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Posted 8/19/2010 6:34 PM (GMT 0)
I am posting to share my experiances of the last few days. As most of you know my psa jumped from .46 to 6.0 in 4 months. I saw my onco doc last thursday and she wanted me to get a lupron shot. We had an argument about treatment and I asked to be put on D.e.s. After much deliberation she consented to the treatment regime but she was not happy about it. She told me that Kaiser permanente pharmacy did not have d.e.s. and she would call me in a few days when she found out where to get it. She called yesterday and told me it is not available in the U.S.A. so if I wanted a lupron shot to come in and get it. I am here to tell you that it lit a fire under my butt and I spent the better part of last evening finding pharmacys in the states that compound des. I found five of them thanks to the help of zufus. One of them is only 45 miles away. I left a message with my hmo and the doctor who I would rather see who is retiring do to having  advanced pca knew nothing of it. After sharing what I know with him he did his own research and is thrilled to find another treatment that might benefit him as well. I am firing my current onco and looking for an onco doc who is not so full of themselves that they cannot think outside of the box.
Posted 8/19/2010 6:49 PM (GMT 0)
Thanks for not wasting anytime posting this. When I got off the phone with you I posted the following on the PPML:

Some of you guys know me as a forum moderator at HealingWell.com. I wanted to share a story about one of our members there:

This member came to us after a diagnoses of prostate cancer with a PSA at 3216. He was just 42 when he was diagnosed. He had mets to lung and bone. He was placed on Lupron/Casodex for 4 years and achieved an PSA nadir at 0.5. He, with his oncologists blessing, stopped all ADT and for 8 months and things went well until this last April. At that time his PSA started to rise. It was at 6 just a month ago indicating an aggressive PSADT. Some of our members, including myself, were suggesting that he look into DES. When he approached his Kaiser HMO doctor, she had never heard of DES. Our buddy learned about DES because other members at the site that were having terrific success with DES.

My personal oncologist, Dr. Nicholas Vogelzang, will use DES for advanced cases and while he cautioned me that it does not always work for everybody, he swears by it's effectiveness in patients that respond to it. When prescribed in 1mg doses along with a blood thinner, he says this treatment is very effective in treating advanced prostate cancer with far less side effects than you could expect. I have asked Dr. V to be our guest speaker tonight and he will be talking about Provenge, Cabazataxyl, and DES.

More on my friends case: I find it amazing that an oncologist treating an advanced case of prostate does not at least know about a treatment regimen that has been around for much longer than any ADT therapy. The reason I post this is to point out that it is vital for a patient, especially with advanced disease, to be a student of prostate cancer and in the brotherhood of survivors ~ without bias. My friend is just now learning that he feels he has been waisting time with his current doctors and has reached out to other well known oncologist.

And his first oncologist? He just retired and has metastatic prostate cancer as well. The nurse at the institute where the HW man I am referring had been treated at is his wife and they did research last night on DES. They called our HW buddy today to thank HIM for providing information on potentially life saving or extending therapy.

Ugh. "It's a jungle out there". There is serious reason to believe that some in the oncology pool are very inexperienced with vital 2nd line hormonal therapies... I am not endorsing DES, but rather pointing out that I am so happy to know about it and to know that my oncologists gets it. I don't have that happy ending to report on the story I am writing about, but I may follow up with more on it soon.

Hopefully this raises some eye brows with the folks here on the PPML.

Peace to all...

Tony Crispino
Las Vegas Chapter President
UsTOO International
(702) 917-7779

----------------<end snip>

I have already received several papers from one doctor in Halifax that has survived many years on Estrodial ~ Estrogel. Seems to think it's better than DES, but I am cautious to mention that DES at 1mg is safer than at it's older doses that proved to have nasty side effects. Not sure of everything yet, but I have been doing my homework. You are 100% right in terminating your current Oncologist. I think a key question in hiring a prostate cancer oncologists is what 2nd line hormonal therapies are they versed in.

Tony
Posted 8/19/2010 10:31 PM (GMT 0)
You are going to have to stay pro-active, and even justifyibly angry, in your pursuit at this point in your journey, and sounds like you are off to a good start. Good for you. There are definitely folks here, that know way more about PC then their doctors, and that's a scary thought. You are in a situation where anyone that is going to do you any good, is going to have to think outside the norms. If they won't, like now, then you will have too.
The best person to be your personal advocate, is yourself.

Good luck, with all you have on your mind and all you are dealing with. My heart and mind are with you.

