Rhabdomyosarcoma - Adult

DanielleN3
DanielleN3 Member Posts: 3
edited March 2014 in Sarcoma #1
My father was diagnosed with Rhabdomyosarcoma in February 2009 (52 years old). He had a tumor the size of a softball in his upper thigh. A week following his diagnosis, he was started on chemo treatments. The current plan is to continue chemo thru February or March of 2010 (full year). We were told that his particular cancer was extremely aggressive and metastasis was highly likely. In May 2009, he went in for surgery to have to the tumor removed. Following surgery he started back on his chemo and also began radiation. The PET scans still show that the cancer has been fully removed. The reason why the doctors insist that he continue the chemo and radiation is to ensure that the cancer cells are completely dead and this should help to prevent a recurrance. Unfortunately, the surgery to remove the tumor created an additional problem. In the healing process, a fluid filled sack developed in his leg to the point where his leg swelled up like a balloon and made walking painful and nearly impossible. About 6 weeks ago, he stopped radiation and chemo to build his immune system back up to have a second surgery to remove the sack. He had surgery on Friday and is currently in the hospital recovering. Once his body heals, he will be back on chemo and radiation. Extremely hopeful that 2010 will be a better year .. cancer free and treatment free. I'd love to see my dad have his life back.

I'm looking for other adults with Rhabdomyosarcoma. Also looking for other treatment options that seem to have helped, advice or recommendations of any sort, and conditions of those with this cancer. Thank you!!

Comments

  • dlrobins
    dlrobins Member Posts: 17
    #2
    rhabdo protocol
    Danielle, Read you post about you dad. Sorry to hear about his diagnosis, but sounds like you are strong in your faith that he will make it through this. Mmy son Kyle was diagnosed at 21 years of age. He is presently being treated at Mayo in Phx. His rhabdo is embroynal. Hope I spelled that correctly. It was in his neck, and about the size of a fist before chemo was started. He is presently on VDC, with on week off, and then IE. During the week off he takes neupogen shots to boost white blood cells. It is a very aggressive protocol. He has also just completed 28/28 treatments of radiation. Kyle's treatment is scheduled to go until Mar. April of 2010. We began this nightmare in July 09. The tumor at this point is no longer visible, nor can it be felt. The doctors however, are waiting for about another 6 weeks to reimage withPET. Our doctors also say the same thing. Although it is gone, chemo continues to assure no stray cancer cells. God Bless you guys, Wishing 2010 to be the best year for all of us dealing with, but more importantly those fighting cancer. Believeing that 2010 will be the year for curing cancer. Love, Debbie and Kyle
  • sbsundevil
    sbsundevil Member Posts: 1
    #3
    My prayers are with you
    I just found this website. I actually lost my father in 1976 from adult Rhabdomyosarcoma. At that time he was one of a handful of documented adults to ever have this disease. The treatments back then were not what they are now. My prayers go out to your father and the entire family.
  • DanielleN3
    DanielleN3 Member Posts: 3
    #4
    sbsundevil said:

    My prayers are with you
    I just found this website. I actually lost my father in 1976 from adult Rhabdomyosarcoma. At that time he was one of a handful of documented adults to ever have this disease. The treatments back then were not what they are now. My prayers go out to your father and the entire family.

    Update
    Received fantastic news today regarding my fathers cancer. He had a CT scan at the beginning of the week and the results show that he doesn't have any cancer cells left in his body. After over a year of chemo, some radiation and 2 surgeries he is finally on his last week on chemo. Finally done on Friday!! For an adult with stage 4 rhabdomyosarcoma this is a huge feat. I am so thankful for the doctors and nurses at Mass General Hospital in Boston.
  • irishellie
    irishellie Member Posts: 8
    #5
    I'm an adult woman with Rhabdomyosarcoma
    Hello Danielle,

    I read your post and hope that your dad is doing better now. I was also diagnosed with rhabdo (in June it will be 5 years since it was detected). I was in treatment for 12 months as well with very aggressive chemo and radiation. I have not had any reoccurences and will be "cancer free" for four years at the end of June. Unfortunately, because of the amount of treatment I had to have, I have a 90% chance of getting Leukemia or Lymphoma within 10 years. So....I hold my breath and live my life to the fullest so that I'll have NO REGRETS. Please feel free to contact me at irishfoley@charter.net if you feel like talking. I might even be able to share some wisdom with you and your dad. My prayers are with you and your family.

