For the Newbies: 95% of Anal cancer patients free from SERIOUS side effects during and after treatm
My point is is that 95% have no side effects or symptoms, so those people are not on this board. They have moved on. It's like anything, going to a restaurant going on a cruise, if it worked well, you are not going to hear from them, unless it is great, overthetop, or it was a very Negative experience so they have to write about it.
We are the 5% trying to find answers and solutions.
I have a collection of small Svorsky Chrystal figurines. Over the years they have fallen and little bits of them, have ended up in my jewelry box, paws, beaks, a little gold bug. Some people wouldn't display these pieces anymore. I am most fond of these broken figurines as they have more character in my eyes and I smile as I pass them. Now I look upon them even more fondly as they remind me of us.
Comments
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Good Point
Thanks for sharing your thoughts. I did not realizie 95% have no side effects or symptoms. I also am not in that 95% but cannot complain due to fact my life was saved as a result of my doctors decisions and care. Baylor Plano in Plano Texas is where my doctors are located. The main side effect I have had is BM issues. Now that I am eating Activia each day it seems to have helped with my BMs.
I am scheduled for my 2 year colonscopy Friday and as usual am a little nervous before my tests. I do not anticipate any new issues because I have been feeling fine. Hopr the best for you.
Mike0 -
Phoebesnow
I like your comments about the crystals. I now refer to myself as a "scratch and dent" model, but I still run like a top!
However, I've been on 3 different support sites since my treatment ended in September '09 and judging from my own experience and that of others who have shared on the forums, I have a hard time believing that 95% of people undergoing treatment for anal cancer will not have any side effects, during or after. Also, the word "symptoms" would lead me to think of things such as bleeding, which many people continue to have during and after treatment. I still occasionally have bleeding with BM's, even 3+ years out.
I do agree that many people get past treatment and choose to put everything behind them and stop talking about cancer, so they do not participate on sites such as this. I must say that the further out I get from treatment, the more I understand that. I believe at some point the day will come when I will do the same.0 -
wow
i am not in the 95% and would have loved to be able to read all these hints when i was being treated from march 31 ( large biopsy with stiches trying to remove the entire tumor) 2009 un til end of tx at MD Anderson in July 2009. the anal part posted the month after, i think. i watched the farrah fawcett broadcast trying to grab hints from her of how she handled the pain , the crazy BM's and etc. but she could not show that to the world. I had side effects immediately from chemo (mouth so full of sores that i could not eat or talk with no relief for a week) then the radiation started burning me up after the first week which the docs said was not the usual thing. then i ended up in hospital after the last tx. But the worst is that i am still suffering with side effects---- pain during , after certain BM's, some bleeding when tissue tears, mucous. too many bm's. i am not a grateful survivor. but i am gradually after 2 years and 4 months post tx getting better. I still can not fast walk for exercise due to the pulling on the anus . also , to let you know, i have never smoked ( mom did). have been 115-120 lbs 5ft. 7 inches my whole life and used to be able to exercise. i have never tested positive for HPV in the 38 years of pap smears. sooooo i was sort of healthy before all of this mess. every one is different. i welcome all info. i need it and thank everyone for helping me all the time. trying hard to be grateful for every small step forward. sephie0 -
Side effects and symptomssephie said:wow
i am not in the 95% and would have loved to be able to read all these hints when i was being treated from march 31 ( large biopsy with stiches trying to remove the entire tumor) 2009 un til end of tx at MD Anderson in July 2009. the anal part posted the month after, i think. i watched the farrah fawcett broadcast trying to grab hints from her of how she handled the pain , the crazy BM's and etc. but she could not show that to the world. I had side effects immediately from chemo (mouth so full of sores that i could not eat or talk with no relief for a week) then the radiation started burning me up after the first week which the docs said was not the usual thing. then i ended up in hospital after the last tx. But the worst is that i am still suffering with side effects---- pain during , after certain BM's, some bleeding when tissue tears, mucous. too many bm's. i am not a grateful survivor. but i am gradually after 2 years and 4 months post tx getting better. I still can not fast walk for exercise due to the pulling on the anus . also , to let you know, i have never smoked ( mom did). have been 115-120 lbs 5ft. 7 inches my whole life and used to be able to exercise. i have never tested positive for HPV in the 38 years of pap smears. sooooo i was sort of healthy before all of this mess. every one is different. i welcome all info. i need it and thank everyone for helping me all the time. trying hard to be grateful for every small step forward. sephie
When I would consult with radiologist, onc, techs with my symptoms, everyone had the same response, never saw this before, don't know how to help you. In the front I was burned from above pubic area to mid leg. Open dripping, weeping skin, entire vaginal area was burned inside and out, anus not so bad, but burned. My bladder was burned and I was incontinent, so that the urine dripped on the open burns, I had a uti and diareaah and constant urination drip 24/7. I was out of my mind with pain, I hadn't sleep more than hour in 21 days. They did not give me painkillers or a sleep aid until thanksgiving night when I went to the er and they gave me a morphine drip, They had never seen anyone have a response like this, I was told over and over again, by many health professionals at this facility. At this facility they radiate 130 patients per day. I could not believe them because I had already read the blogs noting some of these side effects. I don't know if they all band together and just decide they will deny everything. They are now finally giving in and admitting that my side effects are due to treatment. My biggest gripe is my loss of balance, for which they offered me a cane. You know what I told them to do with that cane?
