Votrient Side Effects
Comments
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Votrient experience.alice124 said:Votrient
Thank you Bill for providing feedback. Not only is the feedback valuable but I find the sequence of treatment very interesting. Who knows maybe with enough note comparing we can identify the most successful sequences.
May I ask your type of cancer and stage/grade?
Sorry our introductions come under such lousy circumstance, but let's make the best of a bad situation. Sounds like you have a strong support group in both the two legged and four legged categories. Wonderful!
Sorry I'm a little late posting. I don't check my updates often enough to stay up to date. I don't really know what stage of renal cancer I am. I just know that I was diagnosed in 1997 when because of other medical situation I was in hospital for observation and to get high blood pressure under control when it was discovered that I had a tumor on my right kidney and another on the adrenal gland. Both were removed along with gallbladder and one rib. Surgery got it all and I was cancer free or in remission for about five or six years until small tumors were found during a scan about 2004. The upper lobe of right lung was removed in 2005. Treatment with Nexavar began January 2009. The results were so good that my Dr. took me off any treatment for about 18 months until the tumors started growing again. I was placed on Votrient in January 2011 and the results have been good. I am on 400 mg. daily and the tumors are responding positively. The results of the first scan 90 days after beginning Votrient showed that the tumors had decreased in size by 50% and one had completely disappeared. The last scan this past March showed some of the tumors were falling apart (the Dr. uses completely different terminology to explain so I have to ask a lot of questions to understand) so I won't have another scan for six months while still taking medicine on a daily basis. I feel great most days and am truly thankful that I am able to enjoy living. I entertain a group of seniors at a local retirement facility three Tuesday evenings every month and have been for nineteen years. I must give credit not only to the Dr. and staff that have been caring for me, the medicine, the technology, my precious caregiver for almost 55 years but I must give acknowledgement to my creator for His keeping watch over all the procedings. I must honor Him. Thanks. Bill Stephens.0 -
Mrbill28mrbill38 said:Votrient experience.
Sorry I'm a little late posting. I don't check my updates often enough to stay up to date. I don't really know what stage of renal cancer I am. I just know that I was diagnosed in 1997 when because of other medical situation I was in hospital for observation and to get high blood pressure under control when it was discovered that I had a tumor on my right kidney and another on the adrenal gland. Both were removed along with gallbladder and one rib. Surgery got it all and I was cancer free or in remission for about five or six years until small tumors were found during a scan about 2004. The upper lobe of right lung was removed in 2005. Treatment with Nexavar began January 2009. The results were so good that my Dr. took me off any treatment for about 18 months until the tumors started growing again. I was placed on Votrient in January 2011 and the results have been good. I am on 400 mg. daily and the tumors are responding positively. The results of the first scan 90 days after beginning Votrient showed that the tumors had decreased in size by 50% and one had completely disappeared. The last scan this past March showed some of the tumors were falling apart (the Dr. uses completely different terminology to explain so I have to ask a lot of questions to understand) so I won't have another scan for six months while still taking medicine on a daily basis. I feel great most days and am truly thankful that I am able to enjoy living. I entertain a group of seniors at a local retirement facility three Tuesday evenings every month and have been for nineteen years. I must give credit not only to the Dr. and staff that have been caring for me, the medicine, the technology, my precious caregiver for almost 55 years but I must give acknowledgement to my creator for His keeping watch over all the procedings. I must honor Him. Thanks. Bill Stephens.
Sounds like you have had some good results from Votrient. We have 2 months before they will do the first scan to see how Votrient is working for my husband. As I said the only side effect really he has had is being extremely tired and he said if that is the only thing that happens he can handle that. He is on 800mg a day so we will see how he does.
Thank you ALL for sharing with us.0 -
Mrbill28mrbill38 said:Votrient experience.
