It was bound to happen – came as no surprise (although you could hope for a different outcome).
My PSA has jumped dramatically, in the last 6 months. Previous reading was 1.7 – jumped to 3.2 a week ago - no reason to believe that the rising numbers are going to stop 'naturally'.
I was on an ADT holiday (self imposed – not advised to by the doc(s)) since my last Lupron injection was in July of 2018. It took over a year to get past the undetectable state that I was in.
My 'T' has recovered, although it is on the low side of normal (about 35% of the scale range). My PSA stayed LO until my 'T' came back, so everything was in sync.
I had a very tough time with Lupron and the SEs drove me crazy – so that explains the decision making.
My original DX (May 2017) – G9 / T3b / PSA 300+ / node positive (local spread) / NO distant metastasis / CTCs found via 3rd party testing – (circulating tumor cells).
I'm 68, in reasonable health (other than the obvious) and have thought out what might be next – but I'd like to consult the forum to see if anyone else has had a similar experience.
The Plan ?
Monotherapy – Casodex on a daily basis for an unknown term – but a positive response must occur to continue that strategy
I know that this is ADT, but it would be a more tolerable one for me. (at least that's what I've read). The alternative is likely much worse - some form of chemo or systemic treatment can't be too far away if I don't respond ?
REQUEST scans – possibly looking at something more sensitive than the 2 digit common stuff – my PSA is now at 3.2, so I've read that this is a logical step to take – PSMA/PET ? Maybe another bone scan ?
Is it too early in the game to try something else ? A very quick discussion with my MO indicated that we could at least discuss these options (casodex / scans / more radiation) -n that was a phone consult of course - for obvious reasons.
I suspect that the increased activity (best guess) is caused by more cancerous lymph nodes – I had some prior (Primary) radiation treatment – a limited dose – so there's room for more in the area. My prostate was radiated to the MAX, so I don't know what will happen thre.
Anyways, it looks like my PCa is very aggressive and a meeting with my MO is due in 4 weeks.
I'm getting ready with some questions – hopefully, some good ones.
Your comments would be appreciated
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RonnyBaby
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As you said, the increase in PSA was not unexpected as your T level returned.
Because you find ADT so intolerable, another way you can take this is exactly the opposite direction. That is, go for maximum androgen annihilation in the hope that it will reduce your cancer load so much that you get a longer vacation next time. That is the strategy being tried in the following clinical trial - you can perhaps join it:
I have a question what are u all talking about when u say ADT vacation? You can ask to stop getting the shots? Because my dad has been on lupron injection or eliguard every 3 months and he doesn’t like the side effects at all and the pain of the injection so I’m wondering about this “vacation” I keep reading about from other men on this forum one can stop the injections and then go back? Thank you
Hey Olivia, Dad is like me and many of is in hating adt . I’ve been on it five years now with no breaks. The fear is that the pc will rage back without adt . I will be waiting to hear what his doctor says? Take care
Casodex is "hormonal therapy" but not really ADT, since you get to keep your T (and your estrogen!) and just have the AR activity blocked.
My experience so far (a few months in) is minimal side effects. No real mood disorders or fatigue, perhaps a bit lower in energy/motivation. High T but low libido, yet still 100% functional if and when the need arises, so to speak.
I was very fearful of having the type of depressive response to Lupron that you had, so I'm going this route for starters. Another option would be high-dose transdermal estrogen, but I doubt you will find a doc willing to go that route. (Have you had any contact with fellow Canadian, Richard Wassersug, on this forum?)
A PSMA PET/CT has a good detection rate with a PSA over 2.. This study could tell where the cancer is mainly located and if there are metastases expressing PSMA. If there were PSMA positive metastases and if you could afford it, you could consider Lu 177 PSMA treatment abroad (Europe or Australia) in a place that accept castration sensitive patients. It is a systemic treatment which could control the cancer for a while even when it is not the SOC.
If there are few metastases and they could be irradiated. You could discuss if it is indicated to do direct therapy and see if you can postpone systemic therapies for a while.
Thanks for the response. I had no idea that the PSMA PET/CT was a 'study''. I've got some homework to do. I want to remain optimistic that we will find the source(s) of rising PSA and deal with them effectively.
Currently Nalakrats is away from the site (until Oct), but look for his posts concerning the use of a Vantas implant (Histrelin) as an alternative form of ADT. He uses it, as do I, but it seems very few (almost none) docs or patients use it. Tall_Allen may comment about its utility for you, or anybody. Nalakrats contends many fewer side effects with Vantas. I am only 3 months into its use, so not sure about side effects, but so far, only hot flashes.
I'm a fan of the man - so I do look into the ways and means that he manages his own disease. He is a source of knowledge that I have taken into consideration. I have used some of the supplements he's mentioned. I believe they have helped me manage better ....
