What to expect?

Gulamin
Gulamin Member Posts: 134
edited March 2014 in Anal Cancer #1
Need just some advice and overall support. Am going already into week 3 of my treatment. Handled the chemo well with only few side effects other than tiredness and a squeezy stomach. The radiation is ok so far too. Diarrhea is starting on occassion but not to the level were its is too uncomfortable. Still able to eat everything though am very careful about my diet (don't want to feed that cancer). I was taking pain medication as there was some burning (mainly tylenol) but now noticed that the pain is less which is strange though my hope is that its due to shrinkage of the tumor. What to expect this next week?

Wishing all of you a happy new year and may it bring health and happiness to all of you.

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    Gulamin
    I think that the tumor is shrinking, therefore less pain. My tumor was at the anal verge, right by the opening, and I noticed a lessoning of pain after the tx started, as it was very painful to sit or wear underwear. The side effects of the radiation are cumulative, I experienced being very tired and would take a nap when I returned from radiation. You sound like you are doing very well and I hope you continue to do so. I wish you a happy new year also. Lori
  • nellie67
    nellie67 Member Posts: 28 Member
    #3
    z said:

    Gulamin
    I think that the tumor is shrinking, therefore less pain. My tumor was at the anal verge, right by the opening, and I noticed a lessoning of pain after the tx started, as it was very painful to sit or wear underwear. The side effects of the radiation are cumulative, I experienced being very tired and would take a nap when I returned from radiation. You sound like you are doing very well and I hope you continue to do so. I wish you a happy new year also. Lori

    Gulamin
    I also noticed the orginal pain I had started to diminish around the 3rd week, during that time I was doing really well. I had very little nausea from the chemo and really not much reaction to the radiation yet, just felt kinda warm down there. I noticed my pubic hair started disappear too around the 3rd-4th week. I was eating pretty well except for the days after my 5 hour chemo, I felt pretty yuck and food wasnt very appealing. I would sleep alot, I also started getting night sweats about the 3rd-4th week. By the 5th week I was pretty sore in the genitalia area and the anal area. I did experience some bleeding to both anal and vagina area. Going to the bathroom was awful for both 1 and 2 and I spent alot of time in the bath tub soaking.
    When the treatments were finally over I spent the next 3-4weeks in alot of pain and discomfort and I was really weak. Just going to the store or something wore me out and I would have to come home and lie down, I was really raw too I used the ointments the doctors gave me and tried to cope with the pain. Looking back I would have to say it was the worst experience of my so far life, however after the healing started it got better every day and I was back to work in a month. I had the IMRT 25 sessions radiation with a dialator and 5fu 5days a week pump and cisplatin 1x a week for 5 weeks.
  • sissy310
    sissy310 Member Posts: 300
    #4
    Hi Gulamin
    You sound like you are experiencing what I did with treatment. The chemo was not bad for me either, some queasiness, tiredness. The rad treatments started getting worse for me about week 5 I would say. I didn't notice because it does not happen all at once, but builds up. What worked for me was take it one day at a time and deal with that day, then deal with the next and rest and relax on the weekends. If you can rest a lot and drink a lot of water. Nurture yourself and don't feel guilty about it. You will be tired.

    I did the same thing with my tumor, I was so fearful of eating anything to 'help' the tumor more but thinking back, the chemo and rads were beating the crap (pun intended) out of the tumor anyway. I had this pain on the inner part of my thigh and buttock (left side where the tumor was) like a cramp now and then. Well as treatment progressed and even after treatment that pain started to diminish. I no longer have it. I am thinking that it was the tumor leaning on a nerve maybe and as it shrunk, the pain diminished. I always thought in my mind and visualized that the tumor was shrinking. It can't hurt. If that is how you feel, then it is possible it is so! Hang in there, you are almost at the end!! Keep your faith and think positive. Come in here and vent or ask questions. You will always have support. Marilyne
  • mbh97766
    mbh97766 Member Posts: 39
    #5
    I haven't heard from you in
    I haven't heard from you in a while. Hope you had a good holiday in spite of everything. I just started my week 4. I noticed a huge difference during week 3. It was like everything just kicked in. My biggest issue right now is skin sensitivity. I have completely stopped wearing underwear or pants, hang out in my nightgown all day. Whenever I can, I lie on the couch with a blanket over my knees and my legs spread as far apart as can be. It feels good to have NOTHING touching me. I slather on all the creams that I can, I find the most relief from the Aquaphore gel and the Bag Balm (both over the counter). The hardest part for me is on Radiation morning when I can't put anything on until after treatment. My skin throbs, and I have open sores that bleed when I pat myself. My doctor suggested that right before I urinate to dab some of the silver sulfadiazine cream on the open sores to act as a barrier and lessen the burning pain. As soon as I get home, I slather on the creams.
    I start my second round of chemo tomarrow. Hoping that I can skip the mouth sores with that one. Hang in there, we can do this together. I'm here for you if you have any questions,
    Take care, big hugs,
    Darcee
  • Gulamin
    Gulamin Member Posts: 134
    #6
    mbh97766 said:

