My daughter, Katie, started Pazopanib on November 2nd due to lung mets that are currently not operational. The pain she had before starting Pazopanib has stopped for the last two weeks. We hope this is a good sign. We will not be scanning till the beginning of the new year.
Has anyone been on Pazopanib (Votrient) for a while with success? We are hoping there are success stories out there that can give us hope. Can you please share?
I have been on Votrient since August 2012. I was good until October of this year when I started having pain in an area which I thought was the lungs because, I too, have lung mets. It turned out that I had a new tumor in the vertebral body adjacent to the spine. I had 3 rounds cyberknife therapy which took care of the pain immediately. I'm still on the Votrient. The Dr. decided it had not failed because the other tumors are still stable. I'm kind of troubled by this, but I'm very limited with other options at this point. The Votrient has been a real challenge. Mostly, I have been affected by the chronic fatigue, lack of appetite, weight and taste loss and diarrhea which is very sporadic. I have had my dosage reduced twice. I'm currently taking 600mg. MWFSun, 400mg TTHSat. It has helped, but the side effects are a huge adjustment. I also have experienced change in the color of hair all over my body and skin color. Even with all the side effects, I consider it success because it's working on the other tumors. I have a total of 9 tumors through out my body in various areas. It's all good! If you have specific questions, don't hesitate to ask me.
I am going to be starting this Votrient on Dec 4. I believe I can tolerate fatigue, but curious about the loss of appetite. Have you tried the THC(marajuana) at all? Any other suggestions to keep food desirable?
thanks
I have been taking 800mg/day since June. The 2 CT scans have shown very good results clearing out many of the small tumors and continually shrinking the three larger ones in my lungs to the point that the pains in my sides have disappeared. The appitite comes and goes for me, but I blame the fatigue more for my weight loss as food has always tasted good for me. It is just the desire to do so. I rest during the weekend so I’m able to have energy thru the week. I always remind myself that being on this is a much better life then the roller coaster up and downs of hospital chemo cycles. The other side affects are also there, but I’ve gotten many compliments on my white hair (friends can be so kind). I’ve been thru many other chemo treatments and trials including NY-ESO-1 at NIH and I feel the Votrient has given me the best quality of life while working toward the goal of winning the fight. I pray daily to our Lord that it keeps working and I plan on riding this path until I win and I’ll do the same for Katie.
My food intake had gotten so bad, I lost 20 pounds to a mere 100 pounds...no muscles at all. I tried an anti-depressant which a Dr. gave me to stimulate my appetite, but it made me feel so worn out, I just could not take it. I tried putting myself on a schedule, but the food taste so horrible, I could not eat the meals prepared because I felt nauseous. I got desperate because I was approaching malnutrition and food is our strength. I am now successfully eating much better because of the medical marijuana. I don't smoke, so I take a medical cannabis lozenge that has a high level of CBD and it doesn't make me high. The good news is I have an appetite and I get so hungry, it doesn't matter what the food taste like.
I hope I can continue to take the Votrient. I have had so many chemo regimens, surgeries and radiation to my lungs and to the upper extremities, I am now on oxygen because I have developed severe restrictive lung disease. The Votrient has also caused my heart rate to increase to the point where I am out of breath and can barely catch my breath at times. I had to see a cardiologist regarding the heart, so I'm doing testing to see if there is possible heart damage.
Going forward, I'm going to rejoice that God wakes me up everyday and I have a means to still have a quality of life where I can enjoy some of the things I love. I accept where I am in life and I'm looking at ways to get stronger. It's a challenge and I just have to be patient. 22 years and still fighting!
Hi Michael - I hope you had a great Thanksgiving. Thank you for sharing. So far my daughter has not lost her appetite. When she first started she was nauseous in the morning and took Zofran but no longer needs it. She is taking Prilosec once a day to help with the digestive track issues she first got. She appears to be a little more tired but it is hard to tell if it is a teenager thing. She keeps so busy and then sleeps in on the weekends. My daughter is still not experiencing any pain. I hope it is a good sign. Best of luck with this drug.
Michael Stangel said:
I am going to be starting this Votrient on Dec 4. I believe I can tolerate fatigue, but curious about the loss of appetite. Have you tried the THC(marajuana) at all? Any other suggestions to keep food desirable?
thanks
Your attitude is wonderful and I am glad to hear you are having success with this drug. Thank you for sharing. My daughter used Zofran in the beginning when she was getting nauseous but is not using it any more. She is using Prilosec once a day to help with digestive track issues she first got. When on radiation she drank so many milkshakes to keep her weight up...and when in the hospital she could not get enough Auntie Anne's pretzels. Whatever you like to eat the most stock up on it.