Tall Allen and Nalakrats are two of my favorite sources. I am a 78 year old Gleason 8, diagnosed in 2012. My cancer had spread to the pelvic bone and therefore, I was considered inoperable and not a candidate for radiation. I was put on hormone therapy immediately. I am still on Lupron after 8 years. I began with its twin Eligard and Casodex. When we moved to FL from AZ my new urologist dropped the Casodex and went to Lupron. We have continued with Lupron and since 2016 my PSA has bounced between 0.06 and 0.39. No clear indications yet of resistance. None of the SEs mattered given the goal.
Now you won't care for my recommendation. If I were you I would of course be on Lupron but that appears unacceptable to you, so here goes, given that you want to kneecap the little cancer cells: the formula is Docetaxel, then Zytiga, then Jevtana followed by Xtandi. It won't be a happy journey given the side effects.
I take multiple supplements but the one that really matters is IP6. Dr. AKM Shamsuddin (see my previous posts on him) has conducted research for 25+ years at the University of Maryland Medical School, Dept. of Pathology. See his textbook on IP6 at Amazon and you will come to understand how it works. My previous posts will describe my AZ urologist's reaction when I first started taking it. Private message me with any personal issues on how to take it effectively..
I appreciate the feedback. It's not easy looking into a crystal ball - predictions and trends etc. aren't an easy task to nail down. PCa is not a black and white thing.
I'm not metastatic (yet) as far as I know. We haven't tested for that - my PSA numbers were low for a fairly lengthy period of time and only in the last 9 months has it been above '0'.
I responded well to radiation and ADT, going from over 300 to undetectable in a period of about 1 year, then staying there for about 1 1/2 yrs.
I suspect that I might be able to achieve a low PSA trend again, using ADT, for as long as it works. Unfortunately, I have developed such a negative attitude from my experience with Lupron, I am reluctant to go there again.
I might have taken Apalutamide for about 1 year - I quit a clinical trial which included it in a double blind study. I thought that maybe quitting the 'Apa' woould relieve my side effects. When that failed to happen, I figured it must be the Lupron that was the culprit. It took at least a full year to finally withdraw from the Lupron. Once I was back to normal, my world got considerably better. On most days, I feel good - my strength is back along with some muscles. I golf at least 3 times a week.
Beyond that, I will probably be looking at the 'metastatic' types once that staging becomes reality. My PCa seems very aggressive / rapid rate of change is not a good sign.
About IP6 - a naturopath told me about that (I took it for a few months with no side effects).
I quit IP6 (and some other supplements) because I didn't feel like I was being guided adequately by this 'doctor'. Money seemed (what she could sell me?) to be the objective. It is possible that these supplements did work, but which ones made the difference, when you are taking about 4 or 5 of them ? It's unresolved in my books ...
Ultimately your side effects are the consequence of low, suppressed testosterone.
You don’t really need a naturopath to take IP6. I have never had one. My previous posts outline my regimen. You would be much better off if you quickly read Dr. Shamsuddin’s book at Amazon Which came out in 2011 “IP6 and Inositol”. Simply skip the sections that are too technical given your background. Notice he praises Dr. Agarwal at the university of Colorado school of health sciences-Denver. He has done extensive research on prostate cancer and IP6.Get comfortable with pubmed.com And the research abstracts that they post. Dr. Agarwal has his studies listed there.
I took a closer look at your previous posts and did an inventory of some of the supplements that I tried. I want to mention that you've been the source of some relevant content based on what I read in your profile. Thanks for that.
I also went to Amazon and found what you are referring to. I plan to include IP6 on my revised supplement list. Over time, I've changed what types of supplements I took for all kinds of reasons.
Now, I'm focused on a few that are more closely aligned with a prostate patient in mind. Like a lot of things in life, it is an adjustment that will hopefully make things easier to manage. My 'management' to date hasn't really been something to brag about.
I also have had a recent consultation about how my approach to managing the disease needs to be refined and focused on things that should make a positive difference. More exercise, managing my depression, managing my insomnia and learning more about some of the drugs that could help me manage over the long term are a few things that are now front and center.
Take the casodex, no vacations. Possible chemotherapy and stay on the casodex. After chemotherapy stay on the casodex and milk it for every day you can get out of it. There are more potent drugs you can switch to after you have gotten all you can get out of casodex .
I'm asking for that as my next step and think that it might be a possibility. At least the MO didn't shut the door when I mentioned it. I've read that some men get years out this form of ADT - that would be nice if it worked out that way for me .....
I think more radiation might also be part of the plan, but it's too early to know what's next - I haven't had these elevated PSA numbers for months and we haven't crossed a threshold, in terms of a targeted number.
