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Rhabdomyosarcoma Alveolar



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rettann

				          
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        			    April 12, 2009 - 6:01pm			  			

			
			
Our 14 year old girl was diagnosed with a very rare and aggressive cancer: Rhabdomyosarcoma Alveolar.

We have been informed there are only on average of 450 cases diagnosed in the United States per year.

Would like to talk with others dealing with this type of cancer.


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uscsandrar

				      
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July 13, 2009 - 11:08pm

			
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.  



			
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InvictusAngel

				      
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November 29, 2009 - 3:23am

			
I was just looking to see if
			
I was just looking to see if anyone had actually posted on this I was diagnosed with two types of cancer Rhabdomyosarcoma cervical cancer and endometris uterine cancer had 3 surgeries in Sept and starting Chemo 12-1-09 my doctor has me freaking out because  Im 32 she says this is a cancer that very rarely is found in adults and that all the test studies even are on children, and yes it is rare and very aggressive and has to have Chemo treatment  I am starting 44 weeks of 3 different medications in my chemo cocktail as she put it.I totally understand your concern I am there with ya the counts for ppl found with this in adults is even smaller than in children.

Please keep posting and let me know how your daughter is doing I pray she is doing well.My oldest is only a couple years younger than your daughter  its hard for me at 32 to be going through this so I know at 14 it has to be even more confusing. 



			
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irishellie

				      
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March 22, 2010 - 10:04am

			
I was 44 in 2005 when diagnosed with Emb Rhabdo in Cervical Musc
			
Hi, my name is Ellen and I'm now 49 and cancer free.  I was diagnosed with Embryonal Rhabdomyosarcoma in my cervical muscle in June of 2005. I had 48 weeks of chemotherapy with CAV, 25 external radiation treatments and 3 internal radiaion treatments.  I'm cancer free for 44 months. I've learned alot and may be able to help. You can email me directly at irishfoley@charter.net.  Hope you are doing ok. I'm not sure where you are in the treatment plan. We are EXTREMELY RARE and I would appreciate hearing from you. Good Luck. Ellen



			
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Tom C.

				      
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December 30, 2009 - 11:02pm

			
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.



			
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Deli4gs

				      
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February 2, 2010 - 8:19pm

			
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.



			
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Tom C.

				      
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February 3, 2010 - 12:37am

			
Reply to Deli4gs
			
My type of rhabdomyosarcoma was called embryonal rhabdomyosarcoma. My type of rhabdo had reoccurred less than four months after my first surgery.


When my parents took me to Memorial Sloan Kettering Cancer Center in New York, the outlook was not good.  I had two operations there and started on radiation and chemo.  If your friend's daughter is looking at perhaps trying something experimental, I do not see how it could hurt to contact Sloan Kettering and get their opinion also.


I am by no means second guessing any of her doctors, but I can only comment from my experiences.  If her prognosis is not too good, why not seek additional medical information from a facility such as Sloan Kettering which has successfully treated this type of cancer. Their website address is www.mskcc.org. 


Tell your friend's daughter not to give up.  I am proof that after a recurrence, miracles can happen.  If I could get through it, she can too!  I will keep a good thought for her.


Tom C.



			
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Deli4gs

				      
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January 13, 2010 - 1:18pm

			
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?



			
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Steeevo

				      
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March 21, 2010 - 6:26am

			
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......



			
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irishellie

				      
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March 22, 2010 - 10:13am

			
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 



			
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mote12768

				      
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March 24, 2010 - 7:35am

			
Kristen Baker
			
Hi Steve,


My cousing has just been diagnosed with metastis to bone marrow.  he is 26 and has the best attitude I have ever seen.  He has no insurance, would Michigan still take him?  he is currently having treatment in Boston.  His platelets keep going down.  Do you think Dr. baker could help him, He is an amazing young man and full of life, I know he can beat this but I would like to give him any info I can to even better his chances. 


Thank you so much!



			
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tzadika

				      
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June 8, 2011 - 6:05pm

			
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



			
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