RHABDOMYOSARCOMA

13

Comments

  • irishellie
    irishellie Member Posts: 8
    #42
    Craig5810 said:

    Steve-
    Thank you so much for taking the time to post this article. I am a 26 year old male who lives life to the fullest and apparently one of the unluckiest people in the world. But that luck may be improving because by some sort of fate I found this article the same day you posted it. It gave hope! I have recently been diagnosed with the disease and it has infiltrated my bone marrow. My outlook is not good, but my desire to live is strong. Do you really think this doctor Baker is the best? I am willing to do whatever it takes to get the best treatment possible. I currently am going to Mass General Hospital in Boston and in the sarcoma sector. They say that Boston has the best doctors, but if this Baker is really a guru as you say... then I think it's worth taking a look at. I will call Matt tomorrow. What are your treatments? Thank you so much and my blessings are with you. Craig (603)318-5025

    Dana Farber has an EXCELLENT Sarcoma Clinic
    I was diagnosed with embryonal rhabdo almost 5 years ago and was sent to Dana Farber (Boston)just 3 days later. They are amazing and set my treatment plan in place. I rec'd the treatment in CT and have been 'cancer free' for 46 months. You really should contact them as you are in Boston already. Get lots of rest....drink lots of water and ask for prayers from all who know you. If I can help with any info...let me know. Ellie
  • positivemum01
    positivemum01 Member Posts: 2
    #43
    Linda_OH said:

    21 year old son with rhabdomyosarcoma
    I hope your sister is responding well to treatment. My 21 year old son was diagnosed with rhabdomyosarcoma in February 2008. The doctors have not always been clear but I believe his is embryonal. He underwent 6 rounds of chemo that were very difficult. A couple of months after chemo, the cancer showed on a CT scan so we were referred to another hospital. He has just completed 9 of the 12 cycles. He has had a much better quality of life during chemo this time; different drugs, different dosages, and different methods of coping. Additionally this time he will receive radiation. Good luck and best wishes to you and your sister.

    My son has Rhabdo,he is 6
    Hi Linda, It seems we have sons with the same cancer. Logan is now 6, but diagnosed in Jan when he was 5. The oncologist has never been clear exactly which strain it is. Only that it is definately NOT alvioli, and nor Embryonal! It is somewhere in between . I wish they would name it so that I could research it. I am going to ask for the pathology reports in our next meeting. I am starting to get more strength and confidence with this journey now, rather than being a mild, meek scared mum as I was at the beginning. That is probably text book I guess.

    Logan is on 54 weeks of treatment. Vinchristine, IE, VDC, I VAC. tHE WORKS. It is from an American study ARST0431. I am so glad that we are in 2010 and not 1975. The treatment seems agressive, but we are stage 4 so it has to be. I look forward to chatting to you if you have time. We are in for 5 nights of IE in Brisbane, Australia.
    Regards, Lisa
  • ty
    ty Member Posts: 2
    #44
    Craig5810 said:

    Steve-
    Thank you so much for taking the time to post this article. I am a 26 year old male who lives life to the fullest and apparently one of the unluckiest people in the world. But that luck may be improving because by some sort of fate I found this article the same day you posted it. It gave hope! I have recently been diagnosed with the disease and it has infiltrated my bone marrow. My outlook is not good, but my desire to live is strong. Do you really think this doctor Baker is the best? I am willing to do whatever it takes to get the best treatment possible. I currently am going to Mass General Hospital in Boston and in the sarcoma sector. They say that Boston has the best doctors, but if this Baker is really a guru as you say... then I think it's worth taking a look at. I will call Matt tomorrow. What are your treatments? Thank you so much and my blessings are with you. Craig (603)318-5025

