Uterine Sarcoma

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Comments

  • catbird
    catbird Member Posts: 33
    #22
    faith316 said:

    Catbird - Thinking of you
    I am so sorry that you will be back in treatment. What a mixed bag of emotions we have to continuously deal with. We want to know the results, we don't want to hear the results. We dread the treatment, we are grateful for the opportunity for treatment. We hate that it is us, we are grateful it isn't someone else that we love. What a challenge it is to find the balance in dealing with all that.

    Unfortunately it is near impossible for us to begin to guess what goes on between insurance carriers and providers. I pray that you will not be anxious about anything associated with your insurance coverage. If I understood you correctly, going to MD Anderson may provide you with a path to another oncologist if your carrier should cancel their contract with your doctor/clinic. Even though it may be stressful to change doctors or treatment centers I am confident there are many caring and competent doctors for us to place our trust in. MDA would be a wonderful resource for that referral.

    Like you my doctor also had to dissect my tumor to remove it. Because cancer cells can travel through our body via our blood and lymph nodes there is really no way to know if cells escaped long before our surgeries, during our surgery or even after our surgery. The most we can do is take control of those things we do have control over. We can participate in decisions regarding each phase of our treatment, we can look to diet, exercise and nutritional options that help to make us stronger and we can be thankful for every little blessing along the way.

    My PET scan was Friday and my doctor appointment yesterday (Wednesday). The lesion on my liver is only slightly larger, the original nodules on my lungs have also only increased slightly and a few more are now showing on this scan. So here is our plan: We are sending another tissue sample to another lab and having it tested for drug reaction. I am to call in two weeks to hear the results of that test. The doctor mentioned two drugs and perhaps one pill form of chemo that we could consider if we need to. So far my disease is growing very, very slowly and I have no symptoms causing me any distress. My doctors wife is an Oncology RN, nutritionist, practices Chinese medicine, herbs and acupunture. I will be making an appointment with her next week to investigate a program to strengthen my body to help it fight the cancer. Even though the news could have been better I am feeling very blessed and confident that I am on the right path.

    Please keep in touch. I would love to continue communicating. This venue is okay with me but if you would prefer to email please let me know and I will send you my address.

    God's peace,
    Pam

    faith316 got your e mail but
    you must need to change something as I could not send a response to you, it says "faith316 does not accept private e mails". try a test again & I will try too.
    will be interesting to hear what the dr's wife has to say. I know someone who is a Dr of chinese medicine. Ask about the no sugar does that include fruit, no soy, no flaxseed, no dairy, etc. Glad to hear that your tumor was also cut up inside you. starting 2.5 hrs once a week for 4 wks on the lite chemo gemzar as the dr wants to wait before giving me the strong stuff as to what MDA will say. I feel fine except my hair was a light brown & came back all gray & sorta wavy, it's about 1.5 " long now. funny take care
  • faith316
    faith316 Member Posts: 25
    #23
    catbird said:

    faith316 got your e mail but
    you must need to change something as I could not send a response to you, it says "faith316 does not accept private e mails". try a test again & I will try too.
    will be interesting to hear what the dr's wife has to say. I know someone who is a Dr of chinese medicine. Ask about the no sugar does that include fruit, no soy, no flaxseed, no dairy, etc. Glad to hear that your tumor was also cut up inside you. starting 2.5 hrs once a week for 4 wks on the lite chemo gemzar as the dr wants to wait before giving me the strong stuff as to what MDA will say. I feel fine except my hair was a light brown & came back all gray & sorta wavy, it's about 1.5 " long now. funny take care

    Email - Catbird
    I did have to change a setting in my profile. I will send another test for your reply. When do you start your treatments? Did you get an appointment confirmed at MDA? I think you originally said six weeks so the timing should be just about right to get your second opinion.

    Isn't it great just to have hair again? Unfortunately, my hair has been white since I was in my early forties. I have never colored it because it never really bothered me. I think it bothered my daughter sometimes more than it did me. Besides it really is a nice white and I just couldn't see spending the time or money to get it done. Mine did come back white and wavy both times. I think they use to pay for these finger waves in the 20's. Since my last treatment was in November I am actually due for a haircut. I've been putting it off because I don't want to cut of what just came back.

    I am glad you are feeling well. Keep me posted.

    Pam
  • Wonderland
    Wonderland Member Posts: 2
    #24
    uterine sarcoma
    I was diagnosed with Uterine Carcinosarcoma in Aug 09. I had surgery and then 3 cycles of Taxol and Carboplatin, followed by external and internal radiation, ending Dec 18,09. In January '10, the doctors found that the cancer recurred in the vagina and spread to one of my lungs. I started a new chemo protocol in January '10 and just finished cycle 7 of Ifosfamide and Taxol. The tumors have been shrinking. Is anyone else receiving the same chemo?
  • Rachel S
    Rachel S Member Posts: 2
    #25
    Writing in for my Mom
    Hello ~

    My Mother was diagnosed with (stage 3c) LeioMyoSacroma in March 2010. I am looking to make a connection in Northwest, Ohio or Columbus, Ohio Please. Please please contact me if you live near this area. :) I greatly appreciate it so much!
  • faith316
    faith316 Member Posts: 25
    #26
    Rachel S said:

    Writing in for my Mom
    Hello ~

    My Mother was diagnosed with (stage 3c) LeioMyoSacroma in March 2010. I am looking to make a connection in Northwest, Ohio or Columbus, Ohio Please. Please please contact me if you live near this area. :) I greatly appreciate it so much!

