Rhabdomyosarcoma Alveolar

My sister was just diagnosed
My sister was just diagnosed with the same cancer. She is 43 years old. Its been tough to find a doctor that has had experience treating this type of cancer. How is your daughter doing? My sister starts chemo today.

Rhabdomyosarcoma
I am 52 years old. When I was 17 I was diagnosed with rhabdomyosarcoma. I was given a 25% chance of survival.

I was given chemo for just about two years in combination with radiation during the first four months of treatment. I sought treatment at Memorial Sloan Kettering Cancer Center in New York. Rhabdomyosarcoma is generally diagnosed in children although I was 17, not much older than your daughter. I guess she will be dealing with her treatments as a high school student. I was a senior in high school when I was diagnosed. It is an awkward age in life to have to deal with something like that, not that any age makes it easier.

I found that trying to keep up with my normal activites as much as possible was the best thing I could do, although it did end my ability to keep playing competitive sports due to treatment schedules and overall stamina. I graduated high school on time and commuted to college and graduated in 4 years like everyone else I knew at the time.

I hope your daughter does well with the treatments and keeps a strong positive attitude. Everyone handles treatment differently, but if I could do it, your daughter can do it.

Tom C. said:

Rhabdomyosarcoma
I am 52 years old. When I was 17 I was diagnosed with rhabdomyosarcoma. I was given a 25% chance of survival.

I was given chemo for just about two years in combination with radiation during the first four months of treatment. I sought treatment at Memorial Sloan Kettering Cancer Center in New York. Rhabdomyosarcoma is generally diagnosed in children although I was 17, not much older than your daughter. I guess she will be dealing with her treatments as a high school student. I was a senior in high school when I was diagnosed. It is an awkward age in life to have to deal with something like that, not that any age makes it easier.

I found that trying to keep up with my normal activites as much as possible was the best thing I could do, although it did end my ability to keep playing competitive sports due to treatment schedules and overall stamina. I graduated high school on time and commuted to college and graduated in 4 years like everyone else I knew at the time.

I hope your daughter does well with the treatments and keeps a strong positive attitude. Everyone handles treatment differently, but if I could do it, your daughter can do it.

How did you beat the odds?
Tom C. - What kind of rhabdomyosarcoma did you have as a young person? It seems that alveolar rhabdo is very aggressive and prognosis is not so good. What are your thoughts? The young girl I know was diagnosed at 15 and did 66 weeks of chemo, and cancer is now back. Going back for more chemo and radiation, possible experimental stuff coming up. Thanks for your thoughts.

Deli4gs said:

Alveolar Rhapdomyosarcoma
yes, I do know someone. She is 16 years old and was diagnosed at age 15. She had a lump on bottom of foot, which she thought was from an injury. Unfortunately, it was cancerous and has undergone 66 weeks of chemo. Cancer is back, is there any hope?

Sarcoma treatment centers
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......

Steeevo said:

Sarcoma treatment centers
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......

Thank you for your posting Steeevo- God Bless you
Hi Steeevo,
I was diagnosed as a 44 year old with Embryonal Rhabdomyosarcoma. I totally AGREE with your advice to others. Find yourself experts in the field and get there whatever means possible. The Sarcoma Alliance may even be able to help with funds for travel for a second opinion. If Michigan is too far away and you are on the East Coast then I STRONGLY suggest calling the Sarcoma Clinic at Dana Farber Cancer Center in Boston. They saved my life and were amazing through out.

Steeevo...if you want to communicate with a fellow RARE BIRD...feel free to contact me at irishfoley@charter.net. Good luck and God Bless you. Ellie

Steeevo said:

Sarcoma treatment centers
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......

thank you for sharing
Hello i wish i would have read this sooner unfortunetly my daughter died of rhabdomyosarcoma alveolar a month ago she was 3 years and 5 months
does this hospital take chilren? i want to help my friends and other families this is my mission and my daughter would want me to be there for others
god bless you and i hope all is well with a continuas recovery
Dorit

Steeevo said:

Sarcoma treatment centers
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......

Thank you
My brother-in-law, who is 51, was diagnosed with this a few months ago. He owns a welding shop and had bumped his thigh into metal rods a couple of times really hard so it was very sore. But it wouldn't get better so he went to the doctor. They told him it was a deep bruise and would just take time to heal. He went to several doctors over 7 months before my sister took him to a hospital and told them they weren't going to leave until they did tests and found out what was going on. They did an MRI and then did immediate surgery because they found a mass of what they thought was dried blood. When they opened him up, the surgeon told us right after surgery, it practically exploded. He said there was some "cottage cheesy stuff" that he wasn't sure what it was so he was going to send it to pathology. It turned out he had Rhabdomyosarcoma and the tumor continues to grow. They've discovered nodules in his lungs as well.


