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4 years and still fighting Synovial Cell Sarcoma


#1

My son's cancer (Synovial Cell Sarcoma) is back. 3mm on his right lung which is his only lung since this cancer took his left lung last year. We have spent 4 years in and out of Texas Children and MD Anderson hospitle. He is now 18, last year of high school doing very well and being very strong.

We will be starting on test drug Tivantinib Thursday for 28 days. Has anyone tried this with results?

If this does not work the Dr. are wanting to try Pazopanib depending on the tumor size before we decide to remove it.

I have also been researching treatments at Issels in Ca. and Gene T cell testing at NIH.

I would like to hear from any and all that have any information on the two drugs (Tivantinib and Pazopanib)? Or any other treatments.

He has always been and alwasy be a fighter.


#2

Pazopanib is also called votrient. A lot of people here are taking this drug. You may want to search the discussions section for details about outcomes and side effects.

Tivantinib is a c-Met inhibitor. c-Met is apparently often over-expressed in synovial sarcoma but in the epithelial area and not in the spindle cell part:

http://www.ncbi.nlm.nih.gov/pubmed/9788260?dopt=Abstract

http://www.ncbi.nlm.nih.gov/pubmed/9565343?dopt=Abstract

Does that mean, using a c-met inhibitor would only work on part of the tumor and not all cells of the tumor?

There is one person on the General Sarcoma Online Community at ACOR,org who went to Issels and another who did the T-cell trial at NIH. You may want to join ACOR to contact them:

https://www.acor.org/listservs/join/120

Is surgery an option? Were both lobes removed in the left side?


#3

Thank you for the information.
Surgery is an option right now but Hunner chose to try the test trials now since the tumor is so small. We had to remove his entire left lung due to the tumor size and the fact it collapsed his air ways to the lung and the tumor was up against his heart . The skin on his heart was removed as well and replaced with some type of fiber.


#4

Votrient aka pazobanib, has done a lot of good for a lot of people. My own personal experience began good. I was even having consecutive check-ups with tumor shrinkage. Unfortunately it does have the potential to wear off. I only got about 10 months before it began to lose effectiveness.

That said, pazobanib is really easy to deal with. Oral medicine, only side effects I had were loss of pigmentation, especially in hair, and some weird changes in taste, ie I couldn't tolerate very spicy foods like I used to...


#5

He sounds like an incredible kid.


#6

He is Scott


#7

God Bless you and your son. Speaking as a mother of a son who had SS, don't do any more surgery, it will just spread.I would not try any more chemo drugs. let him enjoy his senior year. I would go the nutritional route. If you can get the book Alive and Well by Philip Binzel M.D.

Synovialmom


#8

I have been battling SS for 21 years now. I've had 7 lung surgeries and a partial lumbectomy was done on my left lung. I have pretty much been on every chemo regimen for SS during this period and have had multiple radiation therapies throughout my body bc surgery is no longer an option for me. I'm currently taking Vortient (Pazopanib at 600mg.) which had to be reduced from the max of 800mg and have been taking this since Aug. 2012. It seems to be working for the moment bc in Nov. I experienced some shrinkage to one of my tumors. Side effects will vary depending on the individual, but I experience low WBC's, chronic fatigue, loss of appetite and taste, and high blood pressure. My hair has turned white all over my body and my pigmentation has lightened a lot and I'm noticing a little toxicity in my finger nails and toe nails bc they are turning dark. For the most part, it's pretty easy bc it just taking pills, but it's potency is pretty significant.

I have to share that the most successful regimen I have ever been on was the Trabectedin drug (Yondelis Trial). I was in this trial for 5 years (64 rounds) before it stopped working on one of my tumors. It was a 24-hour infusion every twenty-one days. During this period I had a varied reponse (shrinkage, calcification, and stability). Four days after treament, I was really good and felt like l had some normalcy bc I was bascially doing everything that I wanted without limitations.

Today, I focus on eating healthy to help counteract the side effects and staying positive and not giving in. Keep fighting! God bless you and your son!


#9

Great post Fighter!

imaFighter91 said:

I have been battling SS for 21 years now. I've had 7 lung surgeries and a partial lumbectomy was done on my left lung. I have pretty much been on every chemo regimen for SS during this period and have had multiple radiation therapies throughout my body bc surgery is no longer an option for me. I'm currently taking Vortient (Pazopanib at 600mg.) which had to be reduced from the max of 800mg and have been taking this since Aug. 2012. It seems to be working for the moment bc in Nov. I experienced some shrinkage to one of my tumors. Side effects will vary depending on the individual, but I experience low WBC's, chronic fatigue, loss of appetite and taste, and high blood pressure. My hair has turned white all over my body and my pigmentation has lightened a lot and I'm noticing a little toxicity in my finger nails and toe nails bc they are turning dark. For the most part, it's pretty easy bc it just taking pills, but it's potency is pretty significant.

I have to share that the most successful regimen I have ever been on was the Trabectedin drug (Yondelis Trial). I was in this trial for 5 years (64 rounds) before it stopped working on one of my tumors. It was a 24-hour infusion every twenty-one days. During this period I had a varied reponse (shrinkage, calcification, and stability). Four days after treament, I was really good and felt like l had some normalcy bc I was bascially doing everything that I wanted without limitations.

Today, I focus on eating healthy to help counteract the side effects and staying positive and not giving in. Keep fighting! God bless you and your son!