My Story

I have been lurking around these groups for awhile. I decided it is time i post my story. I have a difficult case, one of the more aggressive Ive read about.

Here is the background -

My age -48. Current psa 760

Original symptons in early 2008. Difficult urination. Hard to start. Low flow rate.

Went to primary care. PSA = 27. Referred to urologist

Had biopsy. all needles positive. Gleason 9. Cancer out of capsule and into vesicles and nerves.

Had retropubic prostatectomy. Didnt get it all . Margins positive. One node positive, but post op psa undetectable

Started lupron. on it ever since.

Had EBRT of pelvic bed. Thought maybe the cancer was all taken care of.

No sexual function. Manageable incontinence using pads.

Jan 09, psa started rising again.

Tried Casodex, no effect.
Tried abiraterone - placebo trial. No help.
Tried ketoconizole - No effect.

Went for taxotere. lost most body hair, hair on head thinned.

Psa still rose during initial taxotere cycles. Max was around 1200

Stayed on taxotere with one break until psa started rising again. 14 cycles total. Able to get psa below 150 while on taxotere. Stopped taxotere with psa around 650.

Changed to Jevtana. On third cycle currently.

After first Jevtana, psa dropped, it has since started rising again. One more rising psa and will stop Jevtana. Running out of treatment options. May try carboplatin. Hopefully, I can get in a XL 184 trial. Also , I should try abiraterone in case i received placebo the first time.

I have bone mets all over. No organ mets so far. Am on oxycontin for bone pain.

That is my story. Ive been through it all. If you have questions about treatments, please ask....I have probably been through it at some point already.

Hi Don,
It certainly does look like you have had a long bumpy road. I too am 48 and can count my blessings. But reading your story makes me very humble and also very lucky.

Welcome to HealingWell. There are several here that have been through quite a bit. One in particular you may already know ~ David Emerson. DavidE (FLHW) is his screen name and he is younger than us by a year and his PSA at last glance was over 400 (according to one center).

Thanks for coming. I am certain that there will questions that you can drop in with sage advice.

Tony

Don,

May you find some peace, my best to you.

As TC said I'm Humbled, Thanks for sharing

Hero

Thank you for sharing your courageous story with us. I feel for you and good luck on your fight.

By the way, have you tried Provenge?

Don:

You demonstrate courage, wisdom and a strong will to beat this beast. I commend you. Stay strong.  Our neighbour has been fighting Stage 4 lung cancer for the last 7 years.  She was told it was terminal with 9 months to 2 years at best.   She first told me about HW last November as she attributes her longevity to forums such as this, a strong will and a positive and spiritual lifestyle.  She has good days and bad but she is out and about.  Her motto is to never give up hope.  She has all of the doctors baffled as well as her oncologist.  So... after reading your story and reflecting on my own story of the last 3 years, having gone through failed RP, failed EBRT and presently on HT with success so far, all we really have is the strong will to live and to live with some QOL.  Great going Don and keep up your fight as we are doing as well.

Jack

Lee- I googled this little bit on Ipilimumab:

Mechanism of action Ipilimumab is a fully human antibody that binds to CTLA-4 (cytotoxic T lymphocyte-associated antigen 4), a molecule on cytotoxic T lymphocytes that is believed to play a critical role in regulating natural immune responses.[8] The absence or presence of CTLA-4 can augment or suppress the immune system's T-cell response in fighting disease.[9]

Ipilimumab is designed to block the activity of CTLA-4, thereby sustaining an active immune response in its attack on cancer cells.[10][11][12][13]
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(This is mentioned by Dr. Rubin in the above list of things I found in his Pathology Journal article, looks like this doc is amongest the wise)
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[edit] Clinical trialsAs of October 2007[update], there are two fully human anti CTLA-4[14] monoclonal antibodies in advanced clinical trials. Ipilimumab, which is an IgG1 isotype, and Tremelimumab (from Pfizer) which is an IgG2 isotype.[15][16]

LEE-Do you have some things you could mention about it , since you have looked into it?
DON- and others are reading such and anyone whom is interested can maybe learn something new. Maybe Don has other 'new' to us concepts on PCa, it is surprizing what some people are doing or have done. If you wished to post a longer version of your journey plenty of us would read it, also goto  www.yananow.net  maybe 1000+ patients have their real time PCa journies listed, many with contactable email as mentors. You may be able to help or advise someone else, especially on the protocols and things you know or learned.