Keep up the positive attitude. My daughter is so busy living her life to the fullest she inspires me to live life to the fullest. Continue to do everything you want to do. All the best. Trish
imaFighter91 said:
My food intake had gotten so bad, I lost 20 pounds to a mere 100 pounds...no muscles at all. I tried an anti-depressant which a Dr. gave me to stimulate my appetite, but it made me feel so worn out, I just could not take it. I tried putting myself on a schedule, but the food taste so horrible, I could not eat the meals prepared because I felt nauseous. I got desperate because I was approaching malnutrition and food is our strength. I am now successfully eating much better because of the medical marijuana. I don't smoke, so I take a medical cannabis lozenge that has a high level of CBD and it doesn't make me high. The good news is I have an appetite and I get so hungry, it doesn't matter what the food taste like.
I hope I can continue to take the Votrient. I have had so many chemo regimens, surgeries and radiation to my lungs and to the upper extremities, I am now on oxygen because I have developed severe restrictive lung disease. The Votrient has also caused my heart rate to increase to the point where I am out of breath and can barely catch my breath at times. I had to see a cardiologist regarding the heart, so I'm doing testing to see if there is possible heart damage.
Going forward, I'm going to rejoice that God wakes me up everyday and I have a means to still have a quality of life where I can enjoy some of the things I love. I accept where I am in life and I'm looking at ways to get stronger. It's a challenge and I just have to be patient. 22 years and still fighting!
Hi BuckeyeNut (love this name) - thanks for sharing your good news. I am glad this is working for you.
We really thought the NY-ESO trial for SS was the best option but Katie's tumor did not test positive to go on this trial. Katie continues to not experience pain and I pray this will continue for her and you. Her hair is just starting to turn white but she is happy she is not losing it again. She is a senior in high-school and this drug seems the most promising and it is giving her the best quality of life during this busy and exciting time of her life. She currently has a good appetite. She is on Prilosec one a day...maybe this helping with the appetite. Not sure why people loss their appetite on this drug. Was your doctor able to suggest anything? All the best.
BuckeyeNut said:
I have been taking 800mg/day since June. The 2 CT scans have shown very good results clearing out many of the small tumors and continually shrinking the three larger ones in my lungs to the point that the pains in my sides have disappeared. The appitite comes and goes for me, but I blame the fatigue more for my weight loss as food has always tasted good for me. It is just the desire to do so. I rest during the weekend so I'm able to have energy thru the week. I always remind myself that being on this is a much better life then the roller coaster up and downs of hospital chemo cycles. The other side affects are also there, but I've gotten many compliments on my white hair (friends can be so kind). I've been thru many other chemo treatments and trials including NY-ESO-1 at NIH and I feel the Votrient has given me the best quality of life while working toward the goal of winning the fight. I pray daily to our Lord that it keeps working and I plan on riding this path until I win and I'll do the same for Katie.
Hi All, my husband starts off on 400mg of Votrient twice a day will keep you posted how everything goes. So far he has been such a pillar of strength at times it is so hard to believe he is fighting this terrible beast! Everyone fighting this fight is an inspiration and I want to thank each and every one of you. Please keep up the fight!!
My husband has been on Votrient since mid-September. He just had his first scans last week and the large tumor that is pressing on his heart has remained stable, and the doctor said that by looking at the scans even looks a little smaller. Dan feels pretty good, gets tired very easily but is able to participate in a lot of our daily life. His hair is turning white, and he sometimes has some stomach issues but all are controlled pretty well.
His blood pressure did skyrocket though and he's now on some blood pressure medications to control it. He actually had more of an issue with the blood pressure meds than the Votrient. He's on 800mg/day and he takes them first thing in the morning and then waits an hour to eat. Overall so much better than the chemo he did 4 years ago. We are hopeful that this drug will continue to allow us to have many days together as a family.
Keep the faith.
Many thanks for these very interesting set of infos. Our son is about to be treated by Votrien.V. has just been agreed by the French Administration.
I'll share with you. All the best to all of you.
Hi Pascal - I pray your son has success on Votrient. Many folks have had success with it.
Pascal said:
Many thanks for these very interesting set of infos. Our son is about to be treated by Votrien.V. has just been agreed by the French Administration.
I'll share with you. All the best to all of you.
Thank you for sharing. I am glad to hear this drug is helping and his blood pressure is under control. All the best.
Katie T said:
My husband has been on Votrient since mid-September. He just had his first scans last week and the large tumor that is pressing on his heart has remained stable, and the doctor said that by looking at the scans even looks a little smaller. Dan feels pretty good, gets tired very easily but is able to participate in a lot of our daily life. His hair is turning white, and he sometimes has some stomach issues but all are controlled pretty well.
