Starting on votrient treatment

Rea
Rea Member Posts: 28
in Kidney Cancer #1

Hi there. Tomorrow I will be starting my votrient treatment After more than a year of NED. my oncologist told me since I am at high risk of metastasis due to my tumor size of 11cm. right now, i have tumors in the lungs, nephrectomy bed and abdomen peritoneal. My dose will be 800mg daily. For those who are on votrient also, when is the best time to take the medicine? How long till the side effect kick in?

I am am really really scared. I have a 2 month old daughter and the thought that I will not be around to watch her grow just breaks my heart. I'm 38 years old hope to win this battle. 

 

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #2
    Sad and sorry

    I wish you well. I just want to ask,  can you get into some immunology drug therapy in your area? Have you had enough opinions? Be your own advocate. Be sure you are getting the treatments you want. Not just the ones your doctor can give you. It took several oncologist visits for me,  before someone said, "I have another option." If it wasn't for her, I would not be here now. According of those doctors.

  • Rea
    Rea Member Posts: 28
    #3
    foxhd said:

    Sad and sorry

    I wish you well. I just want to ask,  can you get into some immunology drug therapy in your area? Have you had enough opinions? Be your own advocate. Be sure you are getting the treatments you want. Not just the ones your doctor can give you. It took several oncologist visits for me,  before someone said, "I have another option." If it wasn't for her, I would not be here now. According of those doctors.

    Thanks foxhd

    In Dubai there are not a lot of registered drugs for cancer, according to my oncologist. i did not seek for a second opinion yet, and my doctor has not mentioned any immunology drug therapy. Is his what you were at? How's the results? I want to lI've for another 20 years or more to be with my kids but with stage 4 rcc, they said you're lucky to reach 5 years :(

  • GSRon
    GSRon Member Posts: 1,303 Member
    #4
    Rea said:

    Thanks foxhd

    In Dubai there are not a lot of registered drugs for cancer, according to my oncologist. i did not seek for a second opinion yet, and my doctor has not mentioned any immunology drug therapy. Is his what you were at? How's the results? I want to lI've for another 20 years or more to be with my kids but with stage 4 rcc, they said you're lucky to reach 5 years :(

    Hi Rea...  Hope you get more

    Hi Rea...  Hope you get more than 20 years..!  And it is possible.  On Votrient, some of us took it just before going to sleep.  The idea is to sleep through all the bad stuff.  I do not know if that really works or not, but worth mentioning.   Some people get few side effects some get many.  The biggest seems to be the fatigue.  And expect your hair to turn bright white.  Oh yes suggest you monitor blood pressure twice a day, and also need to get blood tests done to check for elevated Liver Enzymes.

    Good Luck..!

    Ron

  • Rea
    Rea Member Posts: 28
    #5
    GSRon said:

    Hi Rea...  Hope you get more

    Hi Rea...  Hope you get more than 20 years..!  And it is possible.  On Votrient, some of us took it just before going to sleep.  The idea is to sleep through all the bad stuff.  I do not know if that really works or not, but worth mentioning.   Some people get few side effects some get many.  The biggest seems to be the fatigue.  And expect your hair to turn bright white.  Oh yes suggest you monitor blood pressure twice a day, and also need to get blood tests done to check for elevated Liver Enzymes.

    Good Luck..!

    Ron

    First day

    Thanks Ron for the valuable input. I took my first dose this night and had dinner after an hour. I will strive to extnd my lofe for more than 20 years in God's grace :)

    i I also took anti nausea pill and put moisturizers in my fingers and toes. 

     

    Best of luck to me :)

  • Rea
    Rea Member Posts: 28
    #6
    GSRon said:

    Hi Rea...  Hope you get more

    Hi Rea...  Hope you get more than 20 years..!  And it is possible.  On Votrient, some of us took it just before going to sleep.  The idea is to sleep through all the bad stuff.  I do not know if that really works or not, but worth mentioning.   Some people get few side effects some get many.  The biggest seems to be the fatigue.  And expect your hair to turn bright white.  Oh yes suggest you monitor blood pressure twice a day, and also need to get blood tests done to check for elevated Liver Enzymes.

    Good Luck..!

    Ron

    Side effects onset

    Hi Ron what is the lead time for the side effects to kick in?

  • GSRon
    GSRon Member Posts: 1,303 Member
    #7
    Rea said:

    Side effects onset

    Hi Ron what is the lead time for the side effects to kick in?

    it varies. From a few days to

    it varies. From a few days to weeks. Best guess is that it will start after a few days.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #8
    GSRon said:

    it varies. From a few days to

    it varies. From a few days to weeks. Best guess is that it will start after a few days.

    I forgot about the diarrhea.

    I forgot about the diarrhea. You may need some Imodium. I like the generic brand better. I never had any nausea to speak of.

  • todd121
    todd121 Member Posts: 1,448 Member
    #9
    Sad to hear

    Hi Rea. So sorry to hear you're in this situation. Have you checked out drug studies in your area? I'm not sure how to check, but your oncologist should definitely know.

    If you don't mind me asking, were you Stage 2 or Stage 3 for your initial tumor?

    I believe there was a huge thread at one point discussing when to take votrient and what the side effects are and how to deal with them. Please search for it. I think there might be problems with the search feature on this site. Just because a search doesn't reveal something doesn't mean it's not there. You might have to manually look for it. As I remember that thread had pages of responses, so the response rate would be very high. If I can find it I'll post it for you.

    I had a fellow patient that's been on sutent and/or votrient for years like 8-9 I think and is still doing ok.