Sorry I'm a little late posting. I don't check my updates often enough to stay up to date. I don't really know what stage of renal cancer I am. I just know that I was diagnosed in 1997 when because of other medical situation I was in hospital for observation and to get high blood pressure under control when it was discovered that I had a tumor on my right kidney and another on the adrenal gland. Both were removed along with gallbladder and one rib. Surgery got it all and I was cancer free or in remission for about five or six years until small tumors were found during a scan about 2004. The upper lobe of right lung was removed in 2005. Treatment with Nexavar began January 2009. The results were so good that my Dr. took me off any treatment for about 18 months until the tumors started growing again. I was placed on Votrient in January 2011 and the results have been good. I am on 400 mg. daily and the tumors are responding positively. The results of the first scan 90 days after beginning Votrient showed that the tumors had decreased in size by 50% and one had completely disappeared. The last scan this past March showed some of the tumors were falling apart (the Dr. uses completely different terminology to explain so I have to ask a lot of questions to understand) so I won't have another scan for six months while still taking medicine on a daily basis. I feel great most days and am truly thankful that I am able to enjoy living. I entertain a group of seniors at a local retirement facility three Tuesday evenings every month and have been for nineteen years. I must give credit not only to the Dr. and staff that have been caring for me, the medicine, the technology, my precious caregiver for almost 55 years but I must give acknowledgement to my creator for His keeping watch over all the procedings. I must honor Him. Thanks. Bill Stephens.
Sounds like you have had some good results from Votrient. We have 2 months before they will do the first scan to see how Votrient is working for my husband. As I said the only side effect really he has had is being extremely tired and he said if that is the only thing that happens he can handle that. He is on 800mg a day so we will see how he does.
Thank you ALL for sharing with us.0 -
Prayersalice124 said:Votrient
Hope Friday goes well for you and your husband. And I'm glad nasty side effects have been kept at bay so far.
To be honest, John continues to be on the weak side and gets tired easily. We go out but we usually don't stay out beyond a couple hours. I can't really blame it on the Votrient though, as he has not gained his strength since beginning the IL-2 treatment in January.
Of course, the pain in his shoulder continues and his overall weight loss I believe contributes to his lack of strength, but today--for the first time in several weeks--he said the pain wasn't as bad (as he almost forgot to take his pain medication). Perhaps a good sign. His weekly blood work this past week also was better than it's been.
You guys continue to be in my prayers. I'll be anxious to hear about your check up visit on Friday.
Yall are in our prayers also Alice. Friday will be 4 weeks of taking it so we will see how his appt goes. They will do a scan at 3 months to see if the Votrient is helping any. I ask his doctor about IL-2 before we started Votrient and he told me my husband wasn't a candidate for it. No pain meds is a good sign, my husband didn't take any 2 days this week so I hope that is a positive thing as well.
I'll update this weekend. Thanks for your prayers.0 -
Prayersalice124 said:Votrient
Hope Friday goes well for you and your husband. And I'm glad nasty side effects have been kept at bay so far.
To be honest, John continues to be on the weak side and gets tired easily. We go out but we usually don't stay out beyond a couple hours. I can't really blame it on the Votrient though, as he has not gained his strength since beginning the IL-2 treatment in January.
Of course, the pain in his shoulder continues and his overall weight loss I believe contributes to his lack of strength, but today--for the first time in several weeks--he said the pain wasn't as bad (as he almost forgot to take his pain medication). Perhaps a good sign. His weekly blood work this past week also was better than it's been.
You guys continue to be in my prayers. I'll be anxious to hear about your check up visit on Friday.
Yall are in our prayers also Alice. Friday will be 4 weeks of taking it so we will see how his appt goes. They will do a scan at 3 months to see if the Votrient is helping any. I ask his doctor about IL-2 before we started Votrient and he told me my husband wasn't a candidate for it. No pain meds is a good sign, my husband didn't take any 2 days this week so I hope that is a positive thing as well.
I'll update this weekend. Thanks for your prayers.0 -
Your experiencemrbill38 said:Votrient experience.