His blood pressure did skyrocket though and he's now on some blood pressure medications to control it. He actually had more of an issue with the blood pressure meds than the Votrient. He's on 800mg/day and he takes them first thing in the morning and then waits an hour to eat. Overall so much better than the chemo he did 4 years ago. We are hopeful that this drug will continue to allow us to have many days together as a family.
Keep the faith.
Hi Trish thanks for this encouragement. Votrient has been posponed since my son is suffering of a new infection at the lungs in addition of the mets !This has to be cured first.
And the doctors have decided to give prioity to radio therapy to destroy (contain) a met on the vertebral column close to the rachis: one session a day for 5 days. Then Votrient; my son is my heroe!
For not understable reason marijuana under medical controll is not allowed in France since the genuine product is considered as a drug. which means the only way to remove the pain is morphin derivates ! Reading your comments on the medicinal marijuana, there is another batlle to engage.Right or wrong it's my country!
I have been on Votrient for 5 days now and the tumor pain in my abdomin has increased by 100X. No amount of oxycodone or oxycontin seems top provide any relief. I have not experienced any of the other side effects though, no nausia, no diarhea, no high blood pressure, no lioss of appetite. Can I expect the pain in the tumor to subside? or when do the other symptoms begin?
thanks for any input,
Michael
Lung Mets are operable!!! I just had 19 (16 of which were Sarcoma) removed from my right lung. I will go back to get my left lung done in February. The recovery was about 2 weeks but you are walking the next day. The Dr's name is Dr Rolle and he is in Coswig/Dresden, Germany. He is awesome! Do not believe US doctors when they tell you chemotherapy is your only option. That is what they told me but thank God I found Dr Rolle. There are many blogs on how great this man is and how many quality years he has added to the lives of his patients. Feel free to e-mail me and I can provide my number if you would like to talk about it. There was another US patient there that got surgery when I did and I can link you with them as well.
Great news MissMya! I wish you a quick recovery :-)
MissMya said:
Lung Mets are operable!!! I just had 19 (16 of which were Sarcoma) removed from my right lung. I will go back to get my left lung done in February. The recovery was about 2 weeks but you are walking the next day. The Dr's name is Dr Rolle and he is in Coswig/Dresden, Germany. He is awesome! Do not believe US doctors when they tell you chemotherapy is your only option. That is what they told me but thank God I found Dr Rolle. There are many blogs on how great this man is and how many quality years he has added to the lives of his patients. Feel free to e-mail me and I can provide my number if you would like to talk about it. There was another US patient there that got surgery when I did and I can link you with them as well.
My daughter started Votrient December 2012, had some shrinkage and other tumors stable. One tumor in her lung was to large for the Votrient to do anything with, 4 inches wide and pressing on her heart. So they did lung surgery and took the top and middle lobes of her right lung out in order to get the large tumor out. She healed miraculously, but had a problem with her colon and bladder, during a colostomy surgery July 30th 2013, it was discovered that she had an abscess in her pelvic area that was draining and caused necrosis and eventually turned gas gangrene. She was told over and over that it was constipation causing her pain until they found the abscess. I feel that the Votrient was the best cancer drug that she was on and she had been on Ifosfimide, adriamyacin, doxirubin and taxotere. She was tough and a fighter but Gangrene took her away September 28, 2013. Good luck!!
Hi Figfter91,
I have same as you lung mets.and one tumor beside spine.I still feel the pain and I need to know did you after 3 rounds with cyberknife complete removed the tumor or still have some small pcs.Also during the cyberknife therapy did you stop to use Votrient or not.Its will be helpful if you have a time respond to me.All the best. Jim
imaFighter91 said:
I have been on Votrient since August 2012. I was good until October of this year when I started having pain in an area which I thought was the lungs because, I too, have lung mets. It turned out that I had a new tumor in the vertebral body adjacent to the spine. I had 3 rounds cyberknife therapy which took care of the pain immediately. I'm still on the Votrient. The Dr. decided it had not failed because the other tumors are still stable. I'm kind of troubled by this, but I'm very limited with other options at this point. The Votrient has been a real challenge. Mostly, I have been affected by the chronic fatigue, lack of appetite, weight and taste loss and diarrhea which is very sporadic. I have had my dosage reduced twice. I'm currently taking 600mg. MWFSun, 400mg TTHSat. It has helped, but the side effects are a huge adjustment. I also have experienced change in the color of hair all over my body and skin color. Even with all the side effects, I consider it success because it's working on the other tumors. I have a total of 9 tumors through out my body in various areas. It's all good! If you have specific questions, don't hesitate to ask me.