocolate right now... like... come on.... LOL. Hope I like it again a few months after I am done.
I heard of someone using a Peri... type bottle to rinse with instead of the rough TP but I could not find anything in the medical section in the stores. Instead, I was walking through the grocery store and in the utensils and such were some condiment plastic bottles, kind of like the old picnic ketchup and mustard bottles but these were clear. Perfect for filling with lukewarm water and rinsing. So I bought 2. :-)
Anyway, started my second week of radiation today.
Was able to talk to my Dr. after radiation last Thursday..... man he sure doesn't pull any punches (kind of glad though). He said I am T4. It has not spread to anywhere else in my body or my lymph nodes, but it is big and deep and sitting on my sphincter muscle and that why it's T4. He says "If you survive the first 5 weeks of radiation, I will do another scan and then for 2 more weeks hit it with all I've got".... so 7 weeks of this stuff, if my body can handle it. He expects my side effects to be really bad... so he says, because as he say's he is burning it out of me.
Whew... guess thats enough for now.
Hugs and prayers
Pattie

Hi Pattie
I would want my doctor to be honest with me too but sometimes doctors can be a bit masochistic (to say the least). Sorry to say, but that's the truth. I don't think your doctor should have said 'IF you survive the first 5 weeks of radiation'...my goodness, dunk him in the lake.

I know there are folks on this board who have had T4 (which, by reading the NCCN guidelines - no node involvement - is stage 3) anal cancer and who have gotten through not only the treatment but have and are surviving - and are well. Please don't let his words get you down. Are you sure you want to stay with him?

My radiation oncologist was like that. The first exam I had after finishing treatment with him was awful. I haven't seen him since.

You WILL get through this.

Love,
Rose

Cheyenne

RoseC said:

Hi Pattie
I would want my doctor to be honest with me too but sometimes doctors can be a bit masochistic (to say the least). Sorry to say, but that's the truth. I don't think your doctor should have said 'IF you survive the first 5 weeks of radiation'...my goodness, dunk him in the lake.

I know there are folks on this board who have had T4 (which, by reading the NCCN guidelines - no node involvement - is stage 3) anal cancer and who have gotten through not only the treatment but have and are surviving - and are well. Please don't let his words get you down. Are you sure you want to stay with him?

My radiation oncologist was like that. The first exam I had after finishing treatment with him was awful. I haven't seen him since.

You WILL get through this.

Love,
Rose

I have to agree. It's your
I have to agree. It's your body and you don't have to stay with a doctor if you are not comfortable and confident in his treatment. I fired my first oncologist after one visit because I didn't feel his direction was correct or in my best interest. I did an online search and found the best in my area for surgery and trusted her to direct me to the medical oncologist and radiation oncologist. I trust my team explicitly and do not regret for one moment leaving the first oncologist.

RoseC

Cheyenne said:

I have to agree. It's your
I have to agree. It's your body and you don't have to stay with a doctor if you are not comfortable and confident in his treatment. I fired my first oncologist after one visit because I didn't feel his direction was correct or in my best interest. I did an online search and found the best in my area for surgery and trusted her to direct me to the medical oncologist and radiation oncologist. I trust my team explicitly and do not regret for one moment leaving the first oncologist.

After re-reading - I can't
After re-reading - I can't BELIEVE he said that to you. I'm pissed, for you. There is NO need or reason for him saying something like that. Please consider seeing someone else Pattie.

Dog Girl

Pattie13 said:

