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Old 03-11-2009, 01:16 PM   #1
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anyone try any clinical trials?

My husband was diagnosed with Prostate cancer last Feb. he had a PSA 27 and a Gleason 9. We opted for open Radical Protetectomy because he is only 45. He had surgery in May the after biopsy found it in one node. He then began Lupron and Casodex and had radiation. His PSA was 0.1 in Dec. and is now risen to 0.6. The urologist wanted to do chemo but the oncologist wants us to go to UCSF to see about clinical trials. Just wondering if anyone has any suggestions?

 
Old 03-11-2009, 03:43 PM   #2
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Re: anyone try any clinical trials?

Hi Worried-

I'm another worried wife. My husband first had robotic surgery and they found extra capsular extension at that time. His urlogist asked him to check into a clinical trial at our state's university. He felt at the very least it would be good to have a second opinion thru them and to see what they could offer him. We did follow up and the slides were sent to Johns Hopkins thru the trial approval process. They did confirm his Gleason of 4+3 and the clinical dr's did agree on his treatment that he had already received. That felt good as a second opinion. When we took home the material to read to see if it was something we wanted to pursue it was actually pretty scary at the time. I guess more for the reality check of it all. But he was denied so we never had to make the decision after all. Sorry that is all the experience I can offer with that. I guess it can't hurt to see what they have to say.

I'm a little down today. My husband's PSA is starting to rise after his salvage radiation. We met today with his Rad Onc and said he wants to wait another 3 months to see the trend. We have already scheduled an appt for next week with his uro so we'll see what he thinks we should do. If he starts up with hormone therapy I suppose we should also then get a medical oncologist into the mix too.

Also I might just put this out there too. The dx has been pretty hard on me too so I went to my first prostate cancer support group last week. My husband didn't want to go but I feel I need something. The more information I can learn the better I feel. It helps me feel in control of an uncontrolable situation. It was good to have their support and I did learn a few things. It might be something you might like too.

Well I hope things go well for you and your husband. Good luck.
Martha

 
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Old 03-11-2009, 06:37 PM   #3
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Re: anyone try any clinical trials?

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Originally Posted by worriedwife44 View Post
My husband was diagnosed with Prostate cancer last Feb. he had a PSA 27 and a Gleason 9. We opted for open Radical Protetectomy because he is only 45. He had surgery in May the after biopsy found it in one node. He then began Lupron and Casodex and had radiation. His PSA was 0.1 in Dec. and is now risen to 0.6. The urologist wanted to do chemo but the oncologist wants us to go to UCSF to see about clinical trials. Just wondering if anyone has any suggestions?
Hi worriedwife44,

I'm so sorry you both have had to go through the rough diagnosis, then the surgery, and now the rising PSA after the radiation and hormonal therapy, especially at your young ages. That's quite a load!

I have faced a challenging case but have done very well with just intermittent hormonal blockade (no surgery, no radiation, no cryo, no etc.) plus a supportive program of diet/nutrition/supplements, exercise, stress reduction (not so easy, right?), and bone density medication (Fosamax, later Boniva). That has given me an introduction into the territory you and your husband will be traveling, and I can give you some leads and tips. However, I am a layman as far as medicine is concerned and have had no enrolled medical education.

Was any additional work to estimate the size and spread of the cancer before the surgery or radiation? From your post, it appears there wasn't, and that is not uncommon; many doctors seem to take the approach that they will do the straightforward next step and see how the patient responds as an indicator of the extent of the disease. If you have additional information, that could help: the number of cores taken at biopsy and positive; % cancer for each positive core; location of positive cores; special findings at the biopsy or post surgery pathology such as peripheral neuropathy; and whether the cancer was on one side of the prostate only based on the surgery specimen. Obviously the positive node indicates the cancer had escaped the prostate, but were the surgical margins positive or negative? Were any scans done: bone, CT, Fusion ProstaScint, other? An especially important clue is the velocity of PSA rise in the year before diagnosis, if you know it; do you have the dates and PSA levels before surgery? Any of this that you know could help board members comment from their experience, and all of it is information you and your husband should have handy. Have you obtained copies of all the reports of tests, of doctor's exams, and of the surgery and radiation? Those can be invaluable when consulting experts.

