Alveolar Rhabdomyosarcoma Stage IV

AOZ
AOZ Member Posts: 1 Member
edited August 2011 in Sarcoma #1
My son was diagnosed with Stage IV Alveolar Rhabdo in June of 2008 when he was 15. It was spread throughout his trunk, and they were never certain of the location of the primary tumor. Had spread to liver, and there were some cells found in the lungs. He underwent 52 weeks of chemo (five or six different chemos, in "compressed" fashion). Two series of radiation treatments - one to his abdominal area (six weeks) early on, and a two or three week series to his lungs. Chances were not good, but the doctor did say he wanted to go for a cure when we asked him. I didn't want to know the statistics at the time. Took me a while to have the courage to look at the numbers. The treatments were grueling, but my son sustained a positive attitude. Today is his 19th birthday. He has been officially cancer free for two years at this point. For everyone out there facing this diagnosis, know that there is reason for hope!!!

Comments

  • Ninappn
    Ninappn Member Posts: 9
    #2
    Sarcoma 4
    Hi there,

    My sister, age 32, has liposacoma stage 4 and after a major surgery the cancer has grown so fast spreading to the spinal bones. Ur son s story is very inspiring and gives hope. Unfortunately my sister has given up. She lost faith, hope......

    Thanks for sharing. Blessings to ur son.

    Nina
  • sle
    sle Member Posts: 1
    #3
    My daughter was diagnosed
    My daughter was diagnosed with Stage IV Alveolar Rabdo in March 2009 when she was 18. She completed the 54 weeks of treatment in May. She just had her 6 month scan and is cancer free! Everyone other child I know with this is not doing well so I was searching for some positive stories and was very happy to read yours! Thank you AOZ for posing good news!!!
  • diamond24
    diamond24 Member Posts: 5
    #4
    so happy to see the succes stories
    Rhabdo is a tough cancer to control but it is wonderful to see all the survivors! A positive attitude is everything, especially when the doctors do not give much hope.
    My son had orbital rhabdo at age 5, he relapsed in the same eye at age 12. Both times he had a large amount of radiation and chemo. He truly did great considering the side effects. Unfortunately, this past April 2011, he was diagnosed with a brain tumor by his thalamus. This part of the brain was exposed to the radiation he received in 2000 and again in 2007. He had brain surgery to remove tumor, another 6.5 weeks of proton radiation and is currently on temodar chemotherapy. 3 cancers by the age of 17 is too much for anyone but he is a miracle child and we feel blessed. It is difficult again being on chemo, but he looks great and his last scan was stable. Now we are watching the rhabdo tumor, which has been gone for about 4 years and the brain tumor which is a anaplastic astrocytoma III. The good news is that we caught the brain tumor early as he was still getting MRI for the orbit and brain every 3 months. This is key to any prognosis. Prayers, attitude, family, friends and knowing you can get through anything is also the key. I wish the best for everyone.
  • alcitarellaiii
    alcitarellaiii Member Posts: 3
    #5
    Treatment facility
    That's great news about your son. Reading stories such as yours provides hope. My brother 26 was diagnosed with the same thing stage IV in January. The doctor has nothing good to say about the outcome, and cites his age as a disadvantage. He was told of a year long chemo treatment most likely similar to your son's. Any suggestions are appreciated. Thank you.
  • alcitarellaiii
    alcitarellaiii Member Posts: 3
    #6
    sle said:

    My daughter was diagnosed
    My daughter was diagnosed with Stage IV Alveolar Rabdo in March 2009 when she was 18. She completed the 54 weeks of treatment in May. She just had her 6 month scan and is cancer free! Everyone other child I know with this is not doing well so I was searching for some positive stories and was very happy to read yours! Thank you AOZ for posing good news!!!

    Treatment location
    That's great news about your son. Reading stories such as yours provides hope. My brother 26 was diagnosed with the same thing stage IV in January. The doctor has nothing good to say about the outcome, and cites his age as a disadvantage. He was told of a year long chemo treatment most likely similar to your son's. Any suggestions are appreciated. Thank you.
  • alcitarellaiii
    alcitarellaiii Member Posts: 3
    #7
    treatment location
    That's great news about your son. Reading stories such as yours provides hope. My brother 26 was diagnosed with the same thing stage IV in January. The doctor has nothing good to say about the outcome, and cites his age as a disadvantage. He was told of a year long chemo treatment most likely similar to your son's. Any suggestions are appreciated. Thank you.
  • love4sierra
    love4sierra Member Posts: 2
    #8
    sle said:

    My daughter was diagnosed
    My daughter was diagnosed with Stage IV Alveolar Rabdo in March 2009 when she was 18. She completed the 54 weeks of treatment in May. She just had her 6 month scan and is cancer free! Everyone other child I know with this is not doing well so I was searching for some positive stories and was very happy to read yours! Thank you AOZ for posing good news!!!

