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Posts: 1
Joined: Dec 2017

Chemo for rhabdomyosarcoma

I am 26 yrs old and I was diagnosed with Spindle cell/sclerosing rhabdomyosarcoma. The tumor was in my lower left leg and I was amputated after two rounds of chemo. The chemo wasn't effective and the tumor size increased during chemo. My oncologist suggested 4 rounds of post-operative chemo but the effectiveness is uncertain. Since I was very sick last time I had chemo, my oncologist lets me decide whether I would continue chemo. Not sure what to do now. 

Posts: 1
Joined: Jan 2018

We are looking for clinics for 10 months old boy with rhabdomyosarcoma cancer

Hello to everyone! I am a volunteer. We are looking for clinics for 10 months old lovely boy Svyatoslav with rhabdomyosarcoma cancer. I will be so grateful to everyone who provides us the list of clinics over the world with effective/experimental technics of treatment or give us the advise. The boy has gone through the chemotherapy here in Russia and unfortunately, it has not worked. We are in a great disappointment and we are confused. Also, probably there are some unique experimental methods that can help us, we are able to participate in them. 

Posts: 4
Joined: Sep 2017


Does anyone have any positive and hopeful lartruvo experiences. I have rhabdomyosarcoma, spindle cell variant (either that or PUS/UPS...the doctors really can't wrap their head around it). I did three cycles of VAC. When I started I was a stage IIIc, between my dx in August and now, I've developed lung mets...too many too operate they say...some of which have grown a cm in a month. VAC did not control the lung mets. They continued to grow. My primary tumor site at my leg hasn't grown. They are switching my treatment to Dox and Lartruvo. Does anyone have any stories or advice?

Posts: 1
Joined: Nov 2017

High Grade Ostesarcoma with metastases on bones & lungs


My child (13 years old) has metastases osteosarcoma (lungs & bones) and the chemo failed !


He becomes weak and painful. We are using now Rick Simpson Oil (RSO) at home.


We are looking for alternative promising treatments. Any help will be most appreciate  


Posts: 2
Joined: Oct 2017

Stage IV Rhabdomyosarcoma

Hi all,

I'm a 30yo male diagnosed with stage IV Embryonal Rhabdomyosarcoma. I wanted to know if there are any survivors or fighters for stage IV rhabdomyosarcoma. 

Posts: 1
Joined: May 2017

Retroperitoneal Liposarcoma survivor stories needed to encourage me

Hi. I'm 5 months post surgery after having had a 5lb Liposarcoma removed from my abdomen. I was fortunate that I did not lose any organs during surgery and was deemed to have had a 'surgeons dream' of an operation due to the unusual lack of complexity. No treatment afterwards, follow up surveillance once a year. I should be delighted but deep down, I'm still as scared as hell. All I can find is stories of recurrence and multi operations getting more complex with time.

Pattie R
Posts: 5
Joined: Mar 2017

Leiomyosarcoma of the Inferior Vena Cava

I am a 71 yr old female in excellent health, felt good and looked GREAT (so I was told constantly, LOL) until March 2017 when I was diagnosed with Stage 2 Leiomyosarcoma in the retroperitonal area. The tumor was 5.5 cm when it was found. The tumor had invaded and blocked the Inferior Vena Cava, which compromised my right kidney. My body miraculously created collateral veins to continue to function as required. After a biopsy confirmed the diagnosis of LMS I was referred to University of Miami Sylvester Comprehensive Cancer Treatment Center, which has Sarcoma specialists.

Leanne H
Posts: 1
Joined: Sep 2017

Can you help me find a treatment for metastasised osteosarcoma

Our 18 year old son was diagnosed with osteosarcoma in his leg in late November 2015. After 8 months of chemo and limb-saving surgery to remove the tumour, we were told his chances of survival were very good. Sadly, in July this year a small spot was detected on his lung one week from being 12 months since his last round of chemo. During lung surgery to remove the spot the surgeon found two other microscopic spots in the same lung which had not shown on any CT or PET scans. He removed all 3 spots which proved to be malignant.

Posts: 4
Joined: Sep 2017

High grade rhabdomyosarcoma

Hello all. I am a male in his 60s that just got diagnosed with high grade rhabdomyosarcoma. It originated in my lower right leg just below my knee. My tumor is greater than five centimeters. There is very little information in regard to this cancer in adults. I start chemo (MAID) soon and the doctors have indicated my leg will need to be amputated after chemo and then I must go through more chemo.

Posts: 1
Joined: Aug 2017

Need advise please


I had an ultrasound and a ct scan two weeks ago and doctors think I have a fairly large

large retroperitoneal liposarcoma and are suggesting a pt scan and biobsy as next steps

steps. I then did some reading about this cancer and have some thoughts. If you 

are familiar with this subject may I have your feedback please.

My thoughts right now:

1. I have read that a biobsy may not be a good idea because it will "seed" more

cancer cells.

2. Will a pt scan not add more (bad) radiation?


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