Votrient/Pazopanib

Raine22
Raine22 Member Posts: 33
I don't post very often. First of all, TW, you are in my thoughts and prayers daily and Fox, thanks for keeping me laughing!

I went today for my 20 week clinical study Ct scans. I was surprised that the insurance declined the pelvic ct, along with the abdomen ct withOUT contrast - not sure if this is strange, or what!

The chest Ct showed NED, but the abdomen shows something on the adrenal gland. They didn't seem especially concerned, but did not refer to it as NED, but rather said they would push up the next CT for 3 months.

I've been reading on the board for a while and don't recall reading anything about the adrenal gland. All I know is that I only have one left;)
The other was removed 3/28/12 with the right kidney, 9cm tumor, Stage 3, Grade 4 clear cell.

Any input would be appreciated!
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Comments

  • angec
    angec Member Posts: 924
    Raine, sorry to hear that
    Raine, sorry to hear that they didn't give you full NED. Is the doctor sending you for a full body pet-ct scan with contrast? That is what you should be getting to get a real picture of everything. The insurance should not deny that. What did the insurance approve of since you obviously had some type of scan done? What dose of Votrient are you on currently? I am not aware of your previous situation, did you have any mets prior to this scan? I am sure others will help you further on the boards. Wishing you all the best.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Raine, sorry to hear that
    Raine, sorry to hear that they didn't give you full NED. Is the doctor sending you for a full body pet-ct scan with contrast? That is what you should be getting to get a real picture of everything. The insurance should not deny that. What did the insurance approve of since you obviously had some type of scan done? What dose of Votrient are you on currently? I am not aware of your previous situation, did you have any mets prior to this scan? I am sure others will help you further on the boards. Wishing you all the best.

    Votrient
    Lorraine, after four and a half months on it, can you tell us about the side-effects you've had and the best ways you've found of coping? Also, as Ange has asked, what dose level are you on and has it changed? Both Ange and I have personal interests in the answers so we'd love to hear a bit more from you on the subject. have your Daughters been able to handly it and help their Mum?
  • Raine22
    Raine22 Member Posts: 33

    Votrient
    Lorraine, after four and a half months on it, can you tell us about the side-effects you've had and the best ways you've found of coping? Also, as Ange has asked, what dose level are you on and has it changed? Both Ange and I have personal interests in the answers so we'd love to hear a bit more from you on the subject. have your Daughters been able to handly it and help their Mum?

    Votrient
    I am on the full 800 mg daily, but remember, I am in the clinical study and its double-blinded, so not even my drs know if I'm on the real drug or the placebo.

    Due to some of the side effects, such as my liver enzymes jumping way high for weeks and then all the sudden, back to normal. M thyroid has been fluctuating and they are keeping a good eye on that. I guess one of the side effects is elevated blood pressure, which I have not experienced. However, I do have extremely low BP to begin with. I had mouth sores a few times and tingling/aching in hands and feet, but no actual sores on hands and feet.

    I am at MDA in Houston and recently went to see family in Cleveland and was fortunate enough too get 2nd opinion. They agreed with my current plan and due to the few side effects, they kind of think that I am on the drug, as MDA feels as well.

    One day I think I'm on it and the next day I don't. I'm extremely fatigued, but I think that is mostly from focusing on this too much. I go back to work for the first time tomorrow (since discovery date of 3/14/12), so that may be part of the problem!!!

    What is scaring me now is that they said the chest was NED but not the abdomen, and that they want to wait/see for next scan in 3-4 months to see if the spot on the adrenal gland changes. Apparently, it's not large enough to biopsy. I was kind of hoping MedScanMan would offer advice here!

    As far as the drug goes, if I am on it, the side effects are very mild for me, but everybody is different. I forgot to mention the headaches I have 4-5 days a week.

    If I can help in anyway, let me know. Unfortunately, I'd have to have a major medical emergency or the cancer would have to metastasize before they will let me know if I've been getting the drug or not.

