Clinical Studies

Raine22
Raine22 Member Posts: 33
in Kidney Cancer #1
Hello to all! I'm a newbie and have been reading and reading. Finally I asked my daughter for help on how to start a new topic!

I am a T3a, Grade 4, 49 yr old female. The radical nephretomy removed the right kidney, which was 9 x 8.5 x 5.8 on 3/28/12.

I'm wondering if anybody out there is in a clinical study for Pazopanib/placebo study?

Any feedback would be appreciated!

Strange how a follow up visit to my family doctor changed my life during a lunch hour from work - of which I've yet to return. I'm just now getting used to the idea and feel as though I've been living a dream for nearly 3 months.

Comments

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #2
    Dream world
    So glad you're recovering. I haven't had any "drugs", clinical studies,etc. But wish you well as you get on with living.
    Mine was Dx'd at age 63, Stage 4, 12x8x8(I've had baked potatos that size), Right radical plus left half of liver and set of nodes. I've had 2 separate recurrences, both in single nodes, both taken out surgically. It's 6 years, and 3 of those with no NED. Just starting into my 4th year.
    Many CT's, ultrasounds, a bone scan, a PET scan, biopsies, numerous Xrays, lab tests and Dr. visits, I'm still here to remind family & friends that we can still beat cancer.

    Sometimes the other stuff can put a crimp in activities...We live on the Pacific side; while visiting Charleston, SC, I fell and dislocatd my foot and broke my ankle in 3 places. That was a bummer, and I still know I have plates and screws in my ankle. Being on crutches for over 7 weeks ruined a tendon in my wrist, for which I had surgery, and has left me with limited range of motion. Also, I don't recommend having bronchitis and needing to be hospitalized while in Mexico. Fabulous, caring nurses and Dr.'s, but lousy way to spend a vacation.

    I guess what I'm saying is to go on living. One day you'll reach a point where you don't think about "it" every day.

    All my best.
    donna_lee
  • KJones1969
    KJones1969 Member Posts: 158
    #3
    Pazopanib
    My husband is not in a clinical trial but is on Pazopanib/Votrient. This is his second month on it and for the most he has done well with it. He is extremely tired and his hemoglobin has dropped some but other than those two he is doing well with Votrient. Our doctor told us it has less side effects than any of the other options out there.

    He had a radical nephroectomy on March 15th and started Votrient May 5th. Good luck to you.
  • ivfour
    ivfour Member Posts: 49
    #4
    KJones1969 said:

    Pazopanib
    My husband is not in a clinical trial but is on Pazopanib/Votrient. This is his second month on it and for the most he has done well with it. He is extremely tired and his hemoglobin has dropped some but other than those two he is doing well with Votrient. Our doctor told us it has less side effects than any of the other options out there.

    He had a radical nephroectomy on March 15th and started Votrient May 5th. Good luck to you.

    Votrient
    I have not been in a trial but was diagnosed with RCC stage IV with meta to the lung last April after a serous motorcycle accident. Imhave been on votrient 400mg daily for almost the last full year and have negative scans for the past two times with six months in between. Oncologist is looking at staying on it for 5 years and the. See what experts say. I have been very blessed with minimal GI upset , elevTed liver enzymes at times, some fatigue, and slightly elevated bp controlled with medication. Votrient has been great for mend pray it helps you as well.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #5
    ivfour said:

    Votrient
    I have not been in a trial but was diagnosed with RCC stage IV with meta to the lung last April after a serous motorcycle accident. Imhave been on votrient 400mg daily for almost the last full year and have negative scans for the past two times with six months in between. Oncologist is looking at staying on it for 5 years and the. See what experts say. I have been very blessed with minimal GI upset , elevTed liver enzymes at times, some fatigue, and slightly elevated bp controlled with medication. Votrient has been great for mend pray it helps you as well.

    Clinical studies
    ..Hey Rainey, There are some here on the votrient trial. They will respond when they get around to reading this. I was offered this trial. Chose not to participate. I was not in a position where I knew very much but, when the possibility of placebo entered the picture, I decided no. MDX was offered down the road. And I jumped at it. You can search my MDX posts. Unfortunately, MDX is not open at this time, but, I am sure variations of it will become available soon. It doesn't just treat the cancer, it is proving that it may just eliminate it. but just know, what is right for me, may not be right for someone else.
  • alice124
    alice124 Member Posts: 896 Member
    #6
    Pazopanib (Votrient)
    Raine,

    My husband is into his ninth week of a Pazopanib/MDX1106* (*renamed BMS936558) trial. He takes 800 mg of Pazopanib daily and receives an infusion of BMS936558 every three weeks. So far, so good. Not nasty side efffects.

    He will receive his first scan on Wednesday of this week. We're both hopeful for good news. Good luck to you.
  • Limelife50
    Limelife50 Member Posts: 476
    #7
    alice124 said:

    Pazopanib (Votrient)
    Raine,

    My husband is into his ninth week of a Pazopanib/MDX1106* (*renamed BMS936558) trial. He takes 800 mg of Pazopanib daily and receives an infusion of BMS936558 every three weeks. So far, so good. Not nasty side efffects.

    He will receive his first scan on Wednesday of this week. We're both hopeful for good news. Good luck to you.

    Hi Alice
    Just to let you know i have always followed you and your husbands journey since the first day you joined CSN.I really hope you two get some good news this week concearning up coming scan on wednesday,you two are way overdue for some good news, and i also noticed thru everything i never read any of your posts that had any hint of neganivity to them,i will keep my fingers crossed for the two of you.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #8
    Limelife50 said:

    Hi Alice
    Just to let you know i have always followed you and your husbands journey since the first day you joined CSN.I really hope you two get some good news this week concearning up coming scan on wednesday,you two are way overdue for some good news, and i also noticed thru everything i never read any of your posts that had any hint of neganivity to them,i will keep my fingers crossed for the two of you.

    Wednesday's scan
    Alice and John - I'd like to associate myself with Mike's message above.
  • alice124
    alice124 Member Posts: 896 Member
    #9
    Texas_wedge said:

    Wednesday's scan
    Alice and John - I'd like to associate myself with Mike's message above.

    Thank you
    What a lovely note Mike; thank you so very much. And you too TW. Anyone on this board long enough realizes the KC cheering section is second to none. Sincere thanks to you both and hopes and dreams for clean scans here on out!!!
  • Raine22
    Raine22 Member Posts: 33
    #10
    alice124 said:

    Pazopanib (Votrient)
    Raine,

    My husband is into his ninth week of a Pazopanib/MDX1106* (*renamed BMS936558) trial. He takes 800 mg of Pazopanib daily and receives an infusion of BMS936558 every three weeks. So far, so good. Not nasty side efffects.

    He will receive his first scan on Wednesday of this week. We're both hopeful for good news. Good luck to you.

    Pazopanib
    Thank you all for responding! Today is only 3 weeks in at 600 mg daily. I feel exhausted by mid-afternoon, and not certain if it's in my head or not! My liver enzymes are up as of today, so good or bad - I'm not certain! Maybe it means that I'm not getting the placebo, but who the heck knows! I may never know!

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