rhabdomyosarcoma survivor

Rhabdogirl24 said:

I am a Rhabdo survivor! I
I am a Rhabdo survivor! I was diagnosed with stage two in my jaw when I was 17 years old. I had 35 rounds of radiation and 18 rounds of chemo to shrink the tumor. I still went to high school and tried to be as normal as possible. I am now 6 years cancer free!! Happily married and adopting our first child. I would love to also connect with every Rhabdo survivor I come across. I love sharing stories and talking "shop".

Tom C. said:

Same Here, Jim
I am a 35 year survivor of rhabdomyosarcoma. I was diagnosed at 17 and am now 52. I too am healthy.

Just as a point of reference as you too are a long term survivor, they are finding now that adult survivors of pediatric cancer treatments may experience other health problems due to types and treatment dosages administered back in the early 70's and 80's.

Studies have found that some drugs carry long term toxicity effects which could weaken the heart muscle or in the case of radiation, could lead to the growth of other tumors down the road. There is a study being conducted at Memorial Sloan Kettering Cancer Center in NY tracking such side effects in adults. Just something to keep in mind when you go for your next physical to mention to the doctor.

Great story you have. Continued good health to you.

Tom C.

ChildRhabdo said:

Thank you!
It is so encouraging to read stories like yours. My 2 year old is fighting this horrible disease. She is currently undergoing chemo, surgery in December followed by more chemo and radiation. Her total treatment averages 54 weeks. I thank God for people like you who take the time to share their success. This is what I need to focus on... that there is hope and people like you are the proof. Unfortunately our society tends to focus on negatives. Thank you again for sharing!

Hi,

My daughter was diagnosed at 2 years with Rhabdomyosarcoma under her eye socket.

She received 6 months of intensive chemo treatment and 30 days of radiation on the tumor.

It was incredibly rough on her but she made it and she has been healthy, happy, and the

greatest joy in my life. We just went to her annual follow up visit, she is now 10 years old

and no signs of any problems. Naturally I'll always be concerned of possible future

secondary cancers due to the treatments, but I just wanted to let you know that there is

light at the end of the tunnel with very happy endings.

ChildRhabdo said:

Thank you!
It is so encouraging to read stories like yours. My 2 year old is fighting this horrible disease. She is currently undergoing chemo, surgery in December followed by more chemo and radiation. Her total treatment averages 54 weeks. I thank God for people like you who take the time to share their success. This is what I need to focus on... that there is hope and people like you are the proof. Unfortunately our society tends to focus on negatives. Thank you again for sharing!

Hi, my 12 year old son was diagnosed with stage 4 rhabdo in October 2012. I am looking for anyone to talk with who is going thru what we are doing.  He has had 12 weeks of chemo, they just did surgery last week, now he is going to begin more weeks of chemo and radiation.  He total treatment protocol is 54 weeks like yours.  Maybe we could compare notes? Thanks

Rhabdogirl24 said:

I am a Rhabdo survivor! I
I am a Rhabdo survivor! I was diagnosed with stage two in my jaw when I was 17 years old. I had 35 rounds of radiation and 18 rounds of chemo to shrink the tumor. I still went to high school and tried to be as normal as possible. I am now 6 years cancer free!! Happily married and adopting our first child. I would love to also connect with every Rhabdo survivor I come across. I love sharing stories and talking "shop".

Hello survivor!

Good for you!!!!  You went thru so much!!!  My 16 yo has orbital rhabdo--having chemo and radiation now.   My daughter is not going to school---she has been soooo sick.  And, when she did try to go to school, she felt so "out of the loop" it was hard academically to be at school.  socially, it was really good for her to be at school.  This is a personal question that you certainly don't have to answer, but it is something I worry about for my daughter, did you have any permanent fertility issues secondary to your treatments?  

Ps34 said:

Rhabdo treatment

Hi, my 12 year old son was diagnosed with stage 4 rhabdo in October 2012. I am looking for anyone to talk with who is going thru what we are doing.  He has had 12 weeks of chemo, they just did surgery last week, now he is going to begin more weeks of chemo and radiation.  He total treatment protocol is 54 weeks like yours.  Maybe we could compare notes? Thanks

please email me kellikucelhammond@hotmail.com  my niece was diagnosed in Feb w/ Stage 4 rhabdo

Mobjack said:

Childhood Rhabdo Survivor Checking In

Hello Ps34, and others.  I too was diagnosed with stage 4 rhabdomyosarcoma when I was 12.  That was in 1976, and I will turn 52 this year, 2014.  I am new to this site, and new to the world of cancer survivors groups in general.  Once I was deemed to be cured of the cancer, and then had made it through a couple of big hurdles with abdominal adhesions just a couple of years later, I was ready to put the label of ‘the sick kid’ behind me for good.  So by the time I graduated high school, I felt like any normal college Freshman.  After having lived as a sick person for several years, I was anxious to put that part of my life into a little compartment and forget about it for a good, long while. 