Your comments about the recommendations of the urologist (chemo) and the oncologist (clinical trial) suggest to me that, while both may be fine and dedicated physicians - probably are, they are not very familiar with the ins and outs of treating challenging cases of recurring prostate cancer. Chemo is an option, as is a clinical trial (especially at UCSF), BUT there are quite a few tactics that could be done short of those approaches, and should be done in my opinion. Please keep in mind that I'm a layman, but I've gone over what may be next for me, which involves some of the same issues facing your husband and same options, and I'm pretty familiar with this territory after talking to and following the advice and teaching of expert medical oncologists for years now.

Just a word about clinical trials: they are, of course, vital for the advancement of medical science, and it's good for all of us when fellow patients enroll in them. On the other hand, researcher/physicians, including researcher/physicians at major institutions, are often hungry for enrollment of additional patients in their trials, and I'm personally convinced that they are not picky about ensuring those patients have exhausted other options that are often helpful. Bottom line: I believe that many of us are enrolled in trials too soon. I think that can cost us years of quality of life and even shorten our life spans. I'm convinced it's particularly true in circumstances like your husbands, where more sophisticated and expert hormonal blockade and other useful therapies could be a better match to his case.

On the other hand, some of the physician researchers at institutions near you have well-deserved international reputations as experts. UCSF and Stanford both have highly sophisticated and advanced cancer imaging technology and expertise. Dr. Eric Small at UCSF is a brilliant researcher/physician treating challenging cases. In fact, he is the leader, as far as I can tell, in researching the medication leukine, which could be an excellent fit for your husband's case. Dr. Small is also a leader in researching the vaccine Provenge; Provenge is not yet approved by the FDA, but this very expensive vaccine ($40,000 - $60,000 for a full course of three infusions) does seem to help at least 20% of patients, a number which increases if chemo is also given. Your husband might be able to get in the trial - possibly getting the vaccine for free (don't know about that), though that trial is near conclusion.

Dr. Small is also involved in other research that may prove of great value to us. He's one of my heroes, though I have never met or heard him talk. You could research his research by using [url]www.pubmed.gov[/url] (our taxpayer dollars at work, and a site we can use on this site because it is Government sponsored, searching for, for example (omit quotes): " small e [au] AND prostate cancer ". I just did that and got 166 hits! You can click on the blue hypertext of those that look interesting and get a brief description (abstract) of each paper for which there is an abstract (not all have them, but most do).

But getting back to your husband's situation, here's a brief overview of some tactics that are often used by experts. First, since about 10% of patients do not respond to Lupron but can respond to other drugs in the same class, he could switch to one of the other drugs, such as Zoladex. Second, a third drug, Avodart or finasteride, could be added to the hormonal blockade. (I'm on all three when I'm not taking an "off-therapy" vacation.) A switch could be made from Casodex to one of the other drugs in the class, or to ketoconazole (with hydrocortisone), though that move is probably premature. Transdermal estradiol (estrogen through skin patches, which minimizes cardiovascular risk) could be used. Leukine, mentioned above, could be added; about half of patients respond from what I recall, and I think a higher percentage is responding as expertise improves. There are other options, including simultaneous chemo.

The best book I know that lays a lot of this out is a very easy to read book by Dr. Charles "Snuffy" Myers, "Beating Prostate Cancer: Hormonal Therapy & Diet." He is an expert medical oncologist specializing in prostate cancer in Virginia, and he has the "advantage" of having had a challenging case of prostate cancer himself. Diet/nutrition/supplements, exercise and stress reduction all seem to help, and the book is also strong on the nutritional side.

I hope this post is not too long already, but "bone mineral density" also is important. It appears your husband has not had a bone density workup. This is very important, but that is often not recognized by doctors who are not experts in challenging cases of prostate cancer. In part it's important because decreased bone density is epidemic among prostate cancer patients, and in part it's important because the bone density drugs can help control or even roll back bone metastases.

