rhabdomyosarcoma survivor

dashw
dashw Member Posts: 1
edited March 2014 in Childhood Cancers #1
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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Comments

  • The easiest way to locate ...
    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.

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    Your CSN Staff
  • PaulLD
    PaulLD Member Posts: 1
    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.
  • Jim99zz
    Jim99zz Member Posts: 2
    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.

    rhabdomyosarcoma survivor
    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
    dlrobins Member Posts: 17
    Jim99zz said:

    rhabdomyosarcoma survivor
    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

    rhabdomyosarcoma survivor
    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.
  • dlrobins
    dlrobins Member Posts: 17
    Jim99zz said:

    rhabdomyosarcoma survivor
    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

    survivor
    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
  • stinkerthecat
    stinkerthecat Member Posts: 1
    Jim99zz said:

    rhabdomyosarcoma survivor
    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

    granddaughter with same sarmona as yours--please write back!
    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
    dlrobins Member Posts: 17

    granddaughter with same sarmona as yours--please write back!
    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

    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 [email protected] Your grandaughter is inour prayers. Love, Debbie and Kyle Robinson
  • InvictusAngel
    InvictusAngel Member Posts: 90
    dlrobins said:

    survivor
    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

    rhabodomyosarcoma survivor
    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
    dlrobins Member Posts: 17

    rhabodomyosarcoma survivor
    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

    Rhabdo
    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. [email protected] 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
  • motbzaz
    motbzaz Member Posts: 1
    Jim99zz said:

    rhabdomyosarcoma survivor
    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

    Thank You for sharing Jim
    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.
    Tom C. Member Posts: 11
    dlrobins said:

    rhabdomyosarcoma survivor
    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.

    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.
  • Tom C.
    Tom C. Member Posts: 11
    Jim99zz said:

    rhabdomyosarcoma survivor
    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

    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.
  • dlrobins
    dlrobins Member Posts: 17
    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.

    Love the Survivor Stories
    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
  • Deli4gs
    Deli4gs Member Posts: 9
    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.

    thank you for your uplifting story
    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
    amybrook Member Posts: 3
    Deli4gs said:

    thank you for your uplifting story
    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

    I am new to this site and
    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
    Byrd1313 Member Posts: 2
    amybrook said:

    I am new to this site and
    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.

    Survivor
    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!
  • InvictusAngel
    InvictusAngel Member Posts: 90
    dlrobins said:

    Love the Survivor Stories
    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

    Debbie
    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
  • ty
    ty Member Posts: 2
    Byrd1313 said:

    Survivor
    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!

    rhabdo
    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.
  • martynkatie1
    martynkatie1 Member Posts: 2
    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
  • JAMES66
    JAMES66 Member Posts: 2
    Jim99zz said:

    rhabdomyosarcoma survivor
    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

    RHABDOMYOSARCOMA SURVIVOR
    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