Stage 3b Anal

Cindy B
Cindy B Member Posts: 9
in Anal Cancer #1
Hi....I'm Cindy...I have been on this site but posting under a different topic...squamous cell...cup....but it is anal for sure.....maybe I've already mentioned it....chemo is doing a number on brain,,...

Starting week three today....did mito c and 5FU in hospital....rad everyday for total of 31 treatments....back to hospital for second round of chemo the 24th. Hair thinning slowly.....this is the week it should fall out more.....Brazilian happened yesterday.......I've been going to the bathroom constantly since the chemo and now from rad. The burning started last week on anal area...I thought to soon?? Back and hips hurt.....so tired I can't get iout of bed...to lightheaded....Going for bloodwork today...scared to know what it is. Anyone with this cancer and survivors with 3b love to hear from you.....
Thanks Cindy B .

Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    #2
    Hi Cindy
    Hi, hard as it is, and I know easier said than done, try to stay calm. Stressing over things we can not control only makes it worse. I was diagnosed with Stage3B about 1.5yrs ago. It sounds like you are receiving standard protocal tratment and that your side effects are similar to most of us also. My tumor size and placement required that I get a colostomy so although issues of its own, I was spared some of the discomfort when having a bowel movement. My hair thinned a lot but never lost it all and it came back quickly after treatment ended. The burning unfortunately (sorry) will probably get worse in the next few weeks but also will heal quickly when done. Sitz baths, squirt bottles, hand held shower heads along with loose clothing all help. There are several recommended ointments to use, check with your doc what he/she suggests, but never apply before radiation, use only after treatment each day and wash off before. I was a bit anemiac prior to diagnoses and the combination of chemo, rad, and poor appetite made this much worse. I needed an iron infusion and several pints of blood throughout. This could account for some of your tiredness and joint pain. Try to eat whatever tastes good at this point, but especially a drink like Boost or Ensure. It is difficult enough to drag yourself to radiation each day so not unusual to just want to stay in bed. A few brief walks around the house and some light stretching will help in recovery and make you feel better in the end. This is a very tough mountain to climb compared to many others, and many of us were hospitalized at some point during treatment, don't let that frighten you it is not uncommon. The outcome is most often positive, at my 1yr PET scan I was NED (no evidence of disease) on the anal cancer and you will get there too!!! You will be in my thoughts and prayers as you move forward in this journey. Please keep in touch to let me know how things are going.
  • horsepad
    horsepad Member Posts: 146 Member
    #3
    Hi Cindy,
    I am a stage IV
    Hi Cindy,

    I am a stage IV cancer survivor. I was diagnosed 1 yr. and 1 mo. ago. I had 5FU/mitomycin and radiation. You already received alot of good advice. I wore dresses all the time and layed with my legs spread alot to allowed air to area. I too did sitz baths with baking soda in water. I drank alot of water and ate protein bars/protein shakes made with soymilk. My hair thinned, I lost weight, was very tired. I too was in the hospital due to low blood counts, potasium etc. My burns were severe, could not pee, so I did have a cathetor for alittle over a month. Bowel movements hurt alot. Once the burns healed completely I was able to have the cathetor removed and bowels improved. Other than liver surgery, have been fine ever since. I swim, walk, ride horses, raising two of my grandchildren and managing a farm. I also enjoy volunteer work at a variety of worthwhile organizations. I thank God every morning and night that I am still here. I feel blessed. Best wishes to you. It is scary going through it but you will feel better.
  • torrance
    torrance Member Posts: 118
    #4
    hang on
    welcome. Please know that you are not alone. All of us are in this together and we will help you ride this out. While we "know" what you are going through and have yet to go through, you may feel isolated. Just drop in here for a sanity check, even if you forget in your chemo fog, we understand! Sounds like all your symptoms are pretty typical for the incredible treatment we go through. I am a year and half past end of treatment and things are seeming to finally getting back to "norm." Count the blessing of each moment you get through this, focus on the here and now.

    Joanne
  • heidistem
    heidistem Member Posts: 2
    #5
    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!
  • Marynb
    Marynb Member Posts: 1,118
    #6
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Marynb
    Marynb Member Posts: 1,118
    #7
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Marynb
    Marynb Member Posts: 1,118
    #8
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Marynb
    Marynb Member Posts: 1,118
    #9
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Marynb
    Marynb Member Posts: 1,118
    #10
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Marynb
    Marynb Member Posts: 1,118
    #11
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Marynb
    Marynb Member Posts: 1,118
    #12
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Marynb
    Marynb Member Posts: 1,118
    #13
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Congratulations on being done
    It sure sounds like you had quite a time of it! Congratulations on being back to work so soon! I am a little more than a year post treatment. It will get better!
  • Dog Girl
    Dog Girl Member Posts: 100
    #14
    Stage 3B anal
    Cindy B.