It took me the better part of a year to persuade the two fine urologists initially treating me that I needed a BMD assessment, back in 2000. I had a DEXA scan at age 57, and it showed I already had lost significant bone density and had developed "osteopenia," well on the way to osteoporosis. A Quantitative CT scan (QCT) is a better technology for men who have arthritis or calcification of arteries, but your husband is young enough that a DEXA might be fine; it worked for me. (The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, is another very important resource for you and your husband, and has a good section comparing DEXA and QCT scans. It is very strong on explaining sophisticated hormonal blockade.)

If your husband has lost bone density, the doctor will probably want him on a bisphosphonate drug plus calcium and vitamin D3 supplementation. (The Primer has excellent coverage of the bisphosphonate drugs.) The most powerful bisphosphonate, by far, is Zometa, which is administered by infusion frequently for metastatic prostate cancer. It actually has had at least fair success in not only rebuilding bone density but also in minimizing, stabilizing or even reversing and eliminating bone metastases! In rare cases, a serious jawbone side effect has occurred, known as osteonecrosis of the jaw (ONJ).

Well, this has gotten really long. Are you still with me? I'll close with a thought about contacting Dr. Small's office. Even if it were inconvenient for your husband to hook up with him, his office might be able to recommend a medical oncologist expert in the problems your husband is facing. I know of several in the LA area, but there are probably a number in the Bay Area.

Keep your spirits up! Enormous progress has been made in prostate cancer in just the past few years, building on decades of advancement. Another reason for reading Dr. Myers' book is that it delivers a whopping dose of optimism!

Good luck to you both and I hope you post here frequently.

Take care and good night,

Jim

 
Old 03-12-2009, 04:50 PM   #4
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Re: anyone try any clinical trials?

Hi Martha,
I hope things go well for you guys. The waiting is hard to do. When ever we get bad news I find it takes me a couple of days and then I look for something positive to hold onto. I am looking for a support group as well. My husband is also not that interested but it is time to find something for myself. I also need to find someone for my kids as well. Teenage years are stressful enough with out this added pressure. Please keep us informed on how things are going. Remember you have to take care of your self as well.

Take Care
Kamela

 
Old 03-12-2009, 08:45 PM   #5
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Re: anyone try any clinical trials?

Hi Worried-

Thanks for your kind words and I hope you find some support for yourself and family. I know I wasn't sure if I wanted to check out the group but glad I did. I meets only one day a month and I thought to myself that is a very minor commitment and I could handle that. Now I'm saying to myself I wish the meeting was held every week! After each meeting with the doctors I go home and think up more questions and the support meetings will fill a that void between more dr visits.

Also this website has been very helpful. I have been reading every message for the past two years taking and learning what I can from everybody. A special thanks to you Jim for all the effort you put into your posts. I read every word. I have pretty much read and understood the posts up until now when I need to understand the hormone therapies. ADT's start to confuse me and I should now pick up those books you have encouraged us all to read. My first books were Walsh's and the ACS. I'm also thinking of trying to persuade my husband to go for a second opinion at the Mayo in Rochester. I know he would rather stay closer to home but now I feel we are really fighting for his life.

Some of his stats are pre-surgery PSA 9.6 Gleason 4+3. It did jump from a 1.9 to 9.6 in about 15 months. 3 samples of the 12 at biopsy were cancerous. I believe they were at 30% cancerous. Predominatly 4 in samples and staged T2a. Path report confirmed 4+3 but in both lobes with extra capsular extension. No lymph node involvement and margins were clear. He has had a lot of the scans and a procasctint. First bone scan showed possible mets but had a bone biopsy and it was negative. Follow up bone scan before radiation showed no change or progression with the few hot spots that were suspicious. Those spots still worry me. PSA's between surgery and radiation went from .2 to .9 in about six months. After radiation it has gone from .3 to .7 in about six months. I do not like those doubling times.

I did tell my husband about you Jim and how you have held off the demon for 10 years. I told him he has alot of life left and to not give up. But I also need for him to fight!

Thanks for letting my share and vent. It helps.
Martha

 
Old 03-12-2009, 10:38 PM   #6
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Re: anyone try any clinical trials?