Dizzy
Not as good of a weekend as I thought it would be from not taking the meds. I've been in pain almost constantly and may be going on the vicodin tonight. I did get one of those donut type pillows (it's actually a travel neck pillow that does the job perfectly and is somewhat adjustable) so that helps me when I am driving.
I talked with my boss today about working from home from here on out, since I only have periods of about 2-3 hours that I kind of feel ok enough to work. And then at some point in the next few weeks I won't work at all for a while. They are totally ok with it and support me 100%.
Didn't get to dizzy today so that was a good thing. Been really watching for the mouth sores and they haven't happened yet.... knock on wood. I am taking preventive measures by brushing with a soft toothbrush, using biotene toothpaste and brushing after I eat anything and also using a tongue scraper. Also have been rinsing out my mouth with baking soda and water. So far so good. I do notice a change in taste though and of course it's all the sweet and salty (comfort foods.... NO FAIR) that are really not tasting good at all right now. Roasted potatoes and chicken gravy is doable though. :-) Cannot believe I do not like chocolate right now... like... come on.... LOL. Hope I like it again a few months after I am done.
I heard of someone using a Peri... type bottle to rinse with instead of the rough TP but I could not find anything in the medical section in the stores. Instead, I was walking through the grocery store and in the utensils and such were some condiment plastic bottles, kind of like the old picnic ketchup and mustard bottles but these were clear. Perfect for filling with lukewarm water and rinsing. So I bought 2. :-)
Anyway, started my second week of radiation today.
Was able to talk to my Dr. after radiation last Thursday..... man he sure doesn't pull any punches (kind of glad though). He said I am T4. It has not spread to anywhere else in my body or my lymph nodes, but it is big and deep and sitting on my sphincter muscle and that why it's T4. He says "If you survive the first 5 weeks of radiation, I will do another scan and then for 2 more weeks hit it with all I've got".... so 7 weeks of this stuff, if my body can handle it. He expects my side effects to be really bad... so he says, because as he say's he is burning it out of me.
Whew... guess thats enough for now.
Hugs and prayers
Pattie

What your doctor said
Pattie,

I'm not trying to defend your doctor in the least, but I feel sure when he said if you survive the first 5 wks of rad he will zap you for two more that he wasn't referring to your chance of survival, but rather your reaction to the radiation and whether you could stand anymore of it. Some people have to take a break during their treatment. I was Stage 3 with a 4 cm tumor on my sph. muscle as well, so that was T3. I had 28 sessions of rad, and while my hair did thin a bit (I'm lucky like you; I have fairly thick hair), my worst side effects were the burns. I remember one day when I really, really didn't want to go to rad. tx one day and the only thing that made me go was that I had the end date in my focus and I wasn't going to extend it beyond that date. I had to go one some
fairly strong pain meds around the clock for about 9 days, and I had friends and family stay with me then. I slept most of the time, but they would get me up to take me to the appointments or to drink something. Usually after about 4 hours the meds would be wearing off and that would wake me too. I'm not trying to scare you, but everyone here will tell you that this is rough, but you CAN get through it. Try to line up some people to be on call to help you if you need it. Don't be afraid to ask for help. The only good thing about this cancer is the treatment phase is relatively short. I've shared on other posts that I referred to this as my cancer boot camp. Since you were in the military I assume you went through some type of basic training/boot camp when you entered the military and it probably wasn't easy either, but you obviously got through it and you will this too.

torrance

Pattie13 said:

I save ****'s
I really like the idea of your buttons Joanne!|
You have some good advice too. Thank you. Been getting through the 3rd day now. 1st day went great, no problems. 2nd and 3rd... not so much. It's not so much nausea as a dizziness and lightheadedness feeling. I don't like it at all. Not sure if it's the anti-nausea meds (Ondansetron and procholorperazine) or the Chemo tabs. Going to try and switch the number of tabs I take in the morning (Dr. said I could) I have been taking 4 in the am and 3 in the pm but going to try and switch tomorrow to see if it helps. Anyone else get the dizzy and lightheadedness feeling? And what did you do to combat it? Have to run off for another round of radiation in a bit.
Thanks for all your support everyone.
hugs and prayers
Pattie

Call me a butthead!
Patti,

The second day of treatment, I fainted and ended up in the ER. The dizziness does come and go as do the rest of the side effects. AGAIN, make sure you stay hydrated. I know the chemo alters your taste buds and nothing tastes the same, but it will return to normal and you will soon desire chocolate! Yeah.

Remember to stay in the moment on focus on where you are at right now.

I remember my chemo nurses telling me the reason they had me drink super duper iced water during chemo, actually, before they started it was to cause the vessels in my mouth to constrict, thus limiting the exposure to the drug that would cause mouth sores. It worked for me. Drank super cold water, then chew on ice chips while the drug was administered.

It truly is amazing, and you will soon be able to relate to this, that now looking back it seems like it was such a short period of time in the scheme of things, however, when you are in the middle of it, it seems to drag on. What an incredible journey we have all been through that has brought us here together for one another. Bless you all.

