Adult Rhabdomyosarcoma

JasonP29

I have recently been diagnosed with Rhabdomyosarcoma in my sinus. I am a 29 year old, and am waiting for confirmation from the Sarcoma folks at Memorial Sloan-Kettering Cancer Center. Of course I am scared and confused, but at least early signs seem to indicate that while at stage 4, my other symptoms/location of the tumor and the small size of my tumors (all under 3cm and at around 1cm in the sinus with no spreading to surrounding tissue but metastasis to the nearby lymph node) seem to make me a good fit for some of the successful treatments that doctors are starting to use. I know that I have a long road, but at this point am trying to approach the process 1 step at a time.

As this is a very rare disease,I am wondering what questions/information folks who have gone through this have found helpful. Also, I am hoping to find a place for me and my family to find support from other families that are dealing with this rare disease.


Thanks!
J

woble

Rhabdo good news
My brother in law was diagnosed with rhabdo of the sinus and neck in July. Of course we were floored when we read all the literature we could find, but he has just finished up with his 8th chemo treatment and about to start radiation. The chemo is a mix of chemo meds that lasts for 4 days along with hydration in the hospital every 18-21 days. The good news is that his last scans showed the rhabdo resolved. He will need no surgery. He is doing very well. Oh yes- He is 56 yrs old and just happened to see a small lump on his neck and realized that he had draining sinuses for the last few months which he attributed to the high pollen. He is a landscaper self employed. What else can I answer for you? He is in NY also.

JasonP29

woble said:

Rhabdo good news
My brother in law was diagnosed with rhabdo of the sinus and neck in July. Of course we were floored when we read all the literature we could find, but he has just finished up with his 8th chemo treatment and about to start radiation. The chemo is a mix of chemo meds that lasts for 4 days along with hydration in the hospital every 18-21 days. The good news is that his last scans showed the rhabdo resolved. He will need no surgery. He is doing very well. Oh yes- He is 56 yrs old and just happened to see a small lump on his neck and realized that he had draining sinuses for the last few months which he attributed to the high pollen. He is a landscaper self employed. What else can I answer for you? He is in NY also.

thanks for the response
Hello, thanks for the good news and getting back to us. Great to hear that there is someone else going through the same form of the disease with a treatment that seems to be working well. Would you mind telling me where he is getting his treatment? Also, how did the chemo make him feel? And one last night, can you recommend any resources you found helpful about the disease? Thank you and Happy Holidays! J.

woble

JasonP29 said:

thanks for the response
Hello, thanks for the good news and getting back to us. Great to hear that there is someone else going through the same form of the disease with a treatment that seems to be working well. Would you mind telling me where he is getting his treatment? Also, how did the chemo make him feel? And one last night, can you recommend any resources you found helpful about the disease? Thank you and Happy Holidays! J.

Hello
Sorry I did not get your response. Steve is getting his treatment at Long Island Jewish. He has a wonderful doctor there who consults with MD Anderson in Texas and also with a leading sarcoma doctor in NYC. I will have my sister sign on here today to give you more specifics.

woble

JasonP29 said:

thanks for the response
Hello, thanks for the good news and getting back to us. Great to hear that there is someone else going through the same form of the disease with a treatment that seems to be working well. Would you mind telling me where he is getting his treatment? Also, how did the chemo make him feel? And one last night, can you recommend any resources you found helpful about the disease? Thank you and Happy Holidays! J.

hi.........
hi, my name is connie, my husband is the one with rhabdomyosarcoma. this is a little time line........

steve was shaving and noticed swelling in his neck and went to the dr. on june 8th who sent him to see a ent the next day. he did a needle biopsy on the spot that day and it came back inconclusive with abnormal cells. had a pet scan that week and surgery the next to remove and biopsy the spot. told it's lymphoma, just don't know yet what kind as the cells were taking their sweet time processing to let us know which kind we are dealing with. because it's a holiday weekend we won't know until tuesday. it's been a whirlwind, one step at a time.

july 5th.........told it's not lymphoma, but rhabdomyosarcoma...........sent to a dr. at lij on july 7th that deals with head and neck cancers. he ran more tests on the biopsy slides from previous other dr. more days pass......same diagnosis. also wanted to do a biopsy of steve's sinus. bingo, found the originated site!

july 31st ..........it's been crazy! Monday the 25th was Mt.Sinai for another opinion on treatment, Tuesday was the dental appointment at LIJ, then to Islip for a brain scan. Got home about 4:30 and there was a message from LIJ that there was a bed available and to come in. They couldn't guarantee a bed the next day sooooo up we went. we got there at 8:30 that evening and they did blood work. Wednesday he had a picc line put in and a muga scan. Medication started that afternoon, vincristine, adriamycin, mesna, and ifosfamide. Finihed the meds this am and now just hydrating, hope to go home later today.....Steve felt fine till yesterday and just felt "yucky", not sick. His appetite has been great,eating everything, actually craving potato chips!

