brachy/Deanna

135

Comments

  • Evelyn G
    Evelyn G Member Posts: 21
    losing hair
    Ro10, you asked about hair loss.

    I had three rounds (out of the recommended six) of chemo before I became so toxic I had to stop treatment. I started losing my hair after the second round. My last chemo was Feb. 9 and my eyebrows started falling out last week. Before that, the only visible hair falling out was on my head. That hair began growing in last weekend. Go figure.

    I don't know if this answers your question, but it may help you gauge your hair loss.

    Wishing a happy, healthy, and blessed Easter to all who celebrate it. Evelyn
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    Ro10 said:

    Glad to hear from you Teresa
    I've been wondering how you have been doing. I am glad you are finished with your external radiation treatments. Sorry to hear about your nausea everyday. That is not fun. Sorry about the diarrhea, too. The second week of treatment is what most people have said they experienced. Did you follow a low fiber diet when the diarrhea started? That will be hard for me as I eat a lot of fiber right now with fresh fruits and vegetables. But if it helps with the diarrhea I'll do my best to follow a low fiber diet. What about fatigue? Did you have much fatigue with the radiation treatments. Have you been able to care for your daughter like you did before. I hope you have been able to.

    Did you get arrangements made for your daughter when you are in the hospital. Does the hospital you are going to have any type of "Repite" room? This is where people who need care can stay while their caregivers are in the hospital, or just need a break from caregiving.
    My first treatment went well. One down, 27 more to go. I did not know if there would be a break between the external and internal radiation. But I see it is almost a 2 week break for you. Will you have a rest period before you start your last chemo treatments? I have not asked those questions yet. I don't know if it depends on what blood counts are when you can start chemo again. Did your hair start to grow back while you were off chemo. I wondered if mine would start to come back, and then fall out more quickly the second time. I'll be anxious to hear how you internal radiation goes. Thanks for keeping me informed. Take care of yourself. HUGS to you.

    Radiation
    Ro, I pretty much have been eating whatever I want. Seems I get into trouble with diarrhea when I eat to much at one time. My last chemo was Feb.17th, my hair has grown out a little but not much. I imagine when I have my 4th chemo, should be sometime in May, I'll lose it again. So far I haven't lost my eyebrows or eyelashes so I'am happy about that.
    My energy level does seem a little bit low , but not too bad to deal with, just take more naps. I haven't had any trouble at all taking care of Julie. She's been a real trooper through all this mess.
    When I go into the hospital for the cesium implant my husband, son and daughter-in-law will be dealing with her care.
    Hope radiation goes by fast for you and you don't have any bad side effects. I think the only reason I have a break between radiations is because they only do the implants on Tuesday's and April 21st was their next available opening.
    Take Care... Teresa
  • Evelyn G
    Evelyn G Member Posts: 21
    radiation
    Hi All,

    Looks like at least three of us underwent radiation this week. I hope the therapy went well for all.

    Bracytherapy wasn't as bad as I thought it would. Lasted 35 minutes total (six minutes for actual radiation) and wasn't all that uncomfortable. When it was finished, the nurse came in with a geiger counter and ran it by my bottom. Is that disconcerting or what?! I had a burning sensation below my naval for some hours afterward. Next treatment is in two weeks.

    Praying that all is well with you.

    Happy Easter!
  • jankenb
    jankenb Member Posts: 28
    Evelyn G said:

    radiation
    Hi All,

    Looks like at least three of us underwent radiation this week. I hope the therapy went well for all.

    Bracytherapy wasn't as bad as I thought it would. Lasted 35 minutes total (six minutes for actual radiation) and wasn't all that uncomfortable. When it was finished, the nurse came in with a geiger counter and ran it by my bottom. Is that disconcerting or what?! I had a burning sensation below my naval for some hours afterward. Next treatment is in two weeks.

    Praying that all is well with you.

