RHABDOMYOSARCOMA

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  • LCSL2
    LCSL2 Member Posts: 3
    dlrobins said:

    treatment
    twoods, Just read your post. Don't go on alot. Kyle is doing as well as can be expected. finished 28 rounds of radiation, and is in for chemo this week. Initially back in Aug, the VAC was not working as well as expected. The doctors here at Mayo, Phx, changed protocols, and began a very aggressive cycle of VDC, one week off, then IE. Not sure if your familiar with the initials, if not just email me for chemo names. This protocol has been extremely effective. The tumor, about the size of a fist, is no longer visible and cannot be felt. Since Ky is so soon off radiation, the drs. want to reimage in about 6 weeks. We believe with all our hearts that it is completely gone, but continue with chemo as this is protocol for this cancer. Our prayers are with you. Love, Debbie and Kyle dlrobinson1004@gmail.com

    Hi

    I really hope you see this message and have some good feedback for me. We are about to start this same protocol for our 2 yr old son. How old was your son kyle when  he went through this chemo and how did he do? 

  • LCSL2
    LCSL2 Member Posts: 3
    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.

    Hi

    Do u mind sharing your story with me. My son has erms stage 4 of the prostate/bladder 

  • 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.

    I think I have read your other Blog

    Tom C,

     

    I think I have read about your case on other blogs.  Thanks for being so inspirational and allowing the rest of us to draw strength from your testimony.  If I remember right, you did a lot of running during your treatments, right?

  • BIGHEDMICK
    BIGHEDMICK Member Posts: 4
    LCSL2 said:

    Hi

    Do u mind sharing your story with me. My son has erms stage 4 of the prostate/bladder 

    stage 4 prostate rhabdo

    Hello, I am a new member. I know this is an old post, but my 2 year old son has the exact same diagnosis. It's just that this location is difficult and rare. He doesn't actually have a prostate due to his age, but it's basically the same with the location. Any reply would be so helpful. Thank you.

  • cricker
    cricker Member Posts: 1
    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.

    Hi Tom,
    It's been a little

    Hi Tom,



    It's been a little while since you originally posted on here, so I'm hoping you'll see this. My cousin was diagnosed with stage 4 alveolar rhabdo when she turned 5 years old. She has responded well to chemotherapy and radiation, but is nearing the end of her treatment plan. Her parents are having a difficult time deciding a post treatment plan. Did you receive any treatments after the cancer went away? Do you have any suggestions on what they should do? Anything will help!!



    Thanks,

    Cora
  • Supertone
    Supertone Member Posts: 4 Member
    Deli4gs said:

    alveolar rhapdomyosarcoma
    Thank you Tom for your reply.

    Unfortunately, Carmen has alveolar rhapdomyosarcoma which seems quite tough to beat. Carmen has been a patient of Dr. Wexler @ Slone Kettering from nearly the beginning of being diagnosed (Sept 2008). She had surgery at Westchester Medical and then her parents decided to get treatment at Sloan. After 66 weeks of chemo (Nov. 2009) and going 6 weeks without and upon her first scan (1/2010), the bad news was cancer appeared again in three places. Her parents have gone to Children's Hospital of Philadelphia, spoke to a rhapdo cancer specialist at Dana Farbar in Boston, and another at St. Jude's, they all recommended staying at Sloane with Dr. Wexler.

    Carmen has now began getting treated again with chemo (this time in pill form). A woman I know has a husband that had stage 4 esophagus cancer and given weeks to live and recommended black seed oil to drink everyday. Her husband is now cancer free two years in April. With not dismissing any form of hope, Carmen's parents shop now at natural food stores, feed her black seed oil, wheat grass juice, bathe in baking soda baths and more importantly letting her enjoy time with family and friends and just trying to be upbeat despite everything.

    Her parents are our dear friends and we continue to show support, understanding and just a shoulder to cry on. I continue to search for any answers that may provide them with any form of hope. I am a big advocate for the natural healing things and give them any research I find for them to read and decide if that is something they may want to try.

    This 16 year-old that is an athlete, honor student, and just a fun girl is fighting and hopefully there is something out there for her.

    Thank you again,

    Jackie

    My 14 year old has Alveolar Rhabdomyosarcoma too.

    Hi,

    I hope that Carmen made it through his treatments ok?  My son Will was diagnosed with ARMS this past August and is in week 11 of chemo.  He goes every week to get either VAC, V and Irinotecan which is given five day in a row.  He is going to start radiation next week and has a 43 week treatment schedule.  The part he has the most trouble with is all the side effects from the different chemo drugs.  His ARMS started in his right hand and spread to his lymph nodes at the elbow and under his arm pit.  So far the treatment has made the tumor shrink to nothing in his hand, they removed the lymph nodes at the elbow when they put in his port and did bone marrow biopsy's, that luckily came back negative.  Will believes in God and trusts Him to get him through this.  Any help you know of, seeing you've been down this dark road before would be greatly appreciated.

