BMS93558* Votrient trial (formerly MDX 1106)

tacyarts said:

great
What wonderful news, I am so happy for the two of you, enjoy the day!! I'm still waitin to start my trial, i think that it will be in a couple of weeks yet.

alice124 said:

Feeling so fortunate you're here
Thank you - thank you - thank you. I'm grasping for words here. Just can't find anything adequate to describe what I'm feeling. People on this board are my extended family and are an important part of my life. I worry about you; I celebrate with you; and I share with you. And, in some respect. It’s in a capacity beyond what I share with family and friends.

For example, when we received John's scan report yesterday, I couldn’t wait to tell you about it, even before sharing with close friends and family. And John shared my need to share with you. Though he isn't a poster, he reads everything here. Actually , he's a professional lurker. But he realizes--like I do--that members of this board are our soulnergy. That word is not in Webster's; in fact, I just made it up. But it reflects the strength, optimism, and positive energy that's in this connection. I guess it come from us fighting the same war. We celebrate winning battles as well as encourage regrouping when the results aren’t what we wanted.

Fox--you are so right. I do know exactly what you were feeling . You said you felt like you were going to cry, and I cried. That’s our soulnergy.

Love you all and thank you so much.

alice124 said:

Soulnergy
Paula,

I'm addicted with you. This is where I come when I'm anxious, scared, can't sleep, or when I need a reminder we're not in this fight alone. Or to find out who's due for the next scan or report results.

My soulnergy is with you as are my and John's prayers. Know you're not alone. There's a lot of empathetic, caring people--I've never met personally--who are here if I need them. God I love the sound of that and please don't hesitate to come back for reassurance, for support, or just to talk. I know lately a lot of us have spent time on the Kidney Acor site. It's a great place with huge amounts of technical expertise and options. It's where I go when I need technical answers. This is where I come when I need my soulnergy refueled and where I call home.

Keep us posted Paula. Thinking of you.

alice124 said:

John's Trial
Just got a secondary report from John's scan that breaks his progress into percentages. 31% reduction, not bad for six weeks!

Thank all of you for your support and good wishes. Hugs and kisses ccomin' at you.

pjune127 said:

Need some soulnergy NOW!
Well, Alice and others. Got my scan results today and Sutent has let me down. After 10 months, 2 lesions in my lungs have grown significantly. No new cancer, but the two spots that had shrunk are now growing again. I will be on Inlyta starting next week. If (or when) that fails, a trial is on the horizon .

Thanks for being here everyone.

Paula

alice124 said:

Soulnergy never left you
Paula,

I'm sorry your scans showed growth. Hope Inlyta reverses that trend. Has your doctor mentioned what kind of trial he might be thinking if treatment goes beyong Inlyta? What part of the country are you located? (I just went back and tried to search your posts but only one of your posts came up. Obviously, it's an indication of my lack of searching skills, so forgive me for asking what you probably have already posted.) I did see in the one posting I found that you had decided against HDIL2, but I was surprised that someone mentioned to you an age limit--59? John entered that trial at 63.


Amyway, if you get in a trial. I'm hoping your trial will be something similar to what John is on, the Votrient/MDX. For one reason, I believe the side effects of the both MDX and Votrient are rather mild.

Keep your spirits up; lots of soulnergy coming your way. Thank God, at this time in cancer treatments, there's many possibilities for treatment. I was reading the other day on the Kidney-Acor site and one of the moderators had over 100 nodules in her lungs when she underwent HDIL2. She was an HDIL2 responder, but I mention to assure you that two nodules are very treatable. John had multiple lung mets before starting the trial and now there's at least shrinkage and some have totally disappeared.

So hang in there with spirits up and soulnergy abound. We'll get you through this rough patch.

alice124 said:

Brief 9 week update
John had his nine week infusion on Thursday (BMS93558) and had bloodwork, ekg, etc.

The bloodwork was overall okay with alkaline phosphatese still elevated - still bouncing around. A month or two ago it was over 800 now it's at 325,but it was 250 three weeks ago. I believe the optimal number for this is between 30 and 120. They attribute the elevation to bone involvement, but intend to do nothing about it right now.

One liver function test--alanine amino transferase--is slightly elevated which could be a side effect of the Votrient/Panzopanib. The thyroid test also was low (0.05), even after lowering the thyroid medication last visit. They've cut it in half for the second time and will continue to monitor. To be honest since it's lower this time than it was last time when they cut it, I wonder why they just don't stop the medication, but they certainly know more than me. I hope this can somehow explain his lack of energy overall.

His red blood cell count continues to climb but still below normal (2.12). His platelets also are little low, another possible side effect of Votrient.

He also is going to back to his primary doctor after finding a first degree heart block. They will let him determine if John needs to see a cardiologist.

So while all of the above was noted on report, they plan to stay on schedule. We're both anxious for next scan.