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Feeling pretty bummed out

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Posted 7/30/2013 2:27 PM (GMT 0)
Perhaps devastated is a better word.

After all those body blows with rising PSAs, the HT has kicked PC's butt.

PSA has dropped sharply each time, now 0.03 (was 17.55).

Unfortunately, as I posted elsewhere, my liver enzymes are way up, so I have to stop the Casodex until we retest on Monday to make sure it wasn't a lab error.

I'm just feeling very sorry for myself as I did not expect this, just when things were going good.

Vacation time coming up. We leave for Vegas tomorrow. Will spend a few days there at the beginning and 2 days at the end of our trip. In between, we will visit with our daughter in LA and my stepmother in Palm Desert (for just 1 day in that heat!). Oh, and did I say I see Dr. Lam on Monday?

End of whine/mini-vent.

Mel

 

Posted 7/30/2013 2:43 PM (GMT 0)
compiler,

Sorry to hear the news but Lupron can keep your PC in check by itself. Take a breath, it will work out. I'll be praying for you buddy.

Ken
Posted 7/30/2013 3:16 PM (GMT 0)
Just sending you a hug Mel and oodles of positive energy!!!
Enjoy your vacation.
Susan
x
Posted 7/30/2013 3:39 PM (GMT 0)
Hi Mel and sorry to hear your news. When Dr Lam first added Zytiga to my HT, it led to an inflamed liver and I had to stop the Zytiga and the Casodex. I quickly re-started the Zytiga at a reduced dose and I'm now taking 50 mg of Casodex every other day.

But even with all the tweaking and sometimes stopping the Casodex my PSA is 0.01. So hopefully, you'll find a happy medium with your Casodex as well.

BTW, I go into his office to get my bloodwork today, so I should shortly know how my latest dosage is (or isn't) affecting my liver.
Posted 7/30/2013 3:49 PM (GMT 0)
Mike:

I sent you an email with some questions.

I might add, for those who have criticized the idea of trying to see the very best doctors:

I am very fortunate that Dr. Lam has stayed on top of things (with all these super annoying tests!).

Your response really did help my mood. It is time to stop moping/crying and resume life!

Mel
Posted 7/30/2013 3:54 PM (GMT 0)
Not to worry Mel.
Casodex Eventually fails anyway. It only works for me for a period of 14 months before it started to cause my numbers to rise. Lupron Is enough and if your numbers begin to rise you can always go back on the cassodex.. you are going to be just fine. Todd
Posted 7/30/2013 4:40 PM (GMT 0)
Mel, I quickly exceed my pay grade when I start talking about ADT stuff so I won't. But, I think some of the ADT knowledgeable folks have already weighed in so the glass is looking fuller all the time. In the meantime, enjoy your vacation, win lots of money and rest assured that the world won't end between today and the time you see Dr. Lam in a week.

Have a great time.

Jim
Posted 7/30/2013 4:51 PM (GMT 0)
Mel,
I have been watching your posts on other forums. The replies have been excellent. Some of the guys simply gave the bicalutamide a break and still maintained disease control with the the LHRH agonist. Probably with less treatment side effects but that was unclear.

Also don't get too despaired. Remember we have some great second line HT options. If you see a rise in PSA once you stop the bicalutamide, also consider asking about Provenge. In the post I did earlier this week the rule of thumb that's grabbing traction is immuno-therapies are likely to show their best performance earlier than later in progression.

Still, I'm betting that you may be able to shelve HT for a while soon enough. You have responded extremely well and with favorable prognostic indicators.

Tony
Posted 7/30/2013 5:17 PM (GMT 0)
So sorry about the news, Mel. You have all our best wishes and support.

Keep us posted on what happens as you deal with this latest issue. Many of us follow your experience closely to help us understand what we may be going through later. Hopefully, as others have indicated, this will be a temporary setback, and other avenues will get you where you want to be.

We're pulling for you,
Greg.
Posted 7/30/2013 10:59 PM (GMT 0)
Mel:  It's an easy fix to get your enzymes down if the Casodex is causing it.  Dr. Lam will probably put you on Ursidol .  I had the same issue and Dr. Dattoli prescribed Ursidol and the enzymes fell right into line. 

Good Luck

David

Posted 7/31/2013 6:10 AM (GMT 0)
Mel, enjoy your vacation and think about these things when you return.  Wishing you the very best!

Peace,

Aimzee

Posted 7/31/2013 1:59 PM (GMT 0)
Sorry if I missed it on an earlier post, but why on both casodex and Lupron?
I thought Casodex was only given very briefly (a week?), then followed by long term Lupron.

If you are only stopping casodex, and staying on Lupron, hopefully that will still keep your PSA down nicely!
Posted 7/31/2013 3:12 PM (GMT 0)
Gibson:

It's called ADT2. The idea that the 2 drugs will work constructively.

Many also add Avodart (ADT3)

Mel

Posted 7/31/2013 6:35 PM (GMT 0)
Mel, I too am not that knowledgeable on this ADT stuff, but if my friend Todd says to not worry I wouldn't worry one bit. Todd has been through it all and always tells it like it is. Take that deep breath, relax and nothing is going to happen until that second liver test anyway.

Terry

Posted 7/31/2013 9:04 PM (GMT 0)
It's all relative. I'm bummed out too, but for different reasons.

My surgery had been scheduled for Monday, July 29, but last week they confirmed the cancer had spread to at least one lymph node, so the surgery was canceled and I started Bicalutamide last week. Shots (probably Lupron) will start next week. In two months radiation will begin and go on for another two months. Hormone therapy may continue for several years.

At 48, my PSA was 4.2, but I didn't follow up. Who takes an umbrella when the chance of rain is less than 1%? At 50 my PSA was 21, MRI targeted biopsy with 18 cores confirmed 3 lesions with cancer, Gleason score 8. Fortunately all scans showed it wasn't in my bones. I'm being treated at NIH and part of several studies and hope to enroll in more.

I want to be optimistic, but it's difficult. I'm an Eeyore, and many of the members here are older without lymph node involvement. But I don't want to spend any time being miserable. It serves no purpose. I'd like to hear some uplifting stories.

Keith
Posted 7/31/2013 9:16 PM (GMT 0)
Keith,

Welcome to the forum. I've started a new thread for you so people can say hello without stepping on Mel's thread. Here is a link:

www.healingwell.com/community/default.aspx?f=35&m=2809353
Posted 7/31/2013 9:20 PM (GMT 0)
Mel,

I wouldn't be too upset about being taken off Casodex for a while. Some doctors don't even think you need it but since yours do I am sure they can get you on another anti-androgen that won't bother your liver.

They might have to throw in a little something extra to replace that reassuring Casodex stomach ache to get you back exactly where you were.
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