Crap, I thought I was cured. Part 2

Michael,

It sounds like you are making the decision to wrap up your relationship with the business. I did something similar two years ago, shortly after my prostatectomy, when I retired from a job that had given me many satisfactions but was simply not what I wanted to do with the rest of my life. I have not regretted this move for a moment, but I had a clear idea of what I wanted to do with the rest of my life. I've plunged into political activism--participating in community events, reading and writing, doing research, building a network--more explicitly pursuing goals that I was only able to pursue in a more attenuated way in my professional career.

I have no idea what my lifespan forecast will look like in a few months. So far, it's been an up and down ride. When I went for the prostatectomy two years ago, the nomograms said I was more likely than not done with PCa with a 70% or better chance of being "cured." After a string of undetectable PSA readings lasting 8 months, my PSA began a relentless climb back up, reaching .2 before UCSF scheduled me for salvage radiation. The rad onc said I had a 20-30% chance of being "cured." In a couple of months I'll find out what my post-radiation PSA reading is and perhaps a new percentage likelihood of this or that occurrence will be proclaimed. What I've learned through all of this is that the percentages may be helpful in deciding treatments, but that all you can do is prepare for whatever may come and hope your case follows the rule when the odds are the good and becomes the exception when the odds are bad. The doctors have no idea why my prostatectomy was followed so soon by biochemical recurrence, nor do they know how to figure out whether I am going to be in the 20-30% who will be cured by SRT. I read many dozens of medical journal articles in the effort to understand my own likely lifespan and quality of life and realized that, for the most part, probabilities are of value only in making treatment choices, not in making choices about what to do with my life.

This has made me more conscious of the need to live in the present which is not always easy to do. Tall Allen who is such a master of the statistics is also an advocate of mindfulness meditation. I agree with Allen and have added yoga to my regular routines. But living in the present for me also means continuing to fight for the causes I believe in. It's what gives my life meaning so I need to do as much of it as I can as long as my health permits. I don't want to start throwing bombs here, because I cherish people in this community who are kind and helpful to others regardless of how much we may disagree politically.

Tomsson

Yeah, true. "Winners" don't like taking on something they may not win.

Anyway, enough of killing this thread with useless political innuendo. I will leave the topic with this thought though. If our "humble and selfless" King Trump suddenly got diagnosed with metastatic disease himself the interest in cutting cancer research money would no doubt reverse into a push for major new funding and maybe our metastatic futures would look a little less gray. I brought the anecdotal thought up with some research docs recently, who all laughed painfully and fully agreed.

But I forgot. A "winner" like King Trump would never get cancer. Cancer is only for expendable "losers" like me.

Enough. Enough. I'm really sorry, I know this is not the right place to vent. From within and from without, I'm just so incredibly disturbed lately. I'm besides myself with frustration and kinda going nuts to be honest.

To be fully honest I feel trapped with this new diagnosis. I lost both my parents last year and now this. I'm truly overloaded with emotion. I got to find some ground.

Ok, facts...

I visited with two docs today, both contributors to the tumor board that reviewed my case. Nobody is advocating local treatment for me as my pelvis has already been radiated, surgery would be a bit difficult they believe and intent for cure is likely folly.

Tall Allen, they are suggesting a trial they have going on here that uses taxotere a bit differently than on the CHAARTED study. They said they have discovered that taxotere is more effective when NOT used in a castrate setting, like much more effective, and the trial is using taxotere first for four cycles of chemo, then introducing ADT I believe at the end. They seemed pretty optimistic about it. What do you think on this?

They acknowledged the lack of evidence of benefit from Docetaxel in low volume disease but thought the finding was suspect as there wasn't enough time to really read any benefit in patients that had a longer time to live (and are mostly still alive) in the first place. What I would like to know is if the low volume patients receiving Docetaxel had a longer remission from PSA rise compared to those not receiving Docetaxel. Is there any such data?

Thanks again,

Michael

Yarbo3 said...
I want to cry. I REALLY WANT TO CRY! I spent an hour and a half writing a nice post, full of wit, intelligence and commiseration and the darn thing dissapeared on me. I tried again and it DISSAPEARED AGAIN. Then again and it DISAPPEARED AGAIN. WAHHHH!!!!!

That, my friend, is the universe telling you that you were not meant to post that particular message at that specific time... "universe" meaning fate, God, forces of nature, or whatever.

Recently I composed a lengthy reply to a very distraught woman in a lymphoma forum, a message which was deeply religious and somewhat philosophical. When I hit the post button, my tablet froze. Not that it had never frozen before, but it is rare. Faced with rewriting the entire reply, I felt justified convincing myself that what happened happened for a reason and was possibly beyond my control.

Hey Tall Allen,

Ask and you shall deliver! I am truly, truly in awe...

That's sobering. I'm not a fan of needless toxicity to the body and I am wary of going forward with chemo unless it's really gonna do something positive.

I am going to send that link to my Doc and see what he says. He will probably mention the disparity of their use of docatoxel with ADT rather than the use docatoxel alone at first with their trial.

He swears they found Docatoxel is more effective against prostate cancer cells in a non castrate environment. Have you heard that claim from any other source by any chance? If it is true, it does make it a more appealing option.

I emailed the contact person for the ProstVac study. I haven't heard back yet.

I'll let you know.

Many many thanks,

Michael

Thanks Allen,

When they factor overall survival are they seeing time till death or time till biochemical recurrence? If till death, these studies must have been around quite a while as low risk patients are naturally going to live quite a while. Do you know how long?

I will ask my docs WHY they feel docatoxel works better in a non castrate environment. He said they are the only ones currently moving forward with trials and they are trying to encourage some other institutions like Yale, etc. to join them. The three docs I consulted seem pretty enthusiastic. I will ask and let you know.

Thanks again,

Michael

Michael said...
When they factor overall survival are they seeing time till death or time till biochemical recurrence? If till death, these studies must have been around quite a while as low risk patients are naturally going to live quite a while. Do you know how long?

Survival does NOT mean biochemical recurrence. They do not treat low risk patients with docetaxel. These studies are on incurable patients with metastases. Each study shows how long the follow up was - look at the study.

Michael said...
Do you know if Docetaxel has ever been used on prostate cancer patients without the use of ADT?

I've never heard of that. They are always used together, and have been from the start of the first docetaxel trials. What is the advantage of sequencing them?