rhabdomyosarcoma survivor

PaulLD said:

rhabdomyosarcoma survivor
Hi,

We have recently had the news that a friend of ours has been diagnosed with Rhabdo (she is also 5 years old).

Your comment is very promising. Can I ask is there anything you feel friends could do to help apart from just "being there".

I appreciate any help or advice you can offer so we can help and support our friends as much as possible.

so amongts the families friends to sit - the way it was for us was a wk of chemo then home then spike a temp & back to hosp we had to go often in the middle of night w/o advanced noticed -like on call baby sitter do not take lots of food to hosp room b/c child wants to eat it too but might not keep it down chemo makes u nauseus /I had a lot of my friends & I know they meant well but they would ask ' do u think Sarah going to die from this cancer?' Please never ask that b/c really it is at the top of parents mind 24/7 Sarah cancer tumor gone in3 mo we had her for 22 yrs more so no one knows let parents know as young as child is to stay with child in hosp the whole time they r in get them some big spiral notebooks & pens pencils so parents can write down what med child is getting how much how often that & take it every time they know but they going to ask parent for history of child's illness that way parent can just rattle it off & parents need a break so another good thing is to go sit with child so parent can get out & recharge at the hosp we lived in a small town but someone made posters & set jars out
& for u wanting to know more about what to do just listen listen & love Julie

nitti910 said:

Hi,

 

My cousin has being diagonized with rhabdomyosarcoma October 2014. He has being going through chemo for last one year. His tumor shrinked a lot from initial diagonosis, until last night we found it has got bigger in size again. He is in Canada  rigth now. We are looking for a better place for his treatment. Please share your experience and suggestions on best treatment center.

 

Thank you,

Pretty.

 

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!

Hi Mobjack, thanks for telling ur story, my cousin 45 years old he is suffering from this rhabdomyosarcoma, now he is in stage 4 and all doctors are saying the chances for survival is very low , even doctors are saying no need to continue the chemo therapy as the cancer is growing and now it is affecting the kidney and lever and now he is in ICU, we hope he will get back soon from ICU, but I wanna know more from u regarding the study u went through and what was the treatment in more details ... ur feedback is really appreciated, thanks alot and thanks for all who shared their stories as it is really helpful and bring us hope

Judy512 said:

Similar timing with having rhabdo

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

 

 

 

Hello Judy,

My name is Angela, I am 48 and a 41yr survivor. I battled from ages 5-7yrs.  I had a tumor in my left nostril area and on my left thyroid gland. (I'm also new here on CSN so please bare with me. I dont know WHY it took me so long to even THINK to go to the internet for help.) I am also a retired Chef as of 2011 and that may play a role in why. I lived MOST of my life "on the fly". Lol But in all I've been thru, I too started noticing changes. More so with age but had NO IDEA I'd have to retire at the age of 41 because of side effects that were not mentioned along my lifes journey. I recall a social worker of some kind that would come visit our home, from Chicago, where I was born and had my treatments(I now reside in Michigan), about once every few yrs, as a study on how to better serve and treat suvivors of the cancer. They would ask questions about how I felt, they would do a minor chk up, paid my parents a fee and that was about it. We weren't told any specifics on what to do or NOT. The doctors only told my parents after they saw I was cancer free for a yr, is that I possibly wouldn't live past 14 and if I did, I wouldn't have any children.Well, I beat those odds in more ways than 2!!:-)  I am a mother of 3 BEAUTIFUL daughters and 7 FABULOUS Grands that I'm "Nana" to and couldn't be more happier they exsist!!:-) I could go on for DAYS about them but "we ain't got time for that" LOL....I'm just pretty much looking for someone that has had similar "post" issues. I suffer with chronic pain from head to toe. Rheumatoid Arthritis, Fibromialgia, severe scoliosis, bone and tissue issues, chronic allergies... just to name a few. As mentioned before, I've had a pretty active life and partly also because of an underactive or overactive thyroid(can't remember which). The 1st was removed from the left thyroid back in 74'....I'll now, I guess I'll let open the floor to you to ask any questions if you have any. I'm not too computer saavy so when I hve 1 of my grandsons show me, I'll load my picture. I'm using his laptop so I may not get back to you right away. I do want you to know that I'm glad you shared your story.