    Wishing you the best. I hope votrient works for you.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #10
    Votrient Side Effects Thread

    Here.  Read this:

    http://csn.cancer.org/node/239956

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #11
    todd121 said:

    Votrient Side Effects Thread

    Here.  Read this:

    http://csn.cancer.org/node/239956

    Todd

    Votrient Side Effects

    By the way, one of the very first replies is referring to the old chat board (I think it was ACOR? I'm sure someone will correct me). It has been replaced by Smart Patients. You might want to join that and ask for advice there too. Or at least read there. It tends to be more technical discussion about treatments and the disease.

    www.smartpatients.com

    You can select which groups to join. There's an RCC group.

    Best,

    Todd

  • Rea
    Rea Member Posts: 28
    #12
    todd121 said:

    Sad to hear

    Hi Rea. So sorry to hear you're in this situation. Have you checked out drug studies in your area? I'm not sure how to check, but your oncologist should definitely know.

    If you don't mind me asking, were you Stage 2 or Stage 3 for your initial tumor?

    I believe there was a huge thread at one point discussing when to take votrient and what the side effects are and how to deal with them. Please search for it. I think there might be problems with the search feature on this site. Just because a search doesn't reveal something doesn't mean it's not there. You might have to manually look for it. As I remember that thread had pages of responses, so the response rate would be very high. If I can find it I'll post it for you.

    I had a fellow patient that's been on sutent and/or votrient for years like 8-9 I think and is still doing ok.

    Wishing you the best. I hope votrient works for you.

    Todd

    Thanks Todd

    Thanks todd for the info and the link. I was diagnosed stage 3 last jan 2013. 11 cm tumor nothing on the lymph nodes. I was NED for a year and event got pregnant, a 13 year gap from my youngest then. It was in June during which is my last semester of pregnancy that somethnigh showed in my blood works thus I went for a ct after a month of delivery. This is where we found 3 nodes in the lungs, several on the nephrectomy bed and a lot mre in the peritoneal of athe abdomen  With this kind of spread, surgery s not an option as per my onco.

    I will definitely ask my oncologist for alternative medication but he did nit mention any immuno meds on our last discussion and I was late to do research. My insurance approved already votrient which is quite expensive US$2200 for the 400mg bottle of 30. 

    I am praying to God that votrient will work and that Ill live till I get old and get to see my youngest daughter grow and have family :)

  • foxhd
    foxhd Member Posts: 3,181 Member
    #13
    Rea said:

    Thanks foxhd

    In Dubai there are not a lot of registered drugs for cancer, according to my oncologist. i did not seek for a second opinion yet, and my doctor has not mentioned any immunology drug therapy. Is his what you were at? How's the results? I want to lI've for another 20 years or more to be with my kids but with stage 4 rcc, they said you're lucky to reach 5 years :(

    Stage 3

    Rea, I was diagnosed as stage 3. I think they were wrong because I wasn't a candidate for a votrient trial due to several "spots" in my lungs and liver. The good news is that if I was to have entered that trial, I would not have been eligible for the nivolumab trial (immunology) which has helped keep me alive for 3 years so far. (and Il-2, immunology)There have been some tough times for me, but here I am. Alive and well. Mostly. My future looks good.

  • todd121
    todd121 Member Posts: 1,448 Member
    #14
    Rea said:

    Thanks Todd

    Thanks todd for the info and the link. I was diagnosed stage 3 last jan 2013. 11 cm tumor nothing on the lymph nodes. I was NED for a year and event got pregnant, a 13 year gap from my youngest then. It was in June during which is my last semester of pregnancy that somethnigh showed in my blood works thus I went for a ct after a month of delivery. This is where we found 3 nodes in the lungs, several on the nephrectomy bed and a lot mre in the peritoneal of athe abdomen  With this kind of spread, surgery s not an option as per my onco.

    I will definitely ask my oncologist for alternative medication but he did nit mention any immuno meds on our last discussion and I was late to do research. My insurance approved already votrient which is quite expensive US$2200 for the 400mg bottle of 30. 

    I am praying to God that votrient will work and that Ill live till I get old and get to see my youngest daughter grow and have family :)

    Saying a prayer for you

    I've just said prayers for you as well.

    That stuff is expensive. I had no idea what it costs. The everolimus I took was part of a study so it was given to me free. My insurance (and me via copays) just had to cover CT scans and blood work.

    I'm glad the insurance is approving your treatment.

    Best to you Rea.

    Todd

  • Rea
    Rea Member Posts: 28
    #15
    todd121 said:

    Saying a prayer for you

    I've just said prayers for you as well.

    That stuff is expensive. I had no idea what it costs. The everolimus I took was part of a study so it was given to me free. My insurance (and me via copays) just had to cover CT scans and blood work.

    I'm glad the insurance is approving your treatment.

    Best to you Rea.

    Todd

    Thanks for the prayer Todd

    Thank you very much for the prayer. prayer is my weapon to fight this battle. Day 2 and I'm still good. I hope it will stay this way, no side effect so far except for loose vowel and a bit of stomach pain. 

    Have to be on my toes working so insurance cam cover my medication. 

    I am really thankful for for this site, I have you guys to speak to and let my feelings out :)

    i pray we all win our battle over this :)

  • Rea
    Rea Member Posts: 28
    #16
    foxhd said:

    Stage 3

    Rea, I was diagnosed as stage 3. I think they were wrong because I wasn't a candidate for a votrient trial due to several "spots" in my lungs and liver. The good news is that if I was to have entered that trial, I would not have been eligible for the nivolumab trial (immunology) which has helped keep me alive for 3 years so far. (and Il-2, immunology)There have been some tough times for me, but here I am. Alive and well. Mostly. My future looks good.

    Immunology

    I wil check with my onco if immunology is offered here. Thanks fox :)

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