  When I was first diagnosed, my parents were told there was little chance of me seeing my 13th birthday.  Very fortunately for me, there was a new and promising study being carried out at the Medical College of Virginia in Richmond, only an hour from my childhood home in Williamsburg!  After my parents decided their only choice was to enroll me in this study group, we all went into treatment with eyes wide open, knowing that there were no guarantees for a cure, and that the path of treatment was going to be challenging.  Obviously I survived, and I remember being told what to expect as my life progressed.   I have recollections (which my mother says she does not recall) of hearing doctors say at some later point in life, possible 15-20 years later, that a likely long-term result of my treatment might be a secondary cancer, brought on by the high doses of radiation that I received during my treatment, and that there may be some digestive problems due to the fact that my abdomen was the area that was irradiated, as well as the area where the major surgeries had taken place.  But as a young and seemingly healthy man of 19, that seemed indeed a lifetime away, and certainly not something to worry about at the time.  As much as I wanted to just be a "normal guy", I never took for granted the second chance I had been given, and I certainly lived most days from then on out as if they were my last. I had gained an innate understanding of the complexity and fragility of the human organism, and just how very much could go terribly wrong simply by living out our daily lives.

A little over a year ago, I was diagnosed with Chronic Radiation Enteritis.  The last year has been quite a challenge.  I am willing to go into detail with anyone interested; and by the same token, would be thrilled to hear from anyone else in a similar situation.  I have stories galore, and I love telling them! (I was a classroom teacher for 25 years)   I love to hear other's stories, or simply their experiences of the ups and downs of life after cancer, would love to compare notes, and have tried lots of different kinds of remedies and therapies as I have come across them, with varying levels of success.

As one of the other above comments also stated, I am not familiar enough with this overall sight to know exactly the best place to post this sort of info, or indeed if it is even appropriate for this sight.  But I imagine that it is, seeing as this seems to be a gathering place for people to offer support to one another, which would be the main purpose of my story-telling (besides a bit of comic-relief because I am a bit of a nut as I make my way through this crazy life, irrespective of my health conditions at any given time).   

I am replying to Ps34 because of the similarity of your son’s situation to my own, but perhaps a response from a staffer would also be appreciated, as it does not seem that this particular thread is accessed all that often.  Thanks in advance to any and all that read this and have suggestions!

Tom: I know it was a long time ago, but do you happen to know what your treatment was or what the current treatment is? A friend of our family is 16 and was diagnosed with stage 4 Aveolar Rhabdomyosarcoma and recently started chemo. Radiation is apparently coming soon, assuming she makes it far enough. She is already down to 100 lbs. Thanks.

- David T

Tom C. said:

Another Adult Survivor of Pediatric Rhabdomyosarcoma Out Here
I am 52 years old. When I was 17 I was diagnosed with rhabdomyosarcoma. I was given a 25% chance of survival by some of the best doctors in NY. Here I am alive and well 35 years later.

Debbie, let Kyle know that the road ahead may not always be smooth, but it is passable. Make sure he eats right and drinks plenty of liquids especially during chemo to flush it from his system. Staying away from crowds of people while on treatment may lesson the chance of him getting sick which could delay treatment, etc.

As with Jim's posting, there are many adults that are pediatric cancer survivors.

I wish Kyle the best.

Tom C.

Hi Tim,

I've been browsing this site for connections with childhood cancer survivors and those with ongoing heath issues that were a product of radiation treatment.

I too was diagnosed 38 years ago at 17.  My rhabdo covered the entire left side of my face and due to the nature of radiation in the 70s, I ended up with loss of sight in my left eye, loss of hearing in my left ear, permanent baldness on my left scalp, trismus and more.

I've had 20+ reconstructive surgeries, including a condylectomy to offer a larger opening in my mouth as my jaw was fused from radiation.  I consider myself a treatment warrior since I just keep moving on despite my changed face and facial paralysis.  None of this has interfered with my career or social life.  I've only encountered frustration since I was blindsighted by all the health issues that kept popping up & were never shared (or discussed as risk) when I was diagnosed.

I would be very interested to know how you fared with treatment and after-cancer quality-of-life issues.  I'm trying to compile best refererces for those I come in contact with.  You can visit my blog: judyryan.wordpress.com.

Thank you!

Judy

Hi I was 5 years old and diagnosed with rhabdomyosarcoma in muscles and tissue of my right eye.. I had to have my eye and eye muscles removed. As well as chemo and cobalt treatments... I had several reconstructive surgeries as a teen to rebuild my eye orbit... I have had no reoccurant cancer and am 51 years old now, have 3 healthy children and was married 24 years.. I live each day for the future and not what happened in the past... There is a brighter tomorrow for cancer patients of today, technology has changed so much and they are learning and gonna find a cure someday. 

Janelle