http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/feed http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Sun, 19 May 2013 16:02:27 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/577793-i-want-to-find-people-to-talk-to#10302926 Where are you from or where are you being treated? You need to follow the protocol that the Doctors want you to follow. I pray that it won't come back. I had Rhabdo three times in my leg. Let me know if you'd want to talk. :)... Tue, 04 Dec 2012 12:12:13 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/10278864-one-survivors-story#10278864 Good morning, My name is Wendy. I was dx with arms in August of 2009 and am now healthy :) I created this video as an expression of my journey and am honored to share it with this list. You can find it here -- May you all find some kind of light on this very difficult journey. It is what will get you through. With love and light, Wendy... Sat, 24 Nov 2012 05:55:16 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/3881847-i-hate-cancer-rhabdo#3881847 I just lost my son Dominic he was six years old . He had been battling rhabdomyosarcoma the alveolar type since he was two years of age . I have three boys David Dominic and Daniel . Dominic was my middle child my daredevil the one that looked just like his mom (me) he left this world on may 23 2012 I miss him and on most days I wish I was dead... Tue, 03 Jul 2012 01:03:21 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/3521995-hope-for-hannah#3521995 My beautiful niece Hannah was diagnosed with stage IV rhabdomyosarcoma on December 17. She is seven years old. I am reaching out to this support group in an effort to find people who truly know what we are going through. My sister is a single mother and since she had to quit her job to care for Hannah 24/7, my husband and I are having them live with us so she can focus on Hannah and Hannah can focus on getting well. I would love to hear from other parents who are experiencing this same nigh... Tue, 28 Feb 2012 14:32:06 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/3149783-lost-my-son-in-a-month-from-this-disease#3214222 Yes...well, my heart is so broken but I know he would want me to do good things in his memory and stay a mom to his brothers and sisters, it is just so hard. Perhaps I will contact the young rabbi who was so close to him who wants to do such a project too, when I have the energy. It is so hard to get up in the morning to such a bleak world, but somehow I seem to be doing it. Thank you for your caring messages.... Wed, 16 Nov 2011 03:48:06 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/3149780-new-member-needing-support-in-my-grief#3149780 I hope it's OK for me to be here - I don't want to make people who are fighting this horrible disease sadder than they already are, but I need to share with others who might understand from their fights with the same cancer that took my son away from me so fast that I can hardly breathe. On July 19, 2011, my until then totally healthy 24 year old son Eyal, who had gone to the doctor a week earlier with some stomach pains and was sent to the hospital for testing, was diagnosed with a 20 cm can... Sun, 23 Oct 2011 00:56:09 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/2504740-rhabdomyosarcoma-videos-on-mdjunction#2517064 Hi - it's me again... I got many PMs from members asking to upload their own videos. At this point we can't add to the library . but hope we will be able to soon, we understand the importance of that! and another (not related) topic...Two weeks ago we added to the (now available on chrome too) the Groupon application that shows you the hottest daily deals in your town, every day. We received great feedback from the people using the toolbar so I suggest trying it out!!! CU roy... Wed, 09 Mar 2011 03:16:03 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/2085689-hello-i-hope-im-ok-to-be-here#2085689 hello to all, I hope that it's okay for me to be in this group, I'm not directly affected by Rhabdomyosarcoma but I do have friends with other forms of cancer so I know how much of a struggle it can be. Well no, I can't imagine what you and your families have gone through but I can empathize and want you to know that you are all very strong people and have strong children. I am doing research for a novel that I'm writing where a character has Rhabdomyosarcoma and so I was looking for a support... Mon, 08 Nov 2010 17:31:52 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/introductions-personal-stories/94845-reafter-treatment#1948816 I'm new to this group as my daughter was just diagnoised 3 weeks ago but we are already going through some challenges. She refuses to use the mouth wash they have prescribed, the meds she needs to take twice a day, she physically refuses to get her finger pricked for her counts...it's just not fair being 3 and being made to go through this. I do my best to stay focused on what's important letting her know there is no other choice but to get it done, however, it's heartbreaking.Post edited by: ... Mon, 27 Sep 2010 08:28:16 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/introductions-personal-stories/1948796-3yr-old-daught-just-diag-embryonal-rhabdo-stage-iv#1948796 My 3yr old daughter Jordyn has embryonal rhabdo in her jaw/eye/brain area. She is Stage IV and has been classified as high risk b/c she has metastaic disease in her lungs. She was diagnosed 9/11/10 (3 weeks ago). We are