I've copied your information and sent it to my sister via email for them to consider. Thank you for sharing your journey.

tzadika said:

thank you for sharing
Hello i wish i would have read this sooner unfortunetly my daughter died of rhabdomyosarcoma alveolar a month ago she was 3 years and 5 months
does this hospital take chilren? i want to help my friends and other families this is my mission and my daughter would want me to be there for others
god bless you and i hope all is well with a continuas recovery
Dorit

Daugther with relapsed ARMS is clinical trial an option?

Hi, I am new on this network's discussion board and I hope by sending my thoughts here would enlighten me. 

My daughter was diagnosed Oct 2011 with alveolar Rhabdo on her left maxilla/sinus part of her face.  She had VAC for 9 months and 30 sessions of radio therapy.

After 5 months in remission, last week of Dec 2012, another lump has grown in her lower neck and a mass on the outer part of her left lung she is now stage 4.

 

We are from New Zealand and our medical team is from the best oncology hospital in NZ.  My daughter's oncologist said that when ARMS relapsed in a year time after finishing the treatment, the chances of curing it is ver very low.  THe treatment option is to have the clinical trial by the Children's Oncology Group (COG).  Have you heard anyone about this? This study involves more than 200 hospital in NOrth America, Australia, NZ and Europe.  We are so confused to decide knowing that the drugs involved are not licensed yet by the FDA and have so many severe effects.  My daughter does not want to undergo chemo treatment anymore.  Her VAC treatment had so much bad effects like losing temporarily her mobility.  If the chemo is not the answer why should she take it anyway?

 

Until now we can't accept why she have this disease...  Causes are unknown and very tough to beat.  Please help me if you could provide me information further about the clinical trial.   My 13 yr old daughter would just want to enjoy her life till her day comes.  We are considering just to have the radio therapy and maybe take some supplements, herbals or natural remedies as an alternative to prolong her life.

 

Hope you are doing good and moving on with your life and devoting yourself to your mission. 

 

Thanks in advance.

Rose

email: roseclims@yahoo.com

 

 

 

 

edickins said:

Thank you
My brother-in-law, who is 51, was diagnosed with this a few months ago. He owns a welding shop and had bumped his thigh into metal rods a couple of times really hard so it was very sore. But it wouldn't get better so he went to the doctor. They told him it was a deep bruise and would just take time to heal. He went to several doctors over 7 months before my sister took him to a hospital and told them they weren't going to leave until they did tests and found out what was going on. They did an MRI and then did immediate surgery because they found a mass of what they thought was dried blood. When they opened him up, the surgeon told us right after surgery, it practically exploded. He said there was some "cottage cheesy stuff" that he wasn't sure what it was so he was going to send it to pathology. It turned out he had Rhabdomyosarcoma and the tumor continues to grow. They've discovered nodules in his lungs as well.


I've copied your information and sent it to my sister via email for them to consider. Thank you for sharing your journey.

rhabdomyosarcoma treatment

Our son has rhabdo but we didn't know it at first. He bumped his leg too. Until they came up with a final diagnosis we immediately put him on some nutrients that have proven to aid in killing cancer cells. One is AveUltra, another is Modified citrus pectin by EcoNugenics; and the third is 3d Beta Glucan by Transfer Point.  These have no side effects and do not interfere in any way with any standard treatments. We told our oncologist we were taking these and their pharmacist said they would not interfere. 

Ps34 said:

Rhabdomyosarcoma Alveolar

Our 12 year old son was diagnosed n October 2012, with Stage IV alveolar rhabdomyosarcoma with a primary site in his left calf and metastacis in his lungs. He has undergone 12 weeks of agressive chemo since December 6, 2012 including VAC, V, IE of which he has had 3 full rounds.  His leg tumor shrunk by 60% and it was removed last week. The lung metastacis is almost completely gone.  They are restarting chemo with Irinitrecan and they want to begin 4 weeks of high dose radiation to leg and 2 weeks to lungs.  

My question is, does anyone know if the radiation is necessary? We hate the thought of giving him so much radiation on top of all the chemo.  Also, how do you know when enough is enough?  Has anyone tried using vitamins and homeopaths or acupuncture along with the chemo and radiation?

Radiation Question

My niece just completed Stage IV treatment consisting of 52 + weeks of chemo and radiation.  Her tumor started in her soleus muscle.  The radiation shrunk the tumor and helped destroy the cancer cells.  She is part of the Childrens Network and all her doctors  agreed the radiation was needed for best results,  She also avoided surgery because of the radiation.  Her  diet was rich with nutrition and  I gave her Juice Plus.  I became a rep for this product because I knew she could use this with her chemo.  Hope this helps.