Rhabdomysarcoma

goodspirits
goodspirits Member Posts: 4
edited March 2014 in Sarcoma #1
I am new to this so please bear with me. My husband 32 was diagnosed with Rhabdomyosarcoma. I am looking for any information pertaining to this sarcoma or survivors out there to talk to. He is currently taking Doxil and previously was taking VAC. He has done radiation to his upper thigh and spine. He has 4 spots on his lung. I would like to start giving him some supplements. We would like to talk to others that have had this type of cancer or currently have. God Bless all and take care.

Comments

  • jerzfam
    jerzfam Member Posts: 15
    #2
    I had a different sarcoma, but I would love to help if I can. I am 8 mos. out of chemo, and doing really well. I had 2 surgeries and 6 chemo sessions. I can tell you that what ultimately got me through this is faith and love. Support is the most important thing you can give him. It is such a scary thing, and it's very hard on the caregiver. More because of watching a loved one in pain, but also just doing the things he can't do himself yet. I will keep you in my prayers. I would be happy to answer any questions you may have or just be an ear or a shoulder to depend on. If you'd like to know more details of my journey, check out my webpage ("Osteosarcoma? At your are?") You will find that I am an extremely blessed woman. Good luck, and God Bless you both.
  • jeffk77
    jeffk77 Member Posts: 2
    #3
    I had rhabdomysarcoma many years ago now... I am just past the fifteen year mark since my treatment. Now I was diagnosed as a child, but if I can be of help, you're welcome to my ear and my insight...for whatever that's worth to you. I went through one surgery, and two years of chemotherapy and radiation. My best piece of advice, like most will tell you, is to just give the best support you can. I personally believe so much in the healing power of humour and happiness, no matter how bleak things appear to be. It has been a long time since my treatment, and I have not only fully recovered, but now following a lifetime of illness, I am in the best health of my life. I hope this little message helps at all. Good luck and God Bless.
  • Joeysmom2
    Joeysmom2 Member Posts: 3
    #4
    Hi my son is a survivor, he is 9 and this all started @ age 18 mos. What type of supplements were you thinking about? I sell Tahitian Noni Juice and it is susposed to really help with cancer patients. I would have given it to my son if I knew about back then. He drinks it now. They have a web site if you are interested under the same name. Let me know what you think, and I will pray for your husband and you. God bless you both. Lisa
  • uphillmarie
    uphillmarie Member Posts: 3
    #5
    I'm fairly new to this too. my husband was diagnosed
    Jan. of 2003. He had radiation and is still undergoing chemotherapy.I've learned a little about this type of cancer in the last year.I know it's very rare in adults. my husband is 30. Would love to talk to someone in the same boat.
  • goodspirits
    goodspirits Member Posts: 4
    #6
    uphillmarie said:

    I'm fairly new to this too. my husband was diagnosed
    Jan. of 2003. He had radiation and is still undergoing chemotherapy.I've learned a little about this type of cancer in the last year.I know it's very rare in adults. my husband is 30. Would love to talk to someone in the same boat.

    I just e-mailed you marie. Please let me know if you dont get it. I would love to talk to you.
  • goodspirits
    goodspirits Member Posts: 4
    #7
    jerzfam said:

    I had a different sarcoma, but I would love to help if I can. I am 8 mos. out of chemo, and doing really well. I had 2 surgeries and 6 chemo sessions. I can tell you that what ultimately got me through this is faith and love. Support is the most important thing you can give him. It is such a scary thing, and it's very hard on the caregiver. More because of watching a loved one in pain, but also just doing the things he can't do himself yet. I will keep you in my prayers. I would be happy to answer any questions you may have or just be an ear or a shoulder to depend on. If you'd like to know more details of my journey, check out my webpage ("Osteosarcoma? At your are?") You will find that I am an extremely blessed woman. Good luck, and God Bless you both.

    I thank you all for replying. It has made my day to know people care and want to talk and help others. I look forward to hearing more from you. Thank you all so much. love and blessings. Amy
  • swatts
    swatts Member Posts: 2
    #8
    I am also new to this...my 22 month old grandson has Rhabdo - currently on chemo...it's his whole lung plus it is also in other areas...I'm trying to get a full picture of what is ahead for us. help
  • uphillmarie
    uphillmarie Member Posts: 3
    #9
    goodspirits said:

    I just e-mailed you marie. Please let me know if you dont get it. I would love to talk to you.

    Did you get my email -Roxann
  • uphillmarie
    uphillmarie Member Posts: 3
    #10
    Amy- Sorry I meant to tell you too You can also
    Email me at my regular email address at :
    Cheekies@comcast.net Hope to hear from you soon
    -Roxann-
  • kennysmom
    kennysmom Member Posts: 4
    #11
    jeffk77 said:

    I had rhabdomysarcoma many years ago now... I am just past the fifteen year mark since my treatment. Now I was diagnosed as a child, but if I can be of help, you're welcome to my ear and my insight...for whatever that's worth to you. I went through one surgery, and two years of chemotherapy and radiation. My best piece of advice, like most will tell you, is to just give the best support you can. I personally believe so much in the healing power of humour and happiness, no matter how bleak things appear to be. It has been a long time since my treatment, and I have not only fully recovered, but now following a lifetime of illness, I am in the best health of my life. I hope this little message helps at all. Good luck and God Bless.

    my son had rhabdomysarcoma seems to be having many late after effects from radiation to pelvic area. problem seems to be hip and leg pain when walking bending. he's really bumming since he has always been althlete and can't seem to play. anyone have these kinds of problems after treatment and what seemed to work.
  • sar899
    sar899 Member Posts: 2
    #12
    uphillmarie said:

    I'm fairly new to this too. my husband was diagnosed
    Jan. of 2003. He had radiation and is still undergoing chemotherapy.I've learned a little about this type of cancer in the last year.I know it's very rare in adults. my husband is 30. Would love to talk to someone in the same boat.

