RHABDOMYOSARCOMA

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? 

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?

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

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

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 

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