    Radical right nephrectomy 3/28/12, 9x8.5 Clear cell, stage 3, grade 4
  • angec
    angec Member Posts: 924
    Raine22 said:

    Votrient
    I am on the full 800 mg daily, but remember, I am in the clinical study and its double-blinded, so not even my drs know if I'm on the real drug or the placebo.

    Due to some of the side effects, such as my liver enzymes jumping way high for weeks and then all the sudden, back to normal. M thyroid has been fluctuating and they are keeping a good eye on that. I guess one of the side effects is elevated blood pressure, which I have not experienced. However, I do have extremely low BP to begin with. I had mouth sores a few times and tingling/aching in hands and feet, but no actual sores on hands and feet.

    I am at MDA in Houston and recently went to see family in Cleveland and was fortunate enough too get 2nd opinion. They agreed with my current plan and due to the few side effects, they kind of think that I am on the drug, as MDA feels as well.

    One day I think I'm on it and the next day I don't. I'm extremely fatigued, but I think that is mostly from focusing on this too much. I go back to work for the first time tomorrow (since discovery date of 3/14/12), so that may be part of the problem!!!

    What is scaring me now is that they said the chest was NED but not the abdomen, and that they want to wait/see for next scan in 3-4 months to see if the spot on the adrenal gland changes. Apparently, it's not large enough to biopsy. I was kind of hoping MedScanMan would offer advice here!

    As far as the drug goes, if I am on it, the side effects are very mild for me, but everybody is different. I forgot to mention the headaches I have 4-5 days a week.

    If I can help in anyway, let me know. Unfortunately, I'd have to have a major medical emergency or the cancer would have to metastasize before they will let me know if I've been getting the drug or not.

    Radical right nephrectomy 3/28/12, 9x8.5 Clear cell, stage 3, grade 4

    Hi Raine, thank you for the
    Hi Raine, thank you for the info. I don't know if you have heard of taking a complex vitamin b daily to help with the headaches, mouth sores and any muscle pains or aches. Just wanted to let you know that. I am a little puzzled as to why they have you in a blind study trial for Votrient when you can just take it straight away since it is available. I have also read on other posts that even half the dosage can do the trick. Please see if you can get the full body pet-ct scan next time. That is a complete scan. It has been suggested on many of the different boards I have been on from doctors as well. My mom gets that every three months. Wishing you well at your first day of work. I hope you fall right back into the swing of things. Xxoo
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Hi Raine, thank you for the
    Hi Raine, thank you for the info. I don't know if you have heard of taking a complex vitamin b daily to help with the headaches, mouth sores and any muscle pains or aches. Just wanted to let you know that. I am a little puzzled as to why they have you in a blind study trial for Votrient when you can just take it straight away since it is available. I have also read on other posts that even half the dosage can do the trick. Please see if you can get the full body pet-ct scan next time. That is a complete scan. It has been suggested on many of the different boards I have been on from doctors as well. My mom gets that every three months. Wishing you well at your first day of work. I hope you fall right back into the swing of things. Xxoo

    Votrient side-effects
    Raine, how remiss of me not to have thanked you for your kind words. Thank you also for the info about your experiences so far in the trial. I hope your surmise that you are on the drug proves correct and that you get good results on it. If you are, and the side-effects are so mild, it's welcome news for Ange's Mom and myself, should we start on it soon. You're even better off now that Ange has your back - she's an amazingly tireless researcher considering all her other commitments.

    Please keep us posted on your progress. I'm also a little curious about the choice of a trial, although I guess if you ae on the drug you have the best of both worlds in that you can guarantee being closely monitored all the time. Since our situation here in the UK NHS is so very different, can you explain for me the relationship between the respective responsibilities and liabilities of your insurers and the team conducting the trial? I would also have imagined you would automatically get the most comprehensive of scans.