    God bless you!

    Tony

     

     

     

  • kenya
    kenya Member Posts: 3
    Steeevo said:

    RHABDOMYOSARCOMA
    Dear friends that are looking for answers, and doctors with answers..... I found some.

    I am a 45 year old male that was diagnosed with "Pleomorphic Rhabdomyosarcoma". The doctors found (by accident) a 12cm (softball size) tumor buried in my pelvic area. After 2 different biopsies, and all of my doctors scratching their heads and disagreeing on a treatment plan, I decided to call a family friend who is the Head of sarcoma oncology at the Children's Hospital where I live. He is very familiar with Rhabdomyosarcoma, but cannot treat me, because I am outside of the guidelines for the Children's Hospital.

    I told hime I would do anything, and willing to go anywhere for treatment. I didn't care if I had to move or travel a lot. WHERE DO I NEED TO BE?

    He told me that there was a "Sarcoma Guru" named Dr. Larry Baker at the University of Michigan in Ann Arbor, MI. that he has seen lecturing at many doctors conferences around the world. This was the guy!!!

    I called Dr. Baker's coordinator (Matt)734-647-8902, and had all of my scans, Dr.'s notes, path results, slides, tissue samples and everything forwaded to them. They even paid for all of it. Within days, I was able to get in to see Dr. Baker. He is definitly the guy. My position is unfortunate, because my tumor is inoperable because of it's size and location, but I am still doing all of my treatments there.

    The University of Michigan, not only has one of the best cancer centers in the world, they have got a special "Sarcoma Treatment Center", which is well-funded and top notch! This sarcoma treatment center is under the direction of Dr. Larry Baker with some of the most talented and acclaimed sarcoma docs in the world working under him. I was immediately introduced to my whole team, including; scheduler, social worker, charge nurse, Physician's assistant, Home-med nurse, training nurse, etc. Their staff took care of everything, including my transportation (very far) and accomodations. This hospital complex has a 30 room hotel called the "Med Inn" within the hospital itself. They offer rooms for out of town patients that are doing treatments and appointments, as well as family suites if you are travelling as a family.

    If you are an adult that has been diagnosed with Rhabdomyosarcoma, you need to try to get here!!! Your life depends on it. This cancer is a killer in adults. Children diagnosed with Rhabdomyosarcoma have better chance. But with adults, there is a very slim survival rate, and very little data showing any survival rates beyond five years.

    I hoped that I have managed to help somebody with this information.

    You can also visit their website at: http://www.cancer.med.umich.edu/cancertreat/tissue_bone/the_clinic.shtml

    Steve

    By the way... I am not affiliated with the hospital in any capacity other than being a patient. I am not trying to "drum up" business for them. I am trying to save someone else's life. Might be yours......

    Hello
    Can you please email me

    Hello

    Can you please email me in regards to your cancer and how things turned out. My son was diagnosed 10 months ago. My email is kenya110679@gmail.com 

    Thank you

    A desperate mom

  • kenya
    kenya Member Posts: 3
    Charl1986 said:

    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

    Hello
    My son has this cancer

    Hello

    My son has this cancer and I would love it if you could email me. I fighting hard to save his life. 

    Thank you much for reading my plea

    Kenya110679@gmail.com 

  • kenya
    kenya Member Posts: 3
    angel2930 said:

    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.

    Hello
    My 22 year old son was

    Hello

    My 22 year old son was diagnosed with Embryonal rhabdomyosarcoma of the bladder and prostate. We are having a bumps in our journey. If all possible can you email me. It would be a blessing to share possible effective treatment plans. I am desperately trying to save my son's life.

    Kenya110679@gmail.com

    Thank you much 

  • BLove333
    BLove333 Member Posts: 2
    Supertone said:

    My 14 year old has Alveolar Rhabdomyosarcoma too.

    Hi,

    I hope that Carmen made it through his treatments ok?  My son Will was diagnosed with ARMS this past August and is in week 11 of chemo.  He goes every week to get either VAC, V and Irinotecan which is given five day in a row.  He is going to start radiation next week and has a 43 week treatment schedule.  The part he has the most trouble with is all the side effects from the different chemo drugs.  His ARMS started in his right hand and spread to his lymph nodes at the elbow and under his arm pit.  So far the treatment has made the tumor shrink to nothing in his hand, they removed the lymph nodes at the elbow when they put in his port and did bone marrow biopsy's, that luckily came back negative.  Will believes in God and trusts Him to get him through this.  Any help you know of, seeing you've been down this dark road before would be greatly appreciated.

    God bless you!

    Tony

     

     

     

    Light in the dark

    I am a 33 year old female who just battled stage 4 RMS. I have been cancer free for 9 months, and just finished treatement last month. The road is dark and rough, but there is always hope through faith and love. Along side chemo and radiation I switched my diet to vegetarian, drink alkaline water, medical marijuana CBD and supplements. There is a gal by the name of Kris Carr who has stabilized her stage 4 sarcoma cancer with a vegan diet. 