Then after all that my tiny 90 year old mother in law goes for radiation to shrink a colon cancer met tumor that is blocking her airway, and she sails thru, no burn, no side effects a little tired one day.0 -
PhoebesnowPhoebesnow said:Side effects and symptoms
When I would consult with radiologist, onc, techs with my symptoms, everyone had the same response, never saw this before, don't know how to help you. In the front I was burned from above pubic area to mid leg. Open dripping, weeping skin, entire vaginal area was burned inside and out, anus not so bad, but burned. My bladder was burned and I was incontinent, so that the urine dripped on the open burns, I had a uti and diareaah and constant urination drip 24/7. I was out of my mind with pain, I hadn't sleep more than hour in 21 days. They did not give me painkillers or a sleep aid until thanksgiving night when I went to the er and they gave me a morphine drip, They had never seen anyone have a response like this, I was told over and over again, by many health professionals at this facility. At this facility they radiate 130 patients per day. I could not believe them because I had already read the blogs noting some of these side effects. I don't know if they all band together and just decide they will deny everything. They are now finally giving in and admitting that my side effects are due to treatment. My biggest gripe is my loss of balance, for which they offered me a cane. You know what I told them to do with that cane?
Then after all that my tiny 90 year old mother in law goes for radiation to shrink a colon cancer met tumor that is blocking her airway, and she sails thru, no burn, no side effects a little tired one day.
Your experience sounds absolutely horrible. While my burns were pretty bad, I did not have anything as severe as yours. It sounds to me that your radiation team was not very well versed on pelvic radiation side effects. Do you know what your total radiation dosage was? And at what point did your side effects turn severe? Just curious. Most people have a bad last couple of weeks, but some people's skin can begin burning much sooner.
I'm very sorry your treatment was so brutal and that you are now dealing with the after effects.0 -
Mp327mp327 said:Phoebesnow
Your experience sounds absolutely horrible. While my burns were pretty bad, I did not have anything as severe as yours. It sounds to me that your radiation team was not very well versed on pelvic radiation side effects. Do you know what your total radiation dosage was? And at what point did your side effects turn severe? Just curious. Most people have a bad last couple of weeks, but some people's skin can begin burning much sooner.
I'm very sorry your treatment was so brutal and that you are now dealing with the after effects.
Thanks for your empathy. I am pretty sure it was the third week, but can't remember now if the beginning of the third week or the end. looking back now, I realize some serious mistakes were made. When they did the planning, they had me insert a tampon then they made tattoos. after burning my bladder, they did replanning and gave me new tattoos, no tampon. Did this happen to anyone else, tampon and new tattoos? I do not know radiation dosage, I am very thin, but I think you are too as it sounds like many people here are. also I have never tested positive for hpv but still believe that was the cause, but doctors keep insisting no. MY radiation onc is tops in his field, but it is the techs who do the plannning and administer the treatment. I am happy with the tx because I am cured and in the end that is all that really matters. Cured for now anyway, cured forever I hope.
P.s. Just looked at records and by nov15th I was already burned and looking for remedies. What I don't understand is why were they so reluctant to give pain pills, if they knew this kind of suffering was normal with radiation treatment. I still have so many questions about everything. I read several snippets here today that are making me question how my biopsy was obtained, as it was done thru routine colonscopy. I need time to digest this discussion before I can move on to a new topic. Like you MArtha I was diagnosed with Hemis for several years.
