Starting out to destroy this anal cancer!!

SisterPretty · February 2013

Marynb said:
Sisterpretty
I love Niagra Falls. I took my daughter there when she was a little girl and we went on the Maid of the Mist. We laughed so hard. It is a wonderful place and I have happy memories from our visit there. Is it snowing hard there?

Niagara Falls
Hi,
How did you weather the storm, much to my husbands disappointment we did not lose our power. Although, we received a ton of blowing snow, almost two feet of snow. I hope you are safe and warm.
Today, is a beautiful day, sunny.
Have a great weekend!

SisterPretty · February 2013

SisterPretty said:
Niagara Falls
Hi,
How did you weather the storm, much to my husbands disappointment we did not lose our power. Although, we received a ton of blowing snow, almost two feet of snow. I hope you are safe and warm.
Today, is a beautiful day, sunny.
Have a great weekend!

Bio Feedback
Hi Everyone,
Feeling good, tire very easily in bed now and it's only 7pm, my kids are taking good care of me as my husband is out of town on business. I did the biofeedback with my husbands chiropractor. I really don't understand what it is all about as I understand it, the chiropactor hooked me up to a machine which gave him in formation regarding the status of my body, it also produced energy waves which helped energize my cells so I can fight this cancer as well as the damage to my cells from radiation and cancer. He is going to email my report to me with recommendations which will make me stronger and healthier. He already told me I have to cut back on my caffine intake, eat fresh veggies and fruit, exercise twenty minutes a day and he gave me a recipe for energizing my cells - flaxseed oil, flax seed and cottage cheese or yogurt.
Hopefully, this will energize me as well!

eihtak · February 2013

SisterPretty said:
Bio Feedback
Hi Everyone,
Feeling good, tire very easily in bed now and it's only 7pm, my kids are taking good care of me as my husband is out of town on business. I did the biofeedback with my husbands chiropractor. I really don't understand what it is all about as I understand it, the chiropactor hooked me up to a machine which gave him in formation regarding the status of my body, it also produced energy waves which helped energize my cells so I can fight this cancer as well as the damage to my cells from radiation and cancer. He is going to email my report to me with recommendations which will make me stronger and healthier. He already told me I have to cut back on my caffine intake, eat fresh veggies and fruit, exercise twenty minutes a day and he gave me a recipe for energizing my cells - flaxseed oil, flax seed and cottage cheese or yogurt.
Hopefully, this will energize me as well!

Bio Feedback...

Glad you are feeling well! I also rememberi being sooo tired and in bed early, your body will kind of dictate when it needs rest so be sure to listen. I have not heard bio-feedback discussed here before but sounds very interesting. I hope it is another positive addition to this treatment and recovery process! Please keep us posted. I have this picture of "7 of 9" on Startrek in her energizing booth. (maybe you know of it, if not just a Startrek way of re-charging instead of sleep) and no I'm not a big fan, just thought of it and smiled!

Its easy to add flax to your diet. It comes in oil,seed, powder, and can use with baking, sprinkle on cereals, etc.

Will have you in my thoughts and prayers!

Phoebesnow · February 2013

eihtak said:
Bio Feedback...
Glad you are feeling well! I also rememberi being sooo tired and in bed early, your body will kind of dictate when it needs rest so be sure to listen. I have not heard bio-feedback discussed here before but sounds very interesting. I hope it is another positive addition to this treatment and recovery process! Please keep us posted. I have this picture of "7 of 9" on Startrek in her energizing booth. (maybe you know of it, if not just a Startrek way of re-charging instead of sleep) and no I'm not a big fan, just thought of it and smiled!

Its easy to add flax to your diet. It comes in oil,seed, powder, and can use with baking, sprinkle on cereals, etc.

Will have you in my thoughts and prayers!

Sister pretty

Did u run the biofeedback by your oncologists?

im asking because normally I drink kangen water. During tx theywould not let me drink this. It alters your cells in some way. They would not allow me to take vitamins or medications unless deemed necessary.

Marynb · February 2013

SisterPretty said:
Niagara Falls
Hi,
How did you weather the storm, much to my husbands disappointment we did not lose our power. Although, we received a ton of blowing snow, almost two feet of snow. I hope you are safe and warm.
Today, is a beautiful day, sunny.
Have a great weekend!

