De Novo Gleason 9 plus 16 bone Mets diagnosed August 2022 at age 78. Commenced quarterly goserelin injections and PSA became unmeasurable.
Side effects fatigue plus hot flushes roughly hourly day and night plus increased night urination. GP prescribed antihistamine which we agreed on as 10 mg Cetirizine morning and 10 mg Phenergan evening. These moderated the intensity of flushes and the phenergan aided sleep. I found the night flushes preceded urination and limiting the former improved the latter. I now only get up once a night !
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Leigh2350
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Well they have not had that effect on me. I am a lifetime asthmatic and 76 years ago started on phenergan plus aminophyllin for asthma control. Modern drugs have replaced that combination about 60 years ago. Later in life I have used phenergan to help me sleep during stressful times, dosage 10 to 25 mg. Cognitive decline is part of our aging process.
I'm glad that you're having good results. But I'm going to comment because this is a public forum. And the statement "cognitive decline is part of our aging process" is a kind of fatalism - all four of my grandparents lived to their '80s and '90s and they were all sharp as a tack. I know this doesn't happen to everybody.
1. ANTICHOLINERGIC RISKS - Here is a summary from at Harvard Health newsletter from 2022 about the risk of anticholinergic meds:
I can't comment as to your specific antihistamine meds but readers might benefit from the link.
2. ADT AND HOT FLASHES - My diagnosis was very similar to yours in terms of Gleason score and mets to spine and ribs. You are being treated with a single GnRH agonist as ADT. And you have these awful, even hourly hot flashes. There seems to have been no consideration of switching ADT however. I'm on a different GnRH antagonist as ADT and I never have hot flashes.
3. TREATMENT MINIMALISM - I don't understand your treatment plan - maybe it's because you were 78? I'm curious if you have a medical oncologist? Your treatment seems kind of minimalist? (You haven't mentioned surgery or radiation - I also have not had either and I'm only treated with meds too.)
Other than the hot flashes (which seemed quite debilitating) you seem to have had good results over 2 years and I wish you continued success.
Thanks for your reply. I created my post because I read of numerous sufferers who may want to try a different approach. The use of antidepressants IMO is far worse than antihistamines.
Yes I have an oncologist, who felt my other health issues( hypertension, two MI, and two stents, aortic aneurism ) made me a poor candidate for other treatments.
In NZ, only Goserelin and Bucalutemide are Public Health funded at the start. When Goserelin fails, Aberiterone may be funded.
In answer to your question, I'm on Firmagon ("Degarelix") GnRH antagonist (the ADT). I did Docetaxel chemo six sessions last year. And I'm also on Zytiga ("Abiraterone") as an ARPI (androgen receptor pathway inhibitor). The combination of all three (ADT, ARPI, chemo) make triplet therapy. Triplet therapy is not standard of care in many places yet.
For anyone reading this, your Darolutamide is an androgen receptor antagonist (AR antagonist).
It's interesting to note the sequence of how the different kinds of prostate cancer therapy drugs work.
1. ADT starts at the top suppressing testosterone manufacturer from the pituitary, the primary source. ADT is the foundation of PCa drug therapy, everyone gets it, and it's comparatively inexpensive.
2. An ARPI suppresses testosterone manufacturer everywhere, not only from the pituitary, sort of in the middle. (I believe an ARPI is also known as an ARAT.)
3. An AR antagonist messes with androgen receptors on the surface of prostate cell, including of course cancer cells. That's sort of like at the bottom.
The reason for therapy number two is that ADT only suppresses testosterone manufacturer from the main source. But testosterone is manufactured from precursors elsewhere, such as in the adrenals. So an ARPI makes sure that testosterone manufacturer is suppressed everywhere in the body.
The reason for therapy number three is slightly different - even though there is some testosterone still with ADT, when it gets to the prostate cancer cell we're going to make it impossible for the testosterone to be effective at the cell wall.
You are on program combining numbers one and three. I'm on a program combining numbers one and two. These are the modern PCa therapeutic strategies supported by the big clinical trials such as CHAARTED, ARASENS and STAMPEDE, PEACE-1 and LATITUDE. The cost of these new generation therapies beyond ADT can be comparatively high.
