Rhabdomyosarcoma Survivors

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  • irishfoley
    irishfoley Member Posts: 6
    edited May 2017 #22
    Embryonal Rhabdomyosarcoma of the Cervical Muscle

    I haven't been on this site for a while but thought I would try to respond to Mobjak.  I am a 56 year old female who was diagnosed at the age of 44 with Embryonal Rhabdomyosarcoma.  I had surgery, chemotherapy and radiation and I survived. I have also had many side effects of treatment and it is increasingly worse. I am also disabled due to the effects of successful cancer treatment.  It has been a difficult road but I am very fortunate to have survived. I was the 5th woman in the world over 40 to have Rhabdo in my cervical muscle. If anyone wishes to share or get insight into what lies ahead, please feel free to contact me.  God bless all of us! 

     

  • irishfoley
    irishfoley Member Posts: 6
    edited May 2017 #23
    Mobjack said:

    Living with the consequences of treatment

    I was diagnosed in '74, although the cancer was not in the same area as yours. I've had a few sporadic problems over the years, but now, at age 51, those problems have become so frequent and severe, that I have had to stop working.  I'd be very interested to know what kinds of problems other survivors are experiencing, and perhaps swap stories of things we have each found helpful.  This site is a bit confusing to me, as it seems to be all over the place, and for the short time that I have been using this site, no one has ever responded to my replies or posts.  I will shoot you an email, as your post is about the most recent I can find.

    Living with the consequences of treatment

    Hi Mobjack,

    If you are still around and wish to talk please contact me at irishfoley@cox.net.  I am 56 now and have been cancer free since 2006. I too, have suffered some severe side effects but am here to speak about them so that makes us both very lucky. Take care.

     

  • irishfoley
    irishfoley Member Posts: 6
    #24
    Heather Ford said:

    Rhabdomyosarcoma of sternocleidomastoid muscle in neck

    I realize your post is 2 years old, but I am a long term survivor like you.  My rhabdomyosarcoma tumor was located in my neck and found at age 8 weeks back in 1973.  I am running into some problems now related to my surgery (they had to remove the entire sternocleidomastoid muscle on one side of my neck, which is causing me to have a fair amount of pain now as I start to age), combined with a lot of muscle atrophy in the areas where I had radiation.  I have found that with regular weight lifting that I am able to regain some of the atrophied muscle, but within 3-4 days of missing a workout I rapidly lose muscle mass again.  I have resigned myself to having to work out at least every other day to stay pain free, but I suppose there are worse activities I could have to do!  At least it keeps the rest of me in shape!

    Long Term survivor

    Hi Heather,

    If you ever wish to talk you can reach me at irishfoley@cox.net. I was diagnosed at age 44 and am now 56. I was a rarity at my age as were you.  Hope all is well.  Contact if you wish to. Ellie

  • blastD
    blastD Member Posts: 1
    #25
    irishfoley said:

    Living with the consequences of treatment

    Hi Mobjack,

    If you are still around and wish to talk please contact me at irishfoley@cox.net.  I am 56 now and have been cancer free since 2006. I too, have suffered some severe side effects but am here to speak about them so that makes us both very lucky. Take care.

     

    Hi

    Hi Mobjack,

    I found your reply on the CSN board, I was diagnosed with a nasal Rhabdomyosarcoma earlier this year. After 4 rounds of chemo MRA showed the tumor was completely gone, ENT surgeon confirmed there was no trace and the area inside my nose where the tumor was is healed. The oncologist wants to continue a pretty long schedule of treatment, but he has no basis to decide how much enough is enough, as you state I am concerned both for any reoccurrence but also for the considerably high risks of the treatment itself. I made a decision based on my faith to stop all treatment and monitor closely. Would like to hear more about your experience and side effects you’ve dealt with.

     

  • Aruch
    Aruch Member Posts: 1
    #26
    Sister with ARMS

    My sister was diagnosed with stage IV ARMS in January. Doctors are saying survival is not likely but we are not giving up hope. Is anyone on here a stage IV survivor? Has anyone tried any alternative treatements?

  • Cardier
    Cardier Member Posts: 2
    #27
    rhabdogal05 said:

    Hi my name is Jessica and I may be a help to you or not. I have most certainly not been a survivor of rhabdo since the 70's or earlier because I am only 16. But I have been a survivor for 10, almost 11 years. I was diagnosed in 1992 when I was only 5 1/2. Ever since, I have been a survivor. You are free to email me. I too am kind of interested in finding rhabdo survivors becasue I know how rare rhabdomyosarcoma is.
    -airesgal787@aol.com

    Rhabdomyosarcoma

    Hi, did you ever had a relapse ?

    do you know what treatment they gave you?

    what stage was when they diagnosed you?

    im asking this because I have a son 15 and he was diagnosed last year and did treatment it towards the end of treatment he had a relapse and the doctors are not very optimistic about it thanks for any info that you can share with me 

  • Lotusgirl
    Lotusgirl Member Posts: 5
    edited January 2018 #28
    Cardier said:

    Rhabdomyosarcoma

    Hi, did you ever had a relapse ?

    do you know what treatment they gave you?

    what stage was when they diagnosed you?

    im asking this because I have a son 15 and he was diagnosed last year and did treatment it towards the end of treatment he had a relapse and the doctors are not very optimistic about it thanks for any info that you can share with me 

    Stage 4 Survivor

    Hello Cardier,

    My name is Ramona, ramona-r@comcast.net

    I was diagnosed with rhabdomyosarcoma stage 4 in 1972. I was given three months to live. I was 7 at the time of my diagnosis and had my 53rd birthday Tuesday.