Sister
Hi . I hope you are doing ok. I had power restored on Sunday, thank God. It was so cold. It made me feel like a pioneer woman and was one of the few times it would have been great to have a man around the house again....for body heat, if nothing else! The sun came out on Sunday and reminded me that after every storm, come better days! Hang in there. You are in my thoughts and prayers!

SisterPretty · February 2013

Marynb said:
Sister
Hi . I hope you are doing ok. I had power restored on Sunday, thank God. It was so cold. It made me feel like a pioneer woman and was one of the few times it would have been great to have a man around the house again....for body heat, if nothing else! The sun came out on Sunday and reminded me that after every storm, come better days! Hang in there. You are in my thoughts and prayers!

Hi,
Glad, you made it through
Hi,
Glad, you made it through the storm safely! My husband will be jealous that your power went out, but I am glad it wasn't for long. Slept great last night almost ten hours!!!
I did not tell my oncologist about taking biofeedback. Actually, I havent seen him since I had my chemo treatment. I should call to schedule an apptointment because I don't have another chemo treatment date yet and my chemo doctor did a breast ultrasound before I started treatment but has not told me the results yet,I am assuming no news is good news.
Thanks everyone for your support and feedback.
God Bless.

SisterPretty · February 2013

Phoebesnow said:
Sister pretty
Did u run the biofeedback by your oncologists?

im asking because normally I drink kangen water. During tx theywould not let me drink this. It alters your cells in some way. They would not allow me to take vitamins or medications unless deemed necessary.

Star Trek
LOL. I will have to tell my husband about the Star Trek Poster, he is the one who wanted me to perform the biofeedback, because it is probably exactly what I looked like!!! The chiropactor kept talking about energy and energy flow, we have to see if I have more energy today because I sure did not, yesterday.
I am thinking my oncologist won't have an option regarding biofeedback back because when I first saw my oncologist I had to fill out a questioaire and one of the questions was do you drink green tea well I drink 8 to 10 cups of tea a day, but switch to green tea after my diagnosis because they claim there are a lot of antitoxins in green tea which fight cancer, but I also read online that theses antitoxins would weaken chemo treatments because they would also fight the chemo, so I asked my oncologist if I should keep drinking green tea and he said there is no evidence based medicine for either claim and to do as I wished. Don't know why they asked me about green tea if he wasn't going to advise me about it !

SisterPretty · February 2013

Help need advice

Hi Sister Supports,

I have made it to the half way point - 3 weeks down and 3 more to go.

I am feeling well,not as fatigued and have been walking to Tim Hortons every morning 15 mins there and 15 mins back. Appetite is great - gained one pound.

I am starting to feel the effects of the radiation, having some burning in the anal areas as well as the vagina, also experiencing some itching. I am soaking in sitz bath with Baking Soda. Can you advise me about any creams or treatments used to combat these problems.

Hope everyone had a nice Valentines Day,it was my daughters birthday and my anniversary( I even managed to fool around with my husband, but I imagine it will be a while before that happens again!!)

Thanks again for all your support and advice.

Marynb · February 2013

Sister
Hi! Congratulations on being half way! It sounds like you are doing pretty well. Keep up that walking in the fresh air. I think it is what helped me so much. As far as creams and lotions, the cream that the hospital recommended was Aquaphor. I want to caution you, however. I did not use it except on weekends and when the radiation was complete because any residue of lotion not removed by washing will really make the radiation burns much, much worse. I was told from the beginning that those who use the lotions sometimes exoerience severe burning. Based on what I read here, that seems to be true. Be careful. The problem is, you won't want to scrub the burned area before radiation sessions, which you would pretty much have to do to get all the lotion or cream off.

I used the hand held shower a lot, which helped to soothe and slough off burned skin cells.

Hang in there! You are doing great! Half way to being cured!

SisterPretty · February 2013

Marynb said:
Sister
Hi! Congratulations on being half way! It sounds like you are doing pretty well. Keep up that walking in the fresh air. I think it is what helped me so much. As far as creams and lotions, the cream that the hospital recommended was Aquaphor. I want to caution you, however. I did not use it except on weekends and when the radiation was complete because any residue of lotion not removed by washing will really make the radiation burns much, much worse. I was told from the beginning that those who use the lotions sometimes exoerience severe burning. Based on what I read here, that seems to be true. Be careful. The problem is, you won't want to scrub the burned area before radiation sessions, which you would pretty much have to do to get all the lotion or cream off.

I used the hand held shower a lot, which helped to soothe and slough off burned skin cells.