Post Edited (zufus) : 4/24/2011 11:05:57 AM (GMT-6)

Don:

Have you been seeing top doctors? I would think you need someone who is up on the latest drugs/clinical trials. Perhaps a major cancer center is the place to go?

Yahoo Groups has a support group for advanced prostate cancer. It would be work posting there, too.

Mel

Danielle,

Good luck to your husband, as you continue onward in his journey.

David in SC

To All -

I have been overwhelmed by the response to my story. I was feeling a bit depressed Saturday night and so decided to try and put down my history - thus my first post. Your responses sure cheered me up. Thanks especially for some of the new therapy options. Regarding some of your questions:

I am seeing a world class PCA dr at a world class uralogical cancer facility. I am shy and wish to remain anonymous for now so I'm not going to name the Dr or location at this point.

Regarding my diagnosis.....I had just turned 45 years old and had my biopsy in March of 08. The biopsy indicated spread of the cancer out of the capsule into the seminal vesicles and surrounding areas. I had the retropubic prostatectomy in May of 08.
The path staging of the tumor at the time = PT3b N1 Mx R1 (Margins Positive, Lymph Node Positive) indicating local metastasis but not distant metastasis. bone and ct scans negative at this time.

The prostatectomy operation was a nightmare and I nearly didnt make it out of the hospital. I will leave that story for another time.

After receiving EBRT from Aug to October 2008, psa was 0.1 (not quite undetectable as I said earlier.)

In Feb 09, psa jumped to .6, and in March 1.3. At that point bone scans showed distant metastasis to bones. At that point I knew the cancer was not killed by the Op or the radiation and was now stage 4 and that my days were probably numbered.

Each taxotere cycle is 3 weeks. Typically, I would give a blood test on Friday, see the oncologist Monday AM and receive the psa result, and receive the infusion of Taxotere in the afternoon. 1 hour infusion of taxotere preceded by a 30 min decadron infusion and a 15 min Zometa infusion (for bone health).

Jevtana is similar to taxotere, but comes with a little more fatigue, and a little more nausea.

Later, I will describe more about:

The prostatectomy - Some things they may not tell you up front. (In the words of George Constanza - "Shrinkage.")

Radiation therapy for male breast growth.

More on Lupron, hot flashes, etc.

Chemo side effects.

Bone mets - A major issue in my life right now.

Regards !

Don
You have really been through it. I want to echo one of the other writers. Have you seen the best prostate cancer oncologists. Some of them will do phone consults. This is really the time to be talking to the best. Out here in California its Snuffy Myers, Scholz and Stephen Strum in Oregon. Sloan Kettering is the best institution I know of on the East Coast.
Best wishes and prayers in your fight.
Richard

Don,
Thanks for sharing your journey with us. It is quite a story to say the least. Your courage and determination to fight this disease is amazing. I wish you the best. Please keep us posted.

Don,

What were some of your side effects when you were on taxotere? Aside from hair loss. You said each one was 3 weeks apart, and you had 14 rounds, so that means you were on it for a full year? Yet your PSA continued to rise. How often was your PSA checked during that time period, monthly perhaps?

David in SC

Fao zufus
In response to your thread,I yet have only limited knowledge of the trial drug ipilimumab but read an article in the uk guardian newspaper stating great results in early phase 1 and 2 trials.the reason ive put myself forward is because I can remain on my present ADt treatment at the same time as participating in the phase 3 trial (if I'm accepted).I have a meeting with my urologist on may 17th where I will discuss going into the trial.I believe the trial is recruiting until 2012.
Don my appologies for butting in but this may have been of some use to you.
Don I would also like to say,and I think I can speak for all of us at HW,that you are amongst a group of caring friends.
Regards Lee.