    My best wishes, too, on your return to work and I hope your colleagues are supportive - with that lovely smile you have, I'm pretty sure they will be rooting for you, as we are.
  • Max Power
    Max Power Member Posts: 60
    Raine22 said:

    Votrient
    I am on the full 800 mg daily, but remember, I am in the clinical study and its double-blinded, so not even my drs know if I'm on the real drug or the placebo.

    Due to some of the side effects, such as my liver enzymes jumping way high for weeks and then all the sudden, back to normal. M thyroid has been fluctuating and they are keeping a good eye on that. I guess one of the side effects is elevated blood pressure, which I have not experienced. However, I do have extremely low BP to begin with. I had mouth sores a few times and tingling/aching in hands and feet, but no actual sores on hands and feet.

    I am at MDA in Houston and recently went to see family in Cleveland and was fortunate enough too get 2nd opinion. They agreed with my current plan and due to the few side effects, they kind of think that I am on the drug, as MDA feels as well.

    One day I think I'm on it and the next day I don't. I'm extremely fatigued, but I think that is mostly from focusing on this too much. I go back to work for the first time tomorrow (since discovery date of 3/14/12), so that may be part of the problem!!!

    What is scaring me now is that they said the chest was NED but not the abdomen, and that they want to wait/see for next scan in 3-4 months to see if the spot on the adrenal gland changes. Apparently, it's not large enough to biopsy. I was kind of hoping MedScanMan would offer advice here!

    As far as the drug goes, if I am on it, the side effects are very mild for me, but everybody is different. I forgot to mention the headaches I have 4-5 days a week.

    If I can help in anyway, let me know. Unfortunately, I'd have to have a major medical emergency or the cancer would have to metastasize before they will let me know if I've been getting the drug or not.

    Radical right nephrectomy 3/28/12, 9x8.5 Clear cell, stage 3, grade 4

    double blind
    I was led to believe (mistakenly I guess) that double blind studies are not made on cancer patients, that all clinical studies simply compare the new drug to the "standard treatment". You are the second person I've talked to who is on a double blind study. I stand corrected!
  • foxhd
    foxhd Member Posts: 3,181
    Max Power said:

    double blind
    I was led to believe (mistakenly I guess) that double blind studies are not made on cancer patients, that all clinical studies simply compare the new drug to the "standard treatment". You are the second person I've talked to who is on a double blind study. I stand corrected!

    Laughing helps
    Raine, if we can lighten your day with a few laughs, then we are all doing good. Sounds like you are not getting placebos. So, keep up the fight. Max, the early votrient study I was offered had a placebo as part of the trial. The concensus is that at least if someone is on the placebo, they are being closely monitored for changes and intervention will be quickly available.
  • Max Power
    Max Power Member Posts: 60
    Raine22 said:

    Votrient
    I am on the full 800 mg daily, but remember, I am in the clinical study and its double-blinded, so not even my drs know if I'm on the real drug or the placebo.

    Due to some of the side effects, such as my liver enzymes jumping way high for weeks and then all the sudden, back to normal. M thyroid has been fluctuating and they are keeping a good eye on that. I guess one of the side effects is elevated blood pressure, which I have not experienced. However, I do have extremely low BP to begin with. I had mouth sores a few times and tingling/aching in hands and feet, but no actual sores on hands and feet.

    I am at MDA in Houston and recently went to see family in Cleveland and was fortunate enough too get 2nd opinion. They agreed with my current plan and due to the few side effects, they kind of think that I am on the drug, as MDA feels as well.

    One day I think I'm on it and the next day I don't. I'm extremely fatigued, but I think that is mostly from focusing on this too much. I go back to work for the first time tomorrow (since discovery date of 3/14/12), so that may be part of the problem!!!

    What is scaring me now is that they said the chest was NED but not the abdomen, and that they want to wait/see for next scan in 3-4 months to see if the spot on the adrenal gland changes. Apparently, it's not large enough to biopsy. I was kind of hoping MedScanMan would offer advice here!

    As far as the drug goes, if I am on it, the side effects are very mild for me, but everybody is different. I forgot to mention the headaches I have 4-5 days a week.