Carrol0 -
Hi CarrolPhoebesnow said:Mp327
Thanks for your empathy. I am pretty sure it was the third week, but can't remember now if the beginning of the third week or the end. looking back now, I realize some serious mistakes were made. When they did the planning, they had me insert a tampon then they made tattoos. after burning my bladder, they did replanning and gave me new tattoos, no tampon. Did this happen to anyone else, tampon and new tattoos? I do not know radiation dosage, I am very thin, but I think you are too as it sounds like many people here are. also I have never tested positive for hpv but still believe that was the cause, but doctors keep insisting no. MY radiation onc is tops in his field, but it is the techs who do the plannning and administer the treatment. I am happy with the tx because I am cured and in the end that is all that really matters. Cured for now anyway, cured forever I hope.
P.s. Just looked at records and by nov15th I was already burned and looking for remedies. What I don't understand is why were they so reluctant to give pain pills, if they knew this kind of suffering was normal with radiation treatment. I still have so many questions about everything. I read several snippets here today that are making me question how my biopsy was obtained, as it was done thru routine colonscopy. I need time to digest this discussion before I can move on to a new topic. Like you MArtha I was diagnosed with Hemis for several years.
Carrol
I began feeling the burn in the latter part of week 3, but it didn't really get bad until about week 5. As for the tampon, that's a new one to me. I do know that MD Anderson has treated some patients with a dilator inserted during radiation, so this sounds similar. However, the fact that your first planning session was done with a tampon and the 2nd. one was not is bothersome. My total radiation dosage was 54 gy (30 days @ 1.8 gy per treatment). I believe the maximum dosage that can be given is 59 gy. I have never tested positive for HPV, but have had atypical cells on 2 or 3 pap smears, which when repeated, had cleared. However, in September '09, I underwent surgery (anal fulguration) for removal of 3 small anal condyloma, which my surgeon said were caused by HPV.
While I think everyone has some skin issues during this treatment, it is unbelievable to think that a radiation team would not know of any pain meds or creams/lotions that would be helpful in alleviating the pain. I was prescribed Silver Sulfadiazine.
As for how biopsies are obtained, mine was done during my colonocopy.
I'm very glad that you are doing well and I hope NED is in your life forever!
Martha0 -
Odd
At MSK in New York I was told that I was handling the treatment better than most patients and I had the usual symptoms we describe, burns, mucous, horribly painful bowel movements after the last chemo and radiation treatments for three or four weeks. I still suffer from inflammation of the soft tissue down my legs and in my feet, which is a type of reaction to the treatment and resulting fatigue as the pain is greater when tired. But at MSK my oncologist gave me morphine and told me to take it every twelve hours. So I can't imagine anyone telling a patient to have this treatment with this cancer without that. Recently I had an asthma attack and the doctor gave me Prednisone. It totally took away the soreness and I felt like a child again. No one should have to suffer the pain this illness causes. That is barbaric. It doesn't hurt those "researchers" who came up with that statistic one bit.0 -
soooo sorryPhoebesnow said:Side effects and symptoms
When I would consult with radiologist, onc, techs with my symptoms, everyone had the same response, never saw this before, don't know how to help you. In the front I was burned from above pubic area to mid leg. Open dripping, weeping skin, entire vaginal area was burned inside and out, anus not so bad, but burned. My bladder was burned and I was incontinent, so that the urine dripped on the open burns, I had a uti and diareaah and constant urination drip 24/7. I was out of my mind with pain, I hadn't sleep more than hour in 21 days. They did not give me painkillers or a sleep aid until thanksgiving night when I went to the er and they gave me a morphine drip, They had never seen anyone have a response like this, I was told over and over again, by many health professionals at this facility. At this facility they radiate 130 patients per day. I could not believe them because I had already read the blogs noting some of these side effects. I don't know if they all band together and just decide they will deny everything. They are now finally giving in and admitting that my side effects are due to treatment. My biggest gripe is my loss of balance, for which they offered me a cane. You know what I told them to do with that cane?