Sorry I'm a little late posting. I don't check my updates often enough to stay up to date. I don't really know what stage of renal cancer I am. I just know that I was diagnosed in 1997 when because of other medical situation I was in hospital for observation and to get high blood pressure under control when it was discovered that I had a tumor on my right kidney and another on the adrenal gland. Both were removed along with gallbladder and one rib. Surgery got it all and I was cancer free or in remission for about five or six years until small tumors were found during a scan about 2004. The upper lobe of right lung was removed in 2005. Treatment with Nexavar began January 2009. The results were so good that my Dr. took me off any treatment for about 18 months until the tumors started growing again. I was placed on Votrient in January 2011 and the results have been good. I am on 400 mg. daily and the tumors are responding positively. The results of the first scan 90 days after beginning Votrient showed that the tumors had decreased in size by 50% and one had completely disappeared. The last scan this past March showed some of the tumors were falling apart (the Dr. uses completely different terminology to explain so I have to ask a lot of questions to understand) so I won't have another scan for six months while still taking medicine on a daily basis. I feel great most days and am truly thankful that I am able to enjoy living. I entertain a group of seniors at a local retirement facility three Tuesday evenings every month and have been for nineteen years. I must give credit not only to the Dr. and staff that have been caring for me, the medicine, the technology, my precious caregiver for almost 55 years but I must give acknowledgement to my creator for His keeping watch over all the procedings. I must honor Him. Thanks. Bill Stephens.
Bill - Your responses to the various treatments make your Doctor look like a genius. Whatever he tries, it works. The PERFECT PATIENT!
I am so glad you're responding again well and you can share that info with those of us and our loved ones who are just being introduced to Votrient. I also know about the language barrier in the CANCER world. It is like learning a new language.
It sounds like some of your successes may not only be to the terrific support you receive (Dr., wife, and God) but also to good Karma, 19 years entertaining seniors.
Good luck as you continue your fight. John will receive his first catscan since starting MDX/Votrient in three weeks, and I'll be anxious to compare notes.0 -
votrient
Happy to hear your husband is tolerating the Votrient. It is a very good drug and was my doctors first choice. When I first started taking it I had side effects. I came to this site and received info from Tex and Foxhnd about the drug, along with alot of encouragement. I was discouraged when I could not take it, and visiting this site daily helped me through. The worst side effect was a rash all over my body swelling in my face, and bad liver tests which were monitered weekly. The doctor stopped the drug, and I was scared about what to do next. Doc said. just a bump in the road. and started Nexavar - 4 pills a day - still too strong. Reduced the dose to two pills a day, and all is well. I have the hand and foot syndrome for which I use creames
First ct since Jan. after trying both drugs came back as stable. I am not discouraged anymore and have learned to keep trying until something works. Lots of encouragrment to you!0 -
update and thanksadobe said:votrient
Happy to hear your husband is tolerating the Votrient. It is a very good drug and was my doctors first choice. When I first started taking it I had side effects. I came to this site and received info from Tex and Foxhnd about the drug, along with alot of encouragement. I was discouraged when I could not take it, and visiting this site daily helped me through. The worst side effect was a rash all over my body swelling in my face, and bad liver tests which were monitered weekly. The doctor stopped the drug, and I was scared about what to do next. Doc said. just a bump in the road. and started Nexavar - 4 pills a day - still too strong. Reduced the dose to two pills a day, and all is well. I have the hand and foot syndrome for which I use creames
First ct since Jan. after trying both drugs came back as stable. I am not discouraged anymore and have learned to keep trying until something works. Lots of encouragrment to you!
We had our 4 week check up on Friday. Hemoglobin was low due to Votrient making it where is red blood cells are making enough is what the doctor said. His calcium level was low creatnine was high. Still the only side effect that my husband notices is being tired. He will have his first scan in 2 months so praying it will show a decrease in the spots on his lungs.
Adobe how long did you take Votrient before having a rash?
I have really enjoyed the support on this site.0 -
VotrientKJones1969 said:update and thanks
We had our 4 week check up on Friday. Hemoglobin was low due to Votrient making it where is red blood cells are making enough is what the doctor said. His calcium level was low creatnine was high. Still the only side effect that my husband notices is being tired. He will have his first scan in 2 months so praying it will show a decrease in the spots on his lungs.
Adobe how long did you take Votrient before having a rash?
I have really enjoyed the support on this site.