    Northwest Ohio
    I am sorry to hear about your Mom. I am not sure if you saw my previous post above but I am near Toledo, OH. I did get a second opinion through OSU in Columbus. Please let me know how I can help. Gods peace.
  • Rachel S
    Rachel S Member Posts: 2
    #27
    faith316 said:

    Northwest Ohio
    I am sorry to hear about your Mom. I am not sure if you saw my previous post above but I am near Toledo, OH. I did get a second opinion through OSU in Columbus. Please let me know how I can help. Gods peace.

    Thank you!
    Thank you SO much!! I will try and send you a message!! My Mother lives in Toledo! I live and 1 hour and 15 mins south of Toledo.

    Rachel :)
  • rheadr43
    rheadr43 Member Posts: 2
    #28
    My mom has uterine carcino sarcoma July -2010
    She's 66 just had a total hysterectomy and now going through chemo. she has 6 cycles every 21 days of Taxol (day 1) and Isofamide (day 2 & 3). She's just finished cycle 1 yesterday. From what I've read, its grim and survivors after 5 yrs is rare. Can anyone offer me help, advise or additional eduacation to help my mom through this terrible time. My name is Courtney
  • rheadr43
    rheadr43 Member Posts: 2
    #29
    Wonderland said:

    uterine sarcoma
    I was diagnosed with Uterine Carcinosarcoma in Aug 09. I had surgery and then 3 cycles of Taxol and Carboplatin, followed by external and internal radiation, ending Dec 18,09. In January '10, the doctors found that the cancer recurred in the vagina and spread to one of my lungs. I started a new chemo protocol in January '10 and just finished cycle 7 of Ifosfamide and Taxol. The tumors have been shrinking. Is anyone else receiving the same chemo?

    Yes, my mother just started
    Yes, my mother just started the 6 cycles of taxol and ifosfamide. She just finished cycle 1. She was diagnosed in April -2010. She had a total hysterectomy. the good news they were able to get all the cancer and it had not spread to any other area. the lymph nodes were okay too. Everything I read so far is pretty grim abt this type of cancer, it has a high rate of coming back. How did your body handle the ifosfamide and taxol?
  • tracyrenaewilson
    tracyrenaewilson Member Posts: 5
    #30
    donna1960 said:

    leiomyosarcoma
    Jan 2009 had total hysterectomy turned out low grade leiomyosarcoma.Being seen at Uof MI have Cts of abdomin and chest x-rays every 6 months. I went for my mammogram in Jan 2010 to find a growth then learned it was there 11/08 guess what its a low grade leiomyosacroma same as before. They say rare to travel here. Talking about tomoxifen. I go in May for my CT we will do chest and ab. I'm a nervous wreck anyone have any advise?

    Are you religious??? I
    Are you religious??? I found it easy to deal with my cancer (which was also a low grade LMS in the uterus also) by giving every worry and concern to GOD! You are not suppose to carry worry and fear with you! You give it to GOD and he carries it! I know that sounds like whatever but, it worked for me! Trust in him and he will bring you relief! If you are a praying person, well then prayer helps also! If you need anyone to talk to then please let me know!
  • cbotts
    cbotts Member Posts: 6
    #31
    rheadr43 said:

    My mom has uterine carcino sarcoma July -2010
    She's 66 just had a total hysterectomy and now going through chemo. she has 6 cycles every 21 days of Taxol (day 1) and Isofamide (day 2 & 3). She's just finished cycle 1 yesterday. From what I've read, its grim and survivors after 5 yrs is rare. Can anyone offer me help, advise or additional eduacation to help my mom through this terrible time. My name is Courtney

    Hi Courtney, my mom went
    Hi Courtney, my mom went though the same thing.
    She was 58 when diagnosed with uterine sarcoma (cancer also found in the pelvic lymph nodes) in dec '08, she had a hysterectomy then chemo and radiation finishing in Aug '09. Its been a year now and she is doing well. Don't go reading the survival rates, they are too depressing and the stats are probably outdated by now. Its such a rare cancer that there is not much out there. I would just focus on taking things one day at a time and helping her through her chemo treatments. Have you found any information by now, as I was never really able to find much.
    My thought are with you and your mom.
    Christine
  • SheaBear3335
    SheaBear3335 Member Posts: 6
    #32
    Uterine Carcinosarcoma
    I was diagnosed with Uterine Carcinosarcoma at 27 I'm now 29 and I was wondering if there are any side effects that some of you may still be going through??? I'm a year post treatments and still having tons of trouble. All my paps come back bad and some inconclusive. They have me doing them twice a month. I notice a few of you are older than myself and have had children. I've had a totaly hysterectomy with complete lymph node removal...completed chemo/Rad both external and internal. I've never had children. This all came about when I started to have hemorrhaging and my GYN completed a D&C. Sometimes I cannot use the restroom with out so much pain that I double over. if there are any of you who've gone through this please share.
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #33
    SheaBear3335 said:

    Uterine Carcinosarcoma
    I was diagnosed with Uterine Carcinosarcoma at 27 I'm now 29 and I was wondering if there are any side effects that some of you may still be going through??? I'm a year post treatments and still having tons of trouble. All my paps come back bad and some inconclusive. They have me doing them twice a month. I notice a few of you are older than myself and have had children. I've had a totaly hysterectomy with complete lymph node removal...completed chemo/Rad both external and internal. I've never had children. This all came about when I started to have hemorrhaging and my GYN completed a D&C. Sometimes I cannot use the restroom with out so much pain that I double over. if there are any of you who've gone through this please share.

    SheaBear
    Although I do not share your diagnosis, I am sending prayers your way for some relief from the stress and the pain...Hang in !

    Laurie

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