Then after all that my tiny 90 year old mother in law goes for radiation to shrink a colon cancer met tumor that is blocking her airway, and she sails thru, no burn, no side effects a little tired one day.
oh, i hurt for you. bless you for all the suffering you went thru. At MD Anderson , they give me pain meds immmediately. however, i did not take them for fear of constipation and the fear of the massive pain of BM. that was stupid but i did not have a clear mind and could not figure out how to handle the constipation and etc. now , i know how to do it but too late. i chose to endure the radiation pain rather than the constipation pain but that is not necessary. i think that if ONE oncologist or ONE oncologyradiologist at MDA would get anal cancer (not wishing that on anyone ) , then we would see a lot more help with this disease. they would figure a lot out and print it . i have one doc here in my small town that had a hard time with prostate cancer and he has read up on anal cancer. he understands, but of course, he was not with me at MD anderson. sephie0 -
Burnssandysp said:Odd
At MSK in New York I was told that I was handling the treatment better than most patients and I had the usual symptoms we describe, burns, mucous, horribly painful bowel movements after the last chemo and radiation treatments for three or four weeks. I still suffer from inflammation of the soft tissue down my legs and in my feet, which is a type of reaction to the treatment and resulting fatigue as the pain is greater when tired. But at MSK my oncologist gave me morphine and told me to take it every twelve hours. So I can't imagine anyone telling a patient to have this treatment with this cancer without that. Recently I had an asthma attack and the doctor gave me Prednisone. It totally took away the soreness and I felt like a child again. No one should have to suffer the pain this illness causes. That is barbaric. It doesn't hurt those "researchers" who came up with that statistic one bit.
After my trip to the er they began to address the burns and the pain. I am allergic to sulphur but was so desperate I tried the silverdyne cream anyway. At first it was ok, but really did not do much except build up in my system and create an allergic reaction. I am also allergic to avocado and they prescribed something else that had avocado oil (I did not read ingredients) and had a reaction to that. In the end I settled with the aquaphor. The best relief was standing in the shower (handheld) and letting the water flow over the burns lightly. Also the saline solution that I would clean the burns with felt like heaven.
I am really concerned now about future patients that my radiation team will be working with. I was so grateful to them, but maybe that is like when people have Stockholm syndrome. After there experience with me I pray that they do not say to the next patient I have never seen this before.
I also have the nerve damage in my legs. This really has improved over the past few months. when I am tired, it will flare up. Sunday night it was so bad I felt nausea.
happy to hear biopsy during colonscopy is ok.
All of my life I had feared chemo but nothing had prepared me for the radiation.0 -
TitlePhoebesnow said:Burns
After my trip to the er they began to address the burns and the pain. I am allergic to sulphur but was so desperate I tried the silverdyne cream anyway. At first it was ok, but really did not do much except build up in my system and create an allergic reaction. I am also allergic to avocado and they prescribed something else that had avocado oil (I did not read ingredients) and had a reaction to that. In the end I settled with the aquaphor. The best relief was standing in the shower (handheld) and letting the water flow over the burns lightly. Also the saline solution that I would clean the burns with felt like heaven.
I am really concerned now about future patients that my radiation team will be working with. I was so grateful to them, but maybe that is like when people have Stockholm syndrome. After there experience with me I pray that they do not say to the next patient I have never seen this before.
I also have the nerve damage in my legs. This really has improved over the past few months. when I am tired, it will flare up. Sunday night it was so bad I felt nausea.
happy to hear biopsy during colonscopy is ok.
All of my life I had feared chemo but nothing had prepared me for the radiation.
I have changed the title. I have done some research since my post, I think this one is more accurate.0 -
I have always said--Phoebesnow said:Burns
After my trip to the er they began to address the burns and the pain. I am allergic to sulphur but was so desperate I tried the silverdyne cream anyway. At first it was ok, but really did not do much except build up in my system and create an allergic reaction. I am also allergic to avocado and they prescribed something else that had avocado oil (I did not read ingredients) and had a reaction to that. In the end I settled with the aquaphor. The best relief was standing in the shower (handheld) and letting the water flow over the burns lightly. Also the saline solution that I would clean the burns with felt like heaven.
I am really concerned now about future patients that my radiation team will be working with. I was so grateful to them, but maybe that is like when people have Stockholm syndrome. After there experience with me I pray that they do not say to the next patient I have never seen this before.
I also have the nerve damage in my legs. This really has improved over the past few months. when I am tired, it will flare up. Sunday night it was so bad I felt nausea.
happy to hear biopsy during colonscopy is ok.
All of my life I had feared chemo but nothing had prepared me for the radiation.
that between chemo and radiation, radiation is the evil twin. I could do chemo again in a heartbeat.0 -
Mp327mp327 said:I have always said--
that between chemo and radiation, radiation is the evil twin. I could do chemo again in a heartbeat.