    Ellen
  • cynthia75
    cynthia75 Member Posts: 4
    #6
    Your Father
    I am so sorry to hear about your father. I pray he is doing well. My daughter's dad has rhabdomyosarcoma as well. Stage 4 and it doesn't look good for us, but we will never give up on hope and faith. I do have a question, has your father ever served in the Military or have been over in the Middle East? This is a very important question because I am convinced that this cancer has to do with an exposure to a certain type of metal that was used in the Middle East. I will pray for your father, you, and other family members. Please reply!

    Cynthia
  • cynthia75
    cynthia75 Member Posts: 4
    #7
    sbsundevil said:

    My prayers are with you
    I just found this website. I actually lost my father in 1976 from adult Rhabdomyosarcoma. At that time he was one of a handful of documented adults to ever have this disease. The treatments back then were not what they are now. My prayers go out to your father and the entire family.

    Your father
    I am so sorry to hear about your father. My daughter's dad has rhabdomyosarcoma as well. Stage 4. I do have a question, has your father ever served in the Military or have been over in the Middle East? I am convinced that this cancer has to do with an exposure to a certain type of metal that was used in the Middle East. Please reply!

    Cynthia
  • chopstix04
    chopstix04 Member Posts: 1
    #8
    Rhabdo patient
    Hey, I'm jinny from the philippines.. i read your post about your dad having rhabdo and i'm glad he's cancer free. I'm a medical student and we usually have clinical pathological conferences in school about patients. our case is that of a 47 y/o male with a right gluteal mass which was resected. he had rhabdomyosarcoma and i recently found out that it was a rare cancer and that limb amputation was necessary. in the philippines where people are poor, this man-- this patient of ours does not have money for chemo and is in the charity ward. we're not sure if he will survive. always be thankful for what you have because you're luckier than most people. take care
  • cyuno
    cyuno Member Posts: 1
    #9
    DanielleN3 said:

    Update
    Received fantastic news today regarding my fathers cancer. He had a CT scan at the beginning of the week and the results show that he doesn't have any cancer cells left in his body. After over a year of chemo, some radiation and 2 surgeries he is finally on his last week on chemo. Finally done on Friday!! For an adult with stage 4 rhabdomyosarcoma this is a huge feat. I am so thankful for the doctors and nurses at Mass General Hospital in Boston.

    Mass General Information
    Hi Danielle:

    Our son is 20 and was diagnosed with stage 4 rhabdomyosarcoma. What is the name of the doctor or doctors at Mass General in Boston? We are here in California. They are giving him a 30% chance of making it, and we are looking for resources.

    Thanks!

    Regards,
    cyuno
  • John4138
    John4138 Member Posts: 1
    #10
    cyuno said:

    Mass General Information
    Hi Danielle:

    Our son is 20 and was diagnosed with stage 4 rhabdomyosarcoma. What is the name of the doctor or doctors at Mass General in Boston? We are here in California. They are giving him a 30% chance of making it, and we are looking for resources.

    Thanks!

    Regards,
    cyuno

    Stage 4 son Louis
    Our son Louis (21yrs) was diagnosed with stage 4 rhadomysarcoma alveolar on memorial day 2012. Started clinical trial with study drug ICM-A12 on 6-8-12. The tumor was 6cm wide and ran from his neck to his pelvis, including shoots across back of lungs and over heart. The week 5 PET scans showed the tumor gone (a mirical), but as we all know the cancer is not. It's 7-21-12 today and all we do is pray. Treatment is at Wilmot Cancer Center, University of Rochester (ny). Anyone reading this that is similarly situated, I send love to the n-th degree because we are stricken. This is the first time he has been sick with anything. No family history of cancer of any sort. To those parents like us, please do not blame yourselves. To those children, they have not failed in any degree. Peace.

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