Nov 14, 2013 - 10:19 pm
Haven't been here to post in a while, but there has been so much going on with mom.
As some may already know, my mom was diagnosed with stage iv clear cell rcc with multiple mets to both lungs and liver in July of this year. She had her left open radical nephrectomy on August 1. She started Votrient 600mg the first week of September and has had a few breaks due to side effects (mainly hand foot syndrome which was very painful for her). She was also on hold from Votrient because she had some gynecological issues that they thought was an infection, so she was on antibiotics for 2 weeks too. She was dropped down to 400mg of votrient but still had painful hands and feet even though we were trying everything we could. The gyn issue was still a problem and they thought it was an infection again so they started mom on another course of antibiotics...this time for 2 weeks and WHILE on the votrient! Talk about liver damage.
This gynecological issue, we have been told this week, is actually most likely metastasis to her vulva. The gynecologist at mskcc said she has only seen 1 case of cancer metastasizing there in 10 years. She said we would need a biopsy to confirm 100% but based on the ct scans and her pelvic exam, she said it's most likely a met. Our oncologist said he didn't think a biopsy was necessary because he doesn't want to put mom through that and even if it was a met, it wouldn't change any treatment. This was our worse nightmare. It's such a rare issue that I'm not sure anyone knows how to go about treating it...and to think mom had a total of 4 weeks worth of antibiotics getting rid of what we were told was an infection.
The only good news we've received in the past few weeks is that the lung and liver mets actually look better. He didn't give us a specific number or percentage of improvement, but he said when you look at the 2 scans and compare, there's significant improvement.
Now our oncologist wants to drop votrient altogether and start Avastin. Do you think it's too soon to drop Votrient? Do you think it's worth trying the 200mg dose even though mom still couldn't tolerate a 400mg dose? I'm just hesitant to stop so soon because we've had great results with it. I haven't heard much about Avastin anywhere, does anyone know how well it works or if it's well tolerated? It was also nice just to be able to take the Votrient in pill form...now if she starts Avastin, mom will need to go for an infusion every 2 weeks at the clinic.
We're looking into a second opinion right now but the soonest appointment we can get with the urological oncologist we want to see the Yale's Smilow center is the first week of December. I'm just worried about being off treatment altogether until December...Our oncologist can start Avastin as soon as November 21st. Do you think we should just wait to get the second opinion first and then make a decision? I also want to see if mom can get into a clinical trial for a anti PD or anti PD 1 drug there too.
Sorry, so much rambling but there's just been so much to digest in the past few weeks.