Rhabdomyosarcoma Support Group

I do, but i was just DX so no information

My sister was just diagnosed with this type of cancer in May 2009. She is scheduled to start treatment next week. Are you dealing with this cancer too?

Hi all -

I was diagnosed in fall 2007 with embryonal rhabdomyosarcoma in my prostate. I had a radical surgery to remove my prostate followed by radiation therapy and a year of chemotherapy. I wish that were the end of the story but I'm slogging through still battle lung and possibly now liver metastases. You have to stay on top of your game and make sure you get a doctor or collection of doctors who aren't going to give up on you. Most of all, you need to not give up on yourself. I've had a lot of experience over the past couple of years, so please ask away if I can be of help. BTW, I'm 30 yrs old.

ive had the chemo although i only had 3 out of 8 cycles as i couldnt go through anymore so gave up, due to start radio soon been fitted for a mask for my face to hold me in place as have to have it in my cheeks area, should start it in the next coupl of weeks all being well and having 6 weeks of it.

My nephew who is in his 20's has rhabdomyosarcoma which was found in the chest/ lungs. He is being treated in Ontario Canada. Rhabdomyosarcoma is most commonly found in children and is rare in adults. They originally thought he had embryonal rhabdomyosarcoma but they are not sure now. He eventually went on to have one of his lungs removed and then had radiation and now is going through more chemo. If you research embryonal rhabdomyosarcoma it is generally the least aggressive of all rhabdo's. I wish you the best and hope that you do well.

Dear Members,

Just a note from a survivor I hope my story can help you get thru one of the most difficult things that I had ever went thru.

Mine was dx'd as Embryonal Rhabdomyosarcoma. Though sorry to say partial childhood - at the age of 17 (Male). This was in the year of 1990 - yes long term survivor. My onco had only seen 1 other case even though she was at the end of her career and first was initial residency. Was aggressively sent in for surgery to remove growth in teste area fully engulfed was a visible tumor growing into sack sorry for the "Full Disclosure" but tumor was large enough to not be able to put my hand around and grew up into the area - surgical removal was next day after doctor visit - did not know what was going on - way too quickly, but was very important to get it out in their minds. Post surgery - was told approximately size of football - nice way to say to 17 year old boy. Underwent full thoracic ct scan before left hospital. In 12 days was re-admitted to hospital for 2nd tumor removal. This time larger - started at base of breast bone and went to just above prostate - tumor had fully engulfed left kidney, and grew the length of that Central Vena Cava - pulling it's nutrients from the Vein contact at the Kidney - Doctor had peeled 2nd tumor away without bursting either first or second - removed many lymph nodes in the area (was staged at 4 due to sizes). Was sent home after recovery they informed my mother to be prepared keep me comfortable and basically expect the worse. Next step was Onco / Radiologist visit - got 2nd opinion to make sure my onco was on the right track, and they had both agreed - no radiation - cells were removed surgically no need, but Chemo was given - slated 6 rounds Cytoxin, Vencristine, Adriamician - remember 1990 here, went thru first round at home Big Mistake! Next rounds were administered 4 days in patient, they also understood I would need some assistance with a special nausea control - they called it ADR - still do not know the complete contents of that one, but I do know it was administered and remember nothing until the next morning - still not enough must administer the first 2 days which was max - please understand there were no medications for Nausea for 17 year olds other than 1 which caused a huge allergic reaction, Thankfully things on that have changed, also the treatments available in Chemo have dramatically changed - all making for a simpler but still effective treatment cycle. Made it thru 5 of the 6 cycles, and then Chemo Poisoning occurred - over max dosage causing White blood cells to radically die and boil up thru skin - my body could not shed them fast enough so they basically just bubbled up thru the skin. Caused the 3rd surgery 10 days in patient and almost no immunity so they provided via IV for that duration. Have spent years researching - after my treatments - Embryonal is very fast growing they figure 1 to 2 months growth for my tumors measured in feet - they also figure the faster growing the more responsive to aggressive treatment cycles. Survival rates have came up very much since 1990, and all I can tell you is that I live a very normal life post cancer - my children was adopted due to sterility from something - but normal life has been very possible at least in my case. In closing - my prayers are with each and every person undergoing something like this, and most importantly hopefully from my experiences - there is still hope yes even from stage 4.

Two months ago my brother was diagnosed with rhabdomyosarcoma , the tumor is in the chest with metastasis in the lung and in liver , and the doctor said that no surgery , he got 3 session of quimo and after a scan they switch to radiation and quimo I would like to help him looking for a experience place in this type of cancer but I don't know where to go ,please somebody is in a similar situation?

Best wishes to all of you. My 21 year old son was first diagnosed with Rhabdomyosarcoma in late January 2008 when he was 19. Initially his CT scans were always clean, the cancer showed in the tumor that was removed and in the lymph node dissection. He had 6 cycles of chemo, and struggled through them. 3 months after treatment ended, cancer showed for the first time in a scan. This time we went to a Sarcoma center to see about a clinical trial. They recommended their standard treatment which included radiation. He completed 12 cycles of chemo and 5 weeks of radiation. He had a much better quality of life during the chemo the second time. His scan after 10 cycles of chemo showed no cancer. He will be checked again this January.
My advice is to get a support team of friends and family. Take advantage of anyone offering help; if they offer get them committed to something specific (take you to and from treatment, pick up groceries, etc). If treatment is preventing you from working, contact Social Security. If you are too young to qualify for SS go to the SS office and ask about SSI.

Hello everyone, my son has recurrent rhabdomysosarcoma he is 22 years old and has just finished chemo in December 2009. He isn't being offered any further treatment and we are all finding this hard to cope with. Any suggestions?

There may be a genetic predisposition for Rhado’s but I strongly believe that the toxins in our environment cause the cells to mutate at a rate that our bodies can’t heal which results in cancer, in my sons case the predisposition was Rhabo. In addition to conventional treatment, the first thing I strongly recommend is to detoxify your environment as much as possible and start an aggressive course of integrative meds to boost the immune system. Its no point in going thru all the treatment without eliminating all possible causes. My son was diagnosed at 4yrs of age with Embryonal Rhabdo on July 4th 2008, a 6.5cm tumor in his head that had metastasized to his bone marrow making it stage IV cancer. He went thru 42wks of VAC chemo and 6wks of proton radiation, his tumor was inoperable. It is now Feb 2010 and Max is staying ahead of the battle, he is doing great. While we stress and agonize every day in fear it will return, we are doing everything we can to give him the best chance of survival. We have added intense immunotherapy to his daily routine and we have detoxed our home.
(1) Eliminate possible causes of cells mutating - Detox your home: Organic mattress and linens. No fire retardants on clothes and furniture, no foam in mattresses or carpet underlay (emits toluene). whole house water filtration, carbonized for entire house and reverse osmosis for drinking. No more plastic in the microwave that leaches toxins (not even micro popcorn, the bag has plastic lining). hard wood flooring E0 rated(low VOC, minimum formaldehyde) or wool carpet.
(2) Boost health and immune function - Integrative meds: IP6, Insotol, Agaricus, Astragulus, Catsclaw, VFT, Parthenelode, Lysene, Prolene, Pfaffia, Life start, beet crystals, vitamins.

Its a tremendous amount and work but the fear of the monster returning keeps us going.