mdv3100 trial

i will be posting updates and will let everyone know the day we start and what info i can my husbands greatest wish is that even thou this may not save him it may save someone :)

CC

Was wondering if you tried ARN-509? Supposed to be similar to MDV 3100.

Hoping you have much success with MDV 3100.

Zimac

Zimac
no i have not heard of it but will ask onc about it

Kathy
thank you very much :)

Goodlife

no there is no placebo in this trial i will let your know exactly why when I find out but my understanding is testing the bone mets and seeing if having it sooner is better but i am not really sure on this but will let you know :)

My business associate has been on it since late January with fantastic results. His PSA dropped more than forty points to undetectable. The Urologist had said that in December his cancer had just exploded, and now Robert is a poster boy for MDV-3100! We are told that all twelve people on the trial here in Virginia are having excellent results, so lets all keep our fingers crossed that this is the magic bullet we have been waiting for!

Beachbum

Best of luck with MDV-3100, there have been some excellent results in the trials. I'm in a trial for ARN-509 at UCSF....on it for about 7 weeks and my PSA is 0.15 !!

C.C. - Your husband has started the MDV3100! I am so anxious to hear how this is going as my husband will start on July 16. How many pills is it? How often do you have to have appts?
I will be posting my own thread once it officially starts but I hope you can update your story! Thanks!

Folks I am in the Prevail clinical trial for MDV3100. I am in the 7th month so it is still early days. My PSA was 250 when diagnosed 2 years ago at age 66, gleeson score was 4+4 with some 4+5, my PC had metastized to my lymph nodes and bones. My initial treatment was Cosudex and then Zoladex. This dropped my PSA down to 3.3 over 8 months, then my PSA sesawed up and down for the next 8 months. CT and bone scans in 2010 showed the evidence of my PC in my bones and lymph nodes. Repeat scans in November 2011 showed evidence of increased PC in those areas. When I commenced the trial in December 2011 my PSA was 4.9, my PSA continued to rise, peaking at 6.6 in May 2012 and dropping back to 5.9 in June 2012.Whilst this fall is only small it is still very encouraging. However, the exciting news is my CT and bone scan reports read "stable sketatel metastized disease and now measurable, nil but evidence of non-measurable metastic disease present".
Again it is early days, but these early indicators are fantastic, and are almost a miracle and gives me hope that MDV3100 will provide me with some years of survival and QOL. It also gives me hope for my fellow suffers of PC that they will also gain the benefit of this drug in the future.
The side effects are very tolerable, in my case my fatigue is a bit worse, I now suffer from some headaches, some bouts of diarrhea and my blood pressure has increased. We are still working on dropping my BP, but it is taking some time to find the best combination of medication for this. I still have the usual side effects from Zoladex (depression, mood swings, ED, some incontinence, weight gain, lack of motivation, broken sleep, frustration, short term memory loss etc).
Overall the last month has probably been the best month I have had since I was diagnosed, I am so gratefull for being eligable to partake in this trial and give me some benefits. Whilst my PSA has not shown the reduction that many of the participants in the other trials of MDV3100 demonstrated, however, I think it is a bit academic because of my scan evidence.
This turn around hopefully will prolong the need for me to have to go on chemo. When approved the main problem is going to be the cost, understandably the research and development costs are huge, but the market is also huge and the financial returns will be there for the developers.
I pray that this insight into MDV3100 will give some hope to you fellow sufferers and careers.
I have no connection whatsoever with the researchers/developers of MDV3100, just an unlucky but perhaps now a lucky sufferer.
I have also posted this in replies about MDV 3100.
Good luck to my fellow sufferers,

RangerTug also posted this information on

www.healingwell.com/community/default.aspx?f=35&m=2451379&g=2454827#m2454827

He also responded to some questions I posed - thought would reference that here.

On the comment of cost - I expect would be high, but if compare to chemo (Taxotere) how much is the real cost difference?

MDV3100 is like Zytiga in that its a pill you take daily correct?

The true cost of Taxotere has to take into account the actual transfusion related costs. To include the other drugs being given, the transfusion nurse, the cost of blood work before each transfusion, the 'cost' of using the hospital facilites for each transfusion. And also the cost to the patient.

RangerTug - Do you have any idea how long you will stay on MDV3100? I'm on Zytiga and have never asked that question.

nhwife, c.c. - I look forward to traveling along with you on your journey.
RangerTug - Wold be grand if you could continue to keep us updated on your progress.

Best thoughts and prayers to all!

Bud

PS We will ALL beat this crap!

nhwife

You will do great!

Best thoughts and prayers on your way and will stay with you two on the journey!

For the Zytiga, its 4 pills once a day without food.

HUGS!

Bud

We will ALL beat this crap!

c.c.

I'll also be following you and nhwife on your journey. Following and offering by best thoughts and prayers to both of you and your hubby's

I posted this on Zimac's thread; going to do so here also;

I have a "song" thread open - Jim provided this -www.youtube.com/watch?v=WxIt70j_SPk. Swap the pronouns, its my ladies telling me, its you ladies telling your hubbies.
Warning - The song will bring a tear to your eye and joy to your heart.

HUGS!

Bud

We will ALL beat this crap

Post Edited (Raddad) : 7/9/2012 2:50:07 PM (GMT-6)

C.C. - we are definitely together on this. It does help to know someone else is going through this at our virtual side!
Have you received any information as yet about this? We got the consent form to review and then the clinical nurse will answer any questions. On July 16 we are having both the Screening visit and the Day 1 visit together. That means just one set of bloodwork! My husband leaves with the pills in hand.
The consent form had the information about the seizures. I am sure my husband will be just fine. He's tolerated all the other meds.
Do you know what is happening for you on the 16th? We expect to be there a few hours, all in the afternoon of the 16th.

Hi Folks,

I will be on MDV until it stops working for me.

I imagine given the results from the Affirm trial (which was stopped at over 18 months) that the Prevail trial will go into 2013 at least. I actually hope they don't stop the trial early like the Affirm trial, I think there would be more meaningful results to let the trial run it's course. If that is say 2 or 3 or 4 or 5 or 6 years until failure, so be it. But I think the developers are naturally keen to get the drug approved for chemotherapy niave patients sooner than later. But if they stop it early then they will not get any definitive answers to exactly how effective the drug is. They know that there was a 4.6 months improvement in QOL and life expectency for the post chemo patients, I am sure their expectation is for pre chemo that it should be longer. Here is hoping.

There was some discussions re seizures, that is why my blood pressure is being very closely monitored and my BP medication is being tweaked to keep my BP down. I am about to leave for the Doctor's now to have a another BP checkup following the introduction 2 weeks ago of another tablet for the BP. My blood pressure seems to stay down for 3-4 days and then starts going up for 3-4 days and then goes down again and stats the cycle again. I am not really concerned about the seizures, if I can get my BP under control and do a bit more exercise I am confident that I will not have a problem there. I am more concerned about the advanced PC and the QOL in the future.

We were told that each individual would come off the drug when their scans showed an increase in the metasised PC in our bones. I hope this is many years away ! I take my MDV at night 4 x 40mg capsules, it doesn't matter about food. I take them around 6pm only because I take more tablets in the AM for my heart than I do at night. You are supposed to take them around the same time each day, I also thought night was easier. They are fairly big capsules ! I cannot put all 4 in my mouth at once like I do with the rest of my medications !

I did forget to mention the other side effect, hot flushes, I got hot flushes from Zoladex and they don't seem any worse now that I am also on MDV, they are still there and in summer are a real pain. Not so bad in winter but still I break out in copious amounts of sweating with any exertion, it doesn't matter if it is night or day.