    I haven't heard from you in
    I haven't heard from you in a while. Hope you had a good holiday in spite of everything. I just started my week 4. I noticed a huge difference during week 3. It was like everything just kicked in. My biggest issue right now is skin sensitivity. I have completely stopped wearing underwear or pants, hang out in my nightgown all day. Whenever I can, I lie on the couch with a blanket over my knees and my legs spread as far apart as can be. It feels good to have NOTHING touching me. I slather on all the creams that I can, I find the most relief from the Aquaphore gel and the Bag Balm (both over the counter). The hardest part for me is on Radiation morning when I can't put anything on until after treatment. My skin throbs, and I have open sores that bleed when I pat myself. My doctor suggested that right before I urinate to dab some of the silver sulfadiazine cream on the open sores to act as a barrier and lessen the burning pain. As soon as I get home, I slather on the creams.
    I start my second round of chemo tomarrow. Hoping that I can skip the mouth sores with that one. Hang in there, we can do this together. I'm here for you if you have any questions,
    Take care, big hugs,
    Darcee

    Good to hear from you
    Good to hear from you though it sounds as if things are getting a little tougher now. I am just getting into week 3... oh boy. My skin is getting pinkish which is probably what you first saw. I have the bag balm too and the aquaphore. Hope you are not getting the mouth sores. I will keep you posted how things go! Big hug!!
  • Gulamin
    Gulamin Member Posts: 134
    #7
    sissy310 said:

    Hi Gulamin
    You sound like you are experiencing what I did with treatment. The chemo was not bad for me either, some queasiness, tiredness. The rad treatments started getting worse for me about week 5 I would say. I didn't notice because it does not happen all at once, but builds up. What worked for me was take it one day at a time and deal with that day, then deal with the next and rest and relax on the weekends. If you can rest a lot and drink a lot of water. Nurture yourself and don't feel guilty about it. You will be tired.

    I did the same thing with my tumor, I was so fearful of eating anything to 'help' the tumor more but thinking back, the chemo and rads were beating the crap (pun intended) out of the tumor anyway. I had this pain on the inner part of my thigh and buttock (left side where the tumor was) like a cramp now and then. Well as treatment progressed and even after treatment that pain started to diminish. I no longer have it. I am thinking that it was the tumor leaning on a nerve maybe and as it shrunk, the pain diminished. I always thought in my mind and visualized that the tumor was shrinking. It can't hurt. If that is how you feel, then it is possible it is so! Hang in there, you are almost at the end!! Keep your faith and think positive. Come in here and vent or ask questions. You will always have support. Marilyne

    Enouraging words
    Good to hear. I hope that I can too hang in there til week 5 before getting pain. I am doing the guided imagery to visualize a strong immune system, good white blood count and the tumor shrinking. Are you NED?
  • Gulamin
    Gulamin Member Posts: 134
    #8
    z said:

    Gulamin
    I think that the tumor is shrinking, therefore less pain. My tumor was at the anal verge, right by the opening, and I noticed a lessoning of pain after the tx started, as it was very painful to sit or wear underwear. The side effects of the radiation are cumulative, I experienced being very tired and would take a nap when I returned from radiation. You sound like you are doing very well and I hope you continue to do so. I wish you a happy new year also. Lori

    Thank you, Lori
    for your words. I am getting more tired too.
  • mbh97766
    mbh97766 Member Posts: 39
    #9
    Gulamin said:

    Good to hear from you
    Good to hear from you though it sounds as if things are getting a little tougher now. I am just getting into week 3... oh boy. My skin is getting pinkish which is probably what you first saw. I have the bag balm too and the aquaphore. Hope you are not getting the mouth sores. I will keep you posted how things go! Big hug!!

    New Discovery
    Just this morning I discovered a new form of release. It's called "Bourdreaux's Rash Protector" (spray), found in the baby supplies area of my drugstore. It's a barrier cream to help prevent diaper rash. I spray it on all over (its easy to apply and fast) right before I urinate. It last long enough to block out the stinging sensation created by urine dripping on open sores. It's a releif and takes out the anxiety I experience right before I have to go. It's a quick fix, easier than hoping in the shower with the handheld. For now, it works, and I thought I would share it with you. (p.S. you say your skin is turning pink, wait till it turns almost black - kind of a shocker at first) Got new rinse for the help and prevention of mouth sores, onc nurse gave it to me. It can only be ordered, but she gave me order info also:
    check it out, its called reBalance available at www.vaxcopharma.com or 913-236-6518, Never hurts to try something new, but maybe you'll be a lucky one and skip the mouth sores. I hope so.
    Hugs back at you,
    Darcee
  • Gulamin
    Gulamin Member Posts: 134
    #10
    mbh97766 said:

