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My first post, Gleason 10, widespread bone mets, aged 49 at Dx - looking for suggestions.

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Posted 5/19/2017 12:57 PM (GMT 0)
Hi Guys,

I joined a while ago and have read many posts, but this is my first post. I was diagnosed in April 2016 with 11 out of 12 cores 100% cancer, Gleason 10 in one core. I had a bone scan the following week, which showed a dozen mets in my skeleton. I was scared and overwhelmed, but I've become accustomed to my new reality.

I have been through, Androcur, Zoladex implants, cryoablation/immunotherapy in Florida (I live in Perth Western Australia, so that was a big deal) which doesn't seem to have done me much good, though my mets have not progressed, but I was hoping for a better response. I'm currently going through Docetaxel chemotherapy and I have had 4 rounds out of 6.

I remain positive and optimistic, but today I got some news which hit home the reality that PCa can and is deadly. A friend of mine, knows another guy who's a little older than me, who's been down a similar path and recently he woke up covered in bruising and his doctor has told him he's at the end stage and probably has 3 months left to live. This has been a fast decline as it seemed he was managing well, working full time until recently.

It reminds me how serious I need to take this condition.

I'm just wondering if anyone has any thoughts on my current regime. I came to the conclusion chemo was best for me at this time, but it was a hard decision as my mother died soon after starting chemo for lung cancer.

Thanks for listening,

Paul
Posted 5/19/2017 1:07 PM (GMT 0)
My goodness Paul, you have certainly been through the wringer. Keep up a positive additude and fight the beast.
Posted 5/19/2017 1:49 PM (GMT 0)
Paul, you have been dealt a difficult hand. It sounds like you have been fighting hard, and I hope you have ongoing success. With the advanced types, the Gleason 9/10, it takes just about everything available to go after it. Your case sounds like it's still hormone sensitive, so that's a plus. There are hormonal therapies that have helped many, sometimes for a rather long time.

I've added you to our G9 Crew roster on the "The Gleason 9 Crew -- Part 2, continued." thread. It includes G10 too, and you'll find several there. Not many, and the G9 folks (particularly the 5+4 versions) are almost the same for treatment options and so on. You can find some forum names that you might reach out to with specific questions. There are links to many of the guys' first forum posts, and if you click on the name by the post you often will find an email address.

A couple of notables on our forum are Todd1963, diagnosed with widespread mets over 10 years ago and doing well. He is a beacon of hope! Another is Tall Allen, who regularly has helpful links, and is helpful if you're looking for any specifics.

Stay with us, we're here to help any way we can. This forum is one of the very few places you'll find with people who can so much relate to what you're facing. Ask, vent, whatever, that's why we're here.
Posted 5/19/2017 2:31 PM (GMT 0)
Paul:

I was diagnosed around the same time as you and you can see my Gleason scores and treatment history. I'm still here and doing well. Side effects suck and can bring me down, but life goes on.

I went through up front chemo. It's really not that bad and you will make it through fine. Day 3 or 4 brings a chemo crash but otherwise it did not slow me down. In some ways the other treatments have been more challenging. The studies have shown that up front chemo does extend survival so I think you are doing the right thing.

Hang in there. We will be with you.
Posted 5/19/2017 3:07 PM (GMT 0)
Hello Paul...There are some advanced treatments available in the States, very expensive of course, but they can be very effective..For bone mets, Radium 223 has been very effective..Two ADT drugs Zytiga and Xtandi (Abiraterone Acetate and Enzalutamide) may be available in Australia at generic prices. A recent study shows that by adding Ranolazine to Xtandi, the effectiveness of that drug can be extended considerably..Keep a positive attitude and best of luck to you!
Posted 5/19/2017 4:08 PM (GMT 0)
Since you live in Perth you may visit Theranostics Australia in Perth. The treatments they offer do help very advanced PCa patients. But not cure them!

George
Posted 5/19/2017 8:40 PM (GMT 0)
I think you have made great treatment decisions, given the lousy hand you were dealt. Chemo scares a lot of guys because what they know of it usually comes from their experience with other kinds of chemo with other kinds of cancer. They are all different, and every individual will react differently.

I take it, from what you wrote, that you had cryoablation of the prostate - did they ablate metastases as well ? And what kind of immunotherapy?

You don't seem to be castration-resistant, as far as I can tell from your post. That would limit the medicines you are eligible for outside of clinical trials (e.g., Lu-177-PSMA, Xofigo, Xtandi, Zytiga, Provenge). There are a few clinical trials of advanced medicines in the hormone-sensitive situation, but I don't recall if any of those trials are in Australia.
Posted 5/21/2017 2:46 AM (GMT 0)

Hello Paul,

Welcome to this forum !

We've got members here who hail from all around the globe ... and we're all committed to helping each other by sharing our treatment experiences, listening, supporting each other, and sharing bonds of friendship and comaraderie ...

We've got some common threads woven into our treatment stories, Paul. I was also diagnosed with prostate cancer in my 40s ... I've had ZOLADEX injections like you have mentioned and I've also undergone a series of TAXOTERE chemotherapy treatments.