    Happy Easter!

    radiation also this week
    I feel like I am just a bit behind everyone here.
    I guess I am anxious to get started with internal radiation..just the feeling I am doing SOMETHING.
    They have told me to take ativan and two vicoden before my first brachy....
    is this necessary?
    Did anyone else do this?
    janet
  • shortmarge
    shortmarge Member Posts: 291
    jankenb said:

    radiation also this week
    I feel like I am just a bit behind everyone here.
    I guess I am anxious to get started with internal radiation..just the feeling I am doing SOMETHING.
    They have told me to take ativan and two vicoden before my first brachy....
    is this necessary?
    Did anyone else do this?
    janet

    Vicoden
    No, I did not take anything during my treatments. It doesn't hurt it's just a bit humilating.

    MIND, BODY AND SOUL!

    Hugs.
  • cookie1948
    cookie1948 Member Posts: 77

    Vicoden
    No, I did not take anything during my treatments. It doesn't hurt it's just a bit humilating.

    MIND, BODY AND SOUL!

    Hugs.

    brachy
    Could someone explain if brachy is the internal radiation? I have noticed that many have said it's humiliating. It's got to be if i can picture it. Are u in an awkward postion and i am not familiar with radiation but do they put something up inside you and what the heck postion do u have to be in. It sounds very uncomfortable in many ways. I admire all of you that have gone and are undergoing any of these type of treatments. I do know you do "what ya gotta do" to be NED. :)
    My best to all of you. I don't think i would ever stop reading your amazing journeys and what brave women you are.
    God Bless,
    Cookie :)
  • Evelyn G
    Evelyn G Member Posts: 21
    Bracytherapy radiation
    First you undress from the waste down and are given two hospital gowns--one to close in the back, one to close in the front.

    Then you pass by where there are three computers and operators sitting by a large window. All the techs, doc, etc. can see you and hear you during the procedure. Then you go into a room with the table and padded (actually comfortable) leg holders. Of course, they put you in a position like having a pap and keep you covered with a sheet as in a pap. A rod is inserted by a tech. The doc comes in and inserts a yellow covered wire which gives the radiation. Total of three people in the room--the tech, doc, nurse. Then everybody goes out of the room. The entire procedure lasted 35 minutes but the actual radiation lasted six minutes. I could feel the pulsating a little but nothing uncomfortable. Then the tech came in with a geiger counter to make sure all the radiation was stopped. The rod is removed, you sit up for a minute or two and are off on your way.

    Nothing scary and no need for medicine, although I do take 5 mg. of Lexapro daily. My belly still is uncomfortable from the hysterectomy on Nov. 19 so maybe I felt some side effects because of that. A slight burning just under my navel that lasted one day. I also felt a bit fatigued. But that was it. My husband drove me but I could have driven myself.

    Again, my leiomyosarcoma was stage 1C so I chose to do the HDR bracytherapy over external radiation. I also had three rounds of chemo. My doc told me that if I had external radiation I wouldn't be able to have future radiation nor chemo if the cancer came back. Also less side effects with HDRB.

    Good luck and don't be afraid.
  • deanna14
    deanna14 Member Posts: 732
    Evelyn G said:

    Bracytherapy radiation
    First you undress from the waste down and are given two hospital gowns--one to close in the back, one to close in the front.

    Then you pass by where there are three computers and operators sitting by a large window. All the techs, doc, etc. can see you and hear you during the procedure. Then you go into a room with the table and padded (actually comfortable) leg holders. Of course, they put you in a position like having a pap and keep you covered with a sheet as in a pap. A rod is inserted by a tech. The doc comes in and inserts a yellow covered wire which gives the radiation. Total of three people in the room--the tech, doc, nurse. Then everybody goes out of the room. The entire procedure lasted 35 minutes but the actual radiation lasted six minutes. I could feel the pulsating a little but nothing uncomfortable. Then the tech came in with a geiger counter to make sure all the radiation was stopped. The rod is removed, you sit up for a minute or two and are off on your way.

    Nothing scary and no need for medicine, although I do take 5 mg. of Lexapro daily. My belly still is uncomfortable from the hysterectomy on Nov. 19 so maybe I felt some side effects because of that. A slight burning just under my navel that lasted one day. I also felt a bit fatigued. But that was it. My husband drove me but I could have driven myself.