Released on Sunday the 30th in the evening. We didn't have time to get the rx for nausea filled as the pharmacies out here were closed so Monday wasn't a great day, Steve was sick. Tuesday, back to LIJ for an appointment to get blood work, the shot (neulasta) to boost his white blood cells and re-hydrate him with a couple of bags of fluids. Because it was his first time there we got the works. A dietician came and spoke to us and left us literature, then a social worker who stayed and talked with us for at least ½ hour. And then a reflexology nurse came by and worked on his reflex points in his feet for 20 minutes to reduce stress, relieve tension of headache, revitalize him and sooth his feet. These people will be available to us all along. Our "support" group so to speak. Again, such a positive experience at LIJ, makes us both feel that we are where we are supposed to be.

everything on the internet was so old, and because it is so rare in adults they didn't have the numbers. the best information we got was in asking questions. i also asked for the dr.
s email and would just dash off questions instead of all the automated phone calls. he would answer within minutes or call to speak with us. i will write more later.......

JasonP29

woble said:

hi.........
hi, my name is connie, my husband is the one with rhabdomyosarcoma. this is a little time line........

steve was shaving and noticed swelling in his neck and went to the dr. on june 8th who sent him to see a ent the next day. he did a needle biopsy on the spot that day and it came back inconclusive with abnormal cells. had a pet scan that week and surgery the next to remove and biopsy the spot. told it's lymphoma, just don't know yet what kind as the cells were taking their sweet time processing to let us know which kind we are dealing with. because it's a holiday weekend we won't know until tuesday. it's been a whirlwind, one step at a time.

july 5th.........told it's not lymphoma, but rhabdomyosarcoma...........sent to a dr. at lij on july 7th that deals with head and neck cancers. he ran more tests on the biopsy slides from previous other dr. more days pass......same diagnosis. also wanted to do a biopsy of steve's sinus. bingo, found the originated site!

july 31st ..........it's been crazy! Monday the 25th was Mt.Sinai for another opinion on treatment, Tuesday was the dental appointment at LIJ, then to Islip for a brain scan. Got home about 4:30 and there was a message from LIJ that there was a bed available and to come in. They couldn't guarantee a bed the next day sooooo up we went. we got there at 8:30 that evening and they did blood work. Wednesday he had a picc line put in and a muga scan. Medication started that afternoon, vincristine, adriamycin, mesna, and ifosfamide. Finihed the meds this am and now just hydrating, hope to go home later today.....Steve felt fine till yesterday and just felt "yucky", not sick. His appetite has been great,eating everything, actually craving potato chips!

Released on Sunday the 30th in the evening. We didn't have time to get the rx for nausea filled as the pharmacies out here were closed so Monday wasn't a great day, Steve was sick. Tuesday, back to LIJ for an appointment to get blood work, the shot (neulasta) to boost his white blood cells and re-hydrate him with a couple of bags of fluids. Because it was his first time there we got the works. A dietician came and spoke to us and left us literature, then a social worker who stayed and talked with us for at least ½ hour. And then a reflexology nurse came by and worked on his reflex points in his feet for 20 minutes to reduce stress, relieve tension of headache, revitalize him and sooth his feet. These people will be available to us all along. Our "support" group so to speak. Again, such a positive experience at LIJ, makes us both feel that we are where we are supposed to be.

everything on the internet was so old, and because it is so rare in adults they didn't have the numbers. the best information we got was in asking questions. i also asked for the dr.
s email and would just dash off questions instead of all the automated phone calls. he would answer within minutes or call to speak with us. i will write more later.......

Thanks for the update
Hi Connie,


Thanks so much for the update! Your husband's treatment sounds very similar to what they are proposing for me at Sloan Kettering. It is very scary, but it makes me feel better to know there are others out there who have gotten through this!

Good luck to your husband and your family.