    New Discovery
    Just this morning I discovered a new form of release. It's called "Bourdreaux's Rash Protector" (spray), found in the baby supplies area of my drugstore. It's a barrier cream to help prevent diaper rash. I spray it on all over (its easy to apply and fast) right before I urinate. It last long enough to block out the stinging sensation created by urine dripping on open sores. It's a releif and takes out the anxiety I experience right before I have to go. It's a quick fix, easier than hoping in the shower with the handheld. For now, it works, and I thought I would share it with you. (p.S. you say your skin is turning pink, wait till it turns almost black - kind of a shocker at first) Got new rinse for the help and prevention of mouth sores, onc nurse gave it to me. It can only be ordered, but she gave me order info also:
    check it out, its called reBalance available at www.vaxcopharma.com or 913-236-6518, Never hurts to try something new, but maybe you'll be a lucky one and skip the mouth sores. I hope so.
    Hugs back at you,
    Darcee

    Thanks for sharing
    I will get that spray now... black... wow. Hard to believe until you see it. I am starting to get more sensitive in the area now... am starting to use the wet wipes. How are you doing with the diarrhea? Is that part bad too? We have to drink a lot so going to the bathroom much. So thankful to have you! Happy New Year.
  • JDuke
    JDuke Member Posts: 438
    #11
    Gulamin said:

    Thanks for sharing
    I will get that spray now... black... wow. Hard to believe until you see it. I am starting to get more sensitive in the area now... am starting to use the wet wipes. How are you doing with the diarrhea? Is that part bad too? We have to drink a lot so going to the bathroom much. So thankful to have you! Happy New Year.

    The diarrhea can be severe.
    You are correct, you need to drink A LOT. Dehydration is absolutely something you want to avoid. It is also important that the liquids that you consume have some nutritional value. I know this is so very difficult because there will be nothing that will appeal to your taste buds. Force yourself. As your treatment progresses, another piece of advice that I will offer is that if pain medication has been prescribed for you, take it. I avoided it because it I was terrified of constipation issues, as this is usually a severe side effect of those meds for me. Looking back on it I should have taken way more than I did, it certainly may have lessened the diarrhea issues and the sleep that would have resulted would have been a welcome departure from the discomfort.

    I know you have read of others journey down this road and realize that it will get really bad before it gets better. I am not saying this as some attempt to scare you, but so that you will be aware that we have all been there and that YOU WILL get to the other side of this also. Once that has happened you will look back and actually be amazed at the resilience of your body. It is truly amazing that it can be so burdened by such horrific treatment and then heal so rapidly. I hope that your experience will be the best it can, with no surprises.

    Warmly,
    Joanne
  • mp327
    mp327 Member Posts: 4,440 Member
    #12
    JDuke said:

    The diarrhea can be severe.
    You are correct, you need to drink A LOT. Dehydration is absolutely something you want to avoid. It is also important that the liquids that you consume have some nutritional value. I know this is so very difficult because there will be nothing that will appeal to your taste buds. Force yourself. As your treatment progresses, another piece of advice that I will offer is that if pain medication has been prescribed for you, take it. I avoided it because it I was terrified of constipation issues, as this is usually a severe side effect of those meds for me. Looking back on it I should have taken way more than I did, it certainly may have lessened the diarrhea issues and the sleep that would have resulted would have been a welcome departure from the discomfort.

    I know you have read of others journey down this road and realize that it will get really bad before it gets better. I am not saying this as some attempt to scare you, but so that you will be aware that we have all been there and that YOU WILL get to the other side of this also. Once that has happened you will look back and actually be amazed at the resilience of your body. It is truly amazing that it can be so burdened by such horrific treatment and then heal so rapidly. I hope that your experience will be the best it can, with no surprises.

    Warmly,
    Joanne

    I agree with Joanne
    I also feared taking too much pain medication, not only because of constipation but because I was driving myself to rad tx every day and couldn't be groggy. I SO wish I had taken more medication, put up with the grogginess and napped more often, and had someone drive me to treatment every day. I don't think I would have suffered nearly as much. Learn from our mistakes--medicate and hydrate!
  • chelceyrose
    chelceyrose Member Posts: 6
    #13
    Gulamin said:

    Thanks for sharing
    I will get that spray now... black... wow. Hard to believe until you see it. I am starting to get more sensitive in the area now... am starting to use the wet wipes. How are you doing with the diarrhea? Is that part bad too? We have to drink a lot so going to the bathroom much. So thankful to have you! Happy New Year.

    what to expect
    Hi my name is Vicki. Am new to the site. I have read your story and the resulting comments.
    I am not sure where any of you stand as far as your treatment - but I urge you all to
    ask your doctors about the long term effects of the radiation (like up to 20 tears post
    radiation).

    All comments I have experienced. My anal cancer was diagnosed 3 years ago. Had 2-96 hour chemo drips. Also had 30 sessions of mega doses of radiation. Because of an implant in my upper left butt cheek - the radiation had to go thru the front. It has left vaginal
    stenosis (shrinkage) and rectal stenosis. Because of the vaginal shrinkage - sex is a thing of the past and bm's are painful. What they didnt tell me was that the radiation can
    continue to cause damage for many years. My treatments were over in April 2008 and I continue to have problems with my stomach and lower intestines. During treatment my private areas
    stayed raw - which is ok now but yes really dark.

    I will pray for all of you. If I can ever be of any help - please dont hesitate. I wish I would have known of this site back in 2008.

    God bless you all ..... keep the faith.

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