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rhabdomyosarcoma survivor

dashw
Posts: 1
Joined: Nov 2007

My 5 year old daughter was diagnosed with rhabdomyosarcoma at the age of 3. She is now 16 months off treatment and is doing well. She is now on 4 monthly scans. I would love to connect with anyone who has been through this or help support anyone who is currently going through it.

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Your CSN Staff
Posts: 200
Joined: May 2008

Dear dashw,

The easiest way to locate other CSN members with similar experiences is to type keywords (such as "childhood cancer," "rhabdomyosarcoma," etc.) on the search bar at the top of the home page. You can refine your search by clicking on the “Advance search” link listed underneath the search field. The major categories of content on CSN are blogs, discussion boards, personal pages, etc. For example, if you are looking for a specific posting on a discussion board, you can limit your search to discussion boards only by clicking on the "discussion" and "advanced search" button at the bottom of the "advanced search" box. Remember that you must be logged on if you want to post anything on a discussion boards, view personal pages, use the chat room, etc.

Cordially,
Your CSN Staff

PaulLD
Posts: 1
Joined: Jan 2009

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.

Jim99zz
Posts: 1
Joined: Oct 2009

Hi,
I just found this support network and thought I would send a message of support.
I am a 25 year survivor of rhabdomyosarcoma. I was 22 when diagnosed. I'm 47 now.
I had 2 surgeries (1 very major), 12 months of chemo and 6 weeks of radiation.
I am very healthy and have been since my treatment concluded. I have 2 children aged 6 & 8.
I wish the best for your loved ones who are battling this cancer.
Jim

dlrobins
Posts: 17
Joined: Sep 2009

Jim, Thank you for finding the support network and posting. Your message was a becon of hope for my son Kyle and I. Kyle (age 21) was diagnosed with ERMS in July, and has been on chemo since August. Recently he began radiation, and between both, the tumor in his neck has reduced significantly. There are not to many adults out there with rhabdo,and so when we find a success story we celebrate. Thank you, Debbie * Would love to communicate with you further.

Tom C.
Posts: 11
Joined: Dec 2009

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.

dlrobins
Posts: 17
Joined: Sep 2009

Jim99, Would love for my son Kyle, now age 22 to email with you. Ky was diagnosed this past July, and is currently undergoing treatment. More rhabdo survivors need to post their stories. You are an inspiration for those who are fighting the battle. Debbie

InvictusAngel's picture
InvictusAngel
Posts: 93
Joined: Nov 2009

Hi I have posted on the emotional support board didnt even think til now to check the kids cancer part dont know why not since was told thats mostly who is found with this just been a bit hard for me to wrap my brain around being 32 single mom and diagnosed with what they call a kids cancer. I was diagnosed in Sept with rhabdomyosarcoma cancer cervical and endometrial uterian I have had 4 surgeries since and started chemo this week looking at 44 weeks of chemo ahead of me... it would be great to connect with some ppl who have been through this or currently going through treatment support system here is very slim for me personally and the chatroom and these boards are a God send from feeling alone.Thanks Jenn

dlrobins
Posts: 17
Joined: Sep 2009

Jenn, You are not alone. Although it is my son who is being treated for rhabdo, I feel every treatment with him. Kyle is 22 and was diagnosed in July of 09. His was in the neck, with a tumor the size of a fist before treatment began. Presently he has finished 28/28 treatments of radiation, and 6 cycles of chemo. He has credit for 2 cycles of VAC before we had to switch treatments, but now has 6 cycles of VDC and IE left to go. The tumor has responded well and can no longer be felt. Dr.s will reimage after several more rounds of chemo to assure no cancer cells. Keep positive... I know it is hard, but believe that there are better days ahead.Please feel free to email me if you would like to chat. dlrobinson1004@gmail.com God bless you, although this is a rare disease, it does strike adults as well as children. Hang in there your not alone. Love, Debbie

