RHABDOMYOSARCOMA

24

Comments

  • Unknown
    Unknown
    #22
    This comment has been removed by the Moderator
  • dlrobins
    dlrobins Member Posts: 17
    #23
    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.

    Rhabdomyo sarcoma- response to Linda
    Your story is too familiar... My son, also 21 was diagnosed with ERMS in July 09. He was initially treated with VAC, but it was not aggressive enough, and in between treatments the cancer was growing back. A week ago he had his first treatment of VDC. In the past week we have seen no tumor growth, and infact it has receeded. We are hopeful that the IE to be cycled in this week will continue to shrink the tumor. The RMS is in his neck, so surgery is not an option at this time without major disfigurement. Radiation is also in the picture in less than a month. Our prayers are with your son, and others who are experiencing this cancer.
  • grannyj7
    grannyj7 Member Posts: 1
    #24
    uscsandrar said:

    My sister was just diagnosed with Rhabdomyosarcoma
    Hello. My sister was just diagnosed with Rhabdo and someone suggested I reach out and try to speak to people about their condition and to learn more about the treatment. My sister starts chemo on Monday, but we are trying to get her in for a second opinion at City of Hope. Any advice would be greatly appreciated!

    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.
  • Unknown
    Unknown
    #25
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #26
    This comment has been removed by the Moderator
  • twoods
    twoods Member Posts: 1
    #27
    dlrobins said:

    Rhabdomyo sarcoma- response to Linda
    Your story is too familiar... My son, also 21 was diagnosed with ERMS in July 09. He was initially treated with VAC, but it was not aggressive enough, and in between treatments the cancer was growing back. A week ago he had his first treatment of VDC. In the past week we have seen no tumor growth, and infact it has receeded. We are hopeful that the IE to be cycled in this week will continue to shrink the tumor. The RMS is in his neck, so surgery is not an option at this time without major disfigurement. Radiation is also in the picture in less than a month. Our prayers are with your son, and others who are experiencing this cancer.

    New treatments may work....
    I just read your story about your son and my boyfriend was diagnosed with rhabdomyosarcoma in Sept of this year. His is also in his neck and the discussion has been to go with chemo then radiation then hopefully surgery if the tumor shrinks enough. After his 3rd round of chemo the tumor got quite a bit larger and they say that at this point the chemo is not working- the tumor had shrunk after the first and second rounds. We are meeting again next week to discuss the plans. He has switched dr's in the process so that he will be seen by the specialist but it is difficult to have faith in all these treatments with out a rapport with the dr. I am interested to hear how things are going with your son
  • dlrobins
    dlrobins Member Posts: 17
    #28
    twoods said:

    New treatments may work....
    I just read your story about your son and my boyfriend was diagnosed with rhabdomyosarcoma in Sept of this year. His is also in his neck and the discussion has been to go with chemo then radiation then hopefully surgery if the tumor shrinks enough. After his 3rd round of chemo the tumor got quite a bit larger and they say that at this point the chemo is not working- the tumor had shrunk after the first and second rounds. We are meeting again next week to discuss the plans. He has switched dr's in the process so that he will be seen by the specialist but it is difficult to have faith in all these treatments with out a rapport with the dr. I am interested to hear how things are going with your son

    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
  • InvictusAngel
    InvictusAngel Member Posts: 90
    #29
    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 Im 32 also have been
    Hi Im 32 also have been diagnosed with rabdomysarcoma was located in my cervics and had endometrial uterian as well I am currently undergoing chemo started Tuesday this week 44 weeks I will be doing doc says,would be nice to get to know other adults as well that has faced this or is facing it.
  • dminches
    dminches Member Posts: 1
    #30
    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

    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?
  • Tom C.
    Tom C. Member Posts: 11
    #31
    InvictusAngel said:

    Hi Im 32 also have been
    Hi Im 32 also have been diagnosed with rabdomysarcoma was located in my cervics and had endometrial uterian as well I am currently undergoing chemo started Tuesday this week 44 weeks I will be doing doc says,would be nice to get to know other adults as well that has faced this or is facing it.

    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.
  • Deli4gs
    Deli4gs Member Posts: 9
    #32
    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.