currently seeking treatment at the Univeristy of Iowa Hospital but in the works to getting to M.D. Anderson, TX. Looking for information about what to expect in our future with chemo/radation/life etc.... Mon, 27 Sep 2010 08:20:10 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/medicine-treatments/1499960-questions-for-arms-professionals#1926586 Hi my daughter has erms and I, too work in the medical field. I have found that giving vitamins , ribraax and emu oil, reiki and prayer has helped my daughter immensely. High doses of vit c is shunned by many of the medical professional as they state it can reduce the effectiveness of the chemo drugs. I do not personally believe this and have done a lot of research that supports the giving of vit c especially while the immune system is depleted. We found an excellent nutritionist atropath and... Tue, 21 Sep 2010 08:17:31 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/1913581-facebook-movement-needs-your-vote#1926522 Hi I support the movement to have childhood cancer a topic of discussion on oprah. My 11 year old daughter was diagnosed last year with rabdomyosarcoma. It would be great to see some of the positive stories and discussion of latest treatments available to help kids/ families with post treatment recovery. I truly believe in supporting the child from the beginning with positive thoughts and other ways such as reiki/ prayer/vitamins / herbals and would be very interested to hear of other peoples e... Tue, 21 Sep 2010 07:51:09 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/medicine-treatments/1509138-after-care#1509138 Hi everyone.. I am new and am searching for info.. My daughter was sick from ages 4-6 with Rhabdo in her pelvic region. and was treadted with the national protocal. She is turning 10 this july and is doing great.. we do have issues.. learning disabilities and bladder.. we are dealing with both well but i am looking for any info or person who have any light to shed on these two issues for post treatments.. aswell as is there any kind of speical after care we should be doing other then our scans.... Wed, 19 May 2010 11:38:11 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/introductions-personal-stories/1499890-newly-diagnosed-rhabdomyosarcoma-alveolar#1500728 My brother was just diagnosed about 3 weeks ago. This is a very challenging disease, and you will find that many doctors think they know what they are dealing with, but they may not. That is especially in our case which is an adult case - even rarer. We were lucky that a friend of a friend is a leading researcher in rhabdo here in Los Angeles. The bigger cities are most likely to have the resources you need. I know there are people at MD Anderson in Texas with experience with rhabdo - it'... Mon, 17 May 2010 06:57:54 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/introductions-personal-stories/644889-newly-diagnosed#1499920 my teenager just got diagnosed with rhabdomyosarcoma in April, and I understand the stress you must be faced with. You must have faith......the opposite of faith is fear. If there is anything I have learned to understand, that I can't do anything to fix it.....It's all up to God and his plan. Are you at a hospital that is apart of COG? ( Children's Oncology Group?) If not, that would be the first step I would take. Please stay in touch with me. Thank you. Ron Miller Paramedic/parent... Sun, 16 May 2010 21:12:38 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/introductions-personal-stories/1413506-newbie#1413506 About two years ago, I lost a friend of mine to rhabdomyosarcoma. He was eighteen when he passed away. To say that this devasted me is an understatement: Traumatized. I've been coping well with the loss now, I just need to come to terms with what happened and connect with others who either have or know someone that has this cancer.... Fri, 16 Apr 2010 16:30:41 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/introductions-personal-stories/1201337-my-niece-andrea-my-lovebug#1201337 Hi! My name is Mandy.I thought I would put my niece's story up. HER name was Andrea Michelle Womble.She was diagnosed with rhabdomyosarcoma in 2008.She was 8 years old.They found it after her mother took her to vanderbilt for facial paralysis. She spent from feb.08 till May 15,2009 fighting this with radiation and chemo it was inoperable.She hung in there.Even going through all that painful stuff she always could make you laugh and always had a smile on her face.She did lose half her body weight... Sat, 30 Jan 2010 11:29:18 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/899644-relooking-for-advice-from-a-carer-of-a-child#1032283 thankyou for e-mail, siloh. I will follow this up. Lauren is doing very well. I wish you all the very best for you and your family.... Sat, 28 Nov 2009 05:15:04 -0800 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/general-support/121283-reupside-down/limitstart/10#829500 Hi Lisa Below is the link I mentioned. :-) http://listserv.acor.org/archives/rhabdo-kids.html... Fri, 11 Sep 2009 13:38:16 -0700 http://www.mdjunction.com/forums/rhabdomyosarcoma-discussions/introductions-personal-stories/222369-renew-member#828001 Hi Lorin, My sister, 29, was just diagnosed with Rhabdo today. I'm not sure which form. there are still many questions unanswered. I'm glad to hear that your son is responding well. It makes me hopeful that my sister will respond well too. Thank you! Lisa... Thu, 10 Sep 2009 19:22:01 -0700