stinkerthecat
Posts: 1
Joined: Nov 2009

We have a 20 year old granddaughter who was recently diagnosed with rhabdomyia sarcoma---she is taking chemo at barnes jewish in st louis and we need all the support we can get---hers started in pelvic area and she has in her tongue and spine---please write back--thanks

dlrobins
Posts: 17
Joined: Sep 2009

Read your post today. I don't go on very much... Your granddaughter is very close to my son Kyle's age. I am so sorry for this diagnosis, but one thing cancer cannot take from us is HOPE. Would love to communicate with you if you feel comfortable. My email is dlrobinson1004@gmail.com Your grandaughter is inour prayers. Love, Debbie and Kyle Robinson

motbzaz
Posts: 1
Joined: Jan 2010

Your words are very encouraging...thank you for posting. It means so much to those who have been fighting this cancer that there really are people out there that are living a future and a life well beyond the treatment. God Bless.

Tom C.
Posts: 11
Joined: Dec 2009

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.

dlrobins
Posts: 17
Joined: Sep 2009

Tom, Thank you for posting... it is always great to hear about survivors of cancer, but most especially rhabdo. Kyle is doing well... has 4 treatments left. Reimage in Jan showed a 2.6cm nodule left. Considering what he started with, we are overjoyed with the progress. Will continue to battle what's left. The treatment is aggressive, has included 5 chemo drugs as well as radiation. He is a warrior though, and we are determined that he like yourself will be posting on this site in 35 years to come. You are so right about diet and fluids. With radiation he lost 30+ pounds, but his appetite has come back and he is putting weight on again. Would like to hear more about the long term affects you have experienced from the radiation and chemo, as Kyle is only 22 with many years ahead of him. Thank you so much for taking the time to post. Debbie and Kyle

InvictusAngel's picture
InvictusAngel
Posts: 93
Joined: Nov 2009

First I wanna say I am so so sorry I dont know if you posted somewhere else on the boards or not about Kyle's passing away on March 23rd 2010 my heart is breaking for you and your family, and for Kyle.. I seen an email that came to my phone from the rhabdo site, I dont know how to contact you on there but just wanted to say we are here for you!
Jenn
fellow rhabdo warrior

R.I.P Kyle

Deli4gs
Posts: 9
Joined: Jan 2010

Tom I now know there are several types of rhabdo. Alveolar rhabdo, I now realized is very aggressive and prognosis is bleak. The young girl I know was diagnosed at age 15 so I am thinking your rhabdo may be very similar to hers since you were diagnosed at around the same age. Because you are here to share your story, that family is hopeful. Could you possibly provide more information about your journey?

Thank you,
Jackie

amybrook
Posts: 3
Joined: Feb 2010

I am new to this site and not really sure if I can be of any help but... if I help just one person I feel like my cnacer was not in vain. I was diagnosed with embroinal (sp?) Rhabdo when I was ten. If was located at the base of my brain in my left jaw and sinus area. I went into the dr on a monday for some minor swelling. They said I had an infection and sent me home. I went back on Thursday and they diagnosed me that day. They said the tumor had grown from the size of a grape on Monday to the size of a grapefruit on Thursday. They gave me six weeks to live w/o treatment. They told my parents even with the tx the outcome was bleak. I received the max amout of radiation and chemo for two years. I am 33! I try to go up to the hospital and talk to kids who are going through cancer and let them know they can't give up, they have to fight it. They can't feel sorry for themselves and just give in even though they want to sometimes. They have come so far since I was sick and the treatments and options for de bulking the tumors are so much better than before. They laugh at the hospital and say I was a guinnea pig but b/c of me kids today don't have to go through quite as much and that really makes me feel like I was there for a reason and the pain and suffering all had a purpose. They also told me I would never have kids ... I have three amazing beautifull boys. There is hope, and lots of it. Never give in and never give up are the best words for any one any age going through cancer. You always have to look ahead at the people who are fighting with you and all the love and hope you have to spread in your future.

