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MDX 1106/Votrient Trial

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

John will be at Hopkins tomorrow being screened for admission to the MDX 1106/votrient trial. Oncologist's office told him to be prepared to be there all day with tests - blood, ekg, stress, etc. He's concerned about stress as he's been miserable with sholder pain for a month now. (Doctor prescribed oxycodene a couple of weeks ago but hasn't helped much.)

If screening goes okay, he'll start trial on May 10. Then on May 11, they have scheduled an MRI of his shoulder.

Will keep you posted on progress.

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

I hope things go well. I'm really interested about all combo options. My improvement since starting the MDX is phenomenal. But who knows how long it will last. Lets hope the treatment helps with the pain. When my pelvis and spine became involved the pain was worse than the surgery. But it went away quickly once treatment started.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

That's music to my ears Fox. Until this shoulder paiin started, he had not experienced much pain. I'm hoping he mimics your response. Thanks for the optimism.

tacyarts
Posts: 73
Joined: Apr 2012

Best of luck to you, I Will be praying for you, I am prob going to be trying a mdx combo drug at hopkins in about 8 weeks.

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

Let's hope you follow the trail Fox has blazed. Do you know what's being paired with MDX? Is it a trial?

tacyarts
Posts: 73
Joined: Apr 2012

One that i will prob do is sutent or the other is voltrent, Yes it is a trial at hopkins.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Sorry Tac; I can't seem to find your earlier posts. And I missed your diagnosis. Since I might be running into you at Hopkins, we may as well be friends. So tell me about yourself.

Thank you for the good wishes and I do hope John can start the trial on Thursday, May 10, but we've had some complications/setbacks.

Yesterday didn't go perfectly. John's been having terrible pain in his shoulder for several weeks now. Yesterday his scan showed bone lesions, growth in his lung nodules, and a pelvic mass. His EKG was a little high (457) and he had a fever and an elevated white blood count. His EKG must be below 450 to qualify for trial and they are going to do another EKG tomorrow. Their thinking is the fever and elevated WBC may be attributed to tumors and his ingestion of nausea medication prior to the EKG.

If EKG is below 450 tomorrow and there are no more setbacks or red flags, he will begin the trial on May 10. He and I are very anxious to fight this disease and have been in a hold mode too long. Fox has had great results with MDX and we're hoping to join him on the winning side of the field. Keep me posted on your plans so we can compare notes.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Okay, we're back on for May 10. EKG's went okay. Since the blood work showed no red flags, the fever and wbc count is being attributed to tumor fever. His thyroid count is low and he will receive medication to bring that up and hopefully restore some of his energy.

On another note John's friends and family will be walking tomorrow at the Baltimore Zoo for National Kidney Foundation. Our team--Walking for John--has raised over $10,000. The walk itself with all teams (over 100) is up to $175,000.

tacyarts
Posts: 73
Joined: Apr 2012

I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

tacyarts
Posts: 73
Joined: Apr 2012

I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

tacyarts
Posts: 73
Joined: Apr 2012

I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

tacyarts
Posts: 73
Joined: Apr 2012

I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

tacyarts
Posts: 73
Joined: Apr 2012

wow i really studdered< sorry bout that guys!!

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

We'll have to stay in touch and compare notes. You're right it is scarey stuff. What stage were you when you had your kidney removed--any mets at that time?

I don't know if you've had the chance to read Fox's posts. He is a source of inspiration for many of us on this board with his response to an MDX1106 trial. If you haven't read his reports, do so. It will improve your spirits.

John starts his trial this week on May 10. Good luck to your starting yours soon and let's hope for wonderful success stories. I'll keep you and your children in my prayers. Keep believin' a cure will come. . .

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

We'll have to stay in touch and compare notes. You're right it is scarey stuff. What stage were you when you had your kidney removed--any mets at that time?

I don't know if you've had the chance to read Fox's posts. He is a source of inspiration for many of us on this board with his response to an MDX1106 trial. If you haven't read his reports, do so. It will improve your spirits.

