advice

swood9008
swood9008 Member Posts: 116 Member

Hi all,

My mon is in her last week do radiation, she is done on monday. She is extremely uncomfortable and burned. Her dr offered her a break but she is done on Monday. Her question is would it be worth it. Her pain is almost unbearable but after today she only has 3 more treatments 

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Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008

    I'm sorry your mom is so miserable.  I was too at that point in my treatment.  But, as per Dr. Eng from M.D. Anderson, breaks should be of no longer than 1 day if at all possible for the best results.  I would really encourage your mom to gut it out and get in those last 3 treatments without a break if at all possible.  My heart goes out to her, as I know how painful it is.  I send prayers for her and hope that she will find the strength to do this.  Please keep us posted.

    Martha

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    mp327 said:

    swood9008

    I'm sorry your mom is so miserable.  I was too at that point in my treatment.  But, as per Dr. Eng from M.D. Anderson, breaks should be of no longer than 1 day if at all possible for the best results.  I would really encourage your mom to gut it out and get in those last 3 treatments without a break if at all possible.  My heart goes out to her, as I know how painful it is.  I send prayers for her and hope that she will find the strength to do this.  Please keep us posted.

    Martha

    Breaks

    I was warned I would want one.  I was also warned that I would not want to complete, but I would have to.  I drove myself one hour each way to every radiation tx.  My husband took me to the last three.  I'm shedding tears as I write this.   It was a tough journey.  She has to do it.  

    Then it will be over.

     

    Sorry.  Ugh!

  • jcruz
    jcruz Member Posts: 379 Member
    meds?

    I'm sorry your mom is suffering so.  I took increasing doses of oxycontin through my treatment and for several months after.  I wasn't completely doped up and also not completely pain-free but it certainly made things bearable.  Is your mom on medication for the pain?

  • swood9008
    swood9008 Member Posts: 116 Member
    jcruz said:

    meds?

    I'm sorry your mom is suffering so.  I took increasing doses of oxycontin through my treatment and for several months after.  I wasn't completely doped up and also not completely pain-free but it certainly made things bearable.  Is your mom on medication for the pain?

    She called me last night in

    She called me last night in misery. Her biggest problem is urinating. She was at the point she wanted to call her dr for a cath. She says she is a little better today (She is better during the day than night time) she doesn't want to use the creams anymore because its not worth it to her to have scrub them off for radiation. She tries to keep up with pain meds, I'm just sticking by her and tell her 3 more days! After today 2! She thought she was done tomorrow (friday) but the president's day holiday wasn't calculated in so monday is her last day. Thank you for all the support 

  • z
    z Member Posts: 1,414 Member
    swood9008 said:

    She called me last night in

    She called me last night in misery. Her biggest problem is urinating. She was at the point she wanted to call her dr for a cath. She says she is a little better today (She is better during the day than night time) she doesn't want to use the creams anymore because its not worth it to her to have scrub them off for radiation. She tries to keep up with pain meds, I'm just sticking by her and tell her 3 more days! After today 2! She thought she was done tomorrow (friday) but the president's day holiday wasn't calculated in so monday is her last day. Thank you for all the support 

    Swood

    I remember the pain while urinating.  I used a sports bottle and sqeezed the water on me as I urinated.  The pain pills helped as well.  I would use the cream daily then take a bath before I went to radiation.  Maybe she should just sit in the bathtub, thats where I found most of my relief.  Tell your mom I am sending postivie thoughts her way and she can do it.

    Lori

  • eihtak
    eihtak Member Posts: 1,473 Member
    swood9008....

    Hi, I remember at one point during treatment that I was hospitalized with complications, (I have an ostomy and my colon had prolapsed several inches out of my body into the bag!!! Scary)......anyhow, I remember my radiation doctor coming into the room when my surgeon and onc were trying to come up with a plan and she strongly stated the NEED to not take a break in radiation even though it was the radiation that had caused the prolapse. I kept going, and the problem corrected itself several weeks after radiation was done. I was one **** of a mess, pain, fried pealing skin, and a colon hanging outside of my body!!

    I too used a squirt bottle of lukewarm water that I sprayed on me as I peed, and in between spent time in the shower with a hand held shower head for relief as well as pain meds (oxycontin) that I continued for a couple months after treatment.

    Believe me, I feel for your mom and you as her caregiver, and will pray to get through this to the end! She is so close, I just know she'll make it!

    katheryn

  • pializ
    pializ Member Posts: 508 Member
    eihtak said:

    swood9008....