I always thought it would be interesting to combine all three together - and if one had chemo as well, then that would be quadruple therapy. Of course it would be expensive!
You think with all these fantastic therapies that we'd be home free! But prostate cancer cells are smart, evolution is inevitable and some of them end up manufacturing their own testosterone! Or even deciding that they can do their wickedness on their own without permission from visiting testosterone! Bastards.
(Your original question inspired me to document some of this information in one place. For some reason I have found these clarifications helpful.)
Super thanks JB. Whereas I had given up a month ago I'm now again pursuing again transdermal estradiol.
I am concerned though as to how my MO will react. And I also still have genuine concerns about side effects that end up driving progression and resistance.
The argument for estrogen add-back is on the surface pretty straightforward.
But then on deeper reading one finds out about the astonishing complexity of the whole thing and the possibility of weird feedback loops. It seems that these risks are mostly related to the use of high-dose estrogen as a full-on ADT replacement.
One can look to the UK PATCH phase I, II, and III studies that have been going on for 15 years now. The 10-year survival data for high-dose transdermal estradiol ADT vs Lupron ADT will be published in the Fall of 2024. If there were seriously bad side effects of transdermal estradiol therapy, they would have stopped the studies, I'd expect. Interim Phase-I and Phase-II reports list very few bad side effects. Those side effects are: increased risk of gynecomastia, muscle loss, and breast cancer (in men who are positive for BRCA-1/2 genes).
You may want to get your BRCA gene status measured if you're considering high-dose estradiol therapy. You can get a free test from prostatecancerpromise.org.
If you have references that discuss other bad side effects of high-dose estradiol, please send them to me at janebob99@lobo.net.
Thanks Bob. And for sure the PATCH trial so interesting. Again we are mixing up low dose and high dose estrogen patches. Because I'm on triplet therapy and it's doing well I'm not interested at all any switch.
I'm only interested in estradiol patches for low-dose estrogen add-back. It's a completely different situation. Would be an adjunct to my triplet therapy.
Please how is the BRCA test done? Can someone in Nigeria benefit from the free test from prostatecancerpromise.org? Please am interested in the test and use of the estradiol patch. Thanks.
You can order a saliva test kit from prostatecancerpromise.org. It's a free kit, and the testing is free. I believe they evaluate about 30 prostate cancer related genes, including BRCA 1/2.
Estradiol has been used as a low-cost treatment for prostate cancer for over 84 years. Back then, before Lupron was invented in 1980, they used Diethyl Silbesterol (DES), which effectively treated prostate cancer, but suffered from increased rates of blood clots.
The more recent use (since 2000) of transdermal estradiol (patches, gel, pellets, sprays, etc.) applied to the skin skips going through the liver on a first pass, which means that the risk of blood clots is greatly reduced. The best way to get started to convince your GP or PCP to prescribe low-dose estradiol "add-back" to add back the estradiol lost during Lupron ADT. Low-dose estradiol is commonly prescribed to treat hot flashes and osteoporosis for men on Lupron ADT or having had orchiectomy. Its easy to increase the dose once you've started it and are doing well on it.
I am currently taking high-dose estradiol in a gel/creme formulation (1% concentration) made by my local compounding pharmacy. That's the cheapest route, about $25 US per month.
Hi Bob,Many thanks for your response and willingness to offer more explanation if needed. I will visit the website you provided to enable me order for the free test kit and later purchase the low cost estradiol patch. I will revert if I encounter any hitch please. I really appreciate. Many thanks.
I can only speak to my own experience, but I’ve been using estrogen gel as an adt/hotflash remedy for years now. While using I’ve been on everything from SOC to two different trials. Trials are Very scrutinizing and the fact that they don’t allow you on things like statins, supplements and other low risk consumables, but never batted an eyelash at the estrogen use is pretty telling on its own. Take that for what it’s worth. Nonetheless, I have zero risk concern with using estrogen.
With that said, you still have to weigh the risk reward in regards to gynomastia. I decided to do 3 days of radiation 2 years in to combat it taking residence. I work out a lot and care about my physique, so it did bother me, but not as much as the hot flashes. For me, this was the only concerning factor.