    I, too, am wondering where
    I, too, am wondering where your got her treatments. My 22 year old daughter was recently diagnosed with alveolar rhabdomyosarcoma. I am glad yours is doing well.
  • ANNMARIEWEIN
    ANNMARIEWEIN Member Posts: 4
    #9
    ALVEOLAR RHABDOMYOSARCOMA STAGE lV
    My Niece, who is 17 was just diagnosed with this type of cancer. it was found in the bone marrow. She just started treatment in Jacksonville, Fl. We would love to hear anyway you can help us, with tolerating treatments, and anything you think can help. She has started chemo. and we have a long road ahead. Thanks, Ann Marie
  • ANNMARIEWEIN
    ANNMARIEWEIN Member Posts: 4
    #10
    sle said:

    My daughter was diagnosed
    My daughter was diagnosed with Stage IV Alveolar Rabdo in March 2009 when she was 18. She completed the 54 weeks of treatment in May. She just had her 6 month scan and is cancer free! Everyone other child I know with this is not doing well so I was searching for some positive stories and was very happy to read yours! Thank you AOZ for posing good news!!!

    ALVEOLAR RHABDOMYOSARCOMA STAGE lV
    My niece is 17, almost 18, just started what is supposed to be a year treatment.
    Was your's daughter in the marrow? Also how is she now?
  • ANNMARIEWEIN
    ANNMARIEWEIN Member Posts: 4
    #11
    ALVEOLAR RHABDOMYOSARCOMA STAGE lV
    So happy to hear this news. Where was your son treated. My niece just started Chemo and has a year ahead with radiation too. The first round was a rough one. Ann
  • climarm
    climarm Member Posts: 2
    #12
    ARMS relapsed is clinical trial an option?

    Hi, I am new on this network's discussion board and I hope by sending my thoughts here would enlighten me. 

     

    My daughter was diagnosed Oct 2011 with alveolar Rhabdo on her left maxilla/sinus part of her face.  She had VAC for 9 months and 30 sessions of radio therapy.

     

    After 5 months in remission, last week of Dec 2012, another lump has grown in her lower neck and a mass on the outer part of her left lung she is now stage 4.

     

     

     

    We are from New Zealand and our medical team is from the best oncology hospital in NZ.  My daughter's oncologist said that when ARMS relapsed in a year time after finishing the treatment, the chances of curing it is ver very low.  THe treatment option is to have the clinical trial by the Children's Oncology Group (COG).  Have you heard anyone about this? This study involves more than 200 hospital in NOrth America, Australia, NZ and Europe.  We are so confused to decide knowing that the drugs involved are not licensed yet by the FDA and have so many severe effects.  My daughter does not want to undergo chemo treatment anymore.  Her VAC treatment had so much bad effects like losing temporarily her mobility.  If the chemo is not the answer why should she take it anyway?

     

     

     

    Until now we can't accept why she have this disease...  Causes are unknown and very tough to beat.  Please help me if you could provide me information further about the clinical trial.   My 13 yr old daughter would just want to enjoy her life till her day comes.  We are considering just to have the radio therapy and maybe take some supplements, herbals or natural remedies as an alternative to prolong her life.

     

     

     

     

     

     

    Thanks in advance.

     

    Rose

     

    email: roseclims@yahoo.com

  • khammond
    khammond Member Posts: 3
    #13
    You sons story does bring me

    Your sons story does bring me Hope!  My 7 yr old, precious niece was diagnosed in Feb.w/ Stage 4 alveolar rhabdomyosarcoma as well. They are at MD Anderson in Houston receiving treatments for 54 weeks.  hows your son doing?  Thank you.  Kelli Hammond in New Mexico

  • GF
    GF Member Posts: 1
    #14
    I have a relative wth stage 4

    I have a relative wth stage 4 RMS. If anyone has any advice I would appreciate it.

    Thank you

  • DPpower
    DPpower Member Posts: 1
    #15
    My 15 yr old son has just

    My 15 yr old son has just been diagnosed with4th stage metastasized ARMS. I was wondering if you could give me a update on your son? Is there anything you guys did other then the typical 54weeks and radiation?

  • Supertone
    Supertone Member Posts: 4 Member
    edited November 2016 #16
    DPpower said:

    My 15 yr old son has just

    My 15 yr old son has just been diagnosed with4th stage metastasized ARMS. I was wondering if you could give me a update on your son? Is there anything you guys did other then the typical 54weeks and radiation?