Byrd1313's picture
Byrd1313
Posts: 2
Joined: Feb 2010

I, too am I survivor. I was diagnosed at 10, with rhabdomyosarcoma and had a tumor in my right sinuses. I was given a 20% chance of survival and am still ticking 20 years later. I do have other health issues resulting from the chemo and radiation, but nonetheless, I am here. As every one as said, keep fighting!

ty
Posts: 2
Joined: May 2010

Hi Byrd Just reading all the comments on this site. My grand daughter (who I raise) was just diagnosed with alveolar rhabdo in January. She was 15 and just turned 16. She has finished 29 radiation treatments and is on week 15 of 42 very harsh chemo treatments. It has been hell on her. Her body is ravaged and she is so very weak. Your story gives me hope. Her tumor was in her sinus cavity, size of a golf ball and pushed on her right optic nerve leaving her blind in her right eye. She has been through so much already and we have such a long way yet to go.

ChildRhabdo
Posts: 5
Joined: Oct 2012

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 of it. Unfortunately our society tends to focus on negatives and the sad stories tend to make the news and they receive more attention. So thank you again!!

khammond
Posts: 3
Joined: Jul 2013

i would love to talk to you. my email is kellikucelhammond@hotmail.com

ChildRhabdo
Posts: 5
Joined: Oct 2012

I just want to take the time to say 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. You all are inspiring to us going through this. 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 and the sad stories tend to make the news and they receive more attention.

JAMES66
Posts: 2
Joined: Sep 2010

Hi, 43 year survivor I had 3 surgeries in 1966 the last removing my eye.Chemo Radiation
at age 6, M.D. Anderson Houston TX I was given two week to live at the time I went in and
50%-50% after surgeries and treatment. I will be 50 on my next birthday and I have been married for 26 years with 4 children. Now I am looking forward to retirement and time with my grandchildren.
DON'T EVER GIVE UP HOPE.
God is the creator of the universe and you can be healed.
James

ChildRhabdo
Posts: 5
Joined: Oct 2012

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 and the sad stories tend to make the news and they receive more attention.

ChildRhabdo
Posts: 5
Joined: Oct 2012

I just want to take the time to say 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. You all are inspiring to us going through this. 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 and the sad stories tend to make the news and they receive more attention. So thank you again.

martynkatie1
Posts: 2
Joined: May 2010

Alesia Shute is a childhood cancer survivor and wrote her story. Check out her website because the two of you might be able to help each other. www.everythingsokaybook.com

janetp1980
Posts: 2
Joined: May 2012

My grandson was recently - last week- diagnosed with rhabdomyosarcoma. He has had his first chemo. It is supposed to be a 42 week treatment plan. How was your daughter during this? How is she now? Does she do all the activities like her playmates? So many questions, I am sorry. We just want to know as much about what to expect as we can.

Ps34
Posts: 5
Joined: Mar 2013

Hi Janetp1980: I saw your grandson was diagnosed with rhabdo in May 2012.  How old is he and how is he doing now? Where was his located? Did he have radiation? My 12 year old was diagnosed in Oct 2012 and I am looking for as much information as I can find from people who are "in it to win it!" Thanks

Rhabdogirl24
Posts: 4
Joined: Jul 2012

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".

ChildRhabdo
Posts: 5
Joined: Oct 2012

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!

POS
Posts: 1
Joined: Feb 2013

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.

 

Ps34
Posts: 5
Joined: Mar 2013

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

CateL
Posts: 2
Joined: Mar 2013

Hi, my 16 yo daughter was diagnosed with orbital rhabdo in 11/2012.  She had surgery immediately and then began chemo 2 weeks later.  She is still undergoing chemo and now also daily radiation treatments.  That is a long haul you are in for.  I am happy to help in any way.  My daughter has been thru hell with the chemo side effects---her onc doc says she has never had a patient have such a hard time, side effect-wise with the chemo before.  You name the side effect, she had it.    God bless you...Cate

 

khammond
Posts: 3
Joined: Jul 2013

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

Mobjack's picture
Mobjack
Posts: 6
Joined: Jun 2013

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!

davidthal
Posts: 1
Joined: Jun 2014

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

CateL
Posts: 2
Joined: Mar 2013

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?  

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