    Alveolar Rhabdo
    Hi Craig, I am also new to the site. My 16 yr old granddaughter has just been diagnosed in January with Alveolar Rhabdo. She is being treated at Yale. We are happy so far with the team of doctors she has there. She just finished 29 treatements of radiation and is now in week 15 of chemo treatments. She has a 2nd evaluation tomorrow. Treatments have been very hard on her but we are pushing forward and staying positive. There is no doubt that this cancer is agressive. We have to fight it. We have too.. I wish you and all the people here on this site the best with your treatments. My grandaughters tumor was in ther sinus cavity pressing on her right optic nerve. She is now blind in her right eye.
    Six weeks into the treatement she had an evaluation and the tumor shrunk by 50 percent.
    We will see what tomorrow brings. My best to you.
  • gmarkuson
    gmarkuson Member Posts: 2
    #45
    ty said:

    Alveolar Rhabdo
    Hi Craig, I am also new to the site. My 16 yr old granddaughter has just been diagnosed in January with Alveolar Rhabdo. She is being treated at Yale. We are happy so far with the team of doctors she has there. She just finished 29 treatements of radiation and is now in week 15 of chemo treatments. She has a 2nd evaluation tomorrow. Treatments have been very hard on her but we are pushing forward and staying positive. There is no doubt that this cancer is agressive. We have to fight it. We have too.. I wish you and all the people here on this site the best with your treatments. My grandaughters tumor was in ther sinus cavity pressing on her right optic nerve. She is now blind in her right eye.
    Six weeks into the treatement she had an evaluation and the tumor shrunk by 50 percent.
    We will see what tomorrow brings. My best to you.

    alveolar rhabdo 9 yr. old daughter similar case to yours
    Hey Ty, i just joined this sight my 9 yr. old daughter was diagnosed a year ago with alveolar rhabdomysarcoma. We are being treated at UW-childrens hospital in Madison WI. We started off with 30 rounds of radiation and have now just finished chemo treatments after a year. Our daughters chemo was or is also in her Sinus Cavity and pressed on her right optic nerve. She is also blind in her right eye. Our first evaluation showed a 50 percent reduction in the tumor. How did your second evaluation go. We are on a 3-4 month break and currently discussing whether we can do a biopsy to see if their is still cancer in the tumor or not. She is doing great energy is back. Would be happy to discuss anything about the treatment or see if yours is similar or different. Best of luck to you. Hope to talk to you soon.

    sincerely Geoff
  • irishellie
    irishellie Member Posts: 8
    #46
    Tom C. said:

    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 35 years later.

    I was given chemo for just about two years in combination with radiation during the first four months of treatment. I graduated high school on time and commuted to college and earned my B.A. in four years like everyone else at that time.

    The point is, if I can do it, you can do it. When you first start it seems like there is no light at the end of the tunnel, but there will be. Take it one day at a time, one treatment at a time. Each treatment brings you closer to your last.

    Helpful tips I found: get plenty of rest and make sure you eat and drink even when you do not feel like it. Chemo will lower your resistance, so you must maintain your strength. Stay away from large crowds of people and do not be afraid to tell family and friends to respect what you are going through by staying away from you if they are sick.

    Good luck.

    Tom C.

    Learn from tips of survivors of Rhabdomyosarcoma
    Tom....I'm with you. Diagnosed 5 years ago with embryonal rhabdomyosarcoma I was also told 2 out of 10 survival rate and my response was,"why can't I be one of those 2?? I had 12 months of chemo, internal and external radiation as well as surgery. I got loads of rest and stayed hydrated all the time with lots of water. Eating 5 to 7 times a day of small meals like a piece of fruit with peanut butter, almonds, fresh fruit and vegetables etc. Staying hydrated enabled me to go thru 12 months of chemo without the need for a port. I've been done with treatment for 4 years and havn't had a reoccurence. The struggle to regain my strength and boost my immune system continues but it's all GOOD. Willing to receive emails from anyone who needs help or support.

