Moved to lungs :(
At age 43 on Feb 2013 my right kidney was removed. It held a 9cm, grade 4 tumor but was thought to be contained in the kidney. There were two very tiny spots - one on each lung that was also present at the original CT scan that found the kidney mass (actually I found the mass by feeling my waistline after 6 months of working out and feeling proud of myself. I didn't expect the hard lump. Thank God my doctor listened to me since she couldn't feel it and I was having no symptoms of anything and scheduled an ultrasound "just in case.") I took pazopanib for 40 weeks following the surgery as part of a clinical trial testing the drug as a prophylactic. As part of the study I was having scans every six months. Last November 2015 still no changes and all was good. Then May came..... the lesion on my right lung went from .3cm to .6cm and the one on my left lung went from .3cm to .7cm (still amazed how things that tiny can show up and cause so much turmoil!). My oncologist recommended their removal. I had wedge resections done on both lungs on June 30th and it confirmed that the lesions were RCC.
So, did the pazopanib keep those lesions from growing for three years?! Has anyone else taken any type of treatment to keep this stuff from coming back when in all other respects you are NED? I am freaking out because from what I have read long term prognosis for this doesn't look good and my oncologist doesn't exactly paint a rosie picture that I might not see this again. He says no treatment now because without a lesion to measure progress there isn't a way to know if the drug is working. I, on the other hand, think the drug did work in 2013 and it kept the lesions on my lungs growing for 3 years so why can't the drug keep any microscopic disease from growing?! I am in the middle of planning my daughter's wedding and all I can think about is not being around to watch my grandbabies grow up.
Any words of advice or encouragement would be so appreciated.
Comments
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Sorry
I too have them in my lungs and my Lymphnodes, I don't know much about the drugs but there is always a chance the tumors can come back. The thing is you can't spend your time worrying about what might happen, instead focus on enjoying your life now, plan the wedding, and start planning events you want to do with your grandchildren, no one knows what life as instore for us and time spent thinking about what could happen is wasted energy. Hug everyone tighter and remember to tell those you love that you love them everyday. Stay strong and positive, this is a marathon not a sprint. There are many drugs out there that combat RCC and continue to give life to those of us combating this disease, thoughts and prayers are with you.
Mark
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Sorry to hear that
Hi! Sorry to hear that. I've been on Votrient/pazopanib and NED for 2.5 years with varying dosages to maintain a decent quality of life. But, my last scan two months ago showed new activity in a lymph node in chest, so we increased the Votrient dosage (ugh!) and will rescan and reevaluate in October. I'm tryin' hard not to sweat it until then--I'm so busy that that's usually not a problem. But the fact that I'm on this board is an indicator that I can't push it entirely out of my head. Knowing that I'm in God's hands is my only real comfort. Meanwhile, I've been doing some amazing things since this diagnosis, and I'm not done yet, so I keep at it. I still make my wife laugh and I smile when she hands out my meds. So life's good -- 'cept when I'm in the bathroom with my wet wipes.
Hang in there. Get busy with your family and occupy yourself with fullfilling activities--don't leave any room in your life for worry. :-)
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Hello
How wonderful to be planning your daughters wedding. That will keep you busy. Votrient shrunk all 3 tumors I had left after removal of 2. My stomach tumor never came back but my rcc lung tumor and left adrenal gland tumor more than doubled from the size they were before the votrient in 2 1/2 months. Because of protein and high blood pressure I was only able to tolerate votrient for 8 months. My understanding from my Dr. was that if the votrient worked and I was able to tolerate it I would take it for the rest of my life.
Best wishes and I hope you dance at the wedding.
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Continue on the Votrient
My doctor would probably be the opposite. He wants me to be on some kind of medication all the time. I had my left kidney removed in may, 2012. Routine yearly scan showed tumor in lymph node. Had that radiated in October, 2014. Tumor shrank significantly. No way to removed it since it is in a critical spot. Had been more than 2 years since they found it and is stable as of the last CT two weeks ago. I agree with mrou50, just live your life and deal with disease as best you can.
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I'm so sorry for you!
Please know how sorry I am for what you are dealing with! I pray you will also help plan your grandchildren's weddings
I have a CT tomorrow of chest, abdomen, and pelvis to re check a ping pong ball sized spot (2 cm x 2 cm) in my lung found June 2015 (post RCC with right nephrectomy-June 2014). The PET scan result of this 'suspicious spot' last year was inconclusive, mainly stating it seemed to be water attenuated and therefore, will be followed up in a year, comparing size. They don't want to biopsy or remove due to its location - as it is laying next to my aorta
I am preparing my DISGUSTING tasting gastrografin mixture tonight for early morning CT with contrast. ughhhhh0 -
Feeling optimistic
Thank you to all of you for the kind words. I am sorry there are so many people dealing with this. I had a CT last week and I am officially NED right now!!! I am going to take the advice from mrou50 and others to just live life to the fullest. If it does come back someday I will deal with it then but for now life is good. I can't wait to see my daughter walk down that aisle next week!
God bless all of you!
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Dancing.........hardo718 said:That's awesome news!!
So happy for you that NED paid you a visit and you have peace of mind so you can move forward and truly enjoy that wedding.
Dance like no one is watching,
Donna~
My daughter may just have to look the other way because I will definitely be dancing and celebrating!
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Coolness!
I'm very happy for you. I hope you make some good and long lasting memories next week.
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This is just the happiest news!!!!
Could not be happier for you! Enjoy the wedding - you so deserve it!
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