    My 20 year old son is a few months behind your husband on this adventure. I'd be interested to hear how you and he are doing now.
  • faulksmom
    faulksmom Member Posts: 2
    #13
    Hello I need to know how your husband is, my 19 year old son has been diagnosed with rhabdo also and just compeleted 6 cycles of chemo and now is starting radiation, but during chemo the cancer spread to his lungs and he will be starting cpt 11, please email me if you get this thanks
  • DanaSharpBarfield
    DanaSharpBarfield Member Posts: 2
    #14
    faulksmom said:

    Hello I need to know how your husband is, my 19 year old son has been diagnosed with rhabdo also and just compeleted 6 cycles of chemo and now is starting radiation, but during chemo the cancer spread to his lungs and he will be starting cpt 11, please email me if you get this thanks

    rhabdom
    How are you doing??? I am in treatment since Dec. 07-----chemo, radiation and chemo---now possible surgery>
  • Triggin
    Triggin Member Posts: 5
    #15
    goodspirits said:

    I thank you all for replying. It has made my day to know people care and want to talk and help others. I look forward to hearing more from you. Thank you all so much. love and blessings. Amy

    Rhabdo
    Hi all,

    I too, also "had" Rhabdomyosarcoma when i was 19 yrs old. Now im 32!!!!!!!!!! i had stage 2 paratesticular and have to have one removed. but all is well! i am married and very happy to be alive every day! i went through many surgeries, had radiation, and a full year of chemo treatment. I am thankful to be alive and cherrish every moment and relationship! DON'T EVER TAKE ANYTHING FOR GRANTED!
  • Unknown
    Unknown
    #16
    This comment has been removed by the Moderator
  • Ma64
    Ma64 Member Posts: 15
    #17
    rhabdomyosarcoma
    I am a 45 yr old female. I was diagnosed in September 2007. My original sight was my left knee, thigh, and calf. I have been through surgery, radiation and chemo. I now have cancer in both lungs but it is not sarcoma. Treatment works. Stay positive. Chemo can be difficult but is worth it. I had side effects "not known to science" (Dr G. Thomas Budd, sarcoma oncologist Clv Clinic) and continue with treatment and stay positive.
    Before you take any type of supplement of any type...CONSULT you doctor.
    Good luck! I will pray for you. I will be happy to answer any questions you may have based on what I know and my experience.
  • timmysmum
    timmysmum Member Posts: 1
    #18
    Joeysmom2 said:

    Hi my son is a survivor, he is 9 and this all started @ age 18 mos. What type of supplements were you thinking about? I sell Tahitian Noni Juice and it is susposed to really help with cancer patients. I would have given it to my son if I knew about back then. He drinks it now. They have a web site if you are interested under the same name. Let me know what you think, and I will pray for your husband and you. God bless you both. Lisa

    My son Timmy
    Dear Lisa, I hope your son is still doing well? My son has just relapsed in his sinuses, etc
    Were trying to find more radiation or more surgery with chemotherapy (starting tomorrow. Will you tell me about your story? I have put Timmys link on here - hope you don't mind
    Best wishes, kate xx

    timmysfight@blogspot.com
  • tinker25
    tinker25 Member Posts: 1
    #19
    uphillmarie said:

    I'm fairly new to this too. my husband was diagnosed
    Jan. of 2003. He had radiation and is still undergoing chemotherapy.I've learned a little about this type of cancer in the last year.I know it's very rare in adults. my husband is 30. Would love to talk to someone in the same boat.

    Hi my husband was diagnosed
    Hi my husband was diagnosed in November of 2009 with Rhabdomysarcoma at age 32. He is working with the team at Sloane in NYC. I was pregnant when we go the horrible news and had a 2 year old daughter. He went through 10 cycles of intense chemotherapy and radiation. He was cancer free for 8 months he had a scheduled surgery date to remove his port and then his las scans showed a reoccurence. The dr.'s are not very hopeful that they can get rid of this. He is back on chemo. I know this letter is from a while ago wondering how your husband is doing?
  • GlassGuy66
    GlassGuy66 Member Posts: 3
    #20
    tinker25 said:

    Hi my husband was diagnosed
    Hi my husband was diagnosed in November of 2009 with Rhabdomysarcoma at age 32. He is working with the team at Sloane in NYC. I was pregnant when we go the horrible news and had a 2 year old daughter. He went through 10 cycles of intense chemotherapy and radiation. He was cancer free for 8 months he had a scheduled surgery date to remove his port and then his las scans showed a reoccurence. The dr.'s are not very hopeful that they can get rid of this. He is back on chemo. I know this letter is from a while ago wondering how your husband is doing?

    So sorry....

    So sorry....

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