    Alveolar Rhapdomyosarcoma?
    Hi Tom:

    Your words were very uplifting. May I ask what kind of rhapdomyocarcoma did you have? My dear friend's 16 year-old daughter was diagnosed September '08 with alveolar rhapdo, after 66 weeks of chemo, she received the devasting news the cancer is back in three places. It was confirmed upon her first set of scans after completing her chemo. Plan B includes alkaline diet, homeopathic treatment and chemo. Her prognosis seems bleak, is there any hope?

    Thanks,
    Jackie G.
  • Tom C.
    Tom C. Member Posts: 11
    #33
    Deli4gs said:

    Alveolar Rhapdomyosarcoma?
    Hi Tom:

    Your words were very uplifting. May I ask what kind of rhapdomyocarcoma did you have? My dear friend's 16 year-old daughter was diagnosed September '08 with alveolar rhapdo, after 66 weeks of chemo, she received the devasting news the cancer is back in three places. It was confirmed upon her first set of scans after completing her chemo. Plan B includes alkaline diet, homeopathic treatment and chemo. Her prognosis seems bleak, is there any hope?

    Thanks,
    Jackie G.

    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.
  • Deli4gs
    Deli4gs Member Posts: 9
    #34
    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.

    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
  • matthew04
    matthew04 Member Posts: 4
    #35
    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?

    RHABDOMYOSARCOMA
    My 17 year old son was diagnosed with RMS in March, 2009. I don't know why this cancer is very hard to beat. I just know that it is very aggressive. The doctors don't know everything..although they are wonderful..they still don't know everything. They told us my son's tumor would shrink about 20% if we were lucky. After two treatments of chemo it shrank 50%...after 5 treatments...no change at all...then after seven treatments...the tumor is completely gone..no residue..nothing. They said his MRI was beautiful..that was in October 2009. We just had another scan in January and the MRI is the same..beautiful. We are still doing chemo and have 3 more treatments and then 5 weeks of radiation.
    I know how you feel...but believe me when I tell you...TRUST GOD. What choice do you have?
    Believe, have faith and TRUST God. Partner with God...and His word...He has, He can, and He is our healer...THE GREAT PHYSICIAN!!
  • matthew04
    matthew04 Member Posts: 4
    #36
    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

    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.
  • Tom C.
    Tom C. Member Posts: 11
    #37
    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.

    Glad that your son is doing well and perhaps this news can provide positive reinforcement for Carmen and her family.

    I had embryonal Rhabdo, stage three, 35 years ago. My understanding is that Alveolar Rhabdo is more aggressive and harder to cure. My thoughts and prayers are with your son and Carmen.
  • matthew04
    matthew04 Member Posts: 4
    #38
    Tom C. said:

    Glad that your son is doing well and perhaps this news can provide positive reinforcement for Carmen and her family.

    I had embryonal Rhabdo, stage three, 35 years ago. My understanding is that Alveolar Rhabdo is more aggressive and harder to cure. My thoughts and prayers are with your son and Carmen.

    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.
  • Steeevo
    Steeevo Member Posts: 3
    #39
    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.

    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......
  • Craig5810
    Craig5810 Member Posts: 1
    #40
    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......

    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
  • Steeevo
    Steeevo Member Posts: 3
    #41
    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

    Worth a shot
    Craig,
    Before you make the trip, you can:
    Call Matt
    Get copies of all of your scans (Pet, MRI, CT, Bonescan, etc). Most places can give these to you on CD.
    Then have your slides and wax block tissue sample transfered, along with any physicians reports.

    This is the same thing that Matt will tell you to do. Have Dr. Baker's team review and retest all of the results, and then consult him by phone for a second opinion. If his treatment recomendations are the same as what they have already given you, then there probably isn't the need to make the trip. If he has a more positive treatment plan and more options available, then I would at least make the trip to visit him, and then make the decision whether or not to do treatment there.

    Another option is to make the trip, and then have Dr. Baker be your "Primary Oncologist", and write the orders to the other docs at Mass General. This way you might get ultimately a better outcome, without spending the time or money of being out of town so much.

    Matt should also be able to give you names of local non-profit organizations that are willing to pick up the tab for your trip.

    Thanks for the phone #, I'm going to call you.

    Steve

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