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Rhabdomyosarcoma Alveolar

rettann
Posts: 2
Joined: Apr 2009

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.

uscsandrar
Posts: 2
Joined: Jul 2009

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.

InvictusAngel's picture
InvictusAngel
Posts: 93
Joined: Nov 2009

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.

irishellie
Posts: 8
Joined: Mar 2010

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

Tom C.
Posts: 11
Joined: Dec 2009

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.

Deli4gs
Posts: 9
Joined: Jan 2010

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.

Tom C.
Posts: 11
Joined: Dec 2009

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.

Deli4gs
Posts: 9
Joined: Jan 2010

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?

Steeevo
Posts: 3
Joined: Mar 2010

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......

irishellie
Posts: 8
Joined: Mar 2010

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

mote12768
Posts: 1
Joined: Mar 2010

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!

tzadika
Posts: 2
Joined: Jun 2011

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

climarm
Posts: 2
Joined: Jan 2013

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

 

 

 

 

Ps34
Posts: 5
Joined: Mar 2013

I have heard of it because they offered it at the hospital where my son is being treated.  There are many rules including time limits on how far out you are from a diagnosis. Although we chose not to do the trial, the oncologists said that if you start a trial you can stop anytime you want to. The protocol adds two new drugs to the most current protocol developed from the 4th clinical trial.  We were told that this current trial is actually the 5th rhabdo trial.  You can go to any of the Children's Oncology Group Hospitals websites and read about the clinical trials. Try St. Jude's or MD Anderson.

Also, we have found three very effective foods/herbals to use in the meantime: 3d Beta Glucan by Transfer Point; Modified citrus pectin by EcoNugenics.com; and AveUltra from TheHarmonyCompany.

capellibella
Posts: 2
Joined: Jul 2012

Hi! I just found this forum, which Im so happy that I did! I feeling so alone with this battle because this cancer is so rare and even more so in adults. Im a healthy young adult and dont understand why this has happened to me. Ive been through 3 different rounds of Chemo as well as Radiation. Its an ongoing battle that Ive been dealing with for about a 1 1/2 years now. If anyone else has gone through this or is still battling this disease and have any insight or information, please let me know.
Thanks you!
Rebecca

Claire2610
Posts: 1
Joined: Dec 2012

Hi my name is Claire and I live in the UK, like you I have been diagnoised with a Rhabdomysarcoma tumour in my sinues and unfortunetly it has spread to the lymph node, pelvis, spine and femurs. I undergoing chemo and radiotherpy, how is your treatment going it would be good to compare notes.

edickins
Posts: 1
Joined: Dec 2012

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.

Ps34
Posts: 5
Joined: Mar 2013

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
Posts: 5
Joined: Mar 2013

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?

ANNMARIEWEIN
Posts: 4
Joined: Jun 2012

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.

 

 

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