I hope you're faring well with your chemotherapy infusions --- you're well into your series of treatments. I remember getting past the "halfway milestone" and soon thereafter, my treatments were finished up.

I'd like to invite you to check out a thread entitled "TAXOTERE SIDE EFFECTS" --- simply type that title in the search box located at the top of your screen --- there you will find a wide range of first-hand chemotherapy experiences shared by members of this forum. Consider adding your own experience onto that thread --- it was created to help other fellows who are just getting started with chemotherapy treatments. Your experience would be a valued addition to that thread, Paul.

We're thankful you've joined our "band of brothers" here ... visit often ... contribute as you wish ... post questions ... offer insight ... post replies to other threads ...

My treatment history is shown at the bottom of this post, beneath my signature. I'm a school teacher and had just started a new school year when I was diagnosed with prostate cancer. My P.S.A. was up over 100 at the time of my diagnosis. The cancer cells had already infiltrated both of my lungs at the time of my diagnosis, so I knew I needed to get started on treatments immediately.

I'm thankful for the care and expertise of my doctors. I've had meaningful success from the ongoing A.D.T. hormone shots, the series of TAXOTERE chemotherapy treatments, and now ZYTIGA ... one of the newer breakthrough medications that has emerged in the past few years for the treatment of prostate cancer.

I've continued teaching full-time since my diagnosis. I stay active ... exercise, social events, volunteer work, and hobbies. I believe that staying connected to family, friends, and faith, in whatever form that takes for each person, is essential in "facing forward" in all of this ...

Ironically, several of my close friends ... all my same age ... have also been diagnosed with advanced prostate cancer ... these friends come from every chapter of my life ... old friends from my hometown, one of my college roommates, a church minister friend of mine, and a couple of work colleagues ... friends I have known for decades, and now we are standing alongside each other in a shared health diagnosis. I have formed a "bond of brotherhood" with each one of them, and we check in with each other often.

I'd like to also recommend one more thread on this forum ... type in this title, as follows: "Letters To The Newly Diagnosed" ... read the letters on that thread ... I think you'll find it meaningful, Paul.

This website provides a tremendous network of support ... I'm thankful you joined ... I'm thankful that you posted.

I hope you continue to experience success, as your treatments continue. We're here to encourage you and support you in all ways possible, Paul.

Handshake of support, from across the miles,
"Cyclone Team Fan" ~ Hailing From IOWA STATE UNIVERSITY (Team Colors: Cardinal Red & Gold !)
Posted 5/21/2017 7:04 PM (GMT 0)
Hi Paul. Just welcoming you to Healing Well also and wish you didn't have to be here. You have been to through the ringer already but looks like a great battle you are mounting. I wish you the best of luck on your PCa journey. Please keep us posted. You take care. -JR
Posted 5/22/2017 12:12 AM (GMT 0)
Paul
All of us high risk guys are all pulling for you!
Bib
Posted 5/22/2017 12:30 AM (GMT 0)
And some of the not-quite-as-high risk guys too!
Wishing you the very best with your ongoing treatments Paul.
Kindest regards from some other Aussies here in Melbourne.
Jaybee&GG
Posted 5/22/2017 2:08 AM (GMT 0)
@John_TX, thanks for your comments. I do my best, but it's a struggle at times.
Posted 5/22/2017 2:15 AM (GMT 0)
@Redwing57, thanks for your comments. Yes, I believe I am still hormone sensitive. Thanks for adding me to the Gleason 9 crew, I will definitely check it out. One of the things I'm finding frustrating is my Oncologist only wants me on Zoladex and I have read many times that guys seem to get good success by 'hitting it hard' early on with 3 to 5 different ADT treatments. I've read lots about Dr Leibowitz in LA who calls it Maximum Hormone Blockade and seems to get very good results. When I mentioned it to my MO, she dismisses it, says there's no evidence and that the combination is too toxic, without providing any evidence herself. I would move, but Perth is not a big city and she's apparently the best in PCa in my city. I'm hoping to find some evidence that this approach is better than using one agent at a time till they fail. My MO (uncaringly) told me that G10 guys don't live ten years, which I know is BS as I've chatted with some myself (online).
Posted 5/22/2017 2:17 AM (GMT 0)
@john16, thanks for your comments. Looks like you've also been through the wringer. Well done on your PSA response to date. Let's keep in touch...
Posted 5/22/2017 2:19 AM (GMT 0)
@Fairwind, thanks for your comments. I believe many of those treatment are also available in Oz, but when I've mentioned them to my MO, she said they are for guys 'out of options'. I did read somewhere that there will be a study (or studies) soon to test whether Zytiga and Xtandi given while hormone sensitive, will give a better response than waiting till castrate resistance sets in. I try to remain positive and optimistic, meditation helps with this.
Posted 5/22/2017 2:22 AM (GMT 0)
@George, thanks for your comments. I will take a look into Theranostics, they are very close to where I live! Thank you. Paul.
Posted 5/22/2017 2:29 AM (GMT 0)
@Tall Allen, thanks for your comments. Yes, I had cryo-ablation of the prostate, done by Dr Gary Onik in Ft Lauderdale Fla,. He does a focus ablation, in combination with a form of dendritic cell immunotherapy, where they spin out your white blood cells and add the immunotherapy agent (in my case Leukine) and then inject it back into the prostate tumors. After each round, I also had to inject Leukine, subcutaneously for 30 days. From the research papers I read, there seems to be an 80%+ success rate among high risk PCa patients and many of them get an immune system response which clears up some, if not all mets. I actually met a guy while I was there, who had stage IV and got a full response, no evidence of disease after round#2. I had 2 rounds, 2 months apart, but I didn't get much of a response. I was on no ADT at the time and my mets did not get worse and my PSA nadir was 0.2 so I believe it has helped, but not as much as I would like. Once my PSA rose to 3.0 I started the Zoladex again, shortly followed by the chemo.
Posted 5/22/2017 2:33 AM (GMT 0)
@ISU-CycloneFan ( I think your name is Paul also, from your comment), thanks for your comments. I appreciate you taking the time to respond. I will definitely have a look into the suggestions you've made. It sounds like you are doing well and I hope this continues. Can I ask, with your ADT, did you have them all at once or one at a time?
Posted 5/22/2017 2:35 AM (GMT 0)
@CaliJR, thanks very much for your welcome. I wish you well also. Cheers Paul.
Posted 5/22/2017 2:36 AM (GMT 0)
@Break60, thanks very much Bib, for your comments. I wish you well also. Cheers Paul.
Posted 5/22/2017 1:12 PM (GMT 0)
Hi Paul,
Sorry my response is late but I have been out of communication range. You have already received lots of great information from guys that know more about this stuff than I do. What I can offer you is some hope that you will get through the initial shock of the diagnosis and you will find a way to get through this. It's hard to stay positive, I know. I spent many days alone crying on my sofa thinking about all the people in my life and all the things I still haven't done. Then one day I thought that I would do instead of think. I would spend more time with the people I love and care for. I would not let small things bother. I would try to picture the other persons point of view. I would start to plan my travels. I truly believe that my relationships are better today than they were almost four years ago. It can be difficult to put yourself in this frame of mind, but when you get there you will be free. Take care my friend. I wish you all the best.
Posted 5/22/2017 2:15 PM (GMT 0)
Your MO's statement about "out of options" concerns me. The treatments you have mentioned are options some men have to continue to survive this disease. Thank goodness for options. I would hope that what she really meant is that certain treatments are not yet an option for you. I'll give her the benefit of the doubt for poor communication.