    I was given very high doses of Vincristine, Cytoxan and Dactinomycin. They were cycled for a full 18 months. I also had the most amount of radiation that I could. My primary site was in my urinary bladder. 

    All my treatment was experimental. It was a ‘hail mary’ from the National Institute of Health. I had 27 surgeries between 1972 and 1992 related to my cancer. 

    I know that treatment and success can be site dependent. I would ask the doctors if your son has had a secondary site occurrence or an increase in his original tumor. Ask questions. Advocate.

    I have been there and my teen years were quite challenging. I am willing to help as I can. If your son would like to email me, he can. 

    Many blessings,

    Ramona

  • Lotusgirl
    Lotusgirl Member Posts: 5
    edited January 2018 #29
    Mobjack said:

    Illnesses brought on by treatment

    Hello anamazon,

    I realize I'm replying to a very old post, and you may never see this, but I'm gonna give it a shot.  I was diagnosed in '74, and the cancer was in the same area as yours. I've had a few sporadic problems over the years, but now, at age 51, those problems have become so frequent and severe, that I have had to stop working.  I'd be very interested to know what kinds of problems other survivors are experiencing, and perhaps swap stories of things we have each found helpful.  This site is a bit confusing to me, as it seems to be all over the place, and for the short time that I have been using this site, no one has ever responded to me replies or posts.  So I don't even know if my requests are going through.  If there is any staffer reading this, please advise. Thanks. 

    (I think I may repost this on a more general board...)

    Treatment Issues

    Hi Mobjack,

    I was diagnosed in 1972 at age 7. My primary site was my urinary bladder. I do have issues from my treatment. My kidneys, chronic pain issues, PTSD... and a few others. 

    Id be happy to discuss!

    I just joined the site and also find it a bit confusing, lol. 

    Thanks!

  • Lotusgirl
    Lotusgirl Member Posts: 5
    #30
    Ginachan said:

    I'm a ARMS survivor! I was
    I'm a ARMS survivor! I was first diagnosed in 2003 at the age of nineteen. I had a reocurrace in 2008 at the age of 24. It's tuff stuff, especially since it's a rare disease with it's own set of complications. We are a special group of people! At least, that's what I like to blieve!

    Survivors

    I agree! We are a special group of people who no-one seems to know about!

     

  • Lotusgirl
    Lotusgirl Member Posts: 5
    #31
    Aruch said:

    Sister with ARMS

    My sister was diagnosed with stage IV ARMS in January. Doctors are saying survival is not likely but we are not giving up hope. Is anyone on here a stage IV survivor? Has anyone tried any alternative treatements?

    Stage 4 Survivor

    Hi...

    I was diagnosed in 1972 and given three months to live with Stage IV rhabdo of the urinary bladder. I had my 53rd birthday on Tuesday. 

    My treatments were much longer than they seem to be today. All my treatment was experimental at the time. I know this disease is hard...I have gone through 27 surgeries between ‘72 and ‘92. It’s not been easy.

    If I can be of any help, please let me know.

    You can survive Stage IV!

     

  • Peter Hagan
    Peter Hagan Member Posts: 1
    #32
    1968 Rhabdo survivor

    Hi

    As a four-year old, I was diagnosed in April 1968 and underwent surgery on 1 May 1968 to remove my bladder and prostate.  Seven year of chemo and radiation therapy followed but I have remained cancer free ever since.  I was told I was the first child worldwide to survive this.  I'm approaching my 50 year surival anniversary and to mark the occassion I'm holding a fundraising trvia night and charity auction with proceeds going to the two institutions to which I owe my life - the Royal Children's Hospital, Melbourne and the Peter Macallum Cancer Centre.

    Survival rates are improving but we need more breakthroughs.

    Feel free to contact me at hagan.peter@gmail.com

    Cheers

    Peter

  • psrani18
    psrani18 Member Posts: 3
    #33
    Ginachan said:

    I'm a ARMS survivor! I was
    I'm a ARMS survivor! I was first diagnosed in 2003 at the age of nineteen. I had a reocurrace in 2008 at the age of 24. It's tuff stuff, especially since it's a rare disease with it's own set of complications. We are a special group of people! At least, that's what I like to blieve!

    RMS Sarcoma - Looking for support

    Hi Ginachen

    Hope we get a response back from you as my cousin recently started her treatment for RMS Sarcoma and we are looking for someone to connect with. Your words will inspire her more than ours at this point of time. We hope to give her more strength to fight back. She has got 2 beautiful kids.

     

    psrani8@gmail.com

     

  • psrani18
    psrani18 Member Posts: 3
    #34
    Aruch said:

    Sister with ARMS

    My sister was diagnosed with stage IV ARMS in January. Doctors are saying survival is not likely but we are not giving up hope. Is anyone on here a stage IV survivor? Has anyone tried any alternative treatements?

    Hi Aruch

    Hi Aruch

    Can we have an update on your sister please my cousin is undergoing the same now any hope please?

    Email me @ 318-780-5326

  • sreejit
    sreejit Member Posts: 2 Member
    #35
    Aruch said:

    Sister with ARMS

    My sister was diagnosed with stage IV ARMS in January. Doctors are saying survival is not likely but we are not giving up hope. Is anyone on here a stage IV survivor? Has anyone tried any alternative treatements?

    alveolar Rhabdomyosarcoma stage iv

    My wife is recently diagnosed for stage 4 aveolar rhabdomyosarcoma with bone marrow involvement and lymph nodes.

    Please let me know the treatment plan and experts where you are consulting.

    bksreejith@gmail.com

    I will be grateful for this 

     

  • lollipop2000
    lollipop2000 Member Posts: 4 Member
    #36

    I'm sorry this happened to all of us, but it makes me feel less alone to see how many people have had rhabdo <3

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