Hang in there! You are doing great! Half way to being cured!

Thanks

Thanks Mary for your advice, I won't use any lotion on my radiation days.

Went for my walk today it was a beautiful sunny day, I agree with you the fresh air is wonderful.

SisterPretty · February 2013

SisterPretty said:
Thanks
Thanks Mary for your advice, I won't use any lotion on my radiation days.

Went for my walk today it was a beautiful sunny day, I agree with you the fresh air is wonderful.

Question

When I was out on my walk my neighbor stopped to ask me how I was and told me her mother who had bladder cancer was just diagnosised with cancer in her liver. Our neighbor had colon cancer which also went to his liver. My first MRI showed something on my liver but the second MRI tests were inconclusive. I am a bit worried now about my liver. The oncologist doesn't think it is cancer as he says this type of cancer typically does not go to the liver (didnt Farrah Facetts go to her liver)

After my treatments are completed I will have another MRI to check on liver, should I be worried - don't trust doctors too much as walk in doctor told me that since I was having frank blood and not occult blood he didn't think my rectal bleeding was from cancer - he was wrong.

pamela_preib · February 2013

SisterPretty said:
Question
When I was out on my walk my neighbor stopped to ask me how I was and told me her mother who had bladder cancer was just diagnosised with cancer in her liver. Our neighbor had colon cancer which also went to his liver. My first MRI showed something on my liver but the second MRI tests were inconclusive. I am a bit worried now about my liver. The oncologist doesn't think it is cancer as he says this type of cancer typically does not go to the liver (didnt Farrah Facetts go to her liver)

After my treatments are completed I will have another MRI to check on liver, should I be worried - don't trust doctors too much as walk in doctor told me that since I was having frank blood and not occult blood he didn't think my rectal bleeding was from cancer - he was wrong.

I had a spot on my liver as well.

I was tested and diagnosed with hemochromotosis. Totally non cancer related thank God. I finished my treatment three weeks ago. Seems like yesterday. I used the Aquophor constantly, but always took a bath before treatments and didn't have a problem. No scrubbing involved as that definately would not have been comfortable. I don't know if I was or was not burned more than your average patient. Just glad it's over and wish you well with our treatment and hope your pain is kept at a minimum. This too shall pass.

mp327 · February 2013

SisterPretty said:
Question
When I was out on my walk my neighbor stopped to ask me how I was and told me her mother who had bladder cancer was just diagnosised with cancer in her liver. Our neighbor had colon cancer which also went to his liver. My first MRI showed something on my liver but the second MRI tests were inconclusive. I am a bit worried now about my liver. The oncologist doesn't think it is cancer as he says this type of cancer typically does not go to the liver (didnt Farrah Facetts go to her liver)

After my treatments are completed I will have another MRI to check on liver, should I be worried - don't trust doctors too much as walk in doctor told me that since I was having frank blood and not occult blood he didn't think my rectal bleeding was from cancer - he was wrong.

Sister Pretty

I have had a small spot on my liver that has shown up on the numerous scans I've had, which my doctors have kept close watch on. However, it does not appear to be a tumor, as it remains unchanged, even decreasing in size on the my most recent scan about 3 weeks ago. There are cysts that are common on the liver, which is probably what I have, and hopefully what you have--they are benign. However, I have a real problem with your oncologist telling you that this type of cancer, anal, typically does not go to the liver. That is an erroneous statement and I'm not sure what he based that comment on. It is true that the majority of anal cancers are caught at earlier stages and do not metastasize to distant organs, but when they do, typically they will be found in the lungs or liver. I quote here from the National Comprehensive Cancer Network Guidelines, page MS-9: "It has been reported that the most common sites of anal cancer metastasis outside of the pelvis are the liver, lung, and extrapelvic lymph nodes." It goes on to say that anal carcinoma is a rare cancer and "only 10 to 20% of patients with anal carcinoma present with extrapelvic metastatic disease."

Unfortunately, I think some doctors do not have a lot of knowledge about this disease. It frightens me to think that such information as I've quoted above is available to the general public, but yet some doctors do not seem to be knowledgeable about this. I do not have M.D. after my name, I have just done lots of homework, which any doctor worth his salt would do. If I were you, I'd register on the NCCN.org website and print out those quidelines and show them to your doctor just so he understands that, yes, sometimes this cancer does go to the liver, just as Farrah Fawcett's did. As you can tell, I get wriled up when I read that a doctor is not exactly up to speed. Bringing this up with him just might help you and someone else in the future who seeks treatment from him.

