post treatment

michigangal
michigangal Member Posts: 10
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I just completed approximately 3 months of treatment, 24 external radiation treatments, 2 chemos, and 10 very agressive interanl radiation treatments (18 rods surgically implanted around the vagina) divided intwo sessions. Does the uncomfortablness in that area ever go away. I am so exhausted from not sleeping because of the burning and itching. I did mend all of the leisions from the external, but I am just ready to pull my hair aout. Also, how soon after the internal radiation treatments do you begin using the dilator?

Comments

  • SharonEL
    SharonEL Member Posts: 20
    #2
    Hi michigangal,

    Congratulations on finishing treatment. I had external and internal radiation for vaginal cancer also. My internal did not seem to be as aggressive as yours. I had 3 High-Dose Brachytherapy treatments. But yes the discomfort does get better. I used the dilator during most of my internal treatments. But afterwards, I had to take a break because it was just too painful. So do what your Doc says. If it hurts, let them know.

    Hopefully, by now you should be feeling somewhat better. If you stop by and see this, let me know how you are doing.

    Sharon
  • michigangal
    michigangal Member Posts: 10
    #3
    SharonEL said:

    Hi michigangal,

    Congratulations on finishing treatment. I had external and internal radiation for vaginal cancer also. My internal did not seem to be as aggressive as yours. I had 3 High-Dose Brachytherapy treatments. But yes the discomfort does get better. I used the dilator during most of my internal treatments. But afterwards, I had to take a break because it was just too painful. So do what your Doc says. If it hurts, let them know.

    Hopefully, by now you should be feeling somewhat better. If you stop by and see this, let me know how you are doing.

    Sharon

    Hey SharonL, what a coincidence my name is Sharon also. I am having a terrible time with fatigue and depression. In fact I am going to the doctor today to try another antidepressent. How long ago were you diagnosed and what's your prognosis?
  • michigangal
    michigangal Member Posts: 10
    #4
    SharonEL said:

    Hi michigangal,

    Congratulations on finishing treatment. I had external and internal radiation for vaginal cancer also. My internal did not seem to be as aggressive as yours. I had 3 High-Dose Brachytherapy treatments. But yes the discomfort does get better. I used the dilator during most of my internal treatments. But afterwards, I had to take a break because it was just too painful. So do what your Doc says. If it hurts, let them know.

    Hopefully, by now you should be feeling somewhat better. If you stop by and see this, let me know how you are doing.

    Sharon

    Hey SharonL, what a coincidence my name is Sharon also. I am having a terrible time with fatigue and depression. In fact I am going to the doctor today to try another antidepressent. How long ago were you diagnosed and what's your prognosis?
    Any other info or insight would be greatly appreciated. I can't thank you enough for answering me. I am just learning how to use this board as you can see and I answered my own board. I'll get the hang of it. Have a great day!!!
  • SharonEL
    SharonEL Member Posts: 20
    #5
    michigangal said:

    Hey SharonL, what a coincidence my name is Sharon also. I am having a terrible time with fatigue and depression. In fact I am going to the doctor today to try another antidepressent. How long ago were you diagnosed and what's your prognosis?
    Any other info or insight would be greatly appreciated. I can't thank you enough for answering me. I am just learning how to use this board as you can see and I answered my own board. I'll get the hang of it. Have a great day!!!

    Hi Sharon (michigangal),
    I was diagnosed Feb 3, 2003. March 3, 2003, I had a complete hysterectomy, partial radical vaginectomy, and a lymphadenectomy. Luckily I caught my tumor before it got too large, but I did have a positive lymph node. So, I had radiation too. I finished treatment June 25, 2003. My prognosis is great! On Feb 17, 2004 my Doc told me I am in complete remission.

    I still have some issues. I understand about the fatique and depression. I suffered worse after treatment with the depression than during treatment. It's like this big let-down after constant intense emotion for months on end. I still have some physical issues from treatment. But I am alive and have a great deal of hope for the future. I am one of the lucky ones.

    If you feel like telling me, I would like to hear your story also.