Joanne

mp327

Pattie13 said:

Dizzy
Not as good of a weekend as I thought it would be from not taking the meds. I've been in pain almost constantly and may be going on the vicodin tonight. I did get one of those donut type pillows (it's actually a travel neck pillow that does the job perfectly and is somewhat adjustable) so that helps me when I am driving.
I talked with my boss today about working from home from here on out, since I only have periods of about 2-3 hours that I kind of feel ok enough to work. And then at some point in the next few weeks I won't work at all for a while. They are totally ok with it and support me 100%.
Didn't get to dizzy today so that was a good thing. Been really watching for the mouth sores and they haven't happened yet.... knock on wood. I am taking preventive measures by brushing with a soft toothbrush, using biotene toothpaste and brushing after I eat anything and also using a tongue scraper. Also have been rinsing out my mouth with baking soda and water. So far so good. I do notice a change in taste though and of course it's all the sweet and salty (comfort foods.... NO FAIR) that are really not tasting good at all right now. Roasted potatoes and chicken gravy is doable though. :-) Cannot believe I do not like chocolate right now... like... come on.... LOL. Hope I like it again a few months after I am done.
I heard of someone using a Peri... type bottle to rinse with instead of the rough TP but I could not find anything in the medical section in the stores. Instead, I was walking through the grocery store and in the utensils and such were some condiment plastic bottles, kind of like the old picnic ketchup and mustard bottles but these were clear. Perfect for filling with lukewarm water and rinsing. So I bought 2. :-)
Anyway, started my second week of radiation today.
Was able to talk to my Dr. after radiation last Thursday..... man he sure doesn't pull any punches (kind of glad though). He said I am T4. It has not spread to anywhere else in my body or my lymph nodes, but it is big and deep and sitting on my sphincter muscle and that why it's T4. He says "If you survive the first 5 weeks of radiation, I will do another scan and then for 2 more weeks hit it with all I've got".... so 7 weeks of this stuff, if my body can handle it. He expects my side effects to be really bad... so he says, because as he say's he is burning it out of me.
Whew... guess thats enough for now.
Hugs and prayers
Pattie

Hi Pattie--
Sounds like you are holding your own so far against the side effects. Keep doing what you're doing and hopefully you'll keep them at bay. As for your doctor's comment to you, I think DogGirl may be right. He most likely was not saying the treatment would be fatal to you, rather that many people have to take a break or end their treatment sooner than the planned number of treatments, due to the toxicity and necrosis. However, you have a heads up on how to deal with so many of the side effects and I think you can get through this better than someone who doesn't have a clue (that was my case). One very important thing to remember to reduce the burning issues on your skin is to have any creams, lotions, gels, etc. completely removed prior to getting treatment. Once treatment is over, you can re-apply. Some of those things, such as the Silver Sulfadiazine, contain metal and can intensify the burning, so you don't want them on your skin when you are being treated. A cream such as A&D contains zinc, so again, metal is an issue. While on the subject of metal, if food is tasting strange to you, try eating with plastic utensils. Some people find this helps to reduce that awful taste that food seems to have during chemo. Keep drinking LOTS of water! You will get through this, I know you will.

Pattie13

Dog Girl said:

What your doctor said
Pattie,

I'm not trying to defend your doctor in the least, but I feel sure when he said if you survive the first 5 wks of rad he will zap you for two more that he wasn't referring to your chance of survival, but rather your reaction to the radiation and whether you could stand anymore of it. Some people have to take a break during their treatment. I was Stage 3 with a 4 cm tumor on my sph. muscle as well, so that was T3. I had 28 sessions of rad, and while my hair did thin a bit (I'm lucky like you; I have fairly thick hair), my worst side effects were the burns. I remember one day when I really, really didn't want to go to rad. tx one day and the only thing that made me go was that I had the end date in my focus and I wasn't going to extend it beyond that date. I had to go one some
fairly strong pain meds around the clock for about 9 days, and I had friends and family stay with me then. I slept most of the time, but they would get me up to take me to the appointments or to drink something. Usually after about 4 hours the meds would be wearing off and that would wake me too. I'm not trying to scare you, but everyone here will tell you that this is rough, but you CAN get through it. Try to line up some people to be on call to help you if you need it. Don't be afraid to ask for help. The only good thing about this cancer is the treatment phase is relatively short. I've shared on other posts that I referred to this as my cancer boot camp. Since you were in the military I assume you went through some type of basic training/boot camp when you entered the military and it probably wasn't easy either, but you obviously got through it and you will this too.

