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Synovial Sarcoma - Online Support Group

Oral chemo VOTRIENT

#41

Sorry, forgot to add he is experiencing mild disinterest. I thought that was because he’s so ill right now. I also learned one possible side effect is anorexia so he’s drinking Ensure when he isn’t interested in eating. I hope this helps. He has mets in the lungs, chest wall, all around his left shoulder and now has 2 lesions on his liver. He just keeps on fighting though, so you hang there too and let me know how you’re doing.

Debbie Nelson said:

Was wondering how you're doing on the Votrient? We are having problems getting the insurance company to pay benefits. He's taken the drug for one month now and our oncologist said he should be on it for 2 months before we know if it's working.

pandoras_sarcoma said:

Just started Votrient 5/9/11... Started at 800mg, but because of seriously frequent intestinal issues, we backed down to 600mg inside 3 days. Obviously have not been on long, but now reading these comments I have high hopes. I have mets in the lungs and possibly the lymph nodes in my groin. I still feel pretty good, except the last 3 days I have felt really blah.

Is anyone having complete lack of interest on this drug or is this something else?

#42

I had troubles with my insurance covering this drug too... but after a call to a fellow at Harvard, suddenly they had it covered. It's $50 a month. The disinterest has melted away. I don't know about anorexia... Doesn't seem to be affecting my appetite at all. I've been on it for about 8 weeks now and the only 3 side effects I can see are: diarrhea (easily cared for with immodium), my pigmentation is fading. Meaning my hair and skin are losing their colour. My hair is coming in white... it's really pretty. And the third is dry mouth. But I just drink a ton of water and that doesn't really bother me.


Debbie Nelson said:

Sorry, forgot to add he is experiencing mild disinterest. I thought that was because he's so ill right now. I also learned one possible side effect is anorexia so he's drinking Ensure when he isn't interested in eating. I hope this helps. He has mets in the lungs, chest wall, all around his left shoulder and now has 2 lesions on his liver. He just keeps on fighting though, so you hang there too and let me know how you're doing.

Debbie Nelson said:
Was wondering how you're doing on the Votrient? We are having problems getting the insurance company to pay benefits. He's taken the drug for one month now and our oncologist said he should be on it for 2 months before we know if it's working.

pandoras_sarcoma said:

Just started Votrient 5/9/11... Started at 800mg, but because of seriously frequent intestinal issues, we backed down to 600mg inside 3 days. Obviously have not been on long, but now reading these comments I have high hopes. I have mets in the lungs and possibly the lymph nodes in my groin. I still feel pretty good, except the last 3 days I have felt really blah.

Is anyone having complete lack of interest on this drug or is this something else?

#43

I had not thought about getting our oncologist at MD Anderson to appeal, thanks for the advice. When will your next scans be done? I'm very interested to hear how you're doing.

#44

My first scan will be in the middle of next month. I am very interested to see how I am doing too! :slight_smile: I will post up when I get my results. My doc wants 10 week scans to make sure that the meds are good and kicked in.

Debbie Nelson said:

I had not thought about getting our oncologist at MD Anderson to appeal, thanks for the advice. When will your next scans be done? I'm very interested to hear how you're doing.

#45

We have got pazopanib through a compassionate access scheme. Our Doctor contacted Glaxo Smith Kline directly.



Debbie Nelson said:

I had not thought about getting our oncologist at MD Anderson to appeal, thanks for the advice. When will your next scans be done? I'm very interested to hear how you're doing.

#46

Our doctor and the staff at our local clinic are working hard to get us some kind of financial assistance. We should be hearing some kind of news in the next few days. Prayers, good thoughts, positive energy are all welcome.

#47

Well folks, all appeals are exhausted to get benefits paid for the Votrient for my husband. We are currently discussing the next treatment option with his oncologists. I have mentioned Sutent and Rampamycin as well as Sorafinib, which I learned of through you fine folks. He has scans next Monday and then we go a different direction. Please keep us in your prayers, send good thoughts and positive energy.

#48

GSK just filed to expand votrient use to soft tissue sarcoma:

http://www.pharmatimes.com/Article/11-07-07/GSK_files_to_expand_Votrient_use.aspx

Don't know how long it takes to get the FDA approval but may be your husband can try again later on...

#49

That’s wonderful news, thank you so much for sharing it. I’ve just sent an email to GSK to ask if they have an estimate how long the approval process usually takes. I’m praying for positive news back from them. We go for scans on Monday and I’m just hoping to see verification of what I see living with him every day. I’ve seen that he’s feeling better, his labs have improved with the exception of potassium levels, and I think the drug was working. It’s a shame I’m not independently wealthy! :slight_smile:

#50

Prayers are being said. Hoping the scans show improvement! Please let us know!