    Sharon
  • michigangal
    michigangal Member Posts: 10
    #6
    SharonEL said:

    Hi Sharon (michigangal),
    I was diagnosed Feb 3, 2003. March 3, 2003, I had a complete hysterectomy, partial radical vaginectomy, and a lymphadenectomy. Luckily I caught my tumor before it got too large, but I did have a positive lymph node. So, I had radiation too. I finished treatment June 25, 2003. My prognosis is great! On Feb 17, 2004 my Doc told me I am in complete remission.

    I still have some issues. I understand about the fatique and depression. I suffered worse after treatment with the depression than during treatment. It's like this big let-down after constant intense emotion for months on end. I still have some physical issues from treatment. But I am alive and have a great deal of hope for the future. I am one of the lucky ones.

    If you feel like telling me, I would like to hear your story also.

    Sharon

    I had a partial hysterectomy in March of 2001. The doctor said this , however, is not related to that. I started out with blood clots in my legs in December, 2003. I went in the hospital January 5, 2004 and they found the tumor on January 17, 2004. As I said earlier I had 5 weeks of external radiation, 2 chemos and 10 internal radiation treatments. I also had to have a Greenfield filter put in at the base of my lung because of the blood clots and a couple of blood transfusions along the way. I was actually in the hospital about 40 days with a few days in between because until the treatment started working the blood clots would not respond well. I also had a piece of my right lung removed because they found a spot, wanted to make sure it was not cancer. It wasn't cancer, but it was a blood clot, so they had to take it out because it was not protected by the filter. I just finished my last treatment March 26, 2004. I truly hope that this depression goes away soon. I did get some new medication yesterday Effexor XR which is supposed to work in 4 days. We shall see. I am going to a wellness group today so that should help a lot. How long did your depression last? If you don't mind what side effects are you still dealing with? Thank you so much for sharing. No one else but a survivor can understand. I have my first pelvic next week on the 29th, so we will see how that goes. I continue to pray and use Bellruth Naprasek (imagery) CDs, along with counseling to keep me afloat. The Lord I believe truly wants happiness for all, there just might be a few satelites up there so my prayers are not getting thru (ha! ha!)I know physically I am much better than I was a month ago. Hopefully these blood clots will dissipate in my right leg and the depression subside so that I may get on with my new life. Like you said at least we survived and I truly believe we will have gained courage and strength from this journey. You take care and keep writing. It surely is helping me. May God Bless you.
  • SharonEL
    SharonEL Member Posts: 20
    #7
    michigangal said:

    I had a partial hysterectomy in March of 2001. The doctor said this , however, is not related to that. I started out with blood clots in my legs in December, 2003. I went in the hospital January 5, 2004 and they found the tumor on January 17, 2004. As I said earlier I had 5 weeks of external radiation, 2 chemos and 10 internal radiation treatments. I also had to have a Greenfield filter put in at the base of my lung because of the blood clots and a couple of blood transfusions along the way. I was actually in the hospital about 40 days with a few days in between because until the treatment started working the blood clots would not respond well. I also had a piece of my right lung removed because they found a spot, wanted to make sure it was not cancer. It wasn't cancer, but it was a blood clot, so they had to take it out because it was not protected by the filter. I just finished my last treatment March 26, 2004. I truly hope that this depression goes away soon. I did get some new medication yesterday Effexor XR which is supposed to work in 4 days. We shall see. I am going to a wellness group today so that should help a lot. How long did your depression last? If you don't mind what side effects are you still dealing with? Thank you so much for sharing. No one else but a survivor can understand. I have my first pelvic next week on the 29th, so we will see how that goes. I continue to pray and use Bellruth Naprasek (imagery) CDs, along with counseling to keep me afloat. The Lord I believe truly wants happiness for all, there just might be a few satelites up there so my prayers are not getting thru (ha! ha!)I know physically I am much better than I was a month ago. Hopefully these blood clots will dissipate in my right leg and the depression subside so that I may get on with my new life. Like you said at least we survived and I truly believe we will have gained courage and strength from this journey. You take care and keep writing. It surely is helping me. May God Bless you.