    Hi, I remember at one point during treatment that I was hospitalized with complications, (I have an ostomy and my colon had prolapsed several inches out of my body into the bag!!! Scary)......anyhow, I remember my radiation doctor coming into the room when my surgeon and onc were trying to come up with a plan and she strongly stated the NEED to not take a break in radiation even though it was the radiation that had caused the prolapse. I kept going, and the problem corrected itself several weeks after radiation was done. I was one **** of a mess, pain, fried pealing skin, and a colon hanging outside of my body!!

    I too used a squirt bottle of lukewarm water that I sprayed on me as I peed, and in between spent time in the shower with a hand held shower head for relief as well as pain meds (oxycontin) that I continued for a couple months after treatment.

    Believe me, I feel for your mom and you as her caregiver, and will pray to get through this to the end! She is so close, I just know she'll make it!

    katheryn

    Swood

    my portable bidet was my best friend for urination when the burns took hold. Whatever it takes to get through.. 

  • jcruz
    jcruz Member Posts: 379 Member
    swood9008 said:

    She called me last night in

    She called me last night in misery. Her biggest problem is urinating. She was at the point she wanted to call her dr for a cath. She says she is a little better today (She is better during the day than night time) she doesn't want to use the creams anymore because its not worth it to her to have scrub them off for radiation. She tries to keep up with pain meds, I'm just sticking by her and tell her 3 more days! After today 2! She thought she was done tomorrow (friday) but the president's day holiday wasn't calculated in so monday is her last day. Thank you for all the support 

    similar pain

    I also had extreme pain when urinating.  My urinary tract was burned so I was taking pyridium which helped some.  I also had lidocaine gel which I dabbed on my urethra before I peed.  The water bottle thing didn't work for me but fortunately this did.

  • 0626june
    0626june Member Posts: 73
    hang in there

    the thing is, the pain is just horrible generally and the open wounds are awful and the skin so tender...however,  during the actual radiation itself it doesn't hurt any worse, so maybe she can finish. My Drs at Cancer Care Alliance in Seattle were very big on not taking a break. I finished 9 months ago and actually rode a bicycle for the  first time yesterday...so there is hope of healing!

     

  • swood9008
    swood9008 Member Posts: 116 Member
    0626june said:

    hang in there

    the thing is, the pain is just horrible generally and the open wounds are awful and the skin so tender...however,  during the actual radiation itself it doesn't hurt any worse, so maybe she can finish. My Drs at Cancer Care Alliance in Seattle were very big on not taking a break. I finished 9 months ago and actually rode a bicycle for the  first time yesterday...so there is hope of healing!

     

    Thanks everyone! She is

    Thanks everyone! She is colpetely miserable but so strong at the same time, she looks forward to her weekend off and then one last zap on Monday!!!

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008 said:

    Thanks everyone! She is

    Thanks everyone! She is colpetely miserable but so strong at the same time, she looks forward to her weekend off and then one last zap on Monday!!!

    swood9008

    She can do this!  Please tell her we are all cheering her on!

    Martha

  • swood9008
    swood9008 Member Posts: 116 Member
    mp327 said:

    swood9008

    She can do this!  Please tell her we are all cheering her on!

    Martha

    Today is a bad day, this

    Today is a bad day, this morning my mom called and said she had a fever, I told her I woukd be right over to and to call the on call oncology l. When I got to her house she was stuck in bed couldn't get up she had an accident and very frustarted. We are at the hospital now ad the dr asked why she waited so long with urinary pain to come in. Are you kidding me!!! She's been telling raditauon all week how bad the pain was and they gave her soaps and squirting bottles. Very frustrated with the st annes er right now for saying that to her. From what the nurses at radiation told her unfortunately this was "normal" hoping they will get her on antibiotics and pain control and she will start to feel better soon 

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008 said:

    Today is a bad day, this

    Today is a bad day, this morning my mom called and said she had a fever, I told her I woukd be right over to and to call the on call oncology l. When I got to her house she was stuck in bed couldn't get up she had an accident and very frustarted. We are at the hospital now ad the dr asked why she waited so long with urinary pain to come in. Are you kidding me!!! She's been telling raditauon all week how bad the pain was and they gave her soaps and squirting bottles. Very frustrated with the st annes er right now for saying that to her. From what the nurses at radiation told her unfortunately this was "normal" hoping they will get her on antibiotics and pain control and she will start to feel better soon 

    swood9008

    I'm so sorry your mom is having such a bad time of it.  I seriously doubt that the people in ER have any clues about how bad this pain is, but they should be educated on that, IMO.  Unfortunately, it is one of the common side effects of radiation and it happened to me, so I can relate.  Urinating was so excruciatingly painful.  My heart goes out to her and I hope the meds will help and that she feels better real soon.  I hope she will hang in there.