For my two-cents worth......My husband had tried just about every chemo drug available when the Oncologist told him that there were no options. I had read about Votrient in 2010 - so asked him to give it to my husband to try it. He was skeptical and told us not to expect much.........
Out of all of the drugs, with the exception of Sutent, it gave him 11 months and the tumors reduced in size more than they had with any other drug! His only side effects were fatigue, high blood pressure (controlled with meds) and white hair. We cut his hair short and he looked like a cool cover of an aging surfer magazine! (We live in California) - Friends and co-workers thought he bleached his hair! Eventually, the little terrorists in his body became immune to Votrient, so we are now trying Inlyta, but it gave him another year! Good luck and Godspeed....0 -
Good News For AwhileNurseRatchit said:Votrient
For my two-cents worth......My husband had tried just about every chemo drug available when the Oncologist told him that there were no options. I had read about Votrient in 2010 - so asked him to give it to my husband to try it. He was skeptical and told us not to expect much.........
Out of all of the drugs, with the exception of Sutent, it gave him 11 months and the tumors reduced in size more than they had with any other drug! His only side effects were fatigue, high blood pressure (controlled with meds) and white hair. We cut his hair short and he looked like a cool cover of an aging surfer magazine! (We live in California) - Friends and co-workers thought he bleached his hair! Eventually, the little terrorists in his body became immune to Votrient, so we are now trying Inlyta, but it gave him another year! Good luck and Godspeed....
NurseRatchit,
It sounds like your husband had good news for 11 months. We are one month in and just fatique and high blood pressure but the meds to control that. Today is the first day he stayed in bed till early afternoon. I think my husbands hair is turning more gray or white, he says just grayer. Just curious how long before your husband starting turning white.
The doctor told my husband best case it will shrink some of the 5 tumors in his lungs. He said most likely it will just stunt the growth and extend his life some. I'm praying that he can stay on it 11 months, the doctor said if he can tolerate it he will take it up to 11 months. I'm glad you found Votrient and it gave him another year. After researching all of the kidney cancer drugs Votrient seems like the one with the least amount of side effects.
Good luck to you guys as well!!!0 -
VotrientKJones1969 said:update and thanks
We had our 4 week check up on Friday. Hemoglobin was low due to Votrient making it where is red blood cells are making enough is what the doctor said. His calcium level was low creatnine was high. Still the only side effect that my husband notices is being tired. He will have his first scan in 2 months so praying it will show a decrease in the spots on his lungs.
Adobe how long did you take Votrient before having a rash?
I have really enjoyed the support on this site.
Hi again Kay,
Just wanted to touch base again on Votrient. John's most recent bloodwork (5/31) also showed low hemoglobin (9.9) but it was better than his previous reading (5/10)when it was 8.3. So it's headed in the right direction.
His blood pressure is good (147/76), though it is a little higher than it's been. His Dr. discontinued his blood pressure medication after removal of his kidney/tumor in 10/2011. Prior to the surgery, he was on high blood pressure medicine, but his blood pressure was much lower after the surgery thus his medication discontinued.
His creatine level also is normal after being high on 5/10. So maybe the next followup will improve some of your husband's numbers.
Just a fyi. John's Dr.--concerned about bone strength--started him on Exgeva (or Xgevea) shots once a month a few months back plus started him on calcium and vitamin d daily.
I know things are tough, but don't give up. I saw your note on copay info and was glad to read you had found some help there. I know how draining these costs can be, particularly when dealing with everything else. Know you and your husband continue to be in my thoughts and prayers.0 -
answer to your question KJONES1969KJones1969 said:update and thanks
We had our 4 week check up on Friday. Hemoglobin was low due to Votrient making it where is red blood cells are making enough is what the doctor said. His calcium level was low creatnine was high. Still the only side effect that my husband notices is being tired. He will have his first scan in 2 months so praying it will show a decrease in the spots on his lungs.
Adobe how long did you take Votrient before having a rash?
I have really enjoyed the support on this site.