    Wow! You have really been through it. No wonder you are depressed. That whole blood clot thing is really scary. Do they know why you are having such problems with them?
    I am embarrassed to admit that the depression is still lingering. I have good days and bad days. But I think it is situational depression. Although I am lucky to be alive, my life now compared to before cancer is kinda messed up. Even though my Doc did not really think I was ready to go back to work, I rushed back after the external rads, while I was still doing the internal treatments. My job was very stressful with year-end stuff. Also, they were rearranging companies, etc. Also, while I was out with surgery and stuff, no one did my job. Add to that I worked with a bunch of very inconsiderate people. In September, I just quit. I was too overwhelmed. I should have taken longer to go back. I know, I read all the time about people who never miss a day of work all through treatment, etc. I thought I had to be tough, too. I quess it did not work for me. So now we are struggling financially.
    Also those physical problems. I am not sure how to say this on a public board. My part where I had cancer, is not functional. Added to that, I am having radiation necrosis problems in my hips. The muscles and stuff are definitely affected. My femoral head on my hip my also be dying. I won't know for sure for awhile. I go back to the ortho Doc in June. So I have been in some pain. I am getting fatter by the day because, I cannot move around too much. So those are the physical problems. So some days it does get to me.
    Sorry you asked aren't ya! LOL! I hope the new meds help. I have not tried anything for depression. I do occasionally take Xanax for anxiety. It especially helps me sleep.
    Good luck! Aslo, I am enjoying being in touch with another vaginal cancer survivor. So please continue writing also.
    Sharon
  • michigangal
    michigangal Member Posts: 10
    #8
    SharonEL said:

    Wow! You have really been through it. No wonder you are depressed. That whole blood clot thing is really scary. Do they know why you are having such problems with them?
    I am embarrassed to admit that the depression is still lingering. I have good days and bad days. But I think it is situational depression. Although I am lucky to be alive, my life now compared to before cancer is kinda messed up. Even though my Doc did not really think I was ready to go back to work, I rushed back after the external rads, while I was still doing the internal treatments. My job was very stressful with year-end stuff. Also, they were rearranging companies, etc. Also, while I was out with surgery and stuff, no one did my job. Add to that I worked with a bunch of very inconsiderate people. In September, I just quit. I was too overwhelmed. I should have taken longer to go back. I know, I read all the time about people who never miss a day of work all through treatment, etc. I thought I had to be tough, too. I quess it did not work for me. So now we are struggling financially.
    Also those physical problems. I am not sure how to say this on a public board. My part where I had cancer, is not functional. Added to that, I am having radiation necrosis problems in my hips. The muscles and stuff are definitely affected. My femoral head on my hip my also be dying. I won't know for sure for awhile. I go back to the ortho Doc in June. So I have been in some pain. I am getting fatter by the day because, I cannot move around too much. So those are the physical problems. So some days it does get to me.
    Sorry you asked aren't ya! LOL! I hope the new meds help. I have not tried anything for depression. I do occasionally take Xanax for anxiety. It especially helps me sleep.
    Good luck! Aslo, I am enjoying being in touch with another vaginal cancer survivor. So please continue writing also.
    Sharon

    SharonL: Sorry I missedyou yesterday, but I had a little speed bump yesterday. I was out to lunch with my Mom and went to the bathrom (BM) and there was blood and one big clot,so I rushed back to the hematologist's office and he had his nurses take me over to ER. Turns out I am embarased to say that one of the hemroids and been cut. I did not realize you could bleed that bad. Anyway I believe as the doctor's believe that the blood clots found my way to the cancer. The clots were in my left leg first and then my right and with the cancer being right at the vaginal wall I think it caused the lympnodes to work overtime, hence the blood clots. I pray everyday for healing to fullness of life.

    I still have a rough time between 10:00 a.m. and about noon. I took a short walk today. I had gon to a luncheon on Tuesday. There was a physical therapist there who suggested several exercises to be done to help with the fatigue. What have I got to lose? I am going to my sister's house for the weekend. Change of scenery and this gives my husband and son a chance to bond. My husband really does not want to talk about this, I think he is still very scared, but he is doing the best he can with what he has. Men do not usually like to verbalize when it comes to issues like this.