But her other comment about G10 men not being around in 10 years is also troubling. The correct response to that would be to find a MO who pledged to do all it takes to keep you around for at least another ten years. Our good friend Todd1963 fired his first two MOs for telling him he had very little time left. That was 10 years and PSA 3,216 ago as he is now undetectable.
Posted 5/22/2017 3:43 PM (GMT 0)

JNF said...
...But her other comment about G10 men not being around in 10 years is also troubling. The correct response to that would be to find a MO who pledged to do all it takes to keep you around for at least another ten years...

Doctors are guessing about such things, and I'd hate to see them limit treatment options out of some sort of misguided fatalism.

My grandfather had a kind of large bump on his shoulder. One time I asked him about it, and he said it was from breaking his collar bone and that's the way it healed, although it didn't have to be that way.

Apparently, in about 1922 he was in a serious car accident in a Model T. He was barely conscious, and overheard the doctors discussing that broken bone. They actually said they wouldn't bother with it, since he wasn't going to survive anyway! Well, he did, and lived the rest of his life with a problem that could have been fixed by a less pessimistic doctor.

I don't want doctors to lie to me. I don't want them to candy-coat anything, or "avoid bad news", nor do I want a sky-is-falling type. Just tell me the numbers, give me options and odds. Let's just be real about what we do and don't know, what we can and can't do, and what may or may not help. Let me decide if the side effects are worth the benefits.
Posted 5/22/2017 3:58 PM (GMT 0)
Welcome Paul,

You are too young and I'm sorry to read of your dx. You must have done a lot of research to have travelled to Fla for treatment. I think you've come to the right place for information here. There are many drugs available down the road and some men respond very well for a long time.

Wishing you the very best.
Posted 5/22/2017 9:04 PM (GMT 0)
Aloha Paul:
I am sorry about your diagnosis but glad you have found this site. Try not to read into your own experience the experience (especially negative) of others. As others have pointed out, this is a very heterologous disease and you often see 2 people with really similar stats experience very different outcomes.
I was originally diagnosed with Gleason 7 and Stage 4. I was told by my local doctors that HT was all that could be done and when that ran out of luck so did I. After a few months, I decided to move my treatment to MD Anderson in Houston (I live in Hawaii). They upgraded me to Gleason 9 and took a very aggressive approach to my therapy. Ultimately, I had 18 months of HT (Lupron + Casodex), RP (Da Vinci) and IMRT. My hormone therapy ran out in May '14 and since then (over 3 years) I have been off all treatments and still have a low psa of .2.
You still have a lot of options and you really need to be with docs that see a lot of advanced pca and can optimize your treatment plan. You don't need or deserve any doom and gloom from your docs.
Let me know if I can provide you with any additional info.
Simon
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