When you have the next MRI, I hope it will be at the same facility where the previous ones were done. Comparison between all three scans will be key to note for changes in whatever was seen on your liver. If it's not at the same facility, make sure the previous films are requested for comparison. I hope this turns out to be nothing of concern and totally benign.

eihtak · February 2013

mp327 said:
Sister Pretty
I have had a small spot on my liver that has shown up on the numerous scans I've had, which my doctors have kept close watch on. However, it does not appear to be a tumor, as it remains unchanged, even decreasing in size on the my most recent scan about 3 weeks ago. There are cysts that are common on the liver, which is probably what I have, and hopefully what you have--they are benign. However, I have a real problem with your oncologist telling you that this type of cancer, anal, typically does not go to the liver. That is an erroneous statement and I'm not sure what he based that comment on. It is true that the majority of anal cancers are caught at earlier stages and do not metastasize to distant organs, but when they do, typically they will be found in the lungs or liver. I quote here from the National Comprehensive Cancer Network Guidelines, page MS-9: "It has been reported that the most common sites of anal cancer metastasis outside of the pelvis are the liver, lung, and extrapelvic lymph nodes." It goes on to say that anal carcinoma is a rare cancer and "only 10 to 20% of patients with anal carcinoma present with extrapelvic metastatic disease."

Unfortunately, I think some doctors do not have a lot of knowledge about this disease. It frightens me to think that such information as I've quoted above is available to the general public, but yet some doctors do not seem to be knowledgeable about this. I do not have M.D. after my name, I have just done lots of homework, which any doctor worth his salt would do. If I were you, I'd register on the NCCN.org website and print out those quidelines and show them to your doctor just so he understands that, yes, sometimes this cancer does go to the liver, just as Farrah Fawcett's did. As you can tell, I get wriled up when I read that a doctor is not exactly up to speed. Bringing this up with him just might help you and someone else in the future who seeks treatment from him.

When you have the next MRI, I hope it will be at the same facility where the previous ones were done. Comparison between all three scans will be key to note for changes in whatever was seen on your liver. If it's not at the same facility, make sure the previous films are requested for comparison. I hope this turns out to be nothing of concern and totally benign.

NCCN

Thanks once again for pointing out the NCCN guidelines. I registered there a long time ago after taking your advice and have found it so useful to consult with questions over time. Fortunately my doctors seem to follow also!

mp327 · February 2013

eihtak said:
NCCN
Thanks once again for pointing out the NCCN guidelines. I registered there a long time ago after taking your advice and have found it so useful to consult with questions over time. Fortunately my doctors seem to follow also!

eihtak--

You are very welcome! I believe that is the best source of information we have concerning staging, treatment and follow-up for anal cancer. I'm glad your doctors are in step with the guidelines.

Looniest123456 · February 2013

ANAL CANCER TREATMENT

I Hope and feel I've finally found a forum for my personal experience, and hopefully, as I go through this process, I'll he able to help others.... This Thursday (Feb 21) I will at last have the doctors' meeting to discuss my diagnosed (recurrent) anal cancer. I already know they will be advising chemoradiation therapy, and natural concerns come up. I'm not ashamed to say I have a low pain threshold, and when I had my first bout the this, and they opted for a local resection (surgery) the pain was pretty excruciating. Liquid morphine didn't help except by distracting me. I understand that chemo is not as bad pain-wise as the radiation will be (because of the location of the cancer) but also, the many other side effects mentioned are pretty daunting. I know I'm jumping the gun by asking about this before the full programme of my treatment is discussed, but...I'm an anxious person by nature! I'm hoping to have a LIST of questions for the initial doctor(s) prepared, and the first one will be how far or how big the tumor/cancer has progressed (if at all). Anyway, I'll keep you guys posted. Wonder if you know wny special questions I should have for the doctors for this first meeting (I almost want to ask, what if I I didn't do ANY of the treatments??

SisterPretty · March 2013

Hi Everybody

Hi Everybody,

Thank-you for all the advice regarding the spots on my liver. I can't believe how fast time is flying by!!