    WE are in a bad financial situation, but I know I am not ready to go back full time to any job. I firmly believe you have to listen to your body. I had not done that the first couple of weeks and it just frustrates you more. With being on Medicaid you have to get a job with full benefits otherwise you have no insurance. God I know will provide. Have to go for now, but I will check you out later. Hey do you ever use the chat room, because you can have a private conversation with anyone in the room. Maybe we can plan a time of day or night to chat. I would enjoy that. LOL I am so glad to have found you.
  • SharonEL
    SharonEL Member Posts: 20
    #9
    michigangal said:

    SharonL: Sorry I missedyou yesterday, but I had a little speed bump yesterday. I was out to lunch with my Mom and went to the bathrom (BM) and there was blood and one big clot,so I rushed back to the hematologist's office and he had his nurses take me over to ER. Turns out I am embarased to say that one of the hemroids and been cut. I did not realize you could bleed that bad. Anyway I believe as the doctor's believe that the blood clots found my way to the cancer. The clots were in my left leg first and then my right and with the cancer being right at the vaginal wall I think it caused the lympnodes to work overtime, hence the blood clots. I pray everyday for healing to fullness of life.

    I still have a rough time between 10:00 a.m. and about noon. I took a short walk today. I had gon to a luncheon on Tuesday. There was a physical therapist there who suggested several exercises to be done to help with the fatigue. What have I got to lose? I am going to my sister's house for the weekend. Change of scenery and this gives my husband and son a chance to bond. My husband really does not want to talk about this, I think he is still very scared, but he is doing the best he can with what he has. Men do not usually like to verbalize when it comes to issues like this.

    WE are in a bad financial situation, but I know I am not ready to go back full time to any job. I firmly believe you have to listen to your body. I had not done that the first couple of weeks and it just frustrates you more. With being on Medicaid you have to get a job with full benefits otherwise you have no insurance. God I know will provide. Have to go for now, but I will check you out later. Hey do you ever use the chat room, because you can have a private conversation with anyone in the room. Maybe we can plan a time of day or night to chat. I would enjoy that. LOL I am so glad to have found you.

    Hi again,
    Sorry I did not get back to you faster. I also have had a couple of rough days. Darn bowel problems from radiation come back every now and then.
    Sorry you had such a scare. It is better to go to the Doc to make sure you are all right, than not go and have something bad happen. As far as being tired, you are still very close to the end of treatment. You really need to give yourself time to recover. Be kind to yourself!
    My Hubby wants it to be all over with, too. He is very understanding, but he wants me back to normal. Sometimes I think that maybe I need to figure out what my new normal is. I am not sure I will ever be the same person.
    I used to go to that chat room all the time. I think it would be cool to get together and chat. Maybe we can use the CSN messages and exchange email addresses to plan our chat. There really aren't too many of us with this type of cancer. Have you ever been to the Hystersisters site. There is a female cancer forum there.
    Have a great time at your Sister's house this weekend. When you get a chance, get back to me, O.K.?
  • CindyWright
    CindyWright Member Posts: 12
    #10
    SharonEL said:

    Hi again,
    Sorry I did not get back to you faster. I also have had a couple of rough days. Darn bowel problems from radiation come back every now and then.
    Sorry you had such a scare. It is better to go to the Doc to make sure you are all right, than not go and have something bad happen. As far as being tired, you are still very close to the end of treatment. You really need to give yourself time to recover. Be kind to yourself!
    My Hubby wants it to be all over with, too. He is very understanding, but he wants me back to normal. Sometimes I think that maybe I need to figure out what my new normal is. I am not sure I will ever be the same person.
    I used to go to that chat room all the time. I think it would be cool to get together and chat. Maybe we can use the CSN messages and exchange email addresses to plan our chat. There really aren't too many of us with this type of cancer. Have you ever been to the Hystersisters site. There is a female cancer forum there.
    Have a great time at your Sister's house this weekend. When you get a chance, get back to me, O.K.?

    Hi Sharon x 2,

    I have been reading your postings and wow you have both been through so much. I do believe that both of you replied to my thread I posted regarding my sister who is terminally ill.

