Pazopanib Clinical Trial--very good results so far

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  • longie
    longie Member Posts: 1
    #22
    RWBMG8668 said:

    TG level
    TG level was on Meds and it is now in the low thirties. I have my Endo Thu next week and Mayo in the beginning of Feb.

    The scans look really good right now its just no one knows for how long this drug is going to work or what the long term side affects are going to be.

    I will do what I have to do though I have a 5 year old boy that needs me and I plan on doing what I can to make sure that I am around as long as possible.

    I am also doing a clinical trial involving pazopanib and chemo. Just had first re-check last week. Results showed no new and slight shrinkage in 5 locations. 4 small lung and 1 small mass under surface of skin on back. Dealing with melanoma stage4.Will stay on trial going into new cycle period. Anyone else? 11/2010
  • nkongovi
    nkongovi Member Posts: 5
    #23
    RWBMG8668 said:

    It probably was there
    It was probably there but two small to show on a scan. I had PET scan that showed minimum uptake in the lungs so that didn't locate it at that time. During that time I was only going to the doctor every six months. The lymph nodes showed on an X-ray and then I had a thin slice CT scan that showed the lungs.

    I always had an elevated TG level but they were stumped on what was causing it. My doctor said normally they could pin point a TG level of 2 mine was in the 80's and they couldn't find it and he admitted it was a little embarrassing for them. I had multiple little spots contributing to the elevated TG level and nothig showed until it got large enough to be seen on the scan.

    I can relate to your condition.
    Hi RWBMG8668

    I have papillary thyroid carcinoma with mets in the lungs, diagonised recently in July 2010. My Tg count after surgery and RAI is 1500 and scares the hell out of me. So I guess asking my endo abt this clinical trial wouldn't be a bad idea. I live in los angeles. CA

    Any advice.
  • candyland
    candyland Member Posts: 5
    #24
    nkongovi said:

    I can relate to your condition.
    Hi RWBMG8668

    I have papillary thyroid carcinoma with mets in the lungs, diagonised recently in July 2010. My Tg count after surgery and RAI is 1500 and scares the hell out of me. So I guess asking my endo abt this clinical trial wouldn't be a bad idea. I live in los angeles. CA

    Any advice.

    I also have papillary
    I also have papillary thyroid cancer of the lungs. Just found out this past week. I hv 2 nodules. I go to the Mayo Clinic in Jax. I go next week to see what they are going to do for me. The endocrinologist there wants me in the clinical trials also. May due surgery to remove them. After reading about the drugs tho here online it sounds scary. They have horrible side effects.

    I will do whatever they say tho. I'm gonna live..no ifs ands or buts about it.
  • candyland
    candyland Member Posts: 5
    #25
    candyland said:

    I also have papillary
    I also have papillary thyroid cancer of the lungs. Just found out this past week. I hv 2 nodules. I go to the Mayo Clinic in Jax. I go next week to see what they are going to do for me. The endocrinologist there wants me in the clinical trials also. May due surgery to remove them. After reading about the drugs tho here online it sounds scary. They have horrible side effects.

    I will do whatever they say tho. I'm gonna live..no ifs ands or buts about it.

    Is anyone still using this
    Is anyone still using this discussion board? This is the only place I have found that discusses the clinical trials but the last person to respond was back in november or so. I have soo much I want to ask about. I will be starting those clinical trials with the Mayo soon. Please tell me someone is still out there and whats going on with them.
  • alapah
    alapah Member Posts: 287
    #26
    candyland said:

    Is anyone still using this
    Is anyone still using this discussion board? This is the only place I have found that discusses the clinical trials but the last person to respond was back in november or so. I have soo much I want to ask about. I will be starting those clinical trials with the Mayo soon. Please tell me someone is still out there and whats going on with them.

    hey there
    I too have lung mets and work with folks at Mayo in Minnesota. They're doing some ground breaking trails.
    I wanted to suggest that you might try joining a Yahoo group called Adv-thyca because folks that post to that board regularly are dealing with similar kinds of cases themselves and they may be more able to answer your questions than here, though some followers on this board definitely have potential to help you. The yahoo group page that I am referring to can be found at http://health.groups.yahoo.com/group/adv-thyca/
    best to you. i just had six month follow up CT scans today and have many nodules my lungs and am no longer iodine avid. it's scary for sure but know you're not alone.
    eileen
  • miladyx
    miladyx Member Posts: 85
    #27
    alapah said:

    hey there
    I too have lung mets and work with folks at Mayo in Minnesota. They're doing some ground breaking trails.
    I wanted to suggest that you might try joining a Yahoo group called Adv-thyca because folks that post to that board regularly are dealing with similar kinds of cases themselves and they may be more able to answer your questions than here, though some followers on this board definitely have potential to help you. The yahoo group page that I am referring to can be found at http://health.groups.yahoo.com/group/adv-thyca/
    best to you. i just had six month follow up CT scans today and have many nodules my lungs and am no longer iodine avid. it's scary for sure but know you're not alone.
    eileen

    i am ...
    sorry about the results of the CT scan Eileen. Does the CT scan show increasing or growing nodules? when do they start the trials?
  • alapah
    alapah Member Posts: 287
    #28
    miladyx said:

    i am ...
    sorry about the results of the CT scan Eileen. Does the CT scan show increasing or growing nodules? when do they start the trials?

    i just got the CT scans but
    they have yet to be read. my doc here will send the chest CT to Mayo for the docs there to do the comparison and gauge the rate of growth. we know there are nodules and we know that there were more last time than the very first CT i had a year prior so they are looking to gauge the trend. i suppose i'll learn soon if i am still on a monitoring program or if i need to go to trials.
  • candyland
    candyland Member Posts: 5
    #29
    alapah said:

    i just got the CT scans but
    they have yet to be read. my doc here will send the chest CT to Mayo for the docs there to do the comparison and gauge the rate of growth. we know there are nodules and we know that there were more last time than the very first CT i had a year prior so they are looking to gauge the trend. i suppose i'll learn soon if i am still on a monitoring program or if i need to go to trials.

    Thanks so much for that
    Thanks so much for that link. I went and applied to be a member. I have nodules on my lungs too but the drs say its a small amount of cancer so I caught it pretty early. Still scarey stuff. I think you should try the trials. I go to the Mayo in Jax and I love it. Will never do anything in my hometown again.

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