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Alveolar Rhabdomyosarcoma Stage IV

AOZ
Posts: 1
Joined: Aug 2011

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!!!

Ninappn
Posts: 13
Joined: Aug 2011

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
Posts: 1
Joined: Oct 2011

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!!!

alcitarellaiii
Posts: 3
Joined: Mar 2012

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
Posts: 2
Joined: Apr 2012

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
Posts: 4
Joined: Jun 2012

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?

diamond24
Posts: 5
Joined: Aug 2011

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
Posts: 3
Joined: Mar 2012

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
Posts: 3
Joined: Mar 2012

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.

ANNMARIEWEIN
Posts: 4
Joined: Jun 2012

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
Posts: 4
Joined: Jun 2012

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
Posts: 2
Joined: Jan 2013

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
Posts: 3
Joined: Jul 2013

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

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