My rash appeared in 5 days -and it was the first choice drug. If you are four weeks into the Votrient therapy tell your husband not to give up being tired=sometimes the situation of cancer
concerns make a person tired, whatever the reason, get up and fight the feeling! Based on the tests and side effects the
doctor feels he can continue Votrient - it has proven to have good results. Keep us posted!0 -
answer to your question KJONES1969KJones1969 said:update and thanks
We had our 4 week check up on Friday. Hemoglobin was low due to Votrient making it where is red blood cells are making enough is what the doctor said. His calcium level was low creatnine was high. Still the only side effect that my husband notices is being tired. He will have his first scan in 2 months so praying it will show a decrease in the spots on his lungs.
Adobe how long did you take Votrient before having a rash?
I have really enjoyed the support on this site.
My rash appeared in 5 days -and it was the first choice drug. If you are four weeks into the Votrient therapy tell your husband not to give up being tired=sometimes the situation of cancer
concerns make a person tired, whatever the reason, get up and fight the feeling! Based on the tests and side effects the
doctor feels he can continue Votrient - it has proven to have good results. Keep us posted!0 -
Hello Alicealice124 said:Votrient
Hi again Kay,
Just wanted to touch base again on Votrient. John's most recent bloodwork (5/31) also showed low hemoglobin (9.9) but it was better than his previous reading (5/10)when it was 8.3. So it's headed in the right direction.
His blood pressure is good (147/76), though it is a little higher than it's been. His Dr. discontinued his blood pressure medication after removal of his kidney/tumor in 10/2011. Prior to the surgery, he was on high blood pressure medicine, but his blood pressure was much lower after the surgery thus his medication discontinued.
His creatine level also is normal after being high on 5/10. So maybe the next followup will improve some of your husband's numbers.
Just a fyi. John's Dr.--concerned about bone strength--started him on Exgeva (or Xgevea) shots once a month a few months back plus started him on calcium and vitamin d daily.
I know things are tough, but don't give up. I saw your note on copay info and was glad to read you had found some help there. I know how draining these costs can be, particularly when dealing with everything else. Know you and your husband continue to be in my thoughts and prayers.
It sounds like things are going in the right direction for your husband. After my husbands nephroectomy in March his hemoglobin worked itself back up to 13.4 finally but after 2 weeks and more bloodwork it was back down to 12.2, that is still good but said Votrient could cause it to keep going down, praying it stays what it is because when he went to Duke March 15th it was 7.9.
I hope things are going good for John now, that is good creatnine was normal. We go back the end of this month and as always praying and hoping for good results. I hope when yall go back again everything goes well.0 -
No rash yetadobe said:answer to your question KJONES1969
My rash appeared in 5 days -and it was the first choice drug. If you are four weeks into the Votrient therapy tell your husband not to give up being tired=sometimes the situation of cancer
concerns make a person tired, whatever the reason, get up and fight the feeling! Based on the tests and side effects the
doctor feels he can continue Votrient - it has proven to have good results. Keep us posted!
Well since mine has been on it a month with no rash that makes me feel good. Oh he is never giving up, is a matter of fact we have someone coming today to help him clean his shop out and rearrange it. I say as long as he wants to do something let him do it. I will keep you updated, we go back end of this month so praying for good results. Thinking about you and praying things go well your way as well.0 -
RCCKJones1969 said:No rash yet
Well since mine has been on it a month with no rash that makes me feel good. Oh he is never giving up, is a matter of fact we have someone coming today to help him clean his shop out and rearrange it. I say as long as he wants to do something let him do it. I will keep you updated, we go back end of this month so praying for good results. Thinking about you and praying things go well your way as well.
Hi all - thank you all for the good info. My Mom was diagnosed with the non clear cell RCC; the DR. ordered her Votrient, but medicare sent Dad a letter saying they would not cover it. I was wondering how everyone was paying for these pill type drugs. I was thinking if we could get a couple of weeks worth to see how see reacted to the drug? Thanks for any thoughts or info. The hospital is still working on approval for one of these drugs, preferably the Votrient.0 -
Drug costsDan3546 said:RCC
Hi all - thank you all for the good info. My Mom was diagnosed with the non clear cell RCC; the DR. ordered her Votrient, but medicare sent Dad a letter saying they would not cover it. I was wondering how everyone was paying for these pill type drugs. I was thinking if we could get a couple of weeks worth to see how see reacted to the drug? Thanks for any thoughts or info. The hospital is still working on approval for one of these drugs, preferably the Votrient.