Jason

woble

JasonP29 said:

Thanks for the update
Hi Connie,


Thanks so much for the update! Your husband's treatment sounds very similar to what they are proposing for me at Sloan Kettering. It is very scary, but it makes me feel better to know there are others out there who have gotten through this!

Good luck to your husband and your family.

Jason

contact
hey jason, my husband would be happy to talk to you if you would like to talk. we are about to begin 6 weeks of radiation on the 17th. our email is contom@optonline.net, email and i will send our phone #.
one of our drs., dr. maki, used to be @ sloan, he is now head of the pediatric oncology unit @ mt. sinai and has worked with our dr., dr. philip @ long island jewish in new hyde park. they have both been in contact with dr. patel at md anderson. we were so happy that the drs. all have their little network and reach out to each other. feel free to pass any info on to your drs.
sending you thoughts and prayers. connie

conste

JasonP29 said:

Thanks for the update
Hi Connie,


Thanks so much for the update! Your husband's treatment sounds very similar to what they are proposing for me at Sloan Kettering. It is very scary, but it makes me feel better to know there are others out there who have gotten through this!

Good luck to your husband and your family.

Jason

Hope treatment is going well
Hope treatment is going well for you. Steve started radiation just this week. I will be in touch to let you know how things are going. Stay strong! Connie

Dom

woble said:

Rhabdo good news
My brother in law was diagnosed with rhabdo of the sinus and neck in July. Of course we were floored when we read all the literature we could find, but he has just finished up with his 8th chemo treatment and about to start radiation. The chemo is a mix of chemo meds that lasts for 4 days along with hydration in the hospital every 18-21 days. The good news is that his last scans showed the rhabdo resolved. He will need no surgery. He is doing very well. Oh yes- He is 56 yrs old and just happened to see a small lump on his neck and realized that he had draining sinuses for the last few months which he attributed to the high pollen. He is a landscaper self employed. What else can I answer for you? He is in NY also.

.RMS on chin
Hi. My name is Dominic and I'm from Malaysia. My sister was diagnosed with RMS 2 months ago and went through a major surgery to remove the infected area. A portion of her chin bone & teeth was removed as well. She is 23 this year. As her wounds have healed, doctor has given her to go through chemo. As of now there is no traces of RMS but if i'm not mistaken, the CT scan can only detect tumors above 1cm in diammeter. Our family are lost in direction. the doctors are unable to confirm that she is free from RMS. Is there any method or equipment you or anyone have heard of to detect the cancer or to prove the existance of remnant RMS in my sister. We are affraid that doing chemo for something which is nomore there may affect her health & recovery.Please advice.

My email address is dominicbenjamine@hotmail.com

capellibella

31 years old Rhabdomyosarcoma found in sinuses
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

Iammyfatherskeeper

My Father

My name Jamie and my Father has Rhabdomyosarcoma.

2 months ago my Father had a biopsy taken from his nose (Dad doesn't do doctors so when his stuffed up nose didn't clear up after 3 months he went to see an ear nose and throat doctor) we were nervous because the doctor said she couldn't be sure but she thought he had lymphoma. The doctor set up an appointment with the oncologist next door and when the labs come back he would have a conciliation with that doctor. After my Daddy called a bunch of times they said the labs were back and the appointment was set for 2 weeks later (it took almost 2 weeks for those labs) When Daddy went to see the oncologist he said he thought it was a rare cancer that they had only seen in Asians (only he is Caucasian) but it was lymphoma. The doctor said he didn't like the way the lab results said so just to be sure he world send it to the Mayo Clinic to have confirmation and start a plan of action. Well a week goes by and no word so we call the oncologist office to have them say they'd call with the labs were back (another half a week goes by)The ear nose and throat office called and said the doctor wanted to see Daddy and of course we wanted to know why but they said just be here tomorrow to discuss it; he went and the doctor said well you don't have lymphoma but you have a rare cancer Rhabdomyosarcoma and the BEST place is the University of Michigan and we'll make you an appointment and call you back (2 days go by) it bothered me that the doctor office didn't call with an appointment for him so I called the U of M and I told them his story- they said the doctor office never called! I have all the info they wanted so the sarcoma centers director could look at his file and make the first appointment- we are now waiting for the appointment. We don't know the stage or any real info I'm in need of answers and I'm stuck waiting for them. Daddy is 65 and the BEST father and papa in the world and he doesn't want anyone to know - I have all this info but no info and I have nobody to talk to -I know he's scared and I'm scared. .. I just can't lose my Daddy right now I'm not ready and it's hard to process this info alone. .