Aveolar Rhabdomyosarcoma

djstallworth88
djstallworth88 Member Posts: 1
edited March 2014 in Sarcoma #1
I was diagnosed with rhabdo on Nov 30th, 2010. I am being treated at children's hospital in oakland. I am 19 years old, and the cancer showed up on the right side of my face. I am currently in a clinical trail for chemo therapy and I am also doing radiation treatments on my face five days a week. I have responded well to the treatments so far, but it would be nice to talk to some people that are currently going through the same treatment, or who are survivors of this cancer. Its been hard to find information about this because I keep pulling up stories about pateints that are under the age of 10. please contact me at djstallworth88@rocketmail.com

Comments

  • Ginachan
    Ginachan Member Posts: 4
    #2
    Hey Hey!
    My empathy to you! I was first diagnosed when I was 19. It's tough to find someone to talk too, because all the stories and info come from patients who are ten and younger. I understand, I went through the same thing. Feel free to ask any questions you might have, though I'm not sure what kind of help I will be. I'm still looking for "the answers" myself.

    I am now 27 years old, an in remission for the second time. The occurance of this disease has presented itself atypically, in every way. But I can assure you, I do empathize with the treatment process. Keep your head up. I'll talk to you soon.
  • Cheri5kids
    Cheri5kids Member Posts: 1
    #3
    Aveolar diagnosis Dec 17 2010
    I am 44 and too have aveolar rhabdomysarcoma that presented itself on the right side of my cheek/face area. I thought I had a bad sinus infection and when they went in for surgery, they found the tumor. I was referred to MD Anderson Cancer Center in TX. I am just now finishing my 6th round of chemo (Vincristine, Ifosfamide and Doxorubicin). I am not sure what will be next but I have been told radiation or surgery. I had a super response to chemo. Within 10 days of chemo, my tumor was not visible externally. It was very large and very noticible before the chemo. I will be rescanned mid May and presented to their tumor board which will decide my next move. Thats where I am at right now. I understand the frustration trying to find anything positive about this cancer. At least you are still in your teens. My age is really rare. Go figure. Have you had any results with treatment?
  • GlassGuy66
    GlassGuy66 Member Posts: 3
    #4
    My Son
    My son was dx with rhabdo in the left sinus, stage I at age 17. Chemo, surgery, radiation, chemo was the treatment. That was 10 years ago, we are very fortunate and thankful and pray for those going through this, it is the hardest battle a person can face.
  • GlassGuy66
    GlassGuy66 Member Posts: 3
    #5
    My Son
    My son was dx with rhabdo in the left sinus, stage I at age 17. Chemo, surgery, radiation, chemo was the treatment. That was 10 years ago, we are very fortunate and thankful and pray for those going through this, it is the hardest battle a person can face.
  • ilhanbircan2009
    ilhanbircan2009 Member Posts: 1
    #6
    GlassGuy66 said:

    My Son
    My son was dx with rhabdo in the left sinus, stage I at age 17. Chemo, surgery, radiation, chemo was the treatment. That was 10 years ago, we are very fortunate and thankful and pray for those going through this, it is the hardest battle a person can face.

    my son too
    My 3 year-old son had a neoplasm in the nazolabial part under the right nose wing which could only be felt by touching. After primary surgery it was diagnosed RMS alveolar and only 10 days later the surger made a second operation( large excision) by resecting half of the right nose wing. After this surgery there were no residues of tumour, metastases or lymphatic nodes. A week later pediatric oncologists applied chemotherapy of 4 cures dense( vincristine-cyclophosphamide-doxorubicin). Now we've finished the 8th cure/course of chemo. Is our second surgery and treatment a true one? Is it possible for alveolar type to occur in such part of the body especially at the age of 3? When can we have reconstruction surgey? Can we have financial support for our treatment? We live in Bartın/Turkey. Thanks in advance..
  • DHY
    DHY Member Posts: 2
    #7
    Cheri5kids said:

    Aveolar diagnosis Dec 17 2010
    I am 44 and too have aveolar rhabdomysarcoma that presented itself on the right side of my cheek/face area. I thought I had a bad sinus infection and when they went in for surgery, they found the tumor. I was referred to MD Anderson Cancer Center in TX. I am just now finishing my 6th round of chemo (Vincristine, Ifosfamide and Doxorubicin). I am not sure what will be next but I have been told radiation or surgery. I had a super response to chemo. Within 10 days of chemo, my tumor was not visible externally. It was very large and very noticible before the chemo. I will be rescanned mid May and presented to their tumor board which will decide my next move. Thats where I am at right now. I understand the frustration trying to find anything positive about this cancer. At least you are still in your teens. My age is really rare. Go figure. Have you had any results with treatment?

    Embryonal Rhabdo, stage IV
    My husband was recently dx'ed with embryonal rhabdo at age 32. He's getting his treatment at MD Anderson with your same chemo regimen. He also has a very good response with chemo treatment. We're in similar boat in that more decision to be make once he's done with his 6th cycle of chemo. Hopefully by now, you're done with the treatment duration and is now in remission!

    God Bless!
  • koch55
    koch55 Member Posts: 1
    edited December 2016 #8
    Cheri5kids said:

    Aveolar diagnosis Dec 17 2010
    I am 44 and too have aveolar rhabdomysarcoma that presented itself on the right side of my cheek/face area. I thought I had a bad sinus infection and when they went in for surgery, they found the tumor. I was referred to MD Anderson Cancer Center in TX. I am just now finishing my 6th round of chemo (Vincristine, Ifosfamide and Doxorubicin). I am not sure what will be next but I have been told radiation or surgery. I had a super response to chemo. Within 10 days of chemo, my tumor was not visible externally. It was very large and very noticible before the chemo. I will be rescanned mid May and presented to their tumor board which will decide my next move. Thats where I am at right now. I understand the frustration trying to find anything positive about this cancer. At least you are still in your teens. My age is really rare. Go figure. Have you had any results with treatment?

    Rhabdomyosarcoma diagnosed 09/16 at age 61. What to Expect

    At age 61 I had what was originally diagnosed as an epiglottal cyst removed from the left base of my tongue. Three weeks later Sloan Kettering diagnosed as rhabdomyosarcoma with a small cell/neuroendocrine component and two weeks later MD Anderson confirmed. In one week I will start my second of six, five day rounds of Vincristine, Ifosfamide and Doxorubicin followed by 2 weeks of recuperation. I drove myself to and from treatment for the first round and really did not start feeling sick until my 3rd or 4th day, but it got progressively worse until 2 1/2 days after the 5th day of treatment but has subsided for the most part. Yesterday my hair started to fall out in clumps and I cut it down with a #3 clipper. Any advice? 

     

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