Dan, sorry to hear of your Mom's situation and your dilemma. I'm not in a position to give any info but I think if you can tell us what sub-type of RCC your Mom has then some others here will be better able to make useful comment. Did the doctor give you evidence that Votrient would be a worth-while bet for your Mom's sub-type?
If you don't get enough help here, you might want to join ACOR's KIDNEY-ONC online mailing list which has many members who are technically very geared up and might be able to assist you. I hope you get the necessary help in a tricky situation.0 -
CostsDan3546 said:RCC
Hi all - thank you all for the good info. My Mom was diagnosed with the non clear cell RCC; the DR. ordered her Votrient, but medicare sent Dad a letter saying they would not cover it. I was wondering how everyone was paying for these pill type drugs. I was thinking if we could get a couple of weeks worth to see how see reacted to the drug? Thanks for any thoughts or info. The hospital is still working on approval for one of these drugs, preferably the Votrient.
Hello! My husband is on medicare and they are paying for it, so maybe you have to argue with them some. We got our drugs from a specialty pharmacy and they helped with finding funding for the part medicare don't pay. Cancer Care out of New York gave us a grant to help pay for it, also if that doesn't work out Glaxo Smithcline, the maker of the drug has copay assistance. Good luck to you! Votrient has worked well so far with my hubby as far as side effects.0 -
CostsKJones1969 said:Costs
Hello! My husband is on medicare and they are paying for it, so maybe you have to argue with them some. We got our drugs from a specialty pharmacy and they helped with finding funding for the part medicare don't pay. Cancer Care out of New York gave us a grant to help pay for it, also if that doesn't work out Glaxo Smithcline, the maker of the drug has copay assistance. Good luck to you! Votrient has worked well so far with my hubby as far as side effects.
Thanks all - I know that the hospital has full time staffing just to try and get some of these pill type treatments approved with the insurance company and Medicare. The Dr. thougt that votrient would be a little easier on Mom's system and more effective to start compared to Sutent. Did not look at any real evidence of that. Mom has the Non clear cell RCC, Krome (sp?) 4 subtype. She did try an IV Chemo (Temsirolimus) last Tues, thought that might have a chance of arresting the growth while waiting for approval for the Votrient. But she no sooner got hooked up to it when her heart stopped; she was ok after a couple of thumps on the chest, but Dr. says nothing else for a week while she rests and trys to gain a little bit of weight back. One of the nurses is checking out with the Pharm tech to see what it would cost if we pay for it ourselves, at least enough to see how Mom reacts to it. Thanks for all the info. Dan
Sorry - looking at some of Dad's paperwork. Diagnosis states: a chromophobe subtype of renal cell carcinoma (the eosinophilic variant)0 -
For YOGESH SHAHDan3546 said:Costs
Thanks all - I know that the hospital has full time staffing just to try and get some of these pill type treatments approved with the insurance company and Medicare. The Dr. thougt that votrient would be a little easier on Mom's system and more effective to start compared to Sutent. Did not look at any real evidence of that. Mom has the Non clear cell RCC, Krome (sp?) 4 subtype. She did try an IV Chemo (Temsirolimus) last Tues, thought that might have a chance of arresting the growth while waiting for approval for the Votrient. But she no sooner got hooked up to it when her heart stopped; she was ok after a couple of thumps on the chest, but Dr. says nothing else for a week while she rests and trys to gain a little bit of weight back. One of the nurses is checking out with the Pharm tech to see what it would cost if we pay for it ourselves, at least enough to see how Mom reacts to it. Thanks for all the info. Dan
Sorry - looking at some of Dad's paperwork. Diagnosis states: a chromophobe subtype of renal cell carcinoma (the eosinophilic variant)
Above are many messages about the side-effects of Votrient (which is the commercial name for the drug pazopanib). I hope you find this helpful.0
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