Would those of you who have tried Votrient be kind enough to share your experiences with me...the good, the bad and the ugly....please. Clearly my husband's Ifosfamide cocktail didn't work as he now has some small metastatic lesions to his lungs. He will have surgery to remove the larger one and then Votrient. Dan and I are optimistic but realistic, so any feedback would be greatly appreciated. Thank you, Jeanne
My husband had unusual and horrible side effects from votrient including tumor bleeds. He also experienced excruciating pain at his tumor sites. It was not a good drug for him, but it has done good for many, many people. My husband was very far advanced in his disease when he used the drug and we are not sure if this was part of the adverse reaction. I’m sure others will chime in here with more positive words, but I always feel it’s important to share our experiences to help others.
Thank you Tracey...appreciate your straightforwardness. Dan and I want to attack this beast with as much information as possible.
Traceyb said:
My husband had unusual and horrible side effects from votrient including tumor bleeds. He also experienced excruciating pain at his tumor sites. It was not a good drug for him, but it has done good for many, many people. My husband was very far advanced in his disease when he used the drug and we are not sure if this was part of the adverse reaction. I'm sure others will chime in here with more positive words, but I always feel it's important to share our experiences to help others.
Be as very aggressive with surgery as possible. Just my opinion if I could do it over again. The votrient for maintenance is not too bad, but then again my husband tolerated chemo very well. The only symptoms that he had were whitening of the hair, some nausea (so take it at night), fatigue and diarrhea. But, again, please let me be clear to you that they should remove any and ALL mets to the lungs with a strong chemo follow up like Votrient. In my case and many others, they were not aggressive enough and the small mets turned in to larger ones. I agree with Traceyb though, my husband's disease was very far advanced when he took the medication. I wish you the best of luck and will be praying for you and your husband.
Thank you Carrie. I will be sharing all of this information with my husband. We will be meeting with his thoracic surgeon at Memorial Sloan Kettering on Tuesday. All of this information helps us to develop our questions. xo
Carrie V said:
Be as very aggressive with surgery as possible. Just my opinion if I could do it over again. The votrient for maintenance is not too bad, but then again my husband tolerated chemo very well. The only symptoms that he had were whitening of the hair, some nausea (so take it at night), fatigue and diarrhea. But, again, please let me be clear to you that they should remove any and ALL mets to the lungs with a strong chemo follow up like Votrient. In my case and many others, they were not aggressive enough and the small mets turned in to larger ones. I agree with Traceyb though, my husband's disease was very far advanced when he took the medication. I wish you the best of luck and will be praying for you and your husband.
The search function on this site works well, I just searched Votrient on the box on the top and got a lot of material.
Also do a search on google, I largely ignored the press rests releases from drug company.
Goodluck
Gary
Thank you Gary, I'll do that.
Gary Taiaroa said:
The search function on this site works well, I just searched Votrient on the box on the top and got a lot of material.
Also do a search on google, I largely ignored the press rests releases from drug company.
Goodluck
Gary
I'm currently taking Votrient. I've been on the drug since August, 2012. I went on the drug after very aggressive treatment with Ifosamide. I was on a 14-day continuous infusion for 7 months. Afterwards I was placed on Votrient. So far, so good... very first scan results showed some shrinkage, so I was please about that and the second scan in January showed tumors being stable. I have a total of 9 tumors in and outside the lungs...too many different places to mention...some near major organs and can't be surgically removed.
I experience extreme fatigue, low WBC's, loss of appetite and taste. Lightning of the skin, hair and diarrhea. Sometimes I might experience a slight headache and muscle cramps and weakness in the legs. I also had to be placed on high blood medication bc the drug elevated my blood pressure and I also notice that my heart rate beats a lot faster at times. I just rest when this happens. I've learned also that it is very important to stay hydrated which is one of my downfalls. Hope this helps. If I think of anything I might have missed, I'll post.
imaFighter91 said:
I'm currently taking Votrient. I've been on the drug since August, 2012. I went on the drug after very aggressive treatment with Ifosamide. I was on a 14-day continuous infusion for 7 months. Afterwards I was placed on Votrient. So far, so good... very first scan results showed some shrinkage, so I was please about that and the second scan in January showed tumors being stable. I have a total of 9 tumors in and outside the lungs...too many different places to mention...some near major organs and can't be surgically removed.
I experience extreme fatigue, low WBC's, loss of appetite and taste. Lightning of the skin, hair and diarrhea. Sometimes I might experience a slight headache and muscle cramps and weakness in the legs. I also had to be placed on high blood medication bc the drug elevated my blood pressure and I also notice that my heart rate beats a lot faster at times. I just rest when this happens. I've learned also that it is very important to stay hydrated which is one of my downfalls. Hope this helps. If I think of anything I might have missed, I'll post.
