Hey everyone. Thought I'd introduce myself a little bit and join in the talking :)
I've been so glad to read your stories and advice as my husband begins his fight.His tumor (in the center of his thigh muscle) has long 'fingers' which would make immediate removal difficult, so he is beginning chemo and radiation to hopefully shrink that evil bastard! He got on a clinical trial (ARST1321) which combines doxorubicin, ifosfamide and pazopanib. It's a pediatric trial (he just made the cutoff at 29) so it's easy to keep things in perspective here on the pediatric floor. The children here are brave and funny and beautiful.
Anyway, he started his first round of chemo this past weekend, and he's still in the hospital until Wednesday. His treatment center is 2.5 hours away, so I hate that I'm not able to be there daily (though I know the rest is probably good for him- I always have our three young children in tow and they are draining!!)
I'm wondering if anyone has had positive results with pazopanib, I know the results vary. I'm almost afraid to ask, but more afraid to know so little :)
Pazopanib is also called votrient and you can find a bunch of discussions on this drug by clicking the "Discussions" tab at the top, then write the name of the drug in the search box.
It will be interesting to find out how it works in combination. It's expected to give better results. So keep us posted on the your husband's progress! Good luck to him!
Hi - I wish your husband and you all the very best. I'm currently taking votrient (pazopanib) since June. I think my results have been promising. One tumor that was 1 cm shrunk and is gone completely, two others have shrunk and one grew from 1cm to 2 cm in three months. I'm just happy that I don't have any new unwanted gremlins (my nickname for them) in my lungs. I will tell you the votrient has been so much more tolerable than standard chemo. That I'm happy about, the side effects are bothersome but tolerable and I'm still able to enjoy life. My synovial started and continues to be in my lungs. I've undergone two rounds of different chemo cocktails and radiation. This is one pill that I'm hoping keeps me at lease stable for many more yrs until we have a more effective treatment. Hope the combo treatments works great and he becomes NED (no evidence of disease)! Hope this helps.
Our son (now 17)had doxorubicin and ifosfamide in 2010 for 7 treatments and this cancer stayed away for 2 years and 3 months. First time his synovial sarcoma was in his upper leg. Then last year it traveled to his lung and after surgery he started using pazopanib. First started with 800mg, but after one month we reduced it to 600mg and one month later to 400mg, due to the side effects. He used the 400mg till two weeks ago and sadly we had reoccurrence in his other lung. We are now waiting for test results to see what other chemo's are available. What works for my son… He keeps being positive and exercising a whole lot, so the side effects are minimal. Never Ever Give Up!!
Sorry to hear about the reoccurence. Mine continues to pop it's head too. Does your son feel tired from the side effects? I loved working out and would like to but find it difficult with my exhaustion. Does he do anything for the exhaustion that allows him to work out?
dutch said:
Our son (now 17)had doxorubicin and ifosfamide in 2010 for 7 treatments and this cancer stayed away for 2 years and 3 months. First time his synovial sarcoma was in his upper leg. Then last year it traveled to his lung and after surgery he started using pazopanib. First started with 800mg, but after one month we reduced it to 600mg and one month later to 400mg, due to the side effects. He used the 400mg till two weeks ago and sadly we had reoccurrence in his other lung. We are now waiting for test results to see what other chemo's are available. What works for my son… He keeps being positive and exercising a whole lot, so the side effects are minimal. Never Ever Give Up!!
Prayers go out to you and your husband. So glad to hear that you are being aggressive! I was on Votrient or Pazopanib for 21 months. It stabilized my tumors within the first six months and than shrank them to the point where my lymph nodes in my chest cavity where no longer considered enlarged. Currently in an immunotherapy clinical trail at NIH and doing great. So grateful for my wife who was been by my side during our 22 year battle. It can be tough but the two of you will get through it and your love will be more deeply rooted.
Thank you everyone! We are feeling hopeful about our treatment plan, and VERY glad that we decided to be as aggressive as possible early on. It's been really tough for him already (you all know chemo is no picnic), but he's handling it like a champ and looking forward to the end of it this summer. I am thinking of you all and wishing you the best possible things in the fight.
My daughter had synovial sarc I her leg. Responded well to Doxy/Ifos and radiation. The tumor was removed, with clean margins, and we found lung mets 1 year later. We started Votrient, and one year later the tumors were growing at an alarming rate. 2 VATS, a lobectomy, and thoracentesis later… We’re doing iv chemo again. I’m very skeptical of Votrient. I eis that we would have skipped it, and moved on to radiation, or surgery. Good luck with your treatment.