Adult Rhabdomyosarcoma

No Rotel

40 yr E. Rhabo survivor. Just discovered this site!

Diagnosed at age 15 with E. Rhabdomyosarcoma. Tumor was attached to my coccyx. Treated at St Judes in Memphis with 5500 Gamma radiation and 18 months of chemo. Yes the red devil included. Currently struggling with radiation enteritis. There are many chat rooms here. I have been blessed with 40 hrs that was not promised to me. But I want more. Currently trying to enroll into a cancer survivorship program with docs and a multidisciplinary team that can help me live better than my current existence in a bathroom or walking around with IVF's. The small bowel obstructions get me down and are coming more frequently. Thank you. 

irishfoley

No Rotel said:

40 yr E. Rhabo survivor. Just discovered this site!

Diagnosed at age 15 with E. Rhabdomyosarcoma. Tumor was attached to my coccyx. Treated at St Judes in Memphis with 5500 Gamma radiation and 18 months of chemo. Yes the red devil included. Currently struggling with radiation enteritis. There are many chat rooms here. I have been blessed with 40 hrs that was not promised to me. But I want more. Currently trying to enroll into a cancer survivorship program with docs and a multidisciplinary team that can help me live better than my current existence in a bathroom or walking around with IVF's. The small bowel obstructions get me down and are coming more frequently. Thank you. 

Long term survivor of E. Rhabdo

Hi No Rotel,

I am a 56 year old female survior. I was diagnosed at the age of 44. I had surgery, chemo and radiation (internal and external). I am a SURVIVOR, but it has not been an easy road as you know.  I also have many side effects from the radiation that have me down at times but I remind myself that I am one of the lucky ones.  I'm still here and so fortunate to be able to say that. If you ever want to talk you can reach me at irishfoley@cox.net.  God bless us all!

 

Bhough6

Tom C. said:

Hi. I am 52 years old. I was diagnosed with rhabdomyosarcoma when I was 17. At that time, I was given a 25% chance to survive. I went to Memorial Sloan Kettering Hospital in New York City. They have seen many cases of rhabdomyosarcoma and I am here today because of the treatment course they put me on. I do not know where you live in relation to New York, but I live in New Jersey which made the commute to New York somewhat easier.

Log onto their website at www.mskcc.org to find more information that may be helpful to you.

You can win this fight, I am proof of it. Be proactive in your search for treatment and ask questions all along the way of your doctors. Remember, it's your life and you are entitled to answers from the doctors treating you. Just don't accept a doctor's reason for a treatment course without asking questions and understanding why you are undergoing a particular surgery or course of action.

Best of luck and care to you.

Tom C.

My boyfriend was diagnosed

My boyfriend was diagnosed with Stage 4 Rhabdomyosarcoma in October 2014. He went through a very intense chemo that almost crippled him. He went into remission for a few months then it came back again. He just finished his second round of chemo in April 2017. 2 months ago we found out it came back and now they have him on an experimental chemo pill. His cancer generated in his testicle and he has no lost both of them. It spread to his abdomen, his lymph nodes and lungs. This last time it came back it only came back in his lungs. If you have any information about the treatment you were given I would love to know. He’s going to be 25 in November and is getting sick of all this chemo he is going through

rpati9

noARMS said:

Im a 25 year old male in
Im a 25 year old male in remission for the second time. I was diagnosed with stage 4 Alveolar Rhabdomyosarcoma in August 2007 when I was 23. I was treated at Seattle childrens hospital and went through a clinical trial for my first treatment. I had multiple tumors on my pelvis and spine. The treatment was extreme but it worked quite well. Dr. Hawkins is my doctor and i trust everything he does.

My sister (39 yrs old) fighting ARMS that relapsed

Hi - I am so glad to hear that you were cured of ARMS Stage IV in an adult age. My sister who is 39 yrs old, is getting treated for ARMS since last 1 year in India. She has undergone 10 cycles of chemo and 1 full cycle of radiation therapy, but had a relapse early this year, within a month of completion of radiation therapy.

I believe that there are very few adult cases of ARMS around the world, and I am seeking to connect with any patients (that have managed to recover from this deadly disease) or their relatives, physcians that treated them, to figure out an alternate line of treatment maybe in the US. 

Is it possible for us to connect one-on-one to understand your line of treatment, physician etc.? Please drop a note at my email address "ranjan.pati@gmail.com" if that is fine with you.

Any information in this regard will be highly appreciated, as I am very concerned regarding my sister's chances of survival.

Regards,

Ranjan Pati

Albshe15

I was diagnosed with RMS in my leg thigh in 1995, they believed my time was very limited and I still chose no treatments. We agreed to continue to monitor through MRIs and blood work. I have had 2 more biopsies to find there are multiple tumors in both thighs. Doctors do not understand why but agree that we will continue to do qhat ever it is I am doing and no treatments.

Im saying here the only thing I do different then most is smoke cannibis, A LOT !!!

Specifically Indica for pain as my legs hurt everyday all day.

I believe cannibis has slowed the growth of my Malignant Rhabdomyiosarcoma.

I believe to each his own, this has worked for me and I am grateful for every day I can open my eyes.

Anyway thank you for listening, I have not met any others with adult RMS.