David in SC
Posted 8/20/2010 3:27 AM (GMT 0)
Someone once said knowledge is power. Three simple words take a whole new meaning in this context.
Posted 8/20/2010 12:40 PM (GMT 0)
              2
PCa= mc


(only in that formula PCa equals, m=mass, c=confusion, squared to the n-th' degree)
PCa should mean- P= Proactive   C=Candidate    a=activated wink


Patients need to know they have choices and it is their journey and not just one docs opinion and scenario. You can fire docs and move on elsewhere, don't worry about somebodies feelings, yours should come first...it is your prognosis and destination at hand.
Surely, you notice huge disagreement in PCa treatments, protocols and opinions. Like this is all simple science and linear methodology in treating someone...NOT!!!! rolleyes

Todd you are walking in this journey atleast benefitted by some of these folks:


Some of the Pioneers whom made pavement for PCa patients: Robert Young, Llyodd Ney, Bill Aishman, Harry Pinchot, Michael Milken(living), H-R Bloch (guy), Don Cooley (living), Terry Herbert (living) and many others I cannot think of right now. Not to mention a long list of perhaps the expert doctors including surgeons, radiologists and oncologists, whom made advances and improvements...much more than status quo types.

Posted 8/20/2010 4:01 PM (GMT 0)
Todd:  It sounds like you are doing the right thing without a doubt.  If you're looking for a good PCa Oncologist in the area, I would recommend Dr. Montgomery at the University of Washington, he's one of the main clinical trial guys in the U.S. and has a very open mind about PCa.  I know it would be a drive for you but he does his best to accommodate his patients.

Good luck.

David

Posted 8/20/2010 5:11 PM (GMT 0)
Hey Todd your hmo doc you mentioned (got the full story through Tony), you were saying your own hmo doc has 'mets' PCa and did not know about DES or apparantly other estrogenics and he got the message from you about where to find this drug and he is looking to do just that, because you informed him (go blanking figure)!!!   This speaks for itself...a doc whom didn't know the drug exists for him and he has mets? Glad you helped him, hard to comprehend that one.

He needed a second opinion and got it from a layperson . turn

Posted 8/20/2010 7:20 PM (GMT 0)
Todd,
Your first (retired) doc needs to pay YOU for an office visit.
Do you see why you're my hero?
Please keep fighting the good fight.
Jeff
Posted 8/20/2010 8:14 PM (GMT 0)
Jeff, your funny. Todd
Posted 8/21/2010 12:23 AM (GMT 0)
I spent many hours on the phone today. I am so frustrated. This is my life and no Dr. should have the right to deny a patient access to potentially life saving treatments just because it is outside the realm of thier personal medical dynasty..H.M.Os should be illegal. I am trying so hard to get a referal to see an elite prostate cancer oncologist. I am forced to spend my time wading through the murky darkness of hmo buracracy. Sorry about my spelling. So far I have made no progress and now my onco said wait on the lupron until next week as my psa continues to rise. It made no matter that Dr. Vogelzang informed me that if my testosterone is rising I should use lupron to drop it before going on des. oh well. The battle continues. Todd
Posted 8/21/2010 1:12 AM (GMT 0)
Bro- Todd I just talked with you tonight, nice to hear directly. You have been busy and the frustration factor is not anything anybody wishes to be dealing with besides your health. Dr. Vogelzang looks like a good one to see, if you ever saw him in the PCRI videos, right up there with Strum and others, class oncologist. A consultation and probably going with his advice should be all good. You also contacted my onco-doc (Michigan) whom you noticed actually cares about your case and was willing to do various things to assist your case and was not even hired yet (that speaks for itself).

Well you are getting a big view of why I call it the jungle, twilight zone and patients living in limbo land. But, now you got some helpful choices and it should fall into place soon for you.
Posted 8/21/2010 1:58 AM (GMT 0)
Todd, was good talking to you today too. It's nice to connect a voice to our words here. Hope we can speak longer next time.
Posted 8/21/2010 5:51 PM (GMT 0)
I hate to butt in here, but let me make sure I've got this right: you've been off everything? Lupron, Casodex, HDK+HC, Nilandron etc?

Why not go back to Lupron+Casodex if it worked the first time?

I'm not trying to simplify things, just trying to understand.
Posted 8/21/2010 9:04 PM (GMT 0)
Yeah Dave it looks like that is very possibly what is going to happen, however Todd is wishing to get away from side effects at some point and try to work on some of the hrpca that may be showing up. His doc didn't measure 'T' level, and should have along with other blood markers and work up, so he needs that test right now to see how that stacks up, with some rising in psa level that have recently started.

Lots of ways to fight PCa in various protocol. So, Dave you are using DES now and is it separately or in a comb? Did it have any value in your case, all protocol drugs are subject individual cases and responses, many variables at work. I had Lupron still in me when I started DES, it cancells the side effect like hot flashes and sweats. A person could actually try LHRH (Lupron and DES in 1/2 or 1-mg and do them together), might actually make a great cocktail approach, some working on hrpca and other on dependent cells.
Posted 8/21/2010 9:06 PM (GMT 0)
lupron and cassodex worked wonderful David. I am not knocking them. I want to be able to come back to them in the future. Eventually if I remain on adt2 the cancer will become refractory. My desision to go with des is simply to prolong that time that it takes for it to do so.Todd
Posted 8/22/2010 5:18 PM (GMT 0)
zufus, I'll attempt to provide details without getting to long winded.