    Again, my leiomyosarcoma was stage 1C so I chose to do the HDR bracytherapy over external radiation. I also had three rounds of chemo. My doc told me that if I had external radiation I wouldn't be able to have future radiation nor chemo if the cancer came back. Also less side effects with HDRB.

    Good luck and don't be afraid.

    Comfortable leg holders? Ativan? Vicodin?
    Wow... sounds a lot more humane than what I experienced with my internal radiation. It was not at all painful, but definately a little humiliating. I hope that your everyone has a more pleasant experience like Evelyn. Actually, I hope that all of you that still have internal radiation left to do.... demand an experience like Evelyn. I certainly would if I knew then what I know now. I had a simulation prior to the actual treatment. The nurse inserted a catheter into my bladder, then the doctor came in and inserted a cylinder into my vagina, then the tech placed another catheter into my rectum. Then they took xrays and cat scans to plan the proper target for the HDR. That took about 30 minutes, then I went back 2 days later for my first treatments. The first and second treatments were 8 minutes each and the last was 6 minutes and were 1 week apart. There were virtually no side effects except a sunburned like feeling and some burning with urination.

    Don't be afraid or worried, but if someone would have offered me Ativan I would have taken it. This portion of my treatment was probably one of the most emotional for me, so far.

    Good luck to all of you and God Bless.
  • deanna14
    deanna14 Member Posts: 732

    brachy
    Could someone explain if brachy is the internal radiation? I have noticed that many have said it's humiliating. It's got to be if i can picture it. Are u in an awkward postion and i am not familiar with radiation but do they put something up inside you and what the heck postion do u have to be in. It sounds very uncomfortable in many ways. I admire all of you that have gone and are undergoing any of these type of treatments. I do know you do "what ya gotta do" to be NED. :)
    My best to all of you. I don't think i would ever stop reading your amazing journeys and what brave women you are.
    God Bless,
    Cookie :)

    brachy
    Linda, brachy is the internal radiation. I had to undress from the waist down, laying on my back in a "frog leg" position. And yes... we do what we gotta do!
  • shortmarge
    shortmarge Member Posts: 291
    deanna14 said:

    Comfortable leg holders? Ativan? Vicodin?
    Wow... sounds a lot more humane than what I experienced with my internal radiation. It was not at all painful, but definately a little humiliating. I hope that your everyone has a more pleasant experience like Evelyn. Actually, I hope that all of you that still have internal radiation left to do.... demand an experience like Evelyn. I certainly would if I knew then what I know now. I had a simulation prior to the actual treatment. The nurse inserted a catheter into my bladder, then the doctor came in and inserted a cylinder into my vagina, then the tech placed another catheter into my rectum. Then they took xrays and cat scans to plan the proper target for the HDR. That took about 30 minutes, then I went back 2 days later for my first treatments. The first and second treatments were 8 minutes each and the last was 6 minutes and were 1 week apart. There were virtually no side effects except a sunburned like feeling and some burning with urination.

    Don't be afraid or worried, but if someone would have offered me Ativan I would have taken it. This portion of my treatment was probably one of the most emotional for me, so far.

    Good luck to all of you and God Bless.

    I Agree
    Deanna, I agree this part of the treatment was the most emotional for me too. I didn't have any catheters, God Bless you. Mine was more like Evelyn's but I didn't have any comfortable leg holders.

    HUGS and you are all in my prayers.

    MIND, BODY AND SOUL!
  • Evelyn G
    Evelyn G Member Posts: 21
    deanna14 said:

    Comfortable leg holders? Ativan? Vicodin?
    Wow... sounds a lot more humane than what I experienced with my internal radiation. It was not at all painful, but definately a little humiliating. I hope that your everyone has a more pleasant experience like Evelyn. Actually, I hope that all of you that still have internal radiation left to do.... demand an experience like Evelyn. I certainly would if I knew then what I know now. I had a simulation prior to the actual treatment. The nurse inserted a catheter into my bladder, then the doctor came in and inserted a cylinder into my vagina, then the tech placed another catheter into my rectum. Then they took xrays and cat scans to plan the proper target for the HDR. That took about 30 minutes, then I went back 2 days later for my first treatments. The first and second treatments were 8 minutes each and the last was 6 minutes and were 1 week apart. There were virtually no side effects except a sunburned like feeling and some burning with urination.