    If I can help in anyway, let me know. Unfortunately, I'd have to have a major medical emergency or the cancer would have to metastasize before they will let me know if I've been getting the drug or not.

    Radical right nephrectomy 3/28/12, 9x8.5 Clear cell, stage 3, grade 4

    New study confirms Votrient as effective as Sutent
    http://www.sciencedaily.com/releases/2012/10/121001084342.htm
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Max Power said:

    double blind
    I was led to believe (mistakenly I guess) that double blind studies are not made on cancer patients, that all clinical studies simply compare the new drug to the "standard treatment". You are the second person I've talked to who is on a double blind study. I stand corrected!

    double blind
    The ethics of human drug trials is a highly contentious topic and the subject of ever more heated debate, both in terms of bad science and in terms of fair treatment - fascinating for students of jurisprudence and philosophers of science alike, not to mention us poor patients.

    As Fox has indicated, the issue of blind and double-blind trials with placebos is doubtless more controversial than those that study new v current gold-standard therapies.

    The issues of informed consent and how far one can know that the patient fully grasps the ramifications are intriguing and probably relatively intransigent dilemmas?
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Max Power said:

    New study confirms Votrient as effective as Sutent
    http://www.sciencedaily.com/releases/2012/10/121001084342.htm

    Votrient v Sutent
    Thanks Max. On Friday I told my onc that I wanted Votrient rather than Sutent and this info has helped vindicate my choice. It's good that it also puts another shot in your locker for later, if/when needed.
  • Max Power
    Max Power Member Posts: 60

    Votrient v Sutent
    Thanks Max. On Friday I told my onc that I wanted Votrient rather than Sutent and this info has helped vindicate my choice. It's good that it also puts another shot in your locker for later, if/when needed.

    Already had it.
    Short duration. My crab seems to halt with any drug, but climbs onward after awhile. I've had IL-2, MDX-1106, Votrient and now Sutent. Curious to see what's next. Last time we talked about it, early 2011, it was Avastin, 10-15% chance of major response...
  • angec
    angec Member Posts: 924
    Max Power said:

    Already had it.
    Short duration. My crab seems to halt with any drug, but climbs onward after awhile. I've had IL-2, MDX-1106, Votrient and now Sutent. Curious to see what's next. Last time we talked about it, early 2011, it was Avastin, 10-15% chance of major response...

    Max, you are stable now for
    Max, you are stable now for two years? Are you currently taking anything? I am sorry, if you mentioned it, i have already forgotten! Thanks for the above link, very useful information.

    TW.. a question to ponder. The Votrient which is stops new vessels from growing. I asked the doctor how do we know it will not prevent the blood from flowing to major organs, he had no answer. Would you happen to know?
  • angec
    angec Member Posts: 924

    double blind
    The ethics of human drug trials is a highly contentious topic and the subject of ever more heated debate, both in terms of bad science and in terms of fair treatment - fascinating for students of jurisprudence and philosophers of science alike, not to mention us poor patients.

    As Fox has indicated, the issue of blind and double-blind trials with placebos is doubtless more controversial than those that study new v current gold-standard therapies.

    The issues of informed consent and how far one can know that the patient fully grasps the ramifications are intriguing and probably relatively intransigent dilemmas?

    I have to admit that I am
    I have to admit that I am not a fan of blind trials. I think it unnecessarily puts the patient through a lot of angst, too many scans/tests and a waste of valuable time. This is just my opinion, not to mention the ethics of it bordering on cruel. I would never submit to a blind study unless it was clearly my only option. That is just me. But if it has upsides that I am not aware of then I truly apologize for that opinion. I hope i am no offending anyone on those trials. But I know several people on double blind trials for various cancers and each day they sit and wonder if they actually have the drug. To me, that is more needless pressure and my heart goes out to them. My sil is currently being asked if she wants to join a double blind trial for possible uterine recurrence.
  • angec
    angec Member Posts: 924

    Votrient v Sutent
    Thanks Max. On Friday I told my onc that I wanted Votrient rather than Sutent and this info has helped vindicate my choice. It's good that it also puts another shot in your locker for later, if/when needed.

