History of my cancer becoming castrat... - Advanced Prostate...

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History of my cancer becoming castrate resistant

dac500 profile image
26 Replies

Thinking that some people might be interested to know how my metastatic cancer became castrate resistant I posting a brief history.

When on Lupron break, my PSA reached 1.1 on June 1, 2022. I had a CT scan which found a new lymph node enlargement [Retrocaval lymph node measures 0.5 x 1.1 cm (series 4, image 175), new.]. I was put on 1 month of Casodex which reduced my PSA to 0.342 when I started Lupron shot again and have been on it continuously since then. In a CT scan on January 23, the above lymph node reduced in size [ retrocaval node measuring 7 x 5 mm (series 4 image 177), previously 11 x 5 mm. ] My PSA history since 6/1/22 is shown below:

Between July 22 and July 23 my PSA hovered around 0.3 indicating that Lupron was not effective. Between 7/31/23 and 11/1/23 my PSA jumped from 0.34 to 0.80 [doubling time 2.5 months]. A PSMA PET/CT scan discovered new PSMA avid nodes and the retrocaval node increased in size [Retrocaval node (CT image 202), measuring 1.8 x 1.1 cm with SUV max of 38.4, previously PSMA-avid, and previously measuring 1.0 x 0.6 on prior CT Abdomen and Pelvis.].

My oncologist confirmed that my metastatisc cancer is now castrate resistant. He has added Zytiga to Lupron.

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dac500
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26 Replies
KocoPr profile image
KocoPr

Thanks for posting. So are you saying you became castrate resistant because of the vacation you took?

Also have you done a new genetics test on your new tumor?

dac500 profile image
dac500 in reply to KocoPr

I am not saying I became castrate resistant because of the vacation. I don't think the vacation from ADT has anything to do with becoming castrate resistant.

KocoPr profile image
KocoPr in reply to dac500

ok, good to know the castrate resistant wasn’t caused by vacation.

Any genetic testing done? It is important to know what mutations your resistant cancer created.

j-o-h-n profile image
j-o-h-n

You thought correctly: Interesting....Thank you!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/05/2023 7:24 PM EST

Justfor_ profile image
Justfor_

Using Casodex only for mitigating the initial PSA rise of Lupron, doesn't sound as a good practice to me. What if you had continued taking it? We will never know.

dac500 profile image
dac500 in reply to Justfor_

There was no question of taking it longer than one month. Why worry about a hypothetical situation?

Mgtd profile image
Mgtd in reply to dac500

When I read you were on Casodex for a month my first thought was that seems reasonable to to prevent the normal flare from Lupron.

safari123 profile image
safari123

Many thanks for this info. I have had this future question on my mind. All the best

jackwfrench profile image
jackwfrench

Is your onc saying you are only resistant to Lupron so he’s adding Zytiga? Not clear on the strategy.

dac500 profile image
dac500 in reply to jackwfrench

No he said castrate resistant.

dhccpa profile image
dhccpa in reply to jackwfrench

Some still use CR as when initial ADT fails, IF one only used Lupron, Eligard, Firmagan, etc. I think I'm right about that.

lowT163 profile image
lowT163

morning.

This is the question on the mind of everyone here?

Do you mind sharing the length of time from the end of treatment to being castrate resistant? Everyone is different I know but as I head into the 4th year off drugs and treatment it’s on your mind a little or a lot more? Mine was out of the prostate so no thoughts of never returning.

Thanks

dhccpa profile image
dhccpa in reply to lowT163

I've been on Lupron only since the beginning five years ago. There is no end.

dhccpa profile image
dhccpa

You say between July 22 and 23? Is that correct?

And why is 0.3 on Lupron castrate resistant? I've never gone below 0.5 in 5 years on Lupron.

Am I missing something?

dac500 profile image
dac500 in reply to dhccpa

What was your PSA when you started Lupron? On Lupron my PSA reached the low of 0.06. More important is the PSMA scan, which shows new avid positive nodes indicating cancer was progressing when Testosterone was <20. My oncologist said I am castrate resistant and I go by his definition.

dhccpa profile image
dhccpa in reply to dac500

Gotcha. I wasn't arguing.

My PSA was 200 when I started Casodex 11/6/2018. I started Lupron 11/29/2018 and discontinued Casodex around 12/20/2018. Next blood test in Feb 2019 PSA was 0.7. over the years since, my PSA has bounced up and down from 0.5 to 1.4. Sept 2023 was .97.

I still have my prostate. Did you have RP or radiation?

Vegasman profile image
Vegasman

Zytiga works well. I used it but had to stop because my heart rate was already low and it went too low with Zytiga. Now that I have a pacemaker that keeps ny heart rate above 60, I am going back on this medicine. I am 85. I also get monthly injections of Firmagon.

dac500 profile image
dac500 in reply to Vegasman

Thanks for letting me know Zytiga works well. I am 83

Ztlf profile image
Ztlf

My husband had the same problem with Zytiga for a couple of weeks. They raised the amount of predisone he was taking from 5 to 10 mg. Then his BP started to go, and he was hypertensive, so now he is on 5 mg. of prednisone again with hypertensive medication. he has a pacemaker as well, but this issue is not related to heartbeat.

gsun profile image
gsun in reply to Ztlf

When you say his BP started to go, do you mean up?

Ztlf profile image
Ztlf in reply to gsun

Yes. Ooops! It is stable now, but it did go as low as 75/50. Not good.

Big_Mcc profile image
Big_Mcc

Thku for sharing how castration resistance developed in your case. I somehow thought it would take longer but I guess 18 months is about right. Not looking forward to that challenge being on my horizon. Good luck and best wishes

ImDD profile image
ImDD

I thought the current thinking is to start Zytiga concurrently with Lupron right away.

dac500 profile image
dac500 in reply to ImDD

Yes I am getting Zytiga with Lupron.

ImDD profile image
ImDD in reply to dac500

I meant the recommendation now is to start Zytiga immediately...not after CR. Perhaps that was not the case when you started out?

Graham49 profile image
Graham49

I presume there's too many tumors for SBRT. Has PSMA Lu177 been considered?

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