Do we (re)start treatment now or when I reach a limit, like 4.0 or is it 10.0 ?
That's what I'm not sure about (yet), but my next app't is about 1 month away and my numbers will be higher by then (3.2 + (x)) = ?
If you have had radiation to the prostate you can't have any more. You can get salvage radiation to areas not previously radiated. Do you suspect that is the case.?
I read somewhere within this forum that once you have 'maxed out' on radiation therapy (to the prostate) you can in fact have surgery to remove it and there MIGHT be room for a bit more 'salvage type' radiation.
Not every surgeon could do the operation, but, in fact, there are some 'experts' who can manage it.
I have read some contradictory stuff - so what is the truth ?
I suspect I'll be finding out soon.
My best guess is the recent activity originates in the lymph nodes - I was node positive at DX, got SOME treatment there and the MO briefly commented that this might be the logical conclusion to why I'm in the BCR mode in the first place.
I hear you. ADT made me miserable beyond description, and it almost as hard on my wife, living with a tearful angry blob, constantly talking about how death would be such a nice event.
An alternative to TallAllen's suggestion is high-dose transdermal estradiol, which is used in the UK. Its SE profile is reported to be much more tolerable.
From what we hear your wife misses a tearful angry blob, constantly talking about how death would be such a nice event. She says you're boring now.....
My mo is afraid to vacation me from adt ? Sorry about this for you . At least you tried a break and found out , not now. Maybe getting back on adt will push it down again ? I too have had a lovely time on adt.. . Over five years now . My prostate also had max imrt .. Good luck getting undetectable once again . Take care
Thanks for the thoughts - at least I got something sorted out in my head - 'what is the state of my cancer?'. By vacationing and allowing for the withdrawal, I would know whether the treatment(s) worked and I would not have been taking 'something for nothing'.
The drug(s) I will take in the future are needed because I still have some PCa activity.
I have some peace in knowing that I responded well to treatment the first time, it took awhile for the numbers to climb and I was able to recover my 'T', muscle mass and more. From Dx (May 17) to today, my PSA is around 3.5 and I'm doing OK.
That's about 3 1/2 years inthe bigger picture.
It could be much worse - now it's the waiting game - waiting for future test results, higher or lower PSA numbers while the clock ticks and the suspense that goes with it.
I'm fortunate enough to be part of this group who offer support knowing full well how hard that can be at times. Thank God there are some good stories and hope for most of us.
I think ADT + Casodex is a good option, it worked for me for more than 10 years. Some people is still androgen sensitive after 18 years. Casodex works for those with androgen sensitive.
Reading some of the 'archives' gives people a chance to read up on some topics that aren't current right now, but still have relevance for those that are searching for information about things that are still important to others or following trends and progress that others are experiencing.
TODAY, my PSA is closer to '6' - an estimate based on past readings and the time elapsed since my last reading (about 6 weeks ago).
I've had a series of recent scans after a BCR - bone, CT and MRI and nothing was found.
Up next is a PSMA/PET can - which could take months while I wait in the line.
But there is no reason to panic - I feel good and the progression could be a lot worse.
I was expecting a lot worse outcome just a few months ago when my PSA 'took off' - but the doubling time is greater than 3 months - so there is plenty of time to put the brakes on in due time.
After this last time dumped on me I had to see where you are that makes you think your so smart. I want to share something. I have an agressive form of pca determined by genetic sipfer at ucsf. which started doubling immediately after surgery with tumors the size of golf balls which I have negotiated down from 199 to as low as 4.7 without chemo or radation. using diet exercise, attitude, meditation and supplements, including mistletoe and cbds. my psa doubled from 20 to forty in a month...and you stressing out over a 6 month doubling from 1.5 to 3. still within normal limits. really and you are giving me shit I been doing these things for six years and 15 surgeries while you've had it easy...dude. I appologize If you think its ok for you to give me shit., I must have given you the wrong impression because its not.
You have no idea what how fucked up this is and can get. You have been lucky so far. You really pisses me off I came here for know be jerked around by neophytes.
I'm done and don't ever give me shit again... about anything I do.
and please turn me in I would be happy to disuss this with them.
If you would like to politely share your wealth of knowledge and positively I'd love to but not that way.
I don't think I'm so smart - I TRY to share some experiences and results and I get a lot of positive feedback and honest discussions about several relevant topics.
Sometimes I am / might be WRONG and hope to keep an open mind and try to learn something new or correct something I've put out there is useful or informative.
This is a changing landscape and there aren't that many black and whites. There's a lot of gray in SOME areas.
When you chose to insult - you become someone I would no longer consider as someone who has anything to offer other than rants and cheap shots ....
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