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ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 9/24/2010 8:34 AM (GMT -6)   
I am running out of options and the oncologist recommends either a more intense version of the chemo that I have already gone through (with-out sucess) or a Clinical Trial called MDV3100.  My Oncologist has had no experinece with this treatment and beleives there are currently about 100 others in the trial.  There is a 33% chance of getting a placebo.
Can't find anything out about this drug and interested if anyone has heard of or knows of this medicine. 
I am told our bodies can only take so much chemo and I can always come back to the chemo if the trial does not work.  On the flip side it's an emmediate treatment, rather than risking getting further behind with a plecebo.  This is a tough call for me.  The Oncologist says he is on the fence and not leaning one way or the other.
 
STEVEC
2005 diagnosis and prostate removed.
Hormone Treatment from 2005 till 2010
CHemo 4/2010 till 8/2010
Radiation 8/2010 till 9/2010
Decision time, what to do next; NOW

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/24/2010 9:00 AM (GMT -6)   
If you have the means go see like Dr. Scholz (Calif.) or other specialists and get a second opinion. The clinical trial on MDV3100 my laymans guess is, much of a gamble effect. It is called Super Casodex...now I don't know anything about it..but if it is like casodex at all, probably not good enough. (big IF and guess).

Dr. Scholz is treating a man in Michigan right now with Leukine, an injection thing you can do at home after getting the Rx, the injection goodies stay in your refrigerator until you use them and you can buy them from Specialized Pharamacies (insurance is needed..cost is painful).
This man claims zero side effects (can't document that), and has been working on his hrpca at year 13 right now after failing on Lupron and such. I don't know how it might work in you...however Dr. Scholz might have an answer or other leading oncologists. Also there are other drugs and even thalidomide, estrogenics and more. What is it worth to you to get another opinion??? DCVax is in clinical trials, TAK700 (like Abiratarone) both in trials, Provenge is limited right now but next year 25000 patients will be available to use it(claimed). Keep looking and questioning...seen patients get new results with new docs, also.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Post Edited (zufus) : 9/24/2010 9:04:24 AM (GMT-6)


ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 9/26/2010 2:38 PM (GMT -6)   
Unfortunately, I have NO means of seeing Dr Scholz in California.  Having read your reply and further investigation, I am suspect of this treatment in my case since I was being treated with Hormone Therapy for 5 years and I beleive the mass had been growing much of the time (especially in the latter years) while on the treatment as no scans had been done during the treatment and the sucess was based on PSA results only.  My alternative would be Carbazitaxel Chemotherapy.  This treatment appears to have had some sucess and appears to be designed for patients with my history of cancer and treatment.  The side effects are intimidating (Decreases in white/red/plasma) that can and have resulted in loss of life.  The final consideration  is balancing an extension of life (approx 2.6 months) versus quality of life.   I am still reasonably young (53 years old) and have two childern living at home with me.  My wife had passed away in February of this year (after battling Leukeimia for 3 years) and my childrens well being is a top priority for me.  The more consideration I give this argument the more depressed and confused I become.
STeveC

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 9/26/2010 6:26 PM (GMT -6)   
thanks for writing Steve. I can offer you no information about this drug at all nor any other drugs for that matter. I was on ADT3 for two years and just recently saw a rise in PSA. I plan on monitoring it for another year to see what happens.
I would like to say I am sorry for you losing your wife I know that has to be difficult. I can;t imagine what your kids are going through watching their mom suffer and now you having cancer.
I would like to ask you a couple questions if you don't mind. How is your physical health aside from PCa? Do you exercise, have a healthy diet, etc? When I went to The Cancer Treatment Center of America three years ago one of the first things they did was treat me personally along with the cancer. I am a firm believer that to fight this battle with everything you have you first have to be emotionally, physically, and spiritually healthy. Just my thoughts Steve and I am sure others may not share that.
Email me sometime and we can chat away from the forum.

hang in there

peace to you
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 9/26/2010 7:52 PM (GMT -6)   
Steve, I don't know if you believe in the power of prayer but you are definitely in ours to help you reach your decision. You are also in our thoughts.

ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 9/27/2010 5:52 AM (GMT -6)   
Funny you should mention prayer.  I am not a deaply spiritual guy but I had always prayed.  I find my self unable to pray at all right now.  I assumed I would be able to find the answer to my decision in prayer and instead I am distracted an disconnected.  I had last night asked two freinds who I think of as deaply spiritually people and asked them to pray for me for guildence.  Livinadream is right in that we need to prepare ourselves by eating right, exorsize and a positive healthy spiritual attitude.  Part of my problem is that I am getting further and further behind.  I never had an oppertunity to properly grieve for my wife as I had been diagnosed with-in 50 days of her passing.  Since that point I have not eaten properly, I am unable to read or really concentrate on anything.  I feel weak and have little or n ambition.  Part of this I realize is the cancer and treatment there of, but much of the problem is feeling light I am lost in a haze and not fighting to find my way aout. 
Thanks so much for your concern, thoughts and prayers 
SteveC

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 9/27/2010 6:35 AM (GMT -6)   
Steve,

I don't have any advice concerning your treatment, but I just wanted to welcome you to the forum. I can't imagine how hard the months since your wife passed away must be, but I agree with what Dale said about fighting this disease with everything you can. There is a lot of disagreement on the forum about diet, but I am a firm believer that a healthy diet can help in the fight. It will give you some sense of control and you can start with just small steps. The same with exercise-even just getting outside for a short walk would be a start. I'm sure this must be very hard for your children-I know, because my Mother died of leukeimia leaving my Dad with me and my 7 year old brother. I'm so sorry for what you are going thru and will send lots of positive thoughts your way.

Kind regards,

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
No seminal vesicle and angiolymphaic invasion
perineural invasion present
Both nerve bundles spared
Cath out @1 week, totally pad free 2 weeks later

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/27/2010 6:41 AM (GMT -6)   
Maybe find local support group for PCa, you can find them through   www.UStoo.org    it might be useful on many fronts besides treatments only. I didn't realize your total situation, we all feel saddend by what you are dealing with...has to be overwhelming. I could suggest alot of other drugs to consider, but that is for you to look into as possibilities. Have you looked at the website:   www.hrpca.org  (proven therapies) might be worth reading.

Myself would seek out a very good oncologist, sell your car whatever...but that is just me.
You could contact    www.paactusa.org    (they have a phone number posted Rick P. or others may take your phone call and try to help you in various ways, they helped Andrew whom had little to no money or insurance)
 
Dale or others may be able to help you feel less than alone at this juncture.

Post Edited (zufus) : 9/27/2010 6:44:28 AM (GMT-6)


ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 9/27/2010 7:00 AM (GMT -6)   
Much thanks to all of you.  Al of your recommendations are worth bearing consideration and I will do what I can.    I had been feeling alone in this journey till I joined this forum.  Communicating with others who understand my plight is both helpful and consoling.
SteveC

dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 9/27/2010 7:09 AM (GMT -6)   
Ahinc:
 
Google MDV3100 you'll find plenty of info.  I've been following the trial pretty closely and this particular treatment looks very promising, if you were guarunteed the drug and not the placebo I'd say jump in with both feet but tht's the downside of trials.  Arbiterone is just finishing its phae 3 trail and should be available the middle of next year.
 
Those 2 drugs are the future of advanced prostate cancer treatment.
 
Zufus gave you a good idea with the Luekine but I hear its very expensive(maybe rumor mill stuff) and not covered by insurance very often.
 
Good luck.
 
David

ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 9/27/2010 8:46 AM (GMT -6)   
David,
The problem I have with the MDV3100, is that I was being treated for 5 years with the Casodex/Lupron treatment and the sucess of that treatement was being measured entirely by my PSA results (which were and still are very low).  I am convinced however that my tumor had been growing much of the time I was being treated with the Hormone Treatment.  I was still in treatment when my GI found the 3.5" tumor.  Going back to another Hormone treatment (even Super Casodex) concerns me.  There is no guarantee I will not get the plecebo.  33% will in fact get the plecebo.  On the flip side Carbazitaxel is a pretty intense chemo and quality of life may be sacrificed to buy a couple extra months.   I had found quite a bit of info on the Clinical Trial over the week-end.  Someone told me once years ago when I was first diagnosed to go get the meanest bad-ass medicine you can if you want to beat this thing.  Maybe there is something to that.
SteveC

spottydog10
Regular Member


Date Joined Dec 2009
Total Posts : 345
   Posted 9/27/2010 12:07 PM (GMT -6)   
Hi Steve,
Cant advise you I'm afraid but I wish you luck in your struggle.
Cheers,
Mike
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