    Psalm 91 is a wondeful scripture that was given to me by the lord during this tough time. I am just throwing things out there, but these are the things that helped me to beat this disease and move on forward with my healing.

    Let me know if i can be of any help.

    Brittany

  • Supertone
    Supertone Member Posts: 4 Member
    dminches said:

    My 19 year-old son was
    My 19 year-old son was diagnosed with RMS in July, 2009. He has gone through 2 rounds of Irinotecan and now 2 rounds of VAC and a couple other drugs. As of now the treatments have been very successful. The primary tumor site is the outside of his left hand. There is no physical evidence of any remaining tumor and the Pet scans tell a similar story. He did have it in a couple other places (right shoulder blade and lower back) but those tumor sites have shrunk as well. His body has taken a beating from the Chemo but he has started to gain back the 20 pounds he lost during the first 6 weeks of chemo. What I don't understand is why this cancer is so difficult to beat. He has been lucky in that the tumors have shrunk significantly and the doctors admit that they are surprised at the progress but they still paint a very poor picture of the future. Can anyone shed any light on this?

    Hi, my son has ARMS stage 3 in his hand too

    Hi,

    First off, I hope that your son is still a survivor.  I know this is a bit in the future from when he had treatment, but it seems all too familiar.  My son is Will and was diagnosed at 13 in August of 2015 and is almost done with treatments of VAC, V and VI with 28 days of radiation. His protocol was a trial up till 2013 and was for 43 weeks.  He had a tumor on the back of his right hand, we thought it was an injury from playing lacrosse.  By the time we had found out it had spread to his lymph nodes at the elbow and arm pit. They set him at stage 3.  Will too saw fast shrinkage within the first to second blocks of chemo. He had the lymph nodes removed at the elbow at the time his power port and bone marrow biopsy was done, but no surgery on his hand.  They wanted to go for a win/win for him and try to save his hand. He never got a fever or had to be inpatient, at least thus far.  Will just finished his last week long regiment of Irinitican and has only one more Vincristine and one more VAC to go before he goes for his evaluation. Thus far his scans have been NED, but no PET was done after the second block as it was too close to radiation treatments.  The CT and MRI showed no change from the last scans, so they called him stable.  I was hopeful that you might be able to let me know how your son is doing after all this battling with the "Beast".  We too believe in what God is doing for not only my son but a neighborhood kid that is in for brain cancer and all the others fighting The "C" word.  We are being treated at Johns Hopkin's Hospital in Baltimore, MD in the USA.  There have only been two other ARMS cases since we started, one didn't make it and the other has been battling for two years, stage 4 for both of them. 

    Thanks in advance and God bless you,  

    Tony - Will's Dad

     

     

  • irishfoley
    irishfoley Member Posts: 6
    Tom C. said:

    Hi. My type of rhabdomyosarcoma was called embryonal rhabdomyosarcoma.

    I went to Memorial Sloan Kettering Cancer Center in New York city. In my situation, I had surgery in New Jersey in October of 1974, then again in November of 1974. When the tumor reappeared in January 1975, my parents took me to New York on the advice of a physician in New Jersey. Since it had reappeared so quickly, the doctors initially gave me a 25% chance of survival. I underwent radiation treatment for four months and chemo for two years.

    You ask if there is any hope for your friend's daughter? I'm here 35 years later. Yes, all cases are different and yes, people react differently to the treatment. I had success at Memorial Sloan Kettering so I am a big advocate of them. However, interestingly enough, where in the past many doctors gravitated to the big city hospitals to practice, over the years, many of the doctors that have trained in the larger city hospitals where they may have seen more cases of rarer or difficult tumors,are now practicing in smaller regional hospitals throughout the country.

    Perhaps your friend may want to inquire into Sloan Kettering. They may see your friend's daughter and recommend a treatment course that she can follow in her home state through her local physicians. Their web address is www.mskcc.org. They see many cases of rhabdomyosarcoma. They may have a course of treatment different from course of action your friend's daughter is planning to undergo. A phone call, a trip to New York, whatever it takes, never give up hope, never.

    I wish her good luck and will keep a good thought for her.

    Tom C.

    Embryonal Rhabdomyosarcoma of the Cervical Muscle

    Hi Tom,  I too had embryonal rhabdo at the age of 44 in 2005 and was given 7 month to live.  I then went to Dana Farber and with their help and input from MD and Sloan I survived.  I'm 10 years out from completion of treatment which included surgery, radiation and chemo and the rhabdo is gone.  Side effects....not so good and I have to try hard to remind myself that I am here in life and not just a memory.  Attitude is everything and knowledge is power!  God bless you and I hope this message finds you well.