I have not been on this site for weeks. I will update. I have been doing well until last week when I received my last chemo 5-Fluorouracil and Mitomycin. It was given Monday and by Wednesday the side effects kicked in big time unbearable pains in my stomach from heartburn, nauseated, thrush and terrible diarrhea. Still experiencing diarrhea and thrush today. I have one week left of radiation, hurray. Pretty red and sunburned in all my private areas, dread having a bowel movement,cried the other day. I also have a million freckles on my stomached is this common the end is near. Not very pleasant treatments but manageable, my heart goes out to all the older people I see undergoing treatment. I have prayer every day throughout this journey and am blessed that so far although unpleasant as Mary as said very doable. I was also blessed finding this site as all the advice and recommendations I received have been a great help. THANKS

mp327 · March 2013

SisterPretty said:
Hi Everybody
Hi Everybody,

Thank-you for all the advice regarding the spots on my liver. I can't believe how fast time is flying by!!

I have not been on this site for weeks. I will update. I have been doing well until last week when I received my last chemo 5-Fluorouracil and Mitomycin. It was given Monday and by Wednesday the side effects kicked in big time unbearable pains in my stomach from heartburn, nauseated, thrush and terrible diarrhea. Still experiencing diarrhea and thrush today. I have one week left of radiation, hurray. Pretty red and sunburned in all my private areas, dread having a bowel movement,cried the other day. I also have a million freckles on my stomached is this common the end is near. Not very pleasant treatments but manageable, my heart goes out to all the older people I see undergoing treatment. I have prayer every day throughout this journey and am blessed that so far although unpleasant as Mary as said very doable. I was also blessed finding this site as all the advice and recommendations I received have been a great help. THANKS

SisterPretty

It's good to hear from you. I'm sorry things are getting a little rough at this point, but that is so typical with this treatment. I got really miserable at the start of week 5. But the finish line is in sight for you, so just hang in there! Once you are done, you will begin healing and soon will be feeling so much better!

Marynb · March 2013

SisterPretty said:
Hi Everybody
Hi Everybody,

Thank-you for all the advice regarding the spots on my liver. I can't believe how fast time is flying by!!

I have not been on this site for weeks. I will update. I have been doing well until last week when I received my last chemo 5-Fluorouracil and Mitomycin. It was given Monday and by Wednesday the side effects kicked in big time unbearable pains in my stomach from heartburn, nauseated, thrush and terrible diarrhea. Still experiencing diarrhea and thrush today. I have one week left of radiation, hurray. Pretty red and sunburned in all my private areas, dread having a bowel movement,cried the other day. I also have a million freckles on my stomached is this common the end is near. Not very pleasant treatments but manageable, my heart goes out to all the older people I see undergoing treatment. I have prayer every day throughout this journey and am blessed that so far although unpleasant as Mary as said very doable. I was also blessed finding this site as all the advice and recommendations I received have been a great help. THANKS

SisterPretty
Hi. I am so glad that you are getting to the end and are hanging in there! You will be in my prayers! I hear you may get a lot of snow tomorrow! Hopefully, you won't lose power! Did they check yourmwhite blood count? When I started to get really bad pains in the stomach, my white blood counts had gotten so low, I needed Neuprogen shots to get them back up. This delayed treatments a bit. Don't forget to mention the pains to the docs.
Hang in there, you are almost done!

RoseC · March 2013

SisterPretty said:
Hi Everybody
Hi Everybody,

Thank-you for all the advice regarding the spots on my liver. I can't believe how fast time is flying by!!

I have not been on this site for weeks. I will update. I have been doing well until last week when I received my last chemo 5-Fluorouracil and Mitomycin. It was given Monday and by Wednesday the side effects kicked in big time unbearable pains in my stomach from heartburn, nauseated, thrush and terrible diarrhea. Still experiencing diarrhea and thrush today. I have one week left of radiation, hurray. Pretty red and sunburned in all my private areas, dread having a bowel movement,cried the other day. I also have a million freckles on my stomached is this common the end is near. Not very pleasant treatments but manageable, my heart goes out to all the older people I see undergoing treatment. I have prayer every day throughout this journey and am blessed that so far although unpleasant as Mary as said very doable. I was also blessed finding this site as all the advice and recommendations I received have been a great help. THANKS

Hi SisterPretty

You're almost there - hope things resolve quickly! Are the freckles only on your stomach or all over? I don't remember having anything like that but it was quite a while ago and I might have forgotten. My heart went out to all the older people too - and to those going to treatment alone. Going alone is certainly something that can be done, but I was so glad to have a family member with me. Best wishes to you. It's almost over.

Starting out to destroy this anal cancer!!

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