John starts his trial this week on May 10. Good luck to your starting yours soon and let's hope for wonderful success stories. I'll keep you and your children in my prayers. Keep believin' a cure will come. . .

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

We'll have to stay in touch and compare notes. You're right it is scarey stuff. What stage were you when you had your kidney removed--any mets at that time?

I don't know if you've had the chance to read Fox's posts. He is a source of inspiration for many of us on this board with his response to an MDX1106 trial. If you haven't read his reports, do so. It will improve your spirits.

John starts his trial this week on May 10. Good luck to your starting yours soon and let's hope for wonderful success stories. I'll keep you and your children in my prayers. Keep believin' a cure will come. . .

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Looks like we're having the same speech problem. Must be contagious.

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

I'm glad to be able to report, Alice, that the CSN team is presently working on a re-vamp of the site and hopes to be able to improve the technical performance parameters to reduce the problems of slow loading, downtime and repeat postings etc.

Not only that but they have promised to address the points you and I have made on your thread "Collecting kidney cancer information from Kidney cancer patients".

How great will it be if John and tacyarts enjoy the same sort of success as Fox on MDX-1106? I hope the walk went well yesterday and that John's spirits are up. Has he tried out the MAARS program as yet?

tacyarts
Posts: 73
Joined: Apr 2012

Im not sure what my original stage was, I never asked, and my uroligist never stated. It had not spread as of then, I just assumed that my cancer ordeal was over, the "it cant happen to me" syndrom. I have read foxes posts and I pray for all of us that this IS a clear cut cure. It is so easy to get a little depressed during this whole ordeal, one minute I will be full of hope and positive vibes and the next everything mentally goes downhill fast. This site can surely be uplifting.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Tacyarts,

The first thing I'd suggest you do so you know what you're dealing with is get a copy of your original pathology report that will show how big your tumor was, the grade, and other specifics. Having that knowledge helps you to better understand what you're dealing with.

Did you have the kidney removed at Hopkins? If so, you can probably get your copy electronically. But may because of the time that has passed, they may have to mail. In either case, I think it would be worthwhile for you to get it.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

That's great news TW. Thank you for taking the lead on changes that will positively impact everyone utilizing this Board. Will be anxious to see the tweeks made.

Yes, John does listen to the MAARS program regularly. And he plans to read the book this week while at Hopkins preparing for and receiving the MDX. He made up his mind weeks ago that he wanted to read the book while undergoing treatment.

The walk went really well, and John was able to complete it. He's been a little on the weak side lately so we weren't certain he would conquer it, but he did. WooHoo!!! With all the money collected on line and the checks turned in yesterday at walk time, our team ended up the #1 team. (And I had my picture taken with Paul Kruger of the Baltimore Ravens!) We had a huge turnout of family and friends, and I know it did John a lot of good to see the phenomenol number of people in his corner.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Fox - You mention the pelvis and spine went away quickly once treatment started. John--as you know--started the MDX/Votrient trial this past Thursday, May 10. And while it's only been four days, I see his shoulder pain is less intense. I don't want to sound unreasonably optimistic, but I can't help but think maybe it is the treatment. When you said your pain went away quickly, were you meaning days, weeks, months (?).

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

In review, pain started in my front right pelvic crest where my hip flexor tendon inserts. This was just before Christmas. Progressed to where I couldn't climb stairs step over step, or get into the car without serious effort. Pretty much became homebound. Then mid spine pain began and both were very intense by second or third week of january. Began needing the percocets to get around the house. This was about my 3rd cycle of MDX. Then by mid feb. I could feel the pain diminishing substantially and gone by march. I was able to return to full exercise during march, and have had no pain since. My infusions are every 3 weeks. Also, scans had shown my pelvic crest and t4 had large lesions which are now mostly scarred and inactive. Next scan is in a week and a half. Hope to get continued good reports. I pray John does this well too......also, my wife had suggested that I keep a journal and I have not. So often I am losing some specifics that should be clear. However, I used my treatment calenders to confirm this progression.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

pain

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Thank you for clarifying that Fox. His lessened pain the past several days is probably due to his taking his pain medication on schedule (every four hours) and not just when the pain gets intolerable.
_________________________
P.S. As we all know on this board, you're a star. But your notoriety goes well beyond the margins of this board. Over the past couple months, John and I have told several (probably more than I realize) colleagues/friends of your MDX experience/success/journey. This past weekend, John and I were joined by friends and family for the National Kidney Foundation walk at the Baltimore Zoo. John wore many smiles that day, but several can be attributed to you. In the midst of 5000 walkers, the question "How's Fox doing" rang out several times.