Hi Jim,
Thanks for all your words of wisdom. I have ordered both of the books that you have recommended.
I have to agree I think that we still have options besides the clinical trials. This will be our third trip out to UCSF. We have seen Dr. Peter Carol. (Urologist) We have also seen Dr. Charles Ryan who is an associate of Dr. Smalls. We have been told that Dr. Small still over sees all of the cases.
Our biggest problem seems to be that although the Dr. out here are good they just do not see enough young men that have this advanced a case. So they are always wanting to send us out to UCSF to make sure that they are on the right track. Our insurance keeps complaining about us going to UCSF so then they make us go back to the Dr.s out here. Right now we are on hold because our insurance is requesting more info before they will let us go out to UCSF. It is so frustrating. But it gives us a little bit of time to do some more reading and research.
We have had many tests done our beginning PSA in Feb. 08 was 27. Followed by biopsy in March 08 every biopsy that was done had cancer either 5+4=9 or 4+5=9. He had a bone scan and ct scan both were negative. He had the Radical Prostatectomy in May of 08. The path staging was PT3b N1 Mx R1. He then started Casodex followed by Lupron injections every 4 months. In August 08 he started EBRT which he finished in Oct. of 08. His PSA in June of 08 was 3.1 in August 08 it was 0.2 in Oct 08 it was 0.1 in Feb 09 it has gone up to 0.6.
I have really enjoyed reading your posts you have done a lot of research and all the information we get is very helpful. I am going to spend some time looking at web site that you suggested.
My Husband has not had a bone density test done but he is taking calcium, vitamin d, multi vitamin pack, soy and pomegranate.
I appreciate reading your posts and appreciate any recommendations you may have.
Your story gives us all hope
Thanks
Kamela

 
Old 03-12-2009, 10:56 PM   #7
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Re: anyone try any clinical trials?

Hi Martha,
Any time it helps to have people that understand what you are going through. After we got the news that the numbers were rising and our urologist told us to prepare for 7 years my husband came home and felt very depressed that it was over. But sights like these give us lots of hope. In the research we have done there are many new advancements all the time. We just have to keep the faith and not give up.
Sometimes I have a good meltdown and then feel much better.
When they give up we just have to remind them of all the things that are worth fighting for.
Keep the faith
Kamela

 
Old 03-14-2009, 02:37 AM   #8
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Re: anyone try any clinical trials?

Being located in Guam where treatment facilities and resources are not what one hopes for, I have been in many discussions with my carrier about cost of treatment. My best advice is keep on them, so far I have been able to get what I want but it has sometimes taken a bit of persistance.

BTW I was diagnosed in early 2005 with Gleason 9 and a hot spot on the coxcyx bone. I had a radical proscectomy that June followed by radiation and hormone therapy. I came off lupron end of 2007 for a year but went back on in June 2008 due to rising PSA's. I have added casodex recently.

I also started reading this board recently and have found Jim's posts to be very enlightening. I also followed up with some of the readings and in particular Dr Myers book. In fact I had a discussion with his office yesterday and may pay him a visit in June.

One of the best pieces of advice I got after my diagnosis was from the radiation oncologist at UCLA. He said basically with my gleasons I could end up feeling dicouraged and depressed but to remember each case nad individual is unique and that individuals have been beating the averages since they started keeping statistics. One of the things he said I must do is keep a positive outlook and go out and live.

That is the attitude that my wife and I have taken. So far it is working. Try to encourage your husband to read Dr Myers book when you get it.

I have been on one clinical trial with no positive results at UCLA but would enter another if it looked like a match.

All the best

 
Old 03-16-2009, 08:15 PM   #9
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Re: anyone try any clinical trials?

Guamjohn
Thank you for your advise. Still waiting on insurance but I keep pushing them.
We are taking our lives like nothing has changed and living them to the fullest. No one knows what tomorrow will bring. I would love to here how your visit goes with Dr. Meyers. We have his book on order. We look forward to reading it. Do you follow any of his diet suggestions?
thanks

 
Old 03-18-2009, 08:35 PM   #10
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Re: anyone try any clinical trials?