    Don't be afraid or worried, but if someone would have offered me Ativan I would have taken it. This portion of my treatment was probably one of the most emotional for me, so far.

    Good luck to all of you and God Bless.

    Bracytherapy radiation
    Deanna, what you went through sounds awful although maybe more thorough. I wonder why the big difference in procedures. Guess we can't assume that even though the procedures sound the same, they aren't. How long ago did you have it done? Maybe improvements have been made in the delivery of the radiation. My doc said they had a new machine. This was the Ireland Cancer Center at University Hospitals in Cleveland.

    Cancer is an awful disease but we are fortunate that so many strides have been made in its treatment.

    Best wishes to all.
  • deanna14
    deanna14 Member Posts: 732
    Evelyn G said:

    Bracytherapy radiation
    Deanna, what you went through sounds awful although maybe more thorough. I wonder why the big difference in procedures. Guess we can't assume that even though the procedures sound the same, they aren't. How long ago did you have it done? Maybe improvements have been made in the delivery of the radiation. My doc said they had a new machine. This was the Ireland Cancer Center at University Hospitals in Cleveland.

    Cancer is an awful disease but we are fortunate that so many strides have been made in its treatment.

    Best wishes to all.

    brachy
    Evelyn, my internal radiation was in December of last year. It really was an ordeal that shook my confidence in the Radiation Center that I go to in Springfield at Hulston Cancer Center. There was simply NO respect for me as a person at all. I am still contemplating what I will do to make an impact, but I will have to do something to let them know how I felt. I get very emotional about this and feel like I have to at least try to do something. I feel very strongly that they need to change the procedure for vaginal radiation. I hate to think of other women feeling the way that I did that day. There is no way to take the intrusiveness out of that procedure, but there are a lot of ways to make patients as comfortable as possible. They did not even try, starting with making my husband leave the room. They could have very easily let him stay with me until they left the room and started using the xray equipment. At the very least, they could have had a nurse there with me instead of just me and one male stranger who was sticking tubes in my orifices! My husband was LIVID... I still don't know how I got him out of there that day without a scene! You cannot even mention it around him, he gets irrate. He still wants to get a lawyer and sue them! I just want to do something to protect other women from having the same experience.
    Anyway, I am happy to hear that you had a better experience. Really, it wasn't the procedure that was the problem, I expected it to be intrusive. It was the unprofessional manner which supposed "professionals" handled it.
    WOW... off my soapbox now...
    If I ever have to again (heaven forbid), I will go elsewhere and would encourage others to also. Even if I have to travel somewhere.
  • Evelyn G
    Evelyn G Member Posts: 21
    deanna14 said:

    brachy
    Evelyn, my internal radiation was in December of last year. It really was an ordeal that shook my confidence in the Radiation Center that I go to in Springfield at Hulston Cancer Center. There was simply NO respect for me as a person at all. I am still contemplating what I will do to make an impact, but I will have to do something to let them know how I felt. I get very emotional about this and feel like I have to at least try to do something. I feel very strongly that they need to change the procedure for vaginal radiation. I hate to think of other women feeling the way that I did that day. There is no way to take the intrusiveness out of that procedure, but there are a lot of ways to make patients as comfortable as possible. They did not even try, starting with making my husband leave the room. They could have very easily let him stay with me until they left the room and started using the xray equipment. At the very least, they could have had a nurse there with me instead of just me and one male stranger who was sticking tubes in my orifices! My husband was LIVID... I still don't know how I got him out of there that day without a scene! You cannot even mention it around him, he gets irrate. He still wants to get a lawyer and sue them! I just want to do something to protect other women from having the same experience.
    Anyway, I am happy to hear that you had a better experience. Really, it wasn't the procedure that was the problem, I expected it to be intrusive. It was the unprofessional manner which supposed "professionals" handled it.
    WOW... off my soapbox now...
    If I ever have to again (heaven forbid), I will go elsewhere and would encourage others to also. Even if I have to travel somewhere.

    bracy
    Deanna, how awful! I thought there was a law that a nurse had to be in the room. No matter where I go (and I've had several "second" opinions), there is ALWAYS a nurse accompanying the doctor before anything is done internally.

