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BMS93558* Votrient trial (formerly MDX 1106)

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

John had his six-week CT scan today. For those of you that are unfamiliar with John’s history,see below for quick update.

The scan showed SIGNIFICANT interval decrease in the size of multiple pulmonary metastases with no evidence of new lesions. There also is a decrease in the pelvic and shoulder regions.

The research assistant who walked him through the tests today was thrilled. She said with this much improvement in six weeks, she can’t wait for the twelve week scan.
We’re meeting with Dr. Hammers tomorrow to go over the report in more detail but right now I’m pumped!

Thank you all for your support, prayers and positive energy!!!

Alice (caregiver for husband-John)
John – 63 Caucasian
Diagnosed: 10/14/11 Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
Surgeries: right nephrectomy - 11/1/11
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)

5/10/2012 – Began MDX1106 (BMS93558) Votrient trial

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Wonderful news Alice - hearty congratulations to you both. I was feeling a bit flat after playing some truly dreadful golf this morning. News like yours puts things back into a proper perspective. (Also always good to hear when a fellow sarcy stage 4 grade 4 is beating it back like John is doing!)

Your results sound very reminiscent of Fox's and others even earlier in the MDX trials. Let's hope it really is the silver bullet (and maybe even applicable to some of us rarer sub-types too, in due course).

[Glad to see how it's cheered Wendy too!!]
[and Chris!]

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Alice,

That is wonderful news and well deserved if I may say! You guys must be on cloud 9 and have carried the spirits of so many along with you, CONGRATULATIONS!

tacyarts
Posts: 73
Joined: Apr 2012

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.

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Alice, I am SO HAPPY!!!!!!! I am so glad I got a chance to check this board one more time before sunday or monday. Emotionally, I feel like I did when they told me of my progress. I have never felt closer to my new family. Can't believe I am holding back my tears. Somehow I know that you know exactly how I am feeling. I am out of breath and want to hug and kiss you. Thank you for your support and back at you 10 times!!!!!!!!!!!!!!........gonna cry a little. FLY!!!

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Hey Alice its about time,tell your husband John that Mike in Chicago sends out a big CONGRATULATIONS!!!!!,also tell him keep em coming

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Alice,

I love your new word and the positive outlook you bring every time you post, that's what keeps an old-timer like me coming back for more. I didn't think it possible, but your smile seems to have gotten bigger and brighter in your pic.

To John and all "professional lurkers" out there, we'd love to hear from you but it matters not if we don't, you are a very welcome part of the "family" and your presence adds to the positive soulnergy that lives here, so by all means stick around.

A fellow traveler,

Gary

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Hi Alice. I have only posted on here two or three times, so I guess I am a lurker as well. Even though I am not very active here, I visit regularly to get my dose of what you call soulnergy. It's amazing how much better it makes me feel. It is the perfect antidote for any feelings of isolation, despondence, or anxiety. I am addicted. :) I am one year past diagnosis and radical surgery. Been on Sutent since last August and going for a CT scan on Tuesday. I am brutally aware of how your life can totally change in a flash! My appointment for scan results is Thursday, the 28th. Some positive thoughts, energy, and prayer would be much appreciated by all you "brothers and sisters" that hang out here. I pray for all of us!

With much admiration, love, and respect,
Paula

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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.

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Hi Alice! I'm so very happy for the good news! You both must be very happy campers!!
Congrats!
Raine

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

I am so happy for your and John's great news. I hope he continutes to show improvement and just maybe the mets to his lungs will go away. I come here as well to get lifted up and see what has brought everyone else through this, especially the caregivers.

Take care and prayers your way!

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

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

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Sorry about your results. But let's hope a little change in treatment will put you back on course. Remember the common theme here is to stay strong for the next great thing just around the corner. FLY. Fox.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Just when I needed soulnergy the most, you guys were there! I am so touched by your comments. I am hoping Inlyta does the job. If not, my oncologist is talking about a phase 2 trial of BMS-936558. He said he would discourage me from a phase one trial since it basically tests for toxicity. What do you think? He also added that there is so much progress in treatment for kidney cancer that the main object is to maintain until the cure is found. So I'm praying Inlyta will stabilize me for a good long time.

Alice, I am so encouraged by John's progress. It is music to my ears! You all are forever in my prayers.

Paula XO

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

31% reductions sounds awesome!!!! Hugs and Kisses back at you and John.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

That's great news. I'm happy for John and you!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for that Alice. Anyone who could handle 24 doses of HDIL2 will come out well ahead on the current trial. I can't wait to see John mount the podium alongside Fox!

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Alice, the one thing I am learning is that every scan is anxiety producing. Make us proud John! T-W, don't hand out the trophy until all the votes are in. I won't give it back without a fight.

aditya_fighter
Posts: 20
Joined: Jul 2012

Dear All

I had been reading posts on this discussion board since last 4-5 days and believe me, I have got connected with all of you. I am getting so much inspiration and strength, after reading all positive thoughts of yours.

Can somebody please tell me, whether MDX 1106 and Votrient are same or different drugs. How do you take MDX 1106. Is it oral or infused through IV line.

I am thinking of seeking the opinion of MD Anderson Cancer Institute in Houston, Texas regarding my further treatment. Whether Votrient is good enough for me or HD IL2 or MDX 1106 would be more suitable. The brief history of my case is as under

Name Aditya
Native India
Sex Male
Age 51 years
Weight 86 Kg (lost 9 Kg during the surgery etc)
Symtoms Acute cough for last 2 years

Diaganosis RCC, clear cell carcinoma on 21.5.12. Tumor size 16cmx11cmx10cm. Some pulmonary nodules/metastasis of very small size (uptake value 1.9 cms) detected in PET scan. No evidence of active desease anywhere else in the body.

Radical nephrectomy done on left kidney on 25.5.12. Cough totally vanished. Put on Votrient 800 mg OD since 10.6.12. No scan done after surgery. Next scan due in mid Sept 12. Good prognosis, no co-morbadities, general health is good.

I am in a confused state of mind, because in India, medical oncos are not adequately experienced with HD IL2 or MDX 1106 etc. I also understand that if I remain on Votrient for long, say 3 months or so, then I would not be able to take HD IL2, even if it is advised at a later date. Some of my relatives, who are doctors, are advising me to seek opinion from MD Anderson Institute.

Dear ones, can somebody guide me in this matter, as to, what should I do. I would also like to know about costs of these treatments as my insurance does not cover international treatment, so I would like to know whether I would be able to afford it or not.

I would be grateful for your help.

Aditya

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