#51

I will praying for your son. My grandson was recently diagnosed and recevied his first teaetment last weekend. a combination of Doxorubicin and Ifosfamide...now we wait and get another dose in 2 weeks and then an MRI to see how much the tumors have been reduced. I will kepp you all in my prayers...Pazopanib Was approved in 2009..

http://www.cancer.gov/cancertopics/druginfo/fda-pazopanibhydrochloride

#52

Hi Danny…My Grandson was recently diagnosed. Is Pazpopanib used in place of Doxorubicin and Ifosfamide ? or in conjuction with ?..Thanks Frank

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.

#53

Pazopanib is used as a second line treatment when front line chemotherapy (e.g. Doxorubicin and Ifosfamide, or Ifosfamide alone) has failed. I don't personally know anybody who has used Pazopanib as front line treatment. You are correct that the FDA has approved Pazopanib, but it has been approved for a different indication- Renal Cell Carcinoma. Clinical trials for patients with sarcoma are still ongoing, but the drug can be prescribed off-label (i.e. for an unapproved indication) to be made available to sarcoma patients. Whether your insurance company will be willing to pay for it is another story... Happy to answer any other questions, good luck!!

#54

Thanks Danny…we are praying that the chemo shows results…Thanks for the input…

Danny said:

Pazopanib is used as a second line treatment when front line chemotherapy (e.g. Doxorubicin and Ifosfamide, or Ifosfamide alone) has failed. I don't personally know anybody who has used Pazopanib as front line treatment. You are correct that the FDA has approved Pazopanib, but it has been approved for a different indication- Renal Cell Carcinoma. Clinical trials for patients with sarcoma are still ongoing, but the drug can be prescribed off-label (i.e. for an unapproved indication) to be made available to sarcoma patients. Whether your insurance company will be willing to pay for it is another story... Happy to answer any other questions, good luck!!

#55

What a week! My husband’s scans taken July 11th revealed no new activity. We saw the oncologist July 18th and he stated this is the first time in 2 years he could say hubby’s disease is stable. We still cannot get Votrient though. I contact GSK and asked if they knew how long the FDA approval process is likely to take and they had no concrete answer, other than it can take up to and more than a year sometimes. The folks I spoke to tried every thing they could think of to help us, it just didn’t work out. Meanwhile, our local cancer center has 2 months of Nexavar (sorafenib) that had been donated to them so they paid that forward and donated those to us. Keep us in your prayers, will send updates as I can. Y’all have no idea how much I appreciate your support and being able to talk honestly about this with you.

#56

So So Pleased for you

#57

Very happy for you!

#58

I've been taking Votrient since early November of 2010. I had problems right after I started taking the drug with a lot of pain in my chest (at the tumor sites). My doctor added Prevacid and that alleviated the pain, which could have been a result of acid reflux (scans have now shown I now have a hiatal hernia). At the same time, the tumors began shrinking visibly.

My latest PET scan (May 2011) showed the tumors had shrunk and the metabolic activity was significantly reduced. Shortly after this scan, my local oncologist changed my dose from 800 mg / day to 600 mg / day, as I was having trouble tolerating the higher dose (diarrhea mainly, although nausea appeared in mid May for the first time). The lower dose worked well for tolerating the dose but in the later 1/2 of July, the size of one tumor grew slightly (based on tape measure - not a scan), so the dose was adjusted again to the higher dose. I have a PET scan scheduled to see what is truly going on.

I had a lot of trouble with diarrhea (and my stomach in general) until late May, at which time my doctor changed up my medication. Since this change, it has made a world of difference for the better. This is the medication I take daily:

  • 1 Zofran
  • 1 Caltrate Calcium + Vitamin D 600 mg + minerals
  • Tincture of Opium (1 dose daily regardless, follow dosing if you have diarrhea). Immodium made my stomach hurt very badly and suppressed my appetite.
  • 1 prevacid

I also found a the Betty Crocker cookbook that has a lot of recipes that are easily tolerable, as my stomach just won't tolerate too much everyday food.

#59

Hi,

Wanted to check if any of you/family have used Pazopanib for liver mets of Synovial Sarcoma. My dad has been diagonsed with Synovial Sarcoma of the thigh with lung and liver mets. He had regular first line chemo which dint work, 2nd line chemo was yondelis which also dint work - mainly dint work on the liver while lung mets were more or less stable. We are thinking of trying Votrient for a couple of months and check the impact.

Madhu

#60

Madhu, my husband had to switch from Pazopanib to Nexavar (which is similar). He’s not finished with his first month yet but there are 3 “lesions” visible on his liver that could be mets and he has MASSIVE mets in his chest. After taking Pazopanib for one month his disease was stable but we could not continue because our insurance company would not pay benefits and GSK was unable to provide at reduced cost. That’s why we switched to Nexavar, our local cancer center has donated 2 months supply. Hope this helps and best to you and your family.

Madhu said:

Hi,

Wanted to check if any of you/family have used Pazopanib for liver mets of Synovial Sarcoma. My dad has been diagonsed with Synovial Sarcoma of the thigh with lung and liver mets. He had regular first line chemo which dint work, 2nd line chemo was yondelis which also dint work - mainly dint work on the liver while lung mets were more or less stable. We are thinking of trying Votrient for a couple of months and check the impact.

Madhu