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BMS936558* Votrient trial (formerly MDX 1106) John's 18 week scan

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

John had his third CT scan on 9/12/12 since being on the MDX1106 (BMS936558)/Votrient trial. We received the RECIST (Response Evaluation Criteria In Solid Tumors) from the Radiologist this morning showing total shrinkage to date to be 46% (31% shrinkage first scan; 11% add’l. second scan; and 4% add’l. third scan). While we would have loved to see another double-digit reduction, we’re thankful it’s still moving in the right direction.
_____________________________________

John’s History at Johns Hopkins:

10/14/11 – Diagnosed with 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
11/1/11 – Surgery for removal of right kidney (nephrectomy)

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/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.

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

Alice,

That's 46% in only 4 months, even though it has slowed up a bit that's still wonderful progress, I am soooo happy for you both. I can't wait to see where you are by Christmas, this may be the best one ever for you, I believe it will be.

Way to go,

Gary

tacyarts
Posts: 73
Joined: Apr 2012

Still positive news, I'm sure that you would like a larger # of shrinkage but it is still positive news and still a victory!!! Way to go John!!

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

Tacyarts,

Yep we're still positive, but we're counting on your scan next week to pick up the slack John experienced on this scan. How's your leg? Crutches still necessary?

tacyarts
Posts: 73
Joined: Apr 2012

Still dependent on crutches, but am excited for scans next week. Gotta get pain outta my leg, I haven't been able to work for 3 months now.

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

I'm excited with you. We're keeping everything crossed hoping to hear positive results.

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

I know we're in countdown mode for your scan; but was wondering has the pain eased any?

tacyarts
Posts: 73
Joined: Apr 2012

The pain seems about the same, if not worse. I hope that I am wrong but I don't notice any relief.

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

Thanks Gary. Your cool outfit and your glass half full attitude make you a favorite in these parts!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Great news Alice! Way to go John! All I want for Christmas is my MDX!

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

Alice this is excellent news. Enjoy it! I will be thrilled when I hear the words shrinkage or reduction in tumor burden. Just got back from Nashville. Anxiously await the affirmation that my tumor has the right receptors for PDL1, but was told there were other trials if I wasn't a match. Keep the faith, girl! I've been thinking about you and John and I get a good vibe!

XO Paula

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

Paula and Fox (here we go again)-

Thank you both for that soulnergy. May it go full circle on this board healing everyone it touches.

Paula-when do you expect to hear results? Been thinking about you all day. Thumbs up!

angec's picture
angec
Posts: 621
Joined: Mar 2012

Alice that is AWESOME! So happy it is working. Things take time but it is going in the right direction!!!!

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

Thanks Ange. Keeping our fingers crossed; definitely right direction.

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

Not to many things get me more excited than hearing about cancer tumors slowly dying off.Keep up the good work John and i hope the both of you are able to relax a little.P.S try to eat more pizza John or least foods high in carbs i would hope to hear in the near future you are over 200 pounds and maybe a little chubby.

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

Hey Mike - thanks for the good wishes. John is gaining some weight; he's up to 165. That is an improvement!

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

Dont forget i live in the Chicago area so anytime you desire a real awesome deep dish pizza fed exed to your house just give me a holler and consider it on its way.

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

You're a sweetheart Mike. Thank you for the kind offer!!!

strongmind
Posts: 24
Joined: May 2012

That is wonderful news...keeping you in prayers..stay positive and strong!! best of luck.

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

Stongmind - We'll stay strong together. Thanks!

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

Hi all,

Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.

While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.

____________________________________

John’s History at Johns Hopkins:

10/14/11 – Diagnosed with 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
11/1/11 – Surgery for removal of right kidney (nephrectomy)

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/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion

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

Stable disease is perfectly acceptable! Be thrilled and delighted. There's time for disease regression in the next 12 weeks! The important thing to know is how does John feel? Does he feel like his "old self"? I keep waiting for that to happen to me, but I am so weary sometimes. If John feels good, has energy, and is happy then that is what is really important.

If John has to change from Votrient to Affinitor what will that mean to his participation in the trial? We he still be able to get the MDX?

I'm thinking about you guys, Alice. I would be thrilled with "STABLE". God bless you both.

Love, Paula xo

angec's picture
angec
Posts: 621
Joined: Mar 2012

Hi Alice and John....hey stable is very good!! Not to worry.. I read that it is a good sign if it remains stable, it means the disease is being fought and having a tough time trying to grow. Stable will keep him on board for the trial. Please try not to worry too much about it. Try to enjoy the days ahead, each day has it's own anxieties so take one day at a time! John is doing great! If he is stable then like Fox said, no need to switch treatment at all. Keep going strong my friend, and thank you for the reminder....xxoo

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Your own words are key here Alice, "more importantly, no growth". I am pleased to read about John's progress. Though this check up didn't bring the exact news you were hoping for, I can tell that you are still so very grateful. You sound like an amazing support to John and I wish you both all the best over the next few months. I would agree with many of the above posts, no time for panic just yet. Fingers crossed for more good news x Mel

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

Hi Ali,

Not what you were hoping for, but way better than the alternative. I think they asked fox "If we can't cure you, would you be happy with being stable?" to which he replied "HELL YES!" and he has had some "slow downs" with good results at the next scan. Progress has slowed, but not stopped. Stable is good for now, but I suspect though that the RCC is only enjoying a short respite before MDX comes back from vacation and kicks its ass some more. It has no idea who it is messing with!!

Hang in there,

Gary

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

Thank you all for your pick-us-up comments. You are all right; this is good news. MyBad. No more whiney posts just happy, grateful ones.