Thank you for all you share.

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

Alice, i thought this item from an email I've just received might interest John

"psychologists at Purdue University in Indiana have recently discovered that better golf players appear to perceive holes as being larger than they actually are.

The research involved showing golfers a board with different size circles drawn on it after they'd finished their round, then asking them to indicate the one which was the size of those on the course (one circle was the same diameter while others were either smaller or larger than real life).

The better players tended to overestimate the size of the holes by between 10 and 20 per cent, and the researchers believe this may have led them to adopt a more positive mindset while they worked their way around the course.

It's probably fair to say that you don't become a winner in any sport by expecting to lose. Whilst I'm sure that being ridiculously over-optimistic can be self-defeating, it seems sensible to assume that it helps to adopt a positive attitude.

In life, as in sport? Go into today expecting it to be a good one, and it may well will be. Start off foreseeing the worst, however, and you might just be proved right."

Have you located the posts you wanted to follow up on?

Has John been reading Jerry's book and, if so, is he enjoying it?

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

"Go into today expecting it to be a good one, and it may well will be. Start off foreseeing the worst, however, and you might just be proved right."

I like that and will add it to the billboard in my brain that's constantly flashing important stuff like this. Thanks. I think I need the reminder more than John. Weeks ago when his shoulder pain started, he self diagnosed himself with a rotary cuff injury and continued to think that as it worsened. I--on the other hand--immediately worried it may be the kidney cancer, though I didn't speak my concern. When the Dr. did the catscan and confirmed it was the cancer. he was surprised and that surprised me.

John has read and enjoyed Jerry White's book. I believe he intends to reread. Maybe that explains his optimisim.

Yes, I did find Chris Lawing's posts. My problem is I had at some point unsubscribed from the site due to the incredible number of emails I was receiving. I rejoined requesting the digest version and hope it will be easier to maintain.

Appreciate your sharing your research.

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

I'm glad John enjoyed the book. I was fairly confident that it would be up his street.

Re the Digest, you may not be surprised that I've been in touch with Robin, Peggy and others to suggest simple ways in which they could improve the list and make it more easily assimilable. There are constraints which seemingly make it difficult but I'm ever hopeful. I, too, hastily went back to the Digest after trying the straight email version and getting my inbox even more swamped. I find the HTML version best and it's worth experimenting with the settings.

However, I've found that there's a better workaround. For research, use the keyword search facility but for everyday keeping up with new info, ignore the Digest and go into the Archive, selecting the latest month. 'Home Page' gives access to the Archive listed by month but it also gives a list of the latest messages, chronologically, with topic and author. You can select the number of messages displayed and I have mine set currently to 10. Going into the current month shows the Table of Contents, with the messages listed, classified by topic, alphabetically and then the messages, expandably, by topic, sub-classified by date. It's a far less painful way of engaging with the information, so much of which is very interesting and potentially helpful.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Thanks for the tips. You're right - the archive method is a much more efficient tool for researching "of interest" topics. Thank you. Also appreciate your efforts to make it more user friendly for all.

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

....Wow! that is humbling and embarrassing. I better keep up the recovery and become the standard for MDX success. It's also kind of funny because long before the diagnosis, I resisted being on the internet at all. I didn't want to be part of any groups. I held the belief that when I did die, I wanted people to say, "Who?" Guess I kinda blew that one. LOL!

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

Your neighbors, however, probably don't like having to draw the shades at night to reduce the glow that's been keeping them awake. LOL!

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