What my doctor said
Dog Girl and MP327 it was exactly as you said, he wasn't referring to me dying, just referring to me making it through the treatments. Thank you so much Rose and Cheyanne for coming to my defense though. I do so appreciate it. I guess my doctor is not to great with the English language sometimes. I believe he is Vietnamese or from the Phillipines. He is a good doctor but sometimes I have to ask him to repeat himself so I understand.
I did talk with him today after my radiation and got my full T4N0M0. And the T4 is because it is a really big tumor. I asked him how big and he said the size of his fist..... guess that is pretty big. On a good note though my bleeding has gone down considerably and he said this is a good sign that it is shrinking and the treatment is working. He did say he had an 89 year old woman that had a tumor bigger than mine and in her lymph nodes. He wasn't sure she would make it through the treatment, but she did and is still surviving cancer free 2 years later. He is using the same treatment for me. I do like him and he does have a sense of humor which I like. But yes he can be upfront and honest and I need that too.
Yup Dog Girl... went through boot camp and your right... will get through this too. Thanks
Hugs and Prayers
Pattie

Pattie13

torrance said:

Call me a butthead!
Patti,

The second day of treatment, I fainted and ended up in the ER. The dizziness does come and go as do the rest of the side effects. AGAIN, make sure you stay hydrated. I know the chemo alters your taste buds and nothing tastes the same, but it will return to normal and you will soon desire chocolate! Yeah.

Remember to stay in the moment on focus on where you are at right now.

I remember my chemo nurses telling me the reason they had me drink super duper iced water during chemo, actually, before they started it was to cause the vessels in my mouth to constrict, thus limiting the exposure to the drug that would cause mouth sores. It worked for me. Drank super cold water, then chew on ice chips while the drug was administered.

It truly is amazing, and you will soon be able to relate to this, that now looking back it seems like it was such a short period of time in the scheme of things, however, when you are in the middle of it, it seems to drag on. What an incredible journey we have all been through that has brought us here together for one another. Bless you all.

Joanne

Yes! I will like chocolate again
Thanks Joanne. Nice to know I have something to look forward to later. Interesting about the cold water and ice chips.... that's some good info. Being here in the desert I like my water super cold anyway and always have some chilling in the fridge.
Hugs and Prayers
Pattie

mp327

Pattie13 said:

What my doctor said
Dog Girl and MP327 it was exactly as you said, he wasn't referring to me dying, just referring to me making it through the treatments. Thank you so much Rose and Cheyanne for coming to my defense though. I do so appreciate it. I guess my doctor is not to great with the English language sometimes. I believe he is Vietnamese or from the Phillipines. He is a good doctor but sometimes I have to ask him to repeat himself so I understand.
I did talk with him today after my radiation and got my full T4N0M0. And the T4 is because it is a really big tumor. I asked him how big and he said the size of his fist..... guess that is pretty big. On a good note though my bleeding has gone down considerably and he said this is a good sign that it is shrinking and the treatment is working. He did say he had an 89 year old woman that had a tumor bigger than mine and in her lymph nodes. He wasn't sure she would make it through the treatment, but she did and is still surviving cancer free 2 years later. He is using the same treatment for me. I do like him and he does have a sense of humor which I like. But yes he can be upfront and honest and I need that too.
Yup Dog Girl... went through boot camp and your right... will get through this too. Thanks
Hugs and Prayers
Pattie

Hi Pattie--
I'm so glad that your doctor is encouraged that your tumor is shrinking. That is wonderful news and should be good motivation to keep moving forward, even on the rough days. I'm happy to hear you say that your doctor is a good doc. You are going to beat this!

AZANNIE

Pattie13 said:

Yes! I will like chocolate again
Thanks Joanne. Nice to know I have something to look forward to later. Interesting about the cold water and ice chips.... that's some good info. Being here in the desert I like my water super cold anyway and always have some chilling in the fridge.
Hugs and Prayers
Pattie

Chocolate again
Yes, Pattie, you will like chocolate again. I felt the same way and thought I would never eat it again, but chocolate prevailed - lol!
My tumor was large, too. When I asked the oncologist about the size, he said the size of a lemon. Then when I told the colorectal dr. he said lemons are different sizes...oh well, the radiation zapped it. I asked the radiation tech how can one tell the radiation is working and she said the bleeding stops. Every Monday, they would "x-ray" to make sure they were still on "target", but yet they couldn't tell if the thing was shrinking.
I was stage 2 with no lymph involvement. I think the oncologist was very pleased with the results. I'm 11 months post treatment. Had six month lab work today and waiting for scan appointment.
Best of luck to you!!!

Ann