John just celebrated his one year anniversary (cancer diagnosis) and the difference in how we feel now compared to then is astonishng. Standing in that Doctor's office a year ago getting the kidney cancer with metastisis diagnosis was like being sent to death row. And now with all the options and possibilities out there, we both feel blessed. We also feel the soulnergy we can always count on from all of you. Thank you so much for reigning us back in when we step outside that beam of light we all provide each other.

Just to verify, John is still in BMS936558/Votrient trial. I know I confused some with the mention of Afinitor, but you're right Fox; it's too soon to think of that.

As far as the verbage used by the research team as far as his scan:
"Report shows everything is stable. This is good news - I know we want to see continued shrinkage, but stable disease is good as well."

And then I responded back: "Is stabilization ever followed by more reduction? I know this is all relatively new but thought I'd pick your brain for experience thus far."

And I received this answer this morning from his Research Nurse. "Yes, we may see some further reduction. Doing scans every 6 weeks makes it really hard to notice small changes. John will now have scans once every 12 weeks, which is the standard of care for kidney cancer. We will see what the RECIST read shows for this CT, and then see what his scan in 12 weeks looks like. If things still look stable at that point, we may consider him to have leveled off - again, stable disease is not a bad thing either!"

So bottom line we're feeling much more positive today. Like some of you mentioned the holidays should be free of scanxiety and --by the time the next scan rolls around--I'll be retired (February 1). YES!!! Life is good and so are all of you; thanks again.

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

Now that's the Alice we all know and love.

As far as retirement goes, throw yourself a party;

Retirement Party

The boss is finally old enough to retire from the company. On his last day of work, he ordered a farewell party for himself. The boss wanted everyone to express their good feeling about him by writing on the farewell card, so later he could remember how his staff "miss" him. Most people are writing standard phrases like, "Without you, the company will never be the same," "We will always remember you," etc.

Obviously the boss was not satisfied. "I need something from the bottom of your heart, something really touching, you know. Okay, John, you have been working with me for the last 20 years. You are my best staff. I am retiring now. What do you have to say?"

Slowly but firmly, John wrote, "The best news in 20 years."

Hope you're not the boss,

Gary

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

Thank you all for your pick-us-up comments. You are all right; this is good news. MyBad. No more whiney posts just happy, grateful ones.

John just celebrated his one year anniversary (cancer diagnosis) and the difference in how we feel now compared to then is astonishng. Standing in that Doctor's office a year ago getting the kidney cancer with metastisis diagnosis was like being sent to death row. And now with all the options and possibilities out there, we both feel blessed. We also feel the soulnergy we can always count on from all of you. Thank you so much for reigning us back in when we step outside that beam of light we all provide each other.

Just to verify, John is still in BMS936558/Votrient trial. I know I confused some with the mention of Afinitor, but you're right Fox; it's too soon to think of that.

As far as the verbage used by the research team as far as his scan:
"Report shows everything is stable. This is good news - I know we want to see continued shrinkage, but stable disease is good as well."

And then I responded back: "Is stabilization ever followed by more reduction? I know this is all relatively new but thought I'd pick your brain for experience thus far."

And I received this answer this morning from his Research Nurse. "Yes, we may see some further reduction. Doing scans every 6 weeks makes it really hard to notice small changes. John will now have scans once every 12 weeks, which is the standard of care for kidney cancer. We will see what the RECIST read shows for this CT, and then see what his scan in 12 weeks looks like. If things still look stable at that point, we may consider him to have leveled off - again, stable disease is not a bad thing either!"

So bottom line we're feeling much more positive today. Like some of you mentioned the holidays should be free of scanxiety and --by the time the next scan rolls around--I'll be retired (February 1). YES!!! Life is good and so are all of you; thanks again.

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.

Karen

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

dup!

tacyarts
Posts: 73
Joined: Apr 2012

Stabilization is still positive, I am happy for you with no growth. I'm sure that you are still a little frustrated but try to stay positive with the fact that you have 46% tumor reduction. Keep fighting!!

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

Thanks Tacyarts - right back to you.

I have to ask -- Stray Cats -- is that named for your wild and unattached friends or the four legged creatures? Since feral/stray cats are a part of my life and volunteerism, just wondering. . .

On one of your appointments, hope to meet you in person at Hopkins!!! Let her know both of you are in my prayers.

tacyarts
Posts: 73
Joined: Apr 2012

The name of my restaurant that I own is called The Stray Cat Cafe. www.straycatmoorefield.com

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

Thanks for the link. Your place looks like fun - vibrant, glowing, alive - looks like just the place for an old dog Fox. Also seems like just the diet of that cool cat of ours!!!

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

dup

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

Thanks Tacyarts - right back to you.

I have to ask -- Stray Cats -- is that named for your wild and unattached friends or the four legged creatures? Since feral/stray cats are a part of my life and volunteerism, just wondering. . .

On one of your appointments, hope to meet you and your wife in person at Hopkins!!! Know you both are in my prayers.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Alice, don't you mean that the "shrinkage" has stabilized? Next scan would tell so much more. I think it is too early to plan a change of action. That would be my argument.

I am alive
Posts: 219
Joined: Jul 2012

Alice,
I know you and John are not completely thrilled with the latest CT but NO NEW GROWTH is a very good thing. It'd be interested to hear from a longttime veteran of these targeted drug therapies to find out what the "norm" is re: TDT progression. I mean, is it not uncommon at all to have impactful shrinkage initially that slows down a bit over time, stablilizes and then increases again? Or once the shrinkage slows does it tend to not increase again?
I hope you and John can kick back and enjoy these next 12 weeks. It'll take you right through the holidays!

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

Hi Alice wish you and John could have gotten maybe a little better results but then again stable disease does have a nice ring to it.

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