I am still on monthly Lupron (28 day dose) and started DES this spring. After my second round of HDK+HC stopped working and my PSA went to nearly 200. After four weeks on Lupron, DES, Wafarin and Finasteride my PSA dropped to 128, then 108 by June.

However, Memorizl Day weekend, and for the first time in five years I began to experience severe pain in my thighs, hips etc. Advil was not helping. I was able to control the pain enough to sleep and rest with Oxicodine and then had an MRI. My Onc ended up referring my to my Radiation Oncologist who delivered the bad news. I had severly swollen lymph nodes in my right lower abdomen, an the mets had started a little party in both femurs. The most critical discovery was the condition of the top of both femurs, the knuckle if you will that sits inside the hip joint. The left was bad, the right was worse and these are very susceptible to fracture in this condition.

So, 15 radiation treatments later the pain was completely gone and the RadOnc described the area from my waist to my knees 'in remission'. This is not to say my overall condition was such, just this area.

My first PSA post radiation showed another 50% decrease in PDA to 49, then next taken on 8/13 showed another 40% drop to 30.

This leave us with the question, was it the radiation? The DES? Both? No one can really say. In discussions with my Onc and my RadOnc here is my unscientific conclusion: the DES is working as proven by the continued PSA drops pre-radiation. The further decrease shows that the majority of the PSA being created was being done so by the bone mets in my hips and femurs. For some unknown time the radiation may further decrease my PSA and combined with the LUpron, DES et al we can only pray that time is a long one.

Todd, I hope you are able to work through the HMO BS, I would run from your current Onc as fast as possible. There are risks from DES as I am sure you are aware, have you considered adding HDK+HC instead of adding DES to Lupron?

(pardon any typos or spelling errors, writing from the iPad)
Posted 8/22/2010 5:55 PM (GMT 0)
Thanks Dave E. for answering I was really curious about your protocol(s) and very happy for you to see actually large improvements in psa's. It is interesting to see you with Lupron and DES together, that should halt hot flashes and heavy sweating issues of course that is small potatoes right now. Having those pains and burdens to deal with added on is overwhelming and rough that PCa patients have to deal with such. I would be dreading looking at such future treatments in my own case, which is maybe comparable, only I had lower psa level, but tons of PCa. It is pure war being in high risk PCa scenarios, sharing information and ideas and more, can be very useful to others. Maybe post an update in awhile Dave, thanks for answering. We hope Todd much success and you can see he is fired up and getting proactive on his own, whatever his next round is we look for good sailing.
Posted 8/22/2010 5:56 PM (GMT 0)
It's probably worth noting that Todd was on Lupron and Casodex, but if I am not mistaken he did not acheive an undetectable Nadir and started to have a PSA rise at which time Casodex was discontinued and THEN he started stringing the zeros. Todd correct me if I am wrong here.

David, I have seen a couple folks start DES earlier than you did, but I can't say which is a better rout. But DES before chemotherapy has been consistent in the cases I have followed and has good results. I have no idea if Keto before DES is better or the other way around. Other than to say the patients that are in my live support group that are seeing Vogelzang typically start with Nilandran then DES.

I guess what matter most is seeing a response to whatever protocol is administered. Todd has many good options ahead...

(Please don't mind my typo's it has nothing to do with iPad ~ my typing sucks.)

Tony
Posted 8/22/2010 6:32 PM (GMT 0)
for the sake of brevity (which my post did not achieve) I left out the treatments I tried prior to this year.
All dates are approximate:

2-2005 to 8-2006 Lurpon + casodex (nadir was .35 after 5 months)
8-2006 to 2-2008 Lupron + HDK/HC + Finasteride
2-2008 to 4-2008 Lupron + Finasteride + Nilandron
6-2008 to 1-2009 Lupron + Finasteride + Tax (3 week) + Atrasatan Trial
1-2009 to 8-2009 Lupron + Finasteride
8-2009 to 3-2010 Lupron + Finasteride + HDK/HC
6-2010 15 Radiation Treatments
3-2010 to now Lupron + Finasteride + DES/Wafarin

Zufus, all... I'll try to post more frequent updates as the DES experience continues.
While at the Onc on Friday we did discuss adding Provenge in October (the potential date for availability in Kansas City)
Posted 8/22/2010 6:35 PM (GMT 0)
Great new signatures for both David and zufus,
Your stories are way to important to this group to leave anything out.

Thank you both for your contributions. It has to be uplifting for Todd and other advanced guys to see...

Tony
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