    TW, the same article also
    TW, the same article also mentioned that Votrient worked better for people who did not have
    CCRCC. That is a good thing, because it seems to help most types of RCC and has less side affects, that is important.
  • Max Power
    Max Power Member Posts: 60
    angec said:

    Max, you are stable now for
    Max, you are stable now for two years? Are you currently taking anything? I am sorry, if you mentioned it, i have already forgotten! Thanks for the above link, very useful information.

    TW.. a question to ponder. The Votrient which is stops new vessels from growing. I asked the doctor how do we know it will not prevent the blood from flowing to major organs, he had no answer. Would you happen to know?

    it's been 3 years now
    stable with small progression between drugs. Starting Sutent, seems to have stability with some very small shrinkage, I'll take it. Docs and I are working on minimizing side-effects now. I was recently moved from a 4week-2week cycle to 2week-1week, currently seeing how it works.
  • ClaraW
    ClaraW Member Posts: 64
    angec said:

    I have to admit that I am
    I have to admit that I am not a fan of blind trials. I think it unnecessarily puts the patient through a lot of angst, too many scans/tests and a waste of valuable time. This is just my opinion, not to mention the ethics of it bordering on cruel. I would never submit to a blind study unless it was clearly my only option. That is just me. But if it has upsides that I am not aware of then I truly apologize for that opinion. I hope i am no offending anyone on those trials. But I know several people on double blind trials for various cancers and each day they sit and wonder if they actually have the drug. To me, that is more needless pressure and my heart goes out to them. My sil is currently being asked if she wants to join a double blind trial for possible uterine recurrence.

    clinical equipoise
    I think intervention vs placebo rct is unethical unless there is clinical equipoise
  • Max Power
    Max Power Member Posts: 60
    adrenal gland
    I too had some growth on my adrenal gland and also the doc wasn't too concerned about it. I assumed it was because all my lesions were in check. I still have 2, and the one affected was the one without a kidney. (Maybe that's why?)
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    TW, the same article also
    TW, the same article also mentioned that Votrient worked better for people who did not have
    CCRCC. That is a good thing, because it seems to help most types of RCC and has less side affects, that is important.

    Votrient cost/benefit appraisal
    Absolutely!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Max, you are stable now for
    Max, you are stable now for two years? Are you currently taking anything? I am sorry, if you mentioned it, i have already forgotten! Thanks for the above link, very useful information.

    TW.. a question to ponder. The Votrient which is stops new vessels from growing. I asked the doctor how do we know it will not prevent the blood from flowing to major organs, he had no answer. Would you happen to know?

    Blood supply
    The same consideration applies to all the anti-angiogenic agents. Hence one of the needs for careful monitoring of unwanted consequences (side-effects). However, these drugs don't interfere with the existing blood circulation to major organs - that remains unimpaired. It is of concern when it could interfere with the creation of new supply routes, the two obvious ones being placental development in pregnancy and the healing processes in tissue trauma. I am a bit of a risk taker so that could come into play for me on Votrient but fortunately, Ange, I have no intention of falling pregnant anytime soon :)
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Max Power said:

    Already had it.
    Short duration. My crab seems to halt with any drug, but climbs onward after awhile. I've had IL-2, MDX-1106, Votrient and now Sutent. Curious to see what's next. Last time we talked about it, early 2011, it was Avastin, 10-15% chance of major response...

    Votrient
    Max, thanks for not getting crabby with Ange and myself for failing to be aware that you've already tried pazopanib. Have you chronicled your progression through the drugs anywhere? A blog/chronicle could be valuable. How far do you think IL2 may have assisted subsequent treatments? How long were you on V? What benefits did it confer, if any? What side-effects and why did you come off it?