At this juncture, I’m on a BAT/ Provenge trial and the hot flashes are nowhere near as bad as they were the first 3 years. I’m currently using one gel a week and veozah daily. Full disclosure, I have no idea why it’s less now and quite frankly, I don’t care. I’m not suffering the way I used to so I’ll stick to what seems to be working: Orgovyx, veozah, estrogen.
Thanks for your fantastic comment NSU. Especially your note about trial scrutiny is very interesting. More motivation to get cracking on access to the gels or patches.
Thank you for the detailed reply, it helps to know these details. I am now receiving Zoladex 3 monthly injection with the Darolutamide 4 / day. So far brain fog only but am axpecting hot flushes & skin rashes. What a joy it is to be old!!!
John, Thanks for your clarity in documenting the rationale behind the different drugs. I found it very helpful as well. I think after a while we get so used to our drug regimen that it's easy to forget what we're trying to accomplish. Nice job.
Maybe it's just me. I've made quite a few posts here about Firmagon aka Degarelix 28 day injections - a GnRH antagonist.
I had shivers in the beginning on the day of the injection, starting about 8 hours after the procedure and lasting in the beginning for 36 hours. I didn't consider that a problem - I kind of slept for most of that 36 hours, just every 28 days. But no hot flashes ever.
And no shivers anymore. And now I just sleep a little bit extra after the injection and I hardly notice anything anymore. Of course in the bigger picture I do have fatigue. But that's standard I guess.
so SOC would be triplet therapy. I understand not using chemo with your other health issues but abiraterone might not greatly add to side effects and they prolong life. I would be very disappointed if it is not covered by your health care program as it is SOC. The cost is under $100 a month. Might be worth the cost depending on your situation.
Interesting plan except I don't see anywhere you can get Abiraterone without insurance for less than $30,000 USD a year. One can cut the cost by 75% by taking a single pill with food instead of four pills on an empty stomach (resulting blood serum levels probably won't be as consistent). Because of the risk of liver issues one has to monitor several markers carefully. Also you'll have to take Prednisone every day; although this will be cheap.
Wow! We can get abiraterone in USA through GoodRx or other discount programs for $100/ month. But that's an exception to the general Canada/USA rule, I assume.
May I ask is that per 250 mg pill? So unless one takes the single pill with food you'd have to do four pills per month for a standard thousand milligram dose? Thanks.
I do not have medical insurance so would need to pay full cost of Abiterone which is about $US 3,000 per month. I will do this when the PC is not controlled by Goserellin.
So that's kind of what I mentioned above at $30,000 a year plus ... And then there are people here who say we can buy it online for $100 a pill or something? Kind of a disconnect.
We can buy for $100 a month here. If I use cash it cost $159 a month. If I use insurance it costs $2000 a month until my co pay is paid off. Makes no sense
Leigh - different world in New Zealand - you don't have a medical oncologist advising you? - if as you are implying you can afford major medical expenses why not make a good plan? (Of course if in fact you were able to buy Abiraterone as per the replies to this thread, even your medical expenses won't be as high as you think they might be.)
Aside from triplet therapy, which adds chemo to the following recipes, have you looked into so-called doublet therapy?
Do ADT and an ARPI or an AR antagonist both at the same time.
The clinical studies are very clear that it is significantly better to beat up the PCa up all at once rather than sequentially as each therapy in turn fails.
I'm only familiar with my own path here and more generally the overall trend; forgive me if I am stating the obvious that is not relevant in your case.
Thanks for your comments. My oncologist retired last year, but it was his view that chemo was unsuitable for me. His advice was to run with goserellin initially and then go to abiterone. The concern is about my various heart conditions which I previously stated plus I missed permanent AF, ejection fraction 45%. My likely survival from all this is only a couple of years, so PC unlikely to get me first. Target is QOL.
A welcome voice from New Zealand! Thankyou! I'm also a kiwi just starting my ADT Journey with Goserilin after targeted radiotherapy, I'm 80 and apparently not a candidate for chemo because of co-morbidity issues! Age is wonderful, I'm still working retail 4 days , I find it helps!
No detectable Mets after scan so apart from radiotherapy and ongoing Goserelin I'm just marking time until my PSA or testosterone radically changes, and then? We only have two oncologists in Dunedin so follow-up is not great, huge waiting lists for public so I've had to go private. I'm beginning to have fatigue issues also after 18 months. But still smiling! Take good care!
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