    Those of us that have traveled this journey feel for you and wish you the best. If you have been on the site much you will know that there are a bunch of possible side effects, but not many get all of them. I didn't see you mention mouth sores, so that is an upside in the greater scheme of things as they sound awful. I didn't have mouth sores either, but I did have horrible burns and my hair (on my head) thinned. I ended up with a Brazillian as well, but most/some of that came back too. (It was thinning already; I guess due to age?). The good news is while it won't feel like it while you are in the midst of the battle (and war it is), this is a relatively short treatment span and healing does generally start fairly quickly after cessation of tx. Drink plenty of fluids and stay hydrated. The diarrhea will drain you so consider some of the sports drinks with electrolytes in them such as PowerAid Zero (no sugar), Gatorade, etc... Ask you doctor about Silvadene (sp?) or other rx cream for the burns. I still use Aquaphor a lot as at 3+ years out, my skin in that area is still fragile. I don't know your age, but if you are close to 50 and need to (or have already had) have a baseline bone density test, you may want to get that checked out again a few months down the road because some have issues from radiation. Let's face it; the chemo and radiation is saving our lives (the best part), but they can do a number on us and our bodies. Don't be shy about asking for pain meds if you need them; I personally don't think there is any reason to suffer needlessly. However be cognizant that they can cause constipation, so you may need to supplement with a stood softener, etc... All the other advice you've already been given is valid as well. Hang in there and come here for support as often as you need. And let your friends and family that are physically there help you as well. This is not a time to try to be Super-Woman.
  • mp327
    mp327 Member Posts: 4,440 Member
    #15
    heidistem said:

    Anal Cancer
    Hi Cindy, I just finished treatment a month ago for anal cancer. I am still healing from the wild ride of the past 3-4 months. I was diagnosed after a colonoscopy in May 2012. It was a shock as I have no family history and am only 46 years old. I began treatment mid June 2012 which was 30 radiation treatments and 2 separate weeks of chemotherapy (96 hours each time). I lost most of my hair by the second chemo treatment. The burns from radiation were not bad at first but the last 2 weeks were bad and the front and back of me were completely burned. After my second chemo round, I had bad diarhhea and nausea and ended up with a 103 degree fever and had to go to the emergency room. I had neutropenia collitis and my white blood counts were bottomed out. I ended up in the hospital for a week and had to have a blood transfusion. It has taken me over a month to completely heal on the outside of the burns and I still have some discomfort on the inside when having a bowel movement. My bowels are not back to normal and last week I ended up in the ER again due to fecal impactment and they had to manually disimpact me. I am almost to the point where I do not need to be on pain meds anymore but I have to say this was the hardest 3 months of my life. Keep a fighter attitude and you will pull through this. I know that I have learned to appreciate everything in life now, like being back at work full time, and just happy to be alive!

    Hi heidistem
    I'm happy to hear that you have finished your treatment, but it sounds like you had a multitude of difficulties during and since. I hope things are improving. It is a brutal treatment and healing can take some time, so don't get discouraged. I am 4 years post-treatment and I have very few issues these days--life seems pretty normal for me. I would say that at about the 2 year mark was when I really felt like I had my life back. I know that may sound like a long ways off, but the time will go fast. Just focus on the things you enjoy and take good care of yourself--it will pay big dividends. I wish you the very best!
  • sandysp
    sandysp Member Posts: 868 Member
    #16
    We are with you
    I read your post and remembered how hard it is to go through the treatment. I honestly thought I was stuck in time and it hurt like hell and I was weak and slept a lot, was in the hospital a few days. But you are not stuck in time any more than I was. This is passing. I believe, based on what we've seen here, that you can heal from this and find a good life for yourself again. I am in the middle of what seems an ever eternal search for cancer in my body. It is the one year mark from the last treatment. I lost most of my hair but it came back thick and curly. The hair I always wanted and never dreamed I would have. My nails are the best nails I have ever had too. So something in me died but somethings in me were reborn. This is what I pray happens to you. They can't seem to find any more cancer yet anywhere. My doctors didn't want to talk in terms of "staging" but I was T2N1MO. So I guess I was lucky to find it in time. I had lots of pain issues prior to being diagnosed due, I believe to the location of the tumor, that are completely managed now so everything is better than it was. I am enjoying life. Try to keep that image in your mind in these days ahead when time seems to stop. It is really tough right now for you. All the best,
    Sandy
  • StruTanToot
    StruTanToot Member Posts: 126 Member
    #17
    sandysp said:

    We are with you
    I read your post and remembered how hard it is to go through the treatment. I honestly thought I was stuck in time and it hurt like hell and I was weak and slept a lot, was in the hospital a few days. But you are not stuck in time any more than I was. This is passing. I believe, based on what we've seen here, that you can heal from this and find a good life for yourself again. I am in the middle of what seems an ever eternal search for cancer in my body. It is the one year mark from the last treatment. I lost most of my hair but it came back thick and curly. The hair I always wanted and never dreamed I would have. My nails are the best nails I have ever had too. So something in me died but somethings in me were reborn. This is what I pray happens to you. They can't seem to find any more cancer yet anywhere. My doctors didn't want to talk in terms of "staging" but I was T2N1MO. So I guess I was lucky to find it in time. I had lots of pain issues prior to being diagnosed due, I believe to the location of the tumor, that are completely managed now so everything is better than it was. I am enjoying life. Try to keep that image in your mind in these days ahead when time seems to stop. It is really tough right now for you. All the best,
    Sandy

    Thank you for your uplifting
    Thank you for your uplifting post. I'm starting my 4th week of treatment today, and I started burning more over the weekend and was feeling a little down and discouraged. Your post helped me a lot today, as do all the encouraging posts from people on this site.
  • lizdeli
    lizdeli Member Posts: 569 Member
    #18
    StruTanToot said:

    Thank you for your uplifting
    Thank you for your uplifting post. I'm starting my 4th week of treatment today, and I started burning more over the weekend and was feeling a little down and discouraged. Your post helped me a lot today, as do all the encouraging posts from people on this site.

    Stage llla
    And still here to talk about it!
    Liz

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