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Voice Post: Another mountain? PSA - 20.9

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Aug. 19th, 2006 | 11:20 pm

VoicePost
899K 5:03
“Well, I’m still trying to digest the last meeting I had with my doctor on Thursday. Basically the androgen deprivation therapy that I’m on is no longer working. I got a PSA back late that afternoon that shows that it is still rising. Its now at 20.9. So we spent a lot of the day focusing on the options for next steps.

The next step will include chemotherapy. The drug of choice for treating prostate cancer is called Taxotere ® or Docetaxel. In the case of prostate cancer, it doesn’t really work so well by itself. So it will be in combination with another drug. And that’s where the choice comes in really, because there is a series of clinical trials that UCSF is doing and that I would be eligible for, that my doctor feels especially good about two of them and wants me to look into them more and think about it.

I am actually going to post descriptions of all three on here and anybody who has any understanding or knows anybody who knows anything about the various treatments, I’d love to get some of your input and maybe I’ll even make a poll out of it and see what people recommend and what they think, and I’ll tell you what I think. No promises that I’ll do what you tell me to do.

It’s a lot to digest. It feels like a pretty radical shift in terms of my treatments and expectations. The small bumps in the road are beginning to look like another mountain. That’s cool. I am ready to climb it. I still don’t feel like giving up. Actually, I still feel very good physically, and once I get over the initial shock of hearing that the treatment isn’t working and that the cancer may be coming back,… I’m not quite sure for how long, but in the meantime, you know, my intention is to enjoy life and do whatever I can to fight this thing.

I may do one of these three trials or maybe there is something else out there that I should try next. One of the things I don’t want to do is shoot myself in the foot by going into one trial that would make me ineligible for another trial and make a drug unavailable to me.

One of the drugs that trails are taking place on right now is an immune therapy drug Provenge – you’ve probably heard of it. I’m not eligible for that yet because I still have bone pain, and you can’t be on painkillers for three months before you take that trial, so that may be down the line. But if I take another immune therapy trial, then I won’t be able to do the Provenge trial. But, they are also going to the FDA right now to see if they can use Provenge as a treatment for cancer. If that happens, then everybody will be using Provenge.

That’s really it. That’s the news for now. In terms of my health and next steps.

Tomorrow we have an engagement party which I’m really excited about. We have lots of good friends coming over. I look forward to seeing all of you, and spending some wonderful time with you and with my lovely fiancée Bethleigh.

And I look forward to hearing from you all here on the Web too.
Alright, this is Jeremy signing off.”

Transcribed by: cauch


I forgot to mention on this voice post that I also photo-blogged my visit on Thursday. The photo-blog includes seeing Dr. Ryan and also going to the infusion floor to receive an infusion of Zometa (zoledronic acid) - a bone strengthener that also helps stop the spread of cancer cells in the bone.

You can see that here:

http://www.splashblog.com/prostatecancer

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Comments {12}

Climbing mountains

from: jenmullen
date: Aug. 20th, 2006 06:43 am (UTC)
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you say that your bumps in the road are seeming more like mountains, just remember all the mountains you've climbed to help others, this one's the most important... you know you can do it. Enjoy your party tomorrow, lots of luvs to you and Beth, mom, sis and everyone else

Jen

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jerumi

Re: Climbing mountains

from: jerumi
date: Aug. 20th, 2006 07:01 am (UTC)
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Thanks Jen, thats what it feels like. I guess I'm as ready as I'll ever be..

Much Love,
Jeremy

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my thoughts

from: lanihorn
date: Aug. 20th, 2006 03:15 pm (UTC)
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Hey Jer,

I'm here in Ireland. I finally got an internet connection so I can hear your blog and post.

I am going to try and contact that woman I met on the beach who researches prostate cancer. When you get the names of the trials, will you post them or send them to me? I would like to get her opinion on which are the best.

Other thought: Is it worth looking to see what other kinds of trials are going on, like at Sloan-Kettering, etc.? I posted that Corporate Angels link, and if there is something good going on somewhere else, maybe it's worth the trips to get the best possible treatment.

It's good to hear your voice, good to hear your strength. You are, as always, in my thoughts and prayers.

Love,

Sis

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jerumi

Re: my thoughts

from: jerumi
date: Aug. 21st, 2006 11:30 pm (UTC)
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Thanks Lani, I'm going to e-mail you today as well. I am definitely interested in the other trials that are availbale, even if I have to travel. At this point I want to be sure that I am taking the next best step and it is clear that in order to do that that I will need more information.

Thanks again Sis, for your support!

Love,
Jer

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jerumi

Re: my thoughts

from: jerumi
date: Aug. 22nd, 2006 06:15 pm (UTC)
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I forgot to mention the two trials that are available right now at UCSF that my doctor thinks would be worth trying. They both include the chemotherapy drug "Taxotere" (Docetaxel) and Prednisone - to counteract the negative effects of chemo (Dad used this on Dogs a lot) plus either 1) "Avastin" an anti-angiogenisis drug or 2) an immune therapy drug called "G-Vax."