Quote:
Originally Posted by worriedwife44 View Post
My husband was diagnosed with Prostate cancer last Feb. he had a PSA 27 and a Gleason 9. We opted for open Radical Prostatectomy because he is only 45. He had surgery in May the after biopsy found it in one node. He then began Lupron and Casodex and had radiation. His PSA was 0.1 in Dec. and is now risen to 0.6. The urologist wanted to do chemo but the oncologist wants us to go to UCSF to see about clinical trials. Just wondering if anyone has any suggestions?
Hello,

I live in sfo and am in clinical trial NCI-C-0188 at NIH in Bethesda, MD. This is the world's largest clinical trial center. The budget is $23.7 Bil/yr.
To think about surviving this scour you must be prepared to be a medical tourist. Some potential CURES are even potentially located offshore. I recommend that you call NCI and ask about clinical trials.

Has your husband received the pneumonia vaccines? It has been recommended for ALL Cancer victims.

The UCSF library has great resources and will send you an email list of many potential resources if you ask. You need to do research to be able to ask the correct questions.
This is a small site and has much competition. You would do well to keep looking on the web.

 
Old 03-21-2009, 10:43 AM   #11
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Re: anyone try any clinical trials?

Hi Kamela-

Thought I'd let you know how our visit with his urologist went last week. Our doctor has been great and so open and makes all those hard questions easier to ask. I'm so thankful he is part of our team. I came in armed with a page full of questions and he said it is not necessary to wait 3 months to ask questions. To please feel free to call when anything comes up or if I've heard something or read something and need to question him. He's is so supportive.

So he laid it all out there about whether to do hormones or wait. My husband has decided to wait another 3 months for another PSA test before making any decisions. He is also diabetic so hormones will play a factor in his decision. I know the thought of more pills just about does him in. We talked over castration as an option but our dr won't do it unless the hormones fail. He also feels a clinical trial is not appropriate right now before we have tried the hormone therapy. He is however going to a conference this next week and would put my husbands situation out there for observation by the clinical trial groups. Not sure how that works but I guess if there is information available the trial will check to see if you are a canditate or not.

He also says it is time to get a medical oncologist on board to begin to get familar with him and to help cordinate his care as part of a team. He'll have a another bone scan before our next appt and we'll start therapy then if my husband chooses.

We had a family dinner out and all discussed it. Hard to tell the kids but they are young adults now. So glad we have a few good years ahead to create more happy memories. But from this time forward our decisions will be made a little more deliberately. So we are making plans for a big vacation this summer and going to St Thomas. Going to be more positive and thoughtful from now on.

Best wishes to you all.
Martha

 
Old 03-28-2009, 10:49 PM   #12
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Re: anyone try any clinical trials?

Yes I have started his suggested diet and supplements.

 
Old 03-29-2009, 04:45 AM   #13
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Re: anyone try any clinical trials?

Quote:
Originally Posted by worriedwife44 View Post
Guamjohn
Thank you for your advise. ... I would love to here how your visit goes with Dr. Meyers. We have his book on order. We look forward to reading it. Do you follow any of his diet suggestions?
thanks
I would like to join Guamjohn, making us a duo, that I too follow Dr. Myers' suggestions for diet/nutrition/supplements, exercise and stress reduction. I try to follow them closely and am pretty successful in that.

Dr. Myers has a large medical oncology practice specializing in prostate cancer, and he gets many challenging cases. That means he sees many new patients each year, but also oversees treatment for many patients for a very long time. He gets to see the benefits and consequences of various approaches. I've heard him say in presentations more than once that lifestyle tactics often appear to make a huge difference, and that a substantial proportion of the few patients he has who do not do well are the ones who do not follow the nutritional recommendations. I had a support group friend in that category, and he was apparently hooked on red meat. Hormonal therapy checked his recurrence for just a few years, and then he slid backwards rather quickly, as if he had no lines of defense. He had once consulted Dr. Myers, but I have the impression that his desire to stick to his red meat diet may be one of the reasons he stopped seeing him.

There recently was a report of a very large study about red meat, pork and processed meat. It was sponsored by the NCI and involved AARP. The findings were quite unfavorable to a diet involving daily red meat, and pork and processed meat did not look good either on a frequent basis. Increased cancer was one of the findings. Poultry and fish had a beneficial effect.



Jim

Last edited by IADT3since2000; 03-29-2009 at 04:59 AM. Reason: Added information about red meat, pork etc. shortly after posting.

 
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