    Ellie
    irishfoley@charter.net
  • ccford2
    ccford2 Member Posts: 1
    #47
    irishellie said:

    Dana Farber has an EXCELLENT Sarcoma Clinic
    I was diagnosed with embryonal rhabdo almost 5 years ago and was sent to Dana Farber (Boston)just 3 days later. They are amazing and set my treatment plan in place. I rec'd the treatment in CT and have been 'cancer free' for 46 months. You really should contact them as you are in Boston already. Get lots of rest....drink lots of water and ask for prayers from all who know you. If I can help with any info...let me know. Ellie

    Uterine Sarcoma
    Irish Ellie....My wife has just been diagnosed with uterine rhabdo and will be referred to Dana farber after her full hysterectomy on Monday. She is 67 and in otherwise great health. I am beside myself with fear and need to hear some encouraging words I just discovered this site and am encouraged by what you have to say. It seems that rhabdo in the uterus is extremely rare. Is there anyone out there who can share their experiences with me..?
  • wendybell
    wendybell Member Posts: 1
    #48
    mldresse said:

    HI,I was 24 and was diagnosed with Rhabdomyosarcoma I'll be 26 this June. I went through almost a year of treatment and I'm now in remission. I had stage 3 embryonal in my right cheek.

    question...
    on may 14th 2010 our 8 year old daughter was diagnosed with emb rms in her left cheek.....the pterygoid muscle and unfortunately extends up into her cranium. i am guessing if yours was in your cheek it was also the pterygoid muscle where it started. is that correct? what form of treatment were you given. how are doing? hope all is going well for you.
  • RayW
    RayW Member Posts: 1
    #49
    Tom C. said:

    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 35 years later.

    I was given chemo for just about two years in combination with radiation during the first four months of treatment. I graduated high school on time and commuted to college and earned my B.A. in four years like everyone else at that time.

    The point is, if I can do it, you can do it. When you first start it seems like there is no light at the end of the tunnel, but there will be. Take it one day at a time, one treatment at a time. Each treatment brings you closer to your last.

    Helpful tips I found: get plenty of rest and make sure you eat and drink even when you do not feel like it. Chemo will lower your resistance, so you must maintain your strength. Stay away from large crowds of people and do not be afraid to tell family and friends to respect what you are going through by staying away from you if they are sick.

    Good luck.

    Tom C.

    Thank you for the uplifting comments
    Hi Tom,
    My 18 year old son, Scott, was just diagnosed with his second relapse. We are at wits end trying to determine what course of action to take. He has had so much chemo and radiation over the last 2+ years, and he is now an adult, so needs to make all final decisions. Your story is very uplifting. I am looking for strong survivor stories.
    Ray, Washington, D.C.
  • Charl1986
    Charl1986 Member Posts: 2
    #50
    Craig5810 said:

    Steve-
    Thank you so much for taking the time to post this article. I am a 26 year old male who lives life to the fullest and apparently one of the unluckiest people in the world. But that luck may be improving because by some sort of fate I found this article the same day you posted it. It gave hope! I have recently been diagnosed with the disease and it has infiltrated my bone marrow. My outlook is not good, but my desire to live is strong. Do you really think this doctor Baker is the best? I am willing to do whatever it takes to get the best treatment possible. I currently am going to Mass General Hospital in Boston and in the sarcoma sector. They say that Boston has the best doctors, but if this Baker is really a guru as you say... then I think it's worth taking a look at. I will call Matt tomorrow. What are your treatments? Thank you so much and my blessings are with you. Craig (603)318-5025

    MGH
    Craig,

    I am a 22 year survivor of Stage IV Rhabdomycosarcoma treated by the BEST at MGH from November of 1986-November 0f 1988 by Dr, David Harmon and wonderful team of specialists. I was also considered and treated as an adult due to being 21 years old when diagnosed. I underwent 24 months of aggresive chemotherapy involving cytoxin, dactinomycine and vincristine. In conjunction, I also underwent 9 straight weeks of daily radiation. I am cancer free, an RN managing the care of medically fragile children (some diagnosed with cancers), living in Atlanta, GA. I have been married to the sweetheart I met just 4 monts prior to my diagnosis, 18 plus years and we have been lbessed with two children now ages 14 and 15 years old. My advice would have been to stay where you are. The treatmetns are tough enough without the support of family, friends and other familiar faces and places. Best of luck.
    Charlene
  • Charl1986
    Charl1986 Member Posts: 2
    #51
    wendybell said:

    question...
    on may 14th 2010 our 8 year old daughter was diagnosed with emb rms in her left cheek.....the pterygoid muscle and unfortunately extends up into her cranium. i am guessing if yours was in your cheek it was also the pterygoid muscle where it started. is that correct? what form of treatment were you given. how are doing? hope all is going well for you.