    I wish she was in your position. I have to admit, I am still hoping for a miracle. I am going to tell her about this site and about both of you. She is on the Hystersister site and talks to many folks in there and has actually found a friendship with a girl from the Netherlands.

    The best of luck to you both!

    Cindy
  • SharonEL
    SharonEL Member Posts: 20
    #11
    CindyWright said:

    Hi Sharon x 2,

    I have been reading your postings and wow you have both been through so much. I do believe that both of you replied to my thread I posted regarding my sister who is terminally ill.

    I wish she was in your position. I have to admit, I am still hoping for a miracle. I am going to tell her about this site and about both of you. She is on the Hystersister site and talks to many folks in there and has actually found a friendship with a girl from the Netherlands.

    The best of luck to you both!

    Cindy

    Hi Cindy,

    I am pretty sure that I have "met" your sister. Is her name Virgie? I know her from Hystersisters, also. I also know Maria (from the Nehterlands.) We even came here and chatted in the chat room once. That was before she knew for sure it was a recurrence. I have had her in my thoughts and prayers ever since. Not a day goes by that I don't think of her. I will continue to do so. I will also keep you and the rest of your family in my heart.

    Sharon
  • CindyWright
    CindyWright Member Posts: 12
    #12
    SharonEL said:

    Hi Cindy,

    I am pretty sure that I have "met" your sister. Is her name Virgie? I know her from Hystersisters, also. I also know Maria (from the Nehterlands.) We even came here and chatted in the chat room once. That was before she knew for sure it was a recurrence. I have had her in my thoughts and prayers ever since. Not a day goes by that I don't think of her. I will continue to do so. I will also keep you and the rest of your family in my heart.

    Sharon

    Sharon! Yes Virgie is my sister, my wonderful sister. I am so happy she knows you as I am sure you and the others are the only ones who can truly relate to her.

    I don't know if she told you but we lost our Mother to Bone Marrow Cancer 10 years ago, although it does still feel like it was yesterday..and My father died a year and a half after my mom. We miss my parents terribly and have done our best to continue with their traditions and wishes with ourselves and our children as hard as it has been.

    Virgie took care of our Mother with me as her right hand man (so to speak) until she died. It was a very emotionally exhausting experience that I know I still not recovered from, then top that off with my Father dying soon after, well lets just say Death is very real in our family.

    Virgie's cancer is devistating to our family. I see the pain in her children's eyes that I too carry from the same loss of my own parents. I want to help them so badly, yet I know there is nothing I can do. I see my sister in so much pain and sorrow and she is just so alone in all of this and there is nothing I can do for her or to help her. I JUST HATE IT. My sister is a fighter and has really shown great courage, just as she did caring for our parents. I think it is because she is the oldest child and maybe feels that she needs to keep it together.

    I am not sure if she told you, but they have given her limited time. Virg went in for surgery and they were unable to continue. I was at the hospital when the news was delivered to her children and husband. My heart broke that day for her family and I just can't believe it is happening again to our family and to someone so wonderful.

    Thank you for being her friend. Virgie has told me that it is easier to talk to other gals with this type of cancer as they "get it" where all us outsiders can do is pray to understand and struggle with the unknown.

    I can't wait to tell her that I met you! We are having her over this weekend for a Bar-B-Que and doing a slide show of pictures of us kids growing up in England. This is something my parents did for years with us kids on the weekends. They are great memories and we plan on recreating them this Saturday.

    Take Care and I hope to hear from you soon!

    Cindy
  • MariaA
    MariaA Member Posts: 2
    #13
    Hi Michigan and hi Sharon

    It's Maria from Hystersisters. Michigan, I too had the brach and all of the other stuff and finished it last year. It takes some time to get back to normal. As to dilating, I used candles (I could mold and make sizes, so they were ideal, as anything else would have been too big) Use lot's of water based cremes and such. Work your way up to larger and larger until you feel 'normal'. You will need to do this at your own pace. For me, I think I started dilating about a month after treatment was completed.
  • Unknown
    Unknown
    #14
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