Thank you so much!
jkopetic said:
imaFighter91 said:I'm currently taking Votrient. I've been on the drug since August, 2012. I went on the drug after very aggressive treatment with Ifosamide. I was on a 14-day continuous infusion for 7 months. Afterwards I was placed on Votrient. So far, so good... very first scan results showed some shrinkage, so I was please about that and the second scan in January showed tumors being stable. I have a total of 9 tumors in and outside the lungs...too many different places to mention...some near major organs and can't be surgically removed.
I experience extreme fatigue, low WBC's, loss of appetite and taste. Lightning of the skin, hair and diarrhea. Sometimes I might experience a slight headache and muscle cramps and weakness in the legs. I also had to be placed on high blood medication bc the drug elevated my blood pressure and I also notice that my heart rate beats a lot faster at times. I just rest when this happens. I've learned also that it is very important to stay hydrated which is one of my downfalls. Hope this helps. If I think of anything I might have missed, I'll post.
I tried it and it didn't work fore me. The sarcoma had moved into my lungs and also became larger. There was a study done for 3 years at the Fletcher Allen Hospital in Burlington, VT. You or your doctor might contact the oncology department to get some information about their results. Votrient work for some and not for others. Good luck and I hope that Vortrient works for your husband.
I did my semi-annual CT scan last week and have a follow up appointment this week to see if there are any changes.
Traceyb said:
My husband had unusual and horrible side effects from votrient including tumor bleeds. He also experienced excruciating pain at his tumor sites. It was not a good drug for him, but it has done good for many, many people. My husband was very far advanced in his disease when he used the drug and we are not sure if this was part of the adverse reaction. I'm sure others will chime in here with more positive words, but I always feel it's important to share our experiences to help others.
My son Joseph who has been dealing this since 7/2009 was on ifos but it make him have fanconi syndrome and he was put on votrient in nov 2012 and so far it has been working on his tumors. Out of three, two are almost gone and the last one shrunk a great deal. The only problems that he has so far has been white hair and his blood pressure has gone up and he has not been put on b/p med yet. So I guess we really can't complain to much...I forgot he has some nausea and diarrhea but he also had that on ifos...I think it is from the potassium and phos supplements he's on due to his fanconi syndrome......good luck
My wife took Votrient with minimal side effects. In terms of effectiveness, it succeeded in keeping her recurrent lung mets stable for 4-5 months, but her primary tumor recurred while on Votrient. Quality of life while on the drug was good. She had occasional fatigue and nausea, but nothing serious (we went hiking in Costa Rica for a week while she was on Votrient). Her hair grew in white, and she got lots of compliments on the new 'do. She later took Sorafenib (another tyrosine kinase inhibitor) which was more difficult to tolerate... but her disease had progressed between the two drugs, which could also explain the difference. Good luck with the decision, hang in there...
I can't thank you (all) enough for your honest and frank feedback. Dan and I prefer to attack with our eyes wide open. And by the way...he's thrilled about the white hair thing. I think he's hoping he'll look more distinguished. : ) (Did I ever mention that my husband is 10 years younger than I....he's only 40)!!! THANK YOU ALL!!
Danny said:
My wife took Votrient with minimal side effects. In terms of effectiveness, it succeeded in keeping her recurrent lung mets stable for 4-5 months, but her primary tumor recurred while on Votrient. Quality of life while on the drug was good. She had occasional fatigue and nausea, but nothing serious (we went hiking in Costa Rica for a week while she was on Votrient). Her hair grew in white, and she got lots of compliments on the new 'do. She later took Sorafenib (another tyrosine kinase inhibitor) which was more difficult to tolerate... but her disease had progressed between the two drugs, which could also explain the difference. Good luck with the decision, hang in there...
I had a pretty good response on Votrient. I did have significant pain at tumor sites, but that was indicative of a good response. I had repeated tumor shrinkage for about 9 months. During that time I had occasional diarrhea, taste sensitivity, and loss of pigmentation in skin and hair. The taste that most frustrated me was not being able to tolerate spicy foods; also, I had sensitivities to some toothpaste and some acidic foods. That either caused my tongue to be painful and/or even swollen to a degree. The pain at the tumor sites was significant and pain relievers did little to alleviate that.
I think Votrient is a great drug, but for me short lived...after the 9 months things began to progress in some tumors again while others continued to respond...
My wife is on the drug at the moment, its been about a week. She began with 800mg but developed high blood pressure almost immediately after taking it so has now Halved the dose and started taking medication to control the bp while on votrient. I’ll keep you posted on her progress, just praying it works as the ifos have not been successful. Wish all the best for your husband, stay strong.