    long term cardiac side effects of rhadbdomyosarcoma chemo tx's
    I am a 22 year survivor and have experienced sinus v-tach so suddenly/severely recently, that it was necessary to chemically convert me in the ER. I will be seen Monday by a cardiologist here in Atlanta but my doctors are suspecting an additional electrical pathway that may have been developed in my heart. I underwent 2 full years of chemo from 1986-1988 the first year 3 tretments a week for Stage IV Rhabdomysarcoma. Cytoxin, Vincristine and Dactinomycin were the drugs of choice. I have been told that the chemo may have damaged my cardiac system...any knowledge or experience with this? Please respond with any/all knowledge of or experience regarding long term cardiac effects of Vincristine, Dactinomycin and Cytoxin on the cardiac system.
    Thank you,
    Charlene
  • Tom C.
    Tom C. Member Posts: 11
    #52
    Charl1986 said:

    long term cardiac side effects of rhadbdomyosarcoma chemo tx's
    I am a 22 year survivor and have experienced sinus v-tach so suddenly/severely recently, that it was necessary to chemically convert me in the ER. I will be seen Monday by a cardiologist here in Atlanta but my doctors are suspecting an additional electrical pathway that may have been developed in my heart. I underwent 2 full years of chemo from 1986-1988 the first year 3 tretments a week for Stage IV Rhabdomysarcoma. Cytoxin, Vincristine and Dactinomycin were the drugs of choice. I have been told that the chemo may have damaged my cardiac system...any knowledge or experience with this? Please respond with any/all knowledge of or experience regarding long term cardiac effects of Vincristine, Dactinomycin and Cytoxin on the cardiac system.
    Thank you,
    Charlene

    Charlene: Long Term Cardiac Side Effects of Chemo
    Hi Charlene. It is interesting that you bring up this subject. I am a 36 year survivor of rhabdomyosarcoma. About four years ago I started to get yearly cardiac check-ups after learning that Dactinomycin can cause heart muscle damage if administered in too high of a dosage. Back in the 1970's I had roughly twice as much of this drug as is recommended in today's treatment protocol. Fortunately, I have not suffered any substantial heart muscle damage, although my ejection fraction is slightly lower than other males my age. (This is the force in which the heart operates when pumping blood)

    I have yearly echo-cardiograms and a heart MUGA test every other year. I have been advised that cardiologists are looking to see how the heart responds to exercise, meaning does the heart's ejection fraction fall within the "normal" range and more importantly, is the heart enlarged due to prior treatment. I am taking 10mg of Altace daily which is an ace inhibitor and my ejection fraction has actually improved over the last four years.

    Are you taking any heart medication? Are you experiencing any fatigue or shortness of breath? It is very wise that you are on top of this as researchers are just finding out what some of the long term effects of chemo are on adult survivors of pediatric cancers.

    Good Luck, Tom C.
  • emarquez
    emarquez Member Posts: 1
    #53
    positivemum01 said:

    My son has Rhabdo,he is 6
    Hi Linda, It seems we have sons with the same cancer. Logan is now 6, but diagnosed in Jan when he was 5. The oncologist has never been clear exactly which strain it is. Only that it is definately NOT alvioli, and nor Embryonal! It is somewhere in between . I wish they would name it so that I could research it. I am going to ask for the pathology reports in our next meeting. I am starting to get more strength and confidence with this journey now, rather than being a mild, meek scared mum as I was at the beginning. That is probably text book I guess.