    I would start making phone calls to the hospital to find out who the administrator is. If you don't get any satisfactory response, I think a lawyer IS in order.

    I also wonder why the x-rays. I would think it's a straight shot. One question I have for my doctor is if they target the same area three times. Do you suppose there is a flat side or something? I was told the area affectged would be 3-1/2 cm. I just don't understand it and the method they used in your case brings up more questions than answers.
  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    deanna14 said:

    Comfortable leg holders? Ativan? Vicodin?
    Wow... sounds a lot more humane than what I experienced with my internal radiation. It was not at all painful, but definately a little humiliating. I hope that your everyone has a more pleasant experience like Evelyn. Actually, I hope that all of you that still have internal radiation left to do.... demand an experience like Evelyn. I certainly would if I knew then what I know now. I had a simulation prior to the actual treatment. The nurse inserted a catheter into my bladder, then the doctor came in and inserted a cylinder into my vagina, then the tech placed another catheter into my rectum. Then they took xrays and cat scans to plan the proper target for the HDR. That took about 30 minutes, then I went back 2 days later for my first treatments. The first and second treatments were 8 minutes each and the last was 6 minutes and were 1 week apart. There were virtually no side effects except a sunburned like feeling and some burning with urination.

    Don't be afraid or worried, but if someone would have offered me Ativan I would have taken it. This portion of my treatment was probably one of the most emotional for me, so far.

    Good luck to all of you and God Bless.

    Oh my goodness
    Deanna, I salute you for what you went through. Did they even warn you what they were going to do to you? Dang that's is just pure humiliation for you. You need a great big hug for that. Are you finished with HDR now?

    Lots of hugs to you,
    Sharon
  • Ro10
    Ro10 Member Posts: 1,561 Member
    deanna14 said:

    brachy
    Evelyn, my internal radiation was in December of last year. It really was an ordeal that shook my confidence in the Radiation Center that I go to in Springfield at Hulston Cancer Center. There was simply NO respect for me as a person at all. I am still contemplating what I will do to make an impact, but I will have to do something to let them know how I felt. I get very emotional about this and feel like I have to at least try to do something. I feel very strongly that they need to change the procedure for vaginal radiation. I hate to think of other women feeling the way that I did that day. There is no way to take the intrusiveness out of that procedure, but there are a lot of ways to make patients as comfortable as possible. They did not even try, starting with making my husband leave the room. They could have very easily let him stay with me until they left the room and started using the xray equipment. At the very least, they could have had a nurse there with me instead of just me and one male stranger who was sticking tubes in my orifices! My husband was LIVID... I still don't know how I got him out of there that day without a scene! You cannot even mention it around him, he gets irrate. He still wants to get a lawyer and sue them! I just want to do something to protect other women from having the same experience.
    Anyway, I am happy to hear that you had a better experience. Really, it wasn't the procedure that was the problem, I expected it to be intrusive. It was the unprofessional manner which supposed "professionals" handled it.
    WOW... off my soapbox now...
    If I ever have to again (heaven forbid), I will go elsewhere and would encourage others to also. Even if I have to travel somewhere.

    Deanna sorry for what you went through
    How humiliated you must have felt. I can understand your husband's anger. Nobody should be treated that way. I too am surprised they did not have a female in the room when the male was inserting tubes. I had an xray taken before I started the external radiation and the doctor put a tampon in, that must of had something to show up on x-ray to show the exact placement of the vaginal cuff. Don't know if that was the reason for your x-rays. They do want to make sure they get the radiation in the correct spot.
    I too would ask to speak to the hospital administrator and express you concerns. As a nurse you know about respecting patient's dignity. You know that yours was not respected.
    I am not looking forward to my internal radiation after your experience, as I will have to be in the hospital for several days with that thing inside of me. I am sure I too will have a catheter during the time the implant is in place. I just hope I don't have to lay on my back the whole time.
    Hope you are doing okay after your last chemo treatment with no nausea and no fatigue.
    Take care. HUGS to you.
  • deanna14
    deanna14 Member Posts: 732

    Oh my goodness
    Deanna, I salute you for what you went through. Did they even warn you what they were going to do to you? Dang that's is just pure humiliation for you. You need a great big hug for that. Are you finished with HDR now?