Hello, My name is Lizzy Curtis and I personally am on Votrient right now. I was diagnosed with the synovial sarcoma in May of Last year and did chemo, surgery then many radiation treatments. My oncologist told me that Votrient was they best thing to keep my cancer away, me and my family prayed about it and we believed that Votrient would help in keeping it away. I began the medicine last October and I just had the usual symptoms of a consistent nose bleed (common) and it made me have diarrhea quite often (this may not happen for everyone) I was fine on the medicine, nothing that i could not handle until about 6 weeks ago I noticed a hole forming in the cartilage of the right side of my nose. It really worried me and I wasnt sure what to do at first. I just waited to see if it would go away but it just kept getting bigger. I told my oncologist and he said this was not normal at all. The worry was that it would continue growing and it would end up going all the way through my entire cartilage. So my doctor decided to stop by votrient until the hole grew back to normal. He was afraid what would happen so he made that decision. He also told me that he had never seen this reaction to the medicine before so he was not sure what to do. Previous to the nose hole I was taking 2 pills on even days and 1 pill on odd days because when i started the medication i was 2 pills everyday and that was to much for my body. He told me that when i start the medicine back up after the hole goes away he will only have me take 1 pill every other day. He is not sure how to do this medicine without hurting my body but he knows that I need to be on it.
The other side effects that I had occur was the loss of my hair color completely. I went from having dark brown hair to having white hair as a 21 year old! My arm hair and leg hair also changed colors. My finger nails had discoloration at the finger tips (small brown lines)
If you have any other questions please let me know and if I think of anything else I will let you know!!
Well Lizzy I think you look beautiful with your white hair!! And thank you for your detailed response. I will add you, and all of my new friends here, to my prayers as well. Well-meaning friends of mine are so anxious to tell stories about others who have had experiences with cancer, in general. But those of us dealing with synovial sarcoma realize its really comparing apples and oranges, if you know what I mean. And this website is a lifesaver for me. Thank you all so very much for your help. xoxo Jeanne
Lizzy_Curtis said:
Hello, My name is Lizzy Curtis and I personally am on Votrient right now. I was diagnosed with the synovial sarcoma in May of Last year and did chemo, surgery then many radiation treatments. My oncologist told me that Votrient was they best thing to keep my cancer away, me and my family prayed about it and we believed that Votrient would help in keeping it away. I began the medicine last October and I just had the usual symptoms of a consistent nose bleed (common) and it made me have diarrhea quite often (this may not happen for everyone) I was fine on the medicine, nothing that i could not handle until about 6 weeks ago I noticed a hole forming in the cartilage of the right side of my nose. It really worried me and I wasnt sure what to do at first. I just waited to see if it would go away but it just kept getting bigger. I told my oncologist and he said this was not normal at all. The worry was that it would continue growing and it would end up going all the way through my entire cartilage. So my doctor decided to stop by votrient until the hole grew back to normal. He was afraid what would happen so he made that decision. He also told me that he had never seen this reaction to the medicine before so he was not sure what to do. Previous to the nose hole I was taking 2 pills on even days and 1 pill on odd days because when i started the medication i was 2 pills everyday and that was to much for my body. He told me that when i start the medicine back up after the hole goes away he will only have me take 1 pill every other day. He is not sure how to do this medicine without hurting my body but he knows that I need to be on it.
The other side effects that I had occur was the loss of my hair color completely. I went from having dark brown hair to having white hair as a 21 year old! My arm hair and leg hair also changed colors. My finger nails had discoloration at the finger tips (small brown lines)
If you have any other questions please let me know and if I think of anything else I will let you know!!
I forgot to tell you that I also experienced high blood pressure and they gave me blood pressure to take and that helped lower the blood pressure and since then it has been perfectly fine. I did notice with exertion I noticed my heart rate increasing and I had to make sure to sit or lay down in order to help it go back to normal. I noticed that stairs would really ware me out. (this may not be the case for everyone)
I did have surgery to remove my 8cm tumor in my leg before I had radiation and then started the votrient so I did felel pain at the site of the surgery which is a 12 inch incision on the inside of my right thigh. This pain was not consistent but I did feel it often.
Hey Lizzy,
High blood pressure seems to be a common thread among many of these responses. I'm sure his doctors at Sloan are all over the possible side effects, but I don't like surprises (in this situation anyway). Thank you so much. xo
Lizzy_Curtis said:
I forgot to tell you that I also experienced high blood pressure and they gave me blood pressure to take and that helped lower the blood pressure and since then it has been perfectly fine. I did notice with exertion I noticed my heart rate increasing and I had to make sure to sit or lay down in order to help it go back to normal. I noticed that stairs would really ware me out. (this may not be the case for everyone)
I did have surgery to remove my 8cm tumor in my leg before I had radiation and then started the votrient so I did felel pain at the site of the surgery which is a 12 inch incision on the inside of my right thigh. This pain was not consistent but I did feel it often.