    Logan is on 54 weeks of treatment. Vinchristine, IE, VDC, I VAC. tHE WORKS. It is from an American study ARST0431. I am so glad that we are in 2010 and not 1975. The treatment seems agressive, but we are stage 4 so it has to be. I look forward to chatting to you if you have time. We are in for 5 nights of IE in Brisbane, Australia.
    Regards, Lisa

    My son was initially diagnosed with alveolar rhabdomyosarcoma in 2005 when he was 18 months old. He went on 10 sessions of brachytherapy, 42 weeks of chemo (VAC) and a few surgeries. He was fine until the cancer came back in July of 2010. he is now 7 y/o and will undergo 54 weeks of Chemo (ARST 0431). By God's grace I believe that he will beat this cancer again and for good. Let us just keep on praying and keep the faith. Philippians 4:13
  • Tom C.
    Tom C. Member Posts: 11
    #54
    RayW said:

    Thank you for the uplifting comments
    Hi Tom,
    My 18 year old son, Scott, was just diagnosed with his second relapse. We are at wits end trying to determine what course of action to take. He has had so much chemo and radiation over the last 2+ years, and he is now an adult, so needs to make all final decisions. Your story is very uplifting. I am looking for strong survivor stories.
    Ray, Washington, D.C.

    Your Son
    Hi Ray. I just wanted to inquire how your son is doing? I hope he is doing well.


    Sincerely,

    Tom C.
  • JAMES66
    JAMES66 Member Posts: 2
    #55
    matthew04 said:

    Alveolar Rhabdo
    Hi Tom...Yes it is also my understanding that Alveolar Rhabdo is more aggressive and harder to cure. However, nothing is impossible for God. True faith relies on God and believes before seeing. My son is still in treatment. He is just now finishing up his 12th round of chemo and still has two more rounds to go...then 5 weeks of radiation.
    He has tolerated chemo extremely well by the grace of God. The doctors told us that they have only seen very few who has had this kind of response to chemo. He had a very large tumor and now it is all gone...has been completely gone since October.
    I can only say that we have strong faith and could not face one day without our Lord.
    Everything happens for a reason and we have been praising God through this storm...but it's not about my son, me or my family...it's all about God and giving Him all of the glory and praise. The Psalmist said."I am still confident of this: I will see the goodness of the Lord in the land of the living." (Ps 27:13) My advise to anyone going through this is to trust God...believe in His WORD..for it is so true. NEVER GIVE UP!!

    Thank you Tom for your prayers and I am so glad that you are here today. I do believe with all my heart that my son and Carmen will also be here 35 years from now ..helping others just as you are. God bless you.

    rabdomyrosarcoma
    yes in 1966 God healed me of rabdomyrosarcoma which even the Doctors gave the credit to God
    I am now 49 year young and have a normal life.The most important thing is to never give up pray unceasingly.
  • angel2930
    angel2930 Member Posts: 4
    #56
    grannyj7 said:

    I don't know how old your
    I don't know how old your sister is, but my 6 year old granddaughter was diagnosed in 2005 with embryonal rhabdo. The tumor was 5 cnm and because of location could not be removed. She underwent 42 weeks of chemo and 30 radiation treatments and is now a little more than 3 years cancer free and doing extremely well.

    Rhabdomyosarcoma
    Hello I was glad to hear about your grand-daughter doing so well. I hope that is the case still because your post is from 2009. I was wondering if you don't mind me asking where the tumor originated from? What area of the body? My son Bailey (6yrs old)has been diagnosed with embroynal rhabdomyosarcoma of the pelvic region stage III(although the doctors have no idea where it originated from they feel it may have started from behind the abdominal cavity and grew forward)because of the location they could not operate so we are currently going through a year of chemo and two weeks ago finished 6 wks of radiation. I have had little luck with finding cases such as ours, but hope to post our story so that others can share their stories. I hope and pray all is well.
  • No Rotel
    No Rotel Member Posts: 2
    #57
    Tom C. said:

    Charlene: Long Term Cardiac Side Effects of Chemo
    Hi Charlene. It is interesting that you bring up this subject. I am a 36 year survivor of rhabdomyosarcoma. About four years ago I started to get yearly cardiac check-ups after learning that Dactinomycin can cause heart muscle damage if administered in too high of a dosage. Back in the 1970's I had roughly twice as much of this drug as is recommended in today's treatment protocol. Fortunately, I have not suffered any substantial heart muscle damage, although my ejection fraction is slightly lower than other males my age. (This is the force in which the heart operates when pumping blood)

    I have yearly echo-cardiograms and a heart MUGA test every other year. I have been advised that cardiologists are looking to see how the heart responds to exercise, meaning does the heart's ejection fraction fall within the "normal" range and more importantly, is the heart enlarged due to prior treatment. I am taking 10mg of Altace daily which is an ace inhibitor and my ejection fraction has actually improved over the last four years.

