rhabdomyosarcoma alveolar 15 y/o Stage 4 Group 4

hypnoron
hypnoron Member Posts: 1
edited March 2014 in Childhood Cancers #1
Good morning,

I am looking for like type of cancer and information. My background is a paramedic. I typically don't do long term disease processes, however, my teenager is being annoyed by ARMS cancer. I have probally spent more time learning about cancer cells, the limited research that is out there and the treatment selections. I don't mind sharing what I do know. I found that talking about it helps me. I understand clearly that the LORD has my daughter, and the doctors have her best interest, however, I do ask a lot of questions. Here is the case.

15 y/o female, no prior medical history. dx:Rhabdomyosarcoma alveolar metatasic to bone marrow. We do get blood transfusions, however the frequency has dramatically decreased. No brain or spinal cord infiltration. Patient is on protocol COG ARST 0431. Patient is very responsive to chemo. We don't have a primary source, so radidation and surg, aren't options. Patient is up moving and acting normal without any side effects from any treatment. Evaluation week came, results reports "Dramatic improvement" in overall disease process.


The research that they have on the internet is terrible, I mean aweful, and the numbers are all over the place without consistancy. I have researched this rare form of cancer and have emailed over 20 research physicans and have had a poor response, however it is the summertime.

What have you found?



By the way, we have a very positive attitude, and we pray alot, and we share this with our friends. We have found that http://www.lotsahelpinghands.com/ really has come in handy. I highly suggest it.

Thank you. Looking forward to your responses.

Comments

  • gmarkuson
    gmarkuson Member Posts: 2
    #2
    rhabdo
    hey i have a 9yr. old daughter with alveolar rhabdo. i don't have much luck looking for reasearch or the cancer. I finished my paramedic course when she was diagnosed a year ago and just have to take the written test left. congratulations on the dramatic improvement. we just finished a year into treatment and are waiting to see if we can biopsy to find out if there is cancer still left or if it is just scar tissue. The tumor was or is in here sinus cavity. If i find anything out i will def. let you know
  • Deli4gs
    Deli4gs Member Posts: 9
    #3
    15 year rhapdo
    Hi - I have a dear friend whose daughter also has this dreaded disease. She has been battling since Sept. 2008. She is strong and a fighter and she too, was diagnosed at age 15. She has had surgery, chemo and radiation during the first year. Unfortunately, cancer reappeared right around the new year and has been back on chemo and doing very well. Her family, friends, neighbors all love her and pray for her complete recovery. I am an advocate of nutritional/alternative healing and any others who came into her life. You may want to look at wheat grass juice, alkaline diet, alkaline water and vitamins. If you have a local health food store that has "natural" food, you may want to visit with them.

    I wish you and your daughter health, happiness and peace.

    Jackie
  • eugene didenko
    eugene didenko Member Posts: 2
    #4
    Rhabdomyosarcoma Alveolar
    Hi,
    my freinds in Spain have a girl with Rhabdomyosarcoma Alveolar. They heard that in US there is a new remedy that is being injected to cure this type of cancer. Do you know anything about it?
    Thank you very much.
  • eugene didenko
    eugene didenko Member Posts: 2
    #5
    Rhabdomyosarcoma Alveolar
    Hi,
    my freinds in Spain have a girl with Rhabdomyosarcoma Alveolar. They heard that in US there is a new remedy that is being injected to cure this type of cancer. Do you know anything about it?
    Thank you very much.
    Eugene
    917-545-9827

Discussion Boards