Of these two trials I am more inclined to go with G-Vax. I'm not so impressed with Avastin and neither are most of the people that I have talked with so far. I also like the theory behind immune therapy more than I like the idea of stopping the growth of all new blood vessels in my body..

The major problem with this G-Vax trial is that it is randomized and that I may end up in the control group that just gets the Taxotere & Prednisone. The upside to it is that at the end of the trial I can get the G-Vax. Another con is that if I end up getting G-Vax that I will no longer be eligible for a different, and more popular immune thrapy drug called "Provenge." But I'm not able to receive Provenge now anyway because I am still on pain medication (opiates).

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Hang in there bro!

from: anonymous
date: Aug. 21st, 2006 12:41 am (UTC)
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Remember its a marathon, not a 50 yard dash.

You sound like you are in the right space, and there are somedays you drive and you dont notice the speed bumps, and other days that you are unsure if the cars can even go over the bump. Thats just the emotional reality of any endeavour worth doing.

You see very clearly what has to happen next, and my vote is for you to spend this next couple of weeks doing the homework to know you have made the most informed decision when it comes to deciding. That decision is the one I vote for you to choose.

I am happy to review any information on the diferent gameplans, but ultimately that is a matter for your doctors. I hope you do have two doctors in mind (the guy who sounds like he is doing a good job, and then once he recommends a gameplan-- the second opinion of another doctor you can trust).

My recollection is that you were well aware that there was a chance the hormone therapy would only be the starting point, and I think its true that we all wish that promise would have held out longer. And now we are here.

I wish I was closer so we could have more time to just hang out, and that I could be of some help to you and Beth (especially to be there for all the family just as a matter of prinicple). After Dad called me on Friday with his version of the news, I even thought about what would it take for me to move up there?

Well, all the same, keep posting these bullitens, so everyone can be there for you. Also, could you please confirm that you get these emails I am sending for my own piece of mind by replying to my address; jwkilv@yahoo.co.uk

I love you, and know you can do this thing!

--Josh.

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jerumi

Re: Hang in there bro!

from: jerumi
date: Aug. 22nd, 2006 12:04 am (UTC)
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Thanks Bro, I do get these e-mails and they are posted on my blog under the brackets {} that are at the bottom of each voice post and next to "Reply." Just click the number between the {#}s to find my responses etc. I guess that you haven't seen my other responses to your posts?

Anyhow, I appreciate your words of wisdom and I am at that place where I am evaluating my options. I intend to speak to a variety of experts in the field to get their perspective. Its also very moving for me to hear that you were thinking about moving up her to help out. I really appreciate that.

Lots of Love,
Jeremy

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Kolakoski

(no subject)

from: kolakoski
date: Aug. 21st, 2006 10:52 pm (UTC)
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It's wonderful to hear your voice, and I'm glad to know that you're feeling good physically despite the recent rise in PSA scores. So now you have a mountain instead of a molehill to climb--the view will be that much better!

I hope you enjoyed the party the other night, I'm sure it was great to visit with good friends.

Well, keep up your spirit, and know we're all thinking of you.

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jerble

from: anonymous
date: Aug. 22nd, 2006 07:29 am (UTC)
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http://www.ayurveda.com/

I love you Jer.

Even though i may not write I am always aware and on your blog...as well as holding you close in my heart hoping to send strenght, hope, wisdom, courage, love and laughter.

My friend,
always forever and beyond that

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jerumi

Re: jerble

from: jerumi
date: Aug. 22nd, 2006 06:17 pm (UTC)
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Thanks Beej, I appreciate your support. Please give Marcel my Love and we wope to see both of you really soon! Let us know when you are planning on coming up for a visit!

xo,
Jeremy

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Re: jerble

from: anonymous
date: Aug. 27th, 2006 11:46 am (UTC)
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I am constantly amazed at the struggle you are now having to go thru in your life.
I feel like I am walking into a Dali painting only to wake up and discover your cancer is all a sick dream I have had.
I can't imagine what you must be going thru and as much sadness, reflection, anger, questions....and most of all love and admiration I am feeling...to step back and think of how YOU must feel really floors me.

I love you and so badley want to be there and help you and "fix" this and I know I can't. This is your path, your lesson the universe has brought to you.

You have really done it Jer...what we talked about 20 yrs ago on that hill above the city...you MADE and are still MAKING a difference. YOu did it. You are doing it.
Hold strong my sweet sweet friend -
i love you
i look forward to seeing you and Beth

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jerumi

Re: jerble

from: jerumi
date: Aug. 28th, 2006 06:53 pm (UTC)
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Thanks so much Beej, for your words of support and encouragement. I'm taking it moment by moment and enjoying life more then I ever have. Give Marcel my Love and I look forward to seeing you both real soon.

Love,
Jer

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