    ARMS comments - hope things are going well

    Hi,

    I am hoping and praying that your son is doing ok with all the treatments that he is or will be getting during his battle with ARMS.  My son too has been battling the "beast". He started in August of 2015, when he was 13, with Stage three in his right hand that spread to the lymph nodes at his elbow and arm pit with a small nodule in his right lung that didn't light up with PET scans.  He was on ARST0531 Reg. B for 43 weeks (VAC and VI) and 30 days of radiation for 45 minutes a day.  He was declared in remission June 2016 as there was NED.  He was just starting to get feeling back from the neropathy in his feet and looking forward to school and playing lacrosse and basketball, when we found a lump at the base of his bicep. This was on Labor Day weekend.  We made the call to his main oncologist and we went in for a doppler ultrasound MRI and full body PET/CT.  They decided to do an open biopsy to extract the newly found tumor, the area did light up BTW, only to find that ARMS had indeed recurred.  They also did a bone morrow biospy, which was clear and reinserted his power port that had been removed only one month prior. He just turned 15 in September and is now on Vinorelbine and Temsirolimus weekly infusions for 12 months and oral Cyclophosphamide every single day for a year. He just started radiation again for the next five weeks.  We are having him treated at John's Hopkin's in Baltimore, MD.  One of the cool thing they are doing to help them have ammunition in their back pocket is making a model from his tumor and attacking it with all kinds of drugs to see what controls or distroys it the best.   If you have any questions or just want to talk, let me know. 

  • donna1720
    donna1720 Member Posts: 7
    edited November 2016 #17
    Wow, congratulations!
     

    Wow, congratulations!

     

  • Kloc
    Kloc Member Posts: 1
    #18
    Supertone said:

    ARMS comments - hope things are going well

    Hi,

    I am hoping and praying that your son is doing ok with all the treatments that he is or will be getting during his battle with ARMS.  My son too has been battling the "beast". He started in August of 2015, when he was 13, with Stage three in his right hand that spread to the lymph nodes at his elbow and arm pit with a small nodule in his right lung that didn't light up with PET scans.  He was on ARST0531 Reg. B for 43 weeks (VAC and VI) and 30 days of radiation for 45 minutes a day.  He was declared in remission June 2016 as there was NED.  He was just starting to get feeling back from the neropathy in his feet and looking forward to school and playing lacrosse and basketball, when we found a lump at the base of his bicep. This was on Labor Day weekend.  We made the call to his main oncologist and we went in for a doppler ultrasound MRI and full body PET/CT.  They decided to do an open biopsy to extract the newly found tumor, the area did light up BTW, only to find that ARMS had indeed recurred.  They also did a bone morrow biospy, which was clear and reinserted his power port that had been removed only one month prior. He just turned 15 in September and is now on Vinorelbine and Temsirolimus weekly infusions for 12 months and oral Cyclophosphamide every single day for a year. He just started radiation again for the next five weeks.  We are having him treated at John's Hopkin's in Baltimore, MD.  One of the cool thing they are doing to help them have ammunition in their back pocket is making a model from his tumor and attacking it with all kinds of drugs to see what controls or distroys it the best.   If you have any questions or just want to talk, let me know. 

    Super tone, How is your son

    Super tone, How is your son doing?  My daughter is going through similar relapse treatment at CHOP.  The only difference is that the Cytoxin is not oral, it's IV.

     

  • Supertone
    Supertone Member Posts: 4 Member
    #19
    Kloc said:

    Super tone, How is your son

    Super tone, How is your son doing?  My daughter is going through similar relapse treatment at CHOP.  The only difference is that the Cytoxin is not oral, it's IV.

     

    hi Kloc

    Let me know if you want to talk... My son had a relapse after original treatment of ARST0531 VAC/VI for 43 week with 28 days of R/T for 45 miutes a day. He was in remission last June and had the 'beast' return in late August.  He is now "high" risk... My son, Will, started this mess when he was 13 and is now 15.  He is now on ARST0921 which continually bathes you with Cytoxan 50mg daily every day for a year along with Temsirolimus and Vinerolbine IV. with another 28 days of R/T.  The side effects are different from the first rounds of treatment but he's is good spirits.  We go for scans every two months to see what is going on.  The Oncologists took a tumor sample and did gene modling and found Will has the NMYC mutataion.  The NMYC protein is responsible for making a great many parts of you and cannot be attacked from the top, so they are plugging in different pathways to see what will fix this issue.  What happens is when cells devide to create new cells the NMYC protein is responsible for bring the cells back together after they devide.  In Will's case the chromosomes 1 and 13 flip creating the 'beast'  Until they find a way to fix this, I'm thinking they are just treating the water and have'nt found the fix for the leaking dam yet.

    Best Always, hoping your daughter is doing well...

    Tony and family

  • Cardier
    Cardier Member Posts: 2
    #20
    Rhabdomyosarcoma

    Hi everyone I just found this site searching the web for patients or survivors of this type of cancer my son was 14 when they diagnose him with rhabdomyosarcoma on November 2016 and they Treated him with radiation for 30 days and chemotherapy for one year everythung was looking good he was almost finish with the treatment when he started to complain about Weakness in his legs so the doctors got a little devoid and started to do new ct scans, mri, took sample from his spinal fluid and they found out that the cancer was back or that the cancer in his spinal cord never really got the medicine in there and the cancer cells were hiding there and soon after that he became really sick the tumor had spread to his brain so now he has a central nervous system relapse and they don’t give us too much hope that he will survive I would like to know if you or somebody you know went trough something like this , what treatment did they used did they took natural supplements we are desperately looking for other medicines , trial clinics anything that would give my child another opportunity to Try and beat this awful and cruel disease , thank you in advance 

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