    Martha

  • swood9008
    swood9008 Member Posts: 116 Member
    We finally got a room at the

    We finally got a room at the hospital, they tried sending her home. She refused she can barely walk and get to the bathroom. My mom is an RN and knows when she needs to ask for help. She had quit a bit of blood in her urine they are trying to get a test sample. She is on antibiotics as a precation for uti, her white cells are bottomed out at 1,000 

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008 said:

    We finally got a room at the

    We finally got a room at the hospital, they tried sending her home. She refused she can barely walk and get to the bathroom. My mom is an RN and knows when she needs to ask for help. She had quit a bit of blood in her urine they are trying to get a test sample. She is on antibiotics as a precation for uti, her white cells are bottomed out at 1,000 

    swood9008

    I'm glad your mom insisted on being admitted where she can be closely monitored and get the pain relief that she needs.  God bless her.  I will keep her in my prayers.

    Martha

  • judyv3
    judyv3 Member Posts: 143 Member
    swood9008 said:

    We finally got a room at the

    We finally got a room at the hospital, they tried sending her home. She refused she can barely walk and get to the bathroom. My mom is an RN and knows when she needs to ask for help. She had quit a bit of blood in her urine they are trying to get a test sample. She is on antibiotics as a precation for uti, her white cells are bottomed out at 1,000 

    Healing Thoughts

    I am sending healing thoughts to you and your mom.  Sadly we have all been there and that is no consolation.  And I'm going to tell you something that goes against everything everyone says.  My last treatment was scheduled for a Monday and I felt so terrible over the weekend that I told my family that I refused to have that final treatment, I was DONE.  They made me go in to see the radiation oncologist's physician assistant and she told me (after checking with doc) I didn't need the last zap.  I KNOW, I KNOW - not the recommended option.  I completed 32 treatments.  

    I hope your mother begins to feel better very soon.  I know she's feeling so bad now that even the slightest improvement will be a great step forward.

    Judy

  • sephie
    sephie Member Posts: 650 Member
    so sorry

    glad your mom is in hospital....i am not a doc but we have to help each other....i was stage 2 no nodes , no metastisis......i had 28 radiation treatments with IMRT at MD Anderson....this is fewer than a lot of folks but it does depend on the stage and ,I think,  the size of the tumor.....How many has she had and what was her stage of disease????   maybe , just maybe , she has had enough of them to do the job....just be careful if u make this decision and again, i am not a doctor..... just a thought...... sephie

  • swood9008
    swood9008 Member Posts: 116 Member
    sephie said:

    so sorry

    glad your mom is in hospital....i am not a doc but we have to help each other....i was stage 2 no nodes , no metastisis......i had 28 radiation treatments with IMRT at MD Anderson....this is fewer than a lot of folks but it does depend on the stage and ,I think,  the size of the tumor.....How many has she had and what was her stage of disease????   maybe , just maybe , she has had enough of them to do the job....just be careful if u make this decision and again, i am not a doctor..... just a thought...... sephie

    she is (hopefully was)  stage

    she is (hopefully was)  stage 2 no nodes no Mets, her dr came in today and caceled her last treatement tomorrow. He said it will not make a difference. She is getting blood as I type. Infectious disease control came in the dr was very nice he changed her antibiotic and gave her diloted. She has a cat scan tomorrow to make sure she doesn't have narrowing of the bladder. Thanks all for the support and I am so sorry you all had to go through this awful treatement but at the same time thankfully it works!

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008 said:

    she is (hopefully was)  stage

    she is (hopefully was)  stage 2 no nodes no Mets, her dr came in today and caceled her last treatement tomorrow. He said it will not make a difference. She is getting blood as I type. Infectious disease control came in the dr was very nice he changed her antibiotic and gave her diloted. She has a cat scan tomorrow to make sure she doesn't have narrowing of the bladder. Thanks all for the support and I am so sorry you all had to go through this awful treatement but at the same time thankfully it works!

    swood9008

    I send prayers for your mom and hope that she will recover from all of this quickly and feel better soon.  Please keep us posted.

    Martha

  • jcruz
    jcruz Member Posts: 379 Member
    swood9008 said:

    Today is a bad day, this

    Today is a bad day, this morning my mom called and said she had a fever, I told her I woukd be right over to and to call the on call oncology l. When I got to her house she was stuck in bed couldn't get up she had an accident and very frustarted. We are at the hospital now ad the dr asked why she waited so long with urinary pain to come in. Are you kidding me!!! She's been telling raditauon all week how bad the pain was and they gave her soaps and squirting bottles. Very frustrated with the st annes er right now for saying that to her. From what the nurses at radiation told her unfortunately this was "normal" hoping they will get her on antibiotics and pain control and she will start to feel better soon 

    awful

    This is just awful for your mom and I'm so glad you're there with her.  More power to her for insisting on being admitted.  I hope she gets relief soon.