    Are you taking any heart medication? Are you experiencing any fatigue or shortness of breath? It is very wise that you are on top of this as researchers are just finding out what some of the long term effects of chemo are on adult survivors of pediatric cancers.

    Good Luck, Tom C.

    Thank Goodness!
    Tom, Iam so where you are right now. 35 yr survivor, diagnosed at age 15 and here I am today trying to keep up with all the recommendations following the massive amounts of chemo and radiation we received.

    Had a 3 day physical at St Judes Long term follow up study, but did not includ a psych eval. I feel so isolated and mis-understood.

    Glad Ifound this site. Bless you. You have given wonderful advise!
  • Anne40
    Anne40 Member Posts: 1
    #58
    matthew04 said:

    Jackie,
    My son had Alveolar Rhabdo..I have a question for you...did Carmen's cancer ever go completely away while undergoing treatments? What stage was she in?
    My son had stage 4 Rhabdo..as of October his MRI is clean..no residue or anything.
    Please contact me if you have any questions.
    Much love and prayers to Carmen and her family.

    Son - Aveolar Rhabdo
    Just reading everybody's comments. My son also had stage 4 aveolar rhabdo. He was diagnosed January 2004, aged 3 1/2. Original tumour in testicle and secondary in lung. Testicle removed and then chemo began, after second chemo the lung was clear. Chemo continued for 9 months and I'm happy to say that he is now a lively 10 1/2 year old who has remained free from cancer.

    My prayers go out to everybody else who is currently going through this horrible journey!
  • lastangel4one
    lastangel4one Member Posts: 2
    #59
    bradneilson said:

    Hi I am a 42 yr old father of a 21 yr old son who was recently diagnosed with stage 1 Rhabdo. He is currently undergoing VAI chemo. We live in Australia. We grew up together and he is everything to me, I am very worried about him, though I have faith in the Lord. What lies ahead. He is a well built, active youngster. Will he recover fully after chemo? What was your cancer and what Chemo protocol were you on? Regards Brad

    Hello Rhabodosarcome survivor 2x
    Hello I will tell you one thing that helped me thru my chemo , which by the way was a death sentence, God is the only one that can really help. well you just keep having faith NEVER give up and God will see you through, like he did me. I had this cancer 2x and not had a return 11 1/2 yrs..I will pray for your sons return to safe health and pray that he never has to deal with this again..if u need to chat here is my email..cynross@hotmail.com ..
  • lastangel4one
    lastangel4one Member Posts: 2
    #60
    JAMES66 said:

    rabdomyrosarcoma
    yes in 1966 God healed me of rabdomyrosarcoma which even the Doctors gave the credit to God
    I am now 49 year young and have a normal life.The most important thing is to never give up pray unceasingly.

    Wonderful
    In 1999 God healed me of my Rhabdosarcoma. Live is good when you trust in the Lord.
  • Elyza
    Elyza Member Posts: 1
    #61
    Linda_OH said:

    21 year old son with rhabdomyosarcoma
    I hope your sister is responding well to treatment. My 21 year old son was diagnosed with rhabdomyosarcoma in February 2008. The doctors have not always been clear but I believe his is embryonal. He underwent 6 rounds of chemo that were very difficult. A couple of months after chemo, the cancer showed on a CT scan so we were referred to another hospital. He has just completed 9 of the 12 cycles. He has had a much better quality of life during chemo this time; different drugs, different dosages, and different methods of coping. Additionally this time he will receive radiation. Good luck and best wishes to you and your sister.

    22 and just diagnosed
    hi Linda. i just found out today that i have rhabdomyosarcoma through the biopsy results. Last July, there was a small acne on my chin and TODAY it is a tumor. My entire chin is swelling due to the growth of this cyst. The plastic surgeons said that they will conduct a surgery and then i can go for chemo. I am not sure what to do now. I seek for some advice from you since your 21 year old son had gotten it before.

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