Exactly!0 -
PaiN killersPhoebesnow said:Mp327
Exactly!
I guess I am going to get this story out little by little.
I am home two weeks post treatment and pain from the burns is uncontrollable. I guess they did not believe me, but I showed them. We called and made an appointment with the radioligist. My husband drove me, I wore a short skirt, buck naked underneath. I walked into his office pulled up my skirt, thought he was going to cry. He sent me home with dialuad and a home nurse started coming that day to dress the wounds. I m crying a river as I write this. I stared treatment on 11/1/10 and it feels like yesterday.0 -
PhoebesnowPhoebesnow said:PaiN killers
I guess I am going to get this story out little by little.
I am home two weeks post treatment and pain from the burns is uncontrollable. I guess they did not believe me, but I showed them. We called and made an appointment with the radioligist. My husband drove me, I wore a short skirt, buck naked underneath. I walked into his office pulled up my skirt, thought he was going to cry. He sent me home with dialuad and a home nurse started coming that day to dress the wounds. I m crying a river as I write this. I stared treatment on 11/1/10 and it feels like yesterday.
I hope you have relief soon and am sorry you're so miserable! I empathize with you. Two weeks into treatment, I started itching and the radiation nurse said it was too soon for side effects. She was the same one who told me I wouldn't turn red... Anyway, the burns started getting worse about the 5th week. The radiation dr listened to my heart and lungs once a week - wrong end. Never looked at the radiated site until rad. tech called his attention to it, but he said to continue treatment. So a few days later I ended up in the hospital. Wound care nurse prescribed xenaderm ointment and that helped. I almost didn't finish the last 5 treatments...0 -
AzanneAZANNIE said:mp327
I agree!
I am fine now. Sorry for all you went thru. I am glad u finished the tx.0 -
Arrghhhh!Phoebesnow said:Azanne
I am fine now. Sorry for all you went thru. I am glad u finished the tx.
I was checked weekly by my Radiologist for burns. I am also alergic to Sulfah medication and they told me emphatically not to "try it anyway." They found Radiadres Gel Sheets and a product call Allegiance Wound Cleaner which were soothing products for my burns along with Aquaphor which everyone here agrees is a life saver. Both my Oncologist and my Radiologist checked my skin burns regularly which means they both checked them weekly. The Radiologist had the medicines for the burns and even gave me large quantities of soft gauze to apply the Wound Cleaner which was particularly helpful when the itching started. God bless you. It's okay to complain. You have to be a strong advocate for yourself. Thanks for posting. Fondly, Sandy0 -
Supportsandysp said:Arrghhhh!
I was checked weekly by my Radiologist for burns. I am also alergic to Sulfah medication and they told me emphatically not to "try it anyway." They found Radiadres Gel Sheets and a product call Allegiance Wound Cleaner which were soothing products for my burns along with Aquaphor which everyone here agrees is a life saver. Both my Oncologist and my Radiologist checked my skin burns regularly which means they both checked them weekly. The Radiologist had the medicines for the burns and even gave me large quantities of soft gauze to apply the Wound Cleaner which was particularly helpful when the itching started. God bless you. It's okay to complain. You have to be a strong advocate for yourself. Thanks for posting. Fondly, Sandy
Thank you so much for your support Sandy and all of you. Apparently I still need support. I never discussed with anyone what I went thru until I came here. My husband was here with me every day and listened to all my complaints. He never got short with me. I really think he is an angel sent from God. I have been thru a lot in my life and I have never been a big talker about myself (but a big talker overall). It feels good to let go of this pain, I feel as if I have taken a shower inside. I feel all fresh and new. Thank you all for your support and empathy, your kindness means the world to me.
Carrol0 -
CarrolPhoebesnow said:Support
Thank you so much for your support Sandy and all of you. Apparently I still need support. I never discussed with anyone what I went thru until I came here. My husband was here with me every day and listened to all my complaints. He never got short with me. I really think he is an angel sent from God. I have been thru a lot in my life and I have never been a big talker about myself (but a big talker overall). It feels good to let go of this pain, I feel as if I have taken a shower inside. I feel all fresh and new. Thank you all for your support and empathy, your kindness means the world to me.
Carrol
I'm glad you have found a soft place to land on this support forum. I think too many times, which I am guilty of myself, we tend to hold things in and not express our feelings, whatever they may be. There is a truly remarkable group of people here who understand each other without question. I'm glad you are feeling better!0
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