Favorable Casodex withdrawal

Just thought I would share this, might help someone.

I started out with a psa at 850. I immediately went on Casodex, month later started Lupron injections. It took my psa down to 400. A month later I started 6 rounds of Docetaxel. The chemo helped take my psa down to 0.06. It went up to 0.1 and stayed there for 2 years. 5 months ago my psa jumped from 0.1 to 0.7. So....I went to monthly testing. Next month psa read 1.8. My oncologist had me stop taking Casodex. following month psa came in at 2.0. At this point my oncologist started the Provenge paperwork/approval. But 2 months after stopping Casodex, my psa came in at 0.5. The next month, yesterday, my psa came back undetectable. So it took 12 weeks for the Casodex to fully leave my system and drive my psa back down to unreadable. Needless to say, I'm going ride my favorable Casodex withdrawal as long as I can before I start Provenge. My oncologist remarked to me that some men have a favorable withdrawal response that last up to a year.

So it looks like I'm buying time before I have to start taking Zytiga (abiraterone acetate). My point is, when things start looking bleak, good things can and do happen.

[Dan59]

This is such awesome news! Happy for you. The chemo sure semed to knock it back for you , and you are in such a good spot now, and you have plenty of options in the future, not to mention the new things they are coming out with. I wish they knew about early chemo when I was dxed ,Dr Strum did, he told me to do it immediately with ketoconazole for synergistic effect, but my doc did not agree, and I did not really want to , I was a lot more active then.

[Hidden in reply to Dan59]

Thanks Dan59, I appreciate you responding in a positive manner. As far as chemo goes, both my oncologist and me agree that if and when the need to use it again arises, We are going to pump another 6 courses into me. I really had little to no side effects from it.

[Hidden]

Congrats. I too had Casodex Withdrawal response. My guy told me that 20% have this response. I am now on my 13th year with undetectable. Keep kicking the bastard.

GD

[Hidden in reply to Hidden]

Yes, I consider myself lucky to get a good response.

[MelaniePaul]

Wow, that's wonderful news! I didn't know about this effect that Chemo withdrawal can have! So that's fantastic to know! And I wish you both good luck and of course everything good luck as always!!!

[Sisira in reply to MelaniePaul]

Get it right Mel. It is not chemo withdrawal! It is Casodex ( anti androgen ) withdrawal which sometimes yield this benefit to some individuals. It has become an acceptable treatment strategy worth trying because it has no cost at all!

Regards

Sisira

[MelaniePaul in reply to Sisira]

Yes, sorry, I didn't mean to say "chemo withdrawal".

My husband had Casodex years ago, as far as he remembers he was part of a trial with it, but he had to stop it because he was feeling very unwell on it. However, he would be willing to try it again. We'll mention it to the oncologist as well.

Mel.

[Hidden in reply to MelaniePaul]

Never say your sorry, it was a simple mistake.

[Hidden in reply to MelaniePaul]

Thank you, but please read what Sisra noted.

[anya6]

I think the withdrawal is to casodex. I was hoping the same would happen for my dad but maybe enough time hasn't passed. He had the same progression and after the fifth or sixth round was down to 1.6 but about a month after chemo ended it went to 6. They waited a few weeks to do pet scans which didn't show a tumor though still some bone impact. Casodex was stopped about three weeks ago and last weeks psa was up at 33. Its hard to know how long to wait before moving to xtandi or zytiga. The doc was ok waiting for this recent test but now believes a decision needs to be made on the next drug

[Hidden in reply to anya6]

Anya6, yes the withdrawal is to casodex. Please note it took me nearly 12 weeks before it took full effect. After the first month, I was worried it wasn't going to happen but it slowly started taking effect.

[Sisira]

Thank you nameless for posting your case again with the latest progress which is very encouraging. Remember somebody once said you are a lottery winner?!

Best of luck all the way

Sisira

[Hidden in reply to Sisira]

Your welcome, we are all in this together, black, white, Asian. Straight, gay, etc. We share one common goal and that goal is to defeat the monster that dwells inside us. Anything I can post to give my brothers in battle a positive thought, I always have and always will.

[Sisira in reply to Hidden]

True, your esteemed thoughts are honoured.

Sisira

[BigRich]

I started Casodex withdrawal this week. I pray that I have a response.

Rich

[Hidden in reply to BigRich]

Bigrich, Just don't get discouraged if early results aren't favorable. As I noted, it took me 8 weeks before I started dropping and 12 before it took full effect. The "experts" say it takes 4 to 8 weeks. I proved them wrong, taking 12 full weeks. You will have a response, stay positive!

[BigRich in reply to Hidden]

nameless9999,

Thank you for the encouragement and information. I plan to live a long time.

Rich

I am blessed. here's to another ten years.

[Break60]

Great news!

[Hidden in reply to Break60]

Thanks Break60.

[j-o-h-n]

ACCENTUATE THE POSITIVE ~ Johnny Mercer & The Pied Pipers (1945)

youtube.com/watch?v=f3jdbFO...(Not working as expected?)

j-o-h-n Saturday 07/08/2017 10:25 AM EST

[anya6]

Thanks all. Yeah I agree, it feels like sometimes there is a lot of guessing and taking a chance with something that is so serious. We fear waiting for casodex withdrawal to work but then having the psa escalate too much. The back to back jump from 1 to 6 to 33 has been scary.

[docbulldog]

What great news , so happy for you . I'm just about to finish my Provenge treatment and was hoping to go on Xtandi, but the cost way too much for our budget at this time , so one of my oncologist thought maybe I should start Casodex and then see if I would qualify later for some help with Xtandi. So do you think it was the Casodex or the chemo that made your PSA drop to undetectable?

[Hidden in reply to docbulldog]

Docbulldog, I can only answer your question with this response, it was what I was told by 2 of the best prostate cancer oncologists in the United States. The Casodex was an opening volley which brought my psa down from 850 to 400. Then Lupron brought it down again. But the early chemo was responsible for my psa to drop to an undetectable number. That is what they told me. After I finished my chemo, I remained on Casodex and Lupron. I'm presently using only Lupron, waiting for my psa to go back up in order to start Provenge. (I'm in no hurry). But, Let me be clear, it was what I was told, i have no medical background what so ever. All I know is that it worked well for me.

I'm terribly sorry to hear that you can't afford Xtandi. Have you exhausted all possible options for help? If It was me, I would start a post here asking about assistance in obtaining Xtandi. One time I stumbled across assistance to help pay for Neulasta. I ended up with a $15,000 debit card to help defray the cost. Please keep searching for help.

Anyone else reading this....can you give docbulldog a lead for help? This is vital. Please let's all put our knowledge together and help this man.

[MelaniePaul]

I would encourage your dad to try Xtandi or Aberaterone. From our personal experience, I can say that Aberaterone was working very well for three years and my husband found the side-effects very managable.

Mel.

[Sisira]

Very interesting comments indeed!

Thanks Nalakrats

Sisira