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Synovial Sarcoma - Online Support Group

Oral chemo VOTRIENT


#1

Has anyone heard of PAZOPANIB or VOTRIENT for Synovial Sarcoma mets? My son starts today. We are wishing for a more hopeful 2011.


#2

Pazopanib has shown promising results in the phase II clinical trial in Europe (49% response rate for synovial sarcoma patients). You can find the results here:

http://jco.ascopubs.org/content/27/19/3126.full

I don't think the phase III trial is completed yet. Will your son receive the drug as part of a trial? Good luck to him!


#3

Thank you Elodie! Wonderful article. My son is not on a trial. He is able to recieve the drug AND it is covered under our insurance…thank the heavens! We are so hopeful.


#4

Ellen,

My wife is also on Pazopanib, and has been taking it for about 3 months now. Her first set of scans showed that her lung mets remained stable. The side effects have been very mild for her, especially compared to the chemo regimens she's been on previously. I'd be happy to answer any questions you might have, just let me know. Good luck to you and your son.


#5

Thanks Danny! We are so hopeful. He actually started 3 days ago. We had to wait for approval,etc. So far, he feels no effects. Hope your wife is well.


#6



Danny said:

Ellen,

My wife is also on Pazopanib, and has been taking it for about 3 months now. Her first set of scans showed that her lung mets remained stable. The side effects have been very mild for her, especially compared to the chemo regimens she's been on previously. I'd be happy to answer any questions you might have, just let me know. Good luck to you and your son.


#7

How old is your wife? My son is 24. He had radical limb-sparing for a softball sized synovial on his left leg…took entire soleous muscle. At first they were convinced that the nodes were “carpenter’s lung” because they never moved for months. Now, the nodes went from 9 to 40! How many nodes does your wife have? How long have you been fighting this monster? Thanks!


#8

My wife is 28, and is coming up on the first anniversary of her diagnosis next week. Thankfully she only has a few mets, but we need to find a drug that works before we jump back into surgery. Where are you guys being treated?



Ellen said:

How old is your wife? My son is 24. He had radical limb-sparing for a softball sized synovial on his left leg.....took entire soleous muscle. At first they were convinced that the nodes were "carpenter's lung" because they never moved for months. Now, the nodes went from 9 to 40! How many nodes does your wife have? How long have you been fighting this monster? Thanks!

#9

He has been going to Burlington Vermont with Dana-Farber in Boston as part of his team. I hope and pray for both of our loved ones. Too young for this terrible monster. Please keep me updated on your wife. My son’s year will be on March 5.

Danny said:

My wife is 28, and is coming up on the first anniversary of her diagnosis next week. Thankfully she only has a few mets, but we need to find a drug that works before we jump back into surgery. Where are you guys being treated?

Ellen said:
How old is your wife? My son is 24. He had radical limb-sparing for a softball sized synovial on his left leg.....took entire soleous muscle. At first they were convinced that the nodes were "carpenter's lung" because they never moved for months. Now, the nodes went from 9 to 40! How many nodes does your wife have? How long have you been fighting this monster? Thanks!

#10

So far the PAZOPANIB oral chemo has had very few side effects. He takes it at night, on an empty stomach, before he goes to bed and has a little nausea in the morning. Will keep fingers crossed for good scans in April.


#11

Hi My husband started pazopanib 6 weeks ago and the results have already shown promise !!!


#12

My husband has been on the same drug and also has had a positive reponse



Ellen said:



Danny said:

Ellen,

My wife is also on Pazopanib, and has been taking it for about 3 months now. Her first set of scans showed that her lung mets remained stable. The side effects have been very mild for her, especially compared to the chemo regimens she's been on previously. I'd be happy to answer any questions you might have, just let me know. Good luck to you and your son.


#13

Yes my husband started 6 weeks ago and the effect so far has shown promise


#14

When will your husband have scans? Has his hair turned white? My son’s hair is white. He has gained wieght and he appears to be quite healthy. Good luck and keep me posted.


#15

Yes Ellen his hair has turned white also !!! He has had a chest Xray after one month and it showed that tumors have shrunk !


#16

My wife’s last scans showed that the mets in her lungs remained stable, but unfortunately her primary tumor in her leg has recurred. She’ll be continuing on the pazopanib for now, and we’ve added rapamycin- an mTOR inhibitor. It seems the pazopanib is doing something, but just not enough to get the tumors to start shrinking. Ellen and Alicia- so glad to hear that your son and husband have had encouraging results. Hope it continues!


#17

Alicia, This gives me so much hope! When will he have another scan? How old is he? Is he able to work?

Alicia McFarlane said:

Yes Ellen his hair has turned white also !!!! He has had a chest Xray after one month and it showed that tumors have shrunk !

#18

Hi Danny. My thoughts have been with you and your wife. Please stay optomistic.

Danny said:

My wife's last scans showed that the mets in her lungs remained stable, but unfortunately her primary tumor in her leg has recurred. She'll be continuing on the pazopanib for now, and we've added rapamycin- an mTOR inhibitor. It seems the pazopanib is doing something, but just not enough to get the tumors to start shrinking. Ellen and Alicia- so glad to hear that your son and husband have had encouraging results. Hope it continues!

#19

He is 46 years old. He has been able to work since being off chemo although not full time yet.( we run our own business) He will be having another Chest Xray in 2 weeks time. We found out about Pazopanib by researching on the internet. If you type in Pazopanib , Synovial sarcoma, Royal Marsen Hospital you will come across an article that talks about it. There is Also a photgraph of BEFORE and AFTER being on Pazopanib for 12 months...this gave us inspiration to acess the drug.

Stay positive!!! Hope is everything.


Ellen said:

Alicia, This gives me so much hope! When will he have another scan? How old is he? Is he able to work?

Alicia McFarlane said:
Yes Ellen his hair has turned white also !!!! He has had a chest Xray after one month and it showed that tumors have shrunk !

#20

Hi everyone! My son had his scans yesterday and the PAZOPANIB (VOTRIENT) is working! The 3 larger nodes have shrunk dramatically and a few of the small ones have disappeared. This is the first good news that he has had in a year without bad news attached! We are optomistic. God bless you all.