    Lots of hugs to you,
    Sharon

    Thanks Ladies!
    Thank you for validating my feelings. I really do need to deal with this and I have been trying to decide who to speak with. I guess the hospital administrator is a good place to go. I considered speaking to the doctor about it, but I did speak to the supervisor in that area of the radiation center, (a man), who tried to downplay the whole situation. I suspect that the rad tech that did this, did not follow policy.

    The procedure was explained to me very well prior, by the nurse who inserted the urinary catheter. Yes, I finished radiation in December, but can't seem to shake the feeling that I need to pursue this. I just do not want another woman to feel the way I did that day! I wanted to finish my treatments and think about how I wanted to handle it. The people in the external radiation area were very professional.

    Thanks again for letting me voice my frustrations.
    Deanna
  • Ro10
    Ro10 Member Posts: 1,561 Member
    deanna14 said:

    Thanks Ladies!
    Thank you for validating my feelings. I really do need to deal with this and I have been trying to decide who to speak with. I guess the hospital administrator is a good place to go. I considered speaking to the doctor about it, but I did speak to the supervisor in that area of the radiation center, (a man), who tried to downplay the whole situation. I suspect that the rad tech that did this, did not follow policy.

    The procedure was explained to me very well prior, by the nurse who inserted the urinary catheter. Yes, I finished radiation in December, but can't seem to shake the feeling that I need to pursue this. I just do not want another woman to feel the way I did that day! I wanted to finish my treatments and think about how I wanted to handle it. The people in the external radiation area were very professional.

    Thanks again for letting me voice my frustrations.
    Deanna

    Deanna I hope you will pursue this matter with hospital admin.
    I can understand wanting to finish your treatments before you pursue the matter of the internal radiation. Your feelings are so strong now, that you probably would make a better point. Being a nurse you know how it should have been handled. When you get this matter behind you, you can relax and know that you addressed the issue and move on. I am sure it is very troubling to you still. Continue to feel free to voice your frustrations.
    Take care of yourself.
  • Evelyn G
    Evelyn G Member Posts: 21
    Bracytherapy radiation
    Hi All,

    I hope radiation treatments went well for all those who had them. How did it go?

    My third and final bracy treatment was a week and a half ago. I developed a very uncomfortable burning problem. I've been using yogurt with the dilator twice a day and after a week it's finally beginning to clear up. Anybody else experience this? If so, how was it treated?
  • deanna14
    deanna14 Member Posts: 732
    Evelyn G said:

    Bracytherapy radiation
    Hi All,

    I hope radiation treatments went well for all those who had them. How did it go?

    My third and final bracy treatment was a week and a half ago. I developed a very uncomfortable burning problem. I've been using yogurt with the dilator twice a day and after a week it's finally beginning to clear up. Anybody else experience this? If so, how was it treated?

    burning
    I too had some burning with brachy. It was not overly uncomfortable, so I guess I just "put up with it." It sounds like yours is much worse. Also, I was not given dilators, but told that I would need them if I didn't remain sexually active.
  • Evelyn G
    Evelyn G Member Posts: 21
    finished brachy
    Hi All,

    Finished the three brachy procedures May 1. Then we went to Florida with my daughter's family. We had fun but that yeast infection dragged on the entire time. I tried to see a doc in Orlando but no one would see me. I called my radiation doc at home and was told to use yogurt. So I used the dialator twice a day with the yogurt. It still didn't go away entirely so we came home a few days early to call the doc again. He prescribed a pill that pretty much took care of it, although not completely yet.

    I saw the radiation doc Tuesday and he said everything was fine. This coming Tuesday I have a date with radiology for the full body scan and an appt. with my chemo doc on Friday. Seems all I'm doing is going to doctors lately.

    My hair is about 1/2" long now and "sisters" recognize the look and I wind up hugging complete strangers. I'm surprised how many of us belong to this unique "sisterhood" and what an immediate connection we have. There is some good that comes from this after all!

    Blessings to All.......