.Hi..So my husband was diagnosed with Prostate Cancer via a routine check during a GPs appointment...It was 2020,and we went into lockdown for Covid not long after..He elected to have a Prostatectomy, but unfortunately his PSA never went to zero...Levels remained low, and he had a PET scan, which revealed very small mets to lower rib and pelvic bone. Radiotherapy was done(I think it was SABR.. A scan 6months ago revealed a small lesion near the bowel/rectal area..and too close to the previous Radiotherapy site to repeat.Appt on Monday revealed PSA went from •7 to 1•3 , in 3months..so still low but rising...We have appt in Sep,feel sure Hormone therapy is the only option,and reading side effects terrify me. Can anyone give me any hope/advice/positivity...( husband is 65 ,well ,and symptom free.) I'm struggling...
Thankyou. debbiejayn.
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debbiejayn
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I’ve been on ADT (hormone therapy) off and on for almost 7 years. The primary side effects have been relatively minor hot flashes and fatigue, and weight gain. Exercise certainly helps. It’s definitely annoying, but not terrible. It is certainly better than the potential alternative.
Thankyou so much for your input.. I've read a lot about mood swings and depression / cognitive problems which worries me..He's a very intelligent man, and he wouldn't cope with losing the essence of who he is, if you know what I mean...Intimacy had to change as was a casualty of the Op...but we have a very happy marriage and hope to continue. Its good to hear that you haven't had all of the side effects..the list seems endless..! We have one of the most well respected Oncologists in the Uk, so hoping for good things..Many thanks again.. I'm feeling there's hope.D.x
You have provided a powerful insight into the situation with you and your husband. I will say that the cognitive issue is not cut and dried. I've been tested so far and have passed with flying colors. This is after 2 years. That said I am experiencing fatigue. But I did go back to work part-time. And I'm 68.
There's also the whole debate about what can be done for PCa-associated brain fog, which is likely a side-effect casualty of ADT. By stopping testosterone, ADT drives to zero the little bit of estrogen that a man needs. (Estrogen is manufactured in the body from testosterone.)
The debate is on the question of transdermal low-dose estradiol add-back. This may be something worth looking into.
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WARNING NOTE, JUNE 30TH, 2024 - I've been doing a lot of reading about estradiol. My latest position is that there are risks and I am not ready to try low dose transdermal estradiol yet. It's a very complex subject and there does seem to be the risk of stimulating progression. This despite clear benefits.
Thankyou.that makes sense...He is actually a patient at a major Centre of Excellence for Oncology in UK...I will mention it at the next appointment. ( I do all the research) I've also spoken with a nurse from Prostate helpline, and the way of thinking is that the longer a man can go with radiotherapy lowering PSA, the longer into the future the drug therapy will be available. Everywhere seems to differ..Thankyou so much. D.
Hopefully Tall_Allen will be able to respond to your note here. But I have learned is that knowledge of the latest clinical trial results and science concerning prostate cancer is not evenly distributed throughout the healthcare system.
"Everyone seems to differ" to me means that you are meeting some people who are criminally out of date and other people who are up to date.
Certainly there are disagreements or reasonable choices between different kinds of therapies. But there are also bad ideas. And honestly it's hard to distinguish between them.
Your husband has metastasis. You are no longer in Kansas.
I've been on ADT (Eligard/Erleada) since Jul 2023, and I am still battling the SEs. 1. Brain fog, losing track of thoughts mid-sentence, weight gain. 2. Hot flashes 3. Overall weakness, total body pain, and weight gain. Black Cohosh minimized hot flashes, and inflammation minimized by using a turmeric supplement. Weight gain minimized by dumbbell routine and walking (not 10K/day). But the biggest for me was the cognitive issues.
Just had my 60th bday this month. the worst of the SE for me was the overall pain, and the brain misfiring (not literally). At one point, the pain was being mitigated using oxy (I tapered off that fairly quickly.) I would rather muscle through the pain than take narcotics. However, I recently added Ritalin. While I am not promoting anything mentioned here, the Ritalin (5mg) has helped tremendously. I am finishing my degree in accounting and during the last course, my brain was drifting. Again, I am not promoting drug usage, but QOL is important in fighting this disease. BTW, I am Gleason 9, mets to lymph system. In other words, living my best life before the inevitable.
Along with the above, I take a slew of vitamins/supplements and Fenben/Ivermectin.
Thank you so much for your input and your prayers..It is very helpful to hear about others experiences I will look at the vitamins ,and exercise regime ..I hope you continue yo enjoy life..Thanks again D.
Good information Mr. T. I also take Ritalin, maybe two or three a day, also known as methylphenidate. And typically three cups of coffee a day and two cups of green tea (apparently green tea also has caffeine). All this combined with exercise and I feel OK.
I've been on Lupron non-stop for more than 10 years. I second what fireandice123 wrote. I have hot flashes and fatigue but managed to avoid weight gain.
Thankyou so much for your reply..You read the side effects and and its terrifying. I just want us to have a decent quality of life.Its good hear from people who are coping. I hope you continue to go well.D.
You have a medical oncologist yes? What's with the delay? Time is of the essence. (Other replies here were much more frank, even harsh 🙄)
I was 66 at first diagnosis with high volume metastasis. Including to my spine. I'm fortunate to be on triplet therapy which is chemo plus ADT plus a fancy hormone. Triplet therapy is not yet standard of care in many places. But doublet therapy is. I'm 68 and recently went back to work part-time. I have a lot of fatigue. There are worse things than fatigue.
Right now for you this will be information overload. But your husband seems to be metastatic. Hormones are not so bad. I don't even have hot flashes.
And as for the complainers about ED, that's behind me now. There's no sense pining for the past. Because I'd rather live for my children and grandchildren now. You have a stark choice: between drug therapy and "not needing to make any more choices".
When you have metastasis they are likely in many places in the body. Some even undetectable as of yet. And you can't get them home now with radiation or surgery. This is a system-wide question now. So now it's a question of drugs. The only way to get to them is drugs.
And don't wait until September. And maybe talk to somebody else than the doctors who you already talked to, who performed surgery and radiation but did not insist on parallel drug therapies at the same time.
And if it helps I started off with Stage 4B metastatic high volume. Severe narrowing of my spinal canal and developing gate problems. Fortunately no long bones or organs involved. And as I mentioned I'm doing pretty well right now. The latest research on doublet triplet therapy is very encouraging.
Don't pay attention to the noise and don't pay attention to anecdotal evidence and self-appointed experts.
Read everything on this site from Tall_Allen. And also his own websites.
And the site is great all about ADT: lifeonadt.com/. I have heard Richard Wassersug speak a few times.
Thankyou so much for your reply...I do understand...My husbands Oncologist is one of the leading ones in the UK....The thinking here,is that the longer the psa can be kept low with surgery and radiotherapy, the older the patient will be when starting Hormone therapy, and consequently when it stops working..We've had 4 symptom free years, with a very low PSA and regular PET scans, but I do realise that things are about to change. I will look at all the people you mentioned...I've taken comfort from those of you who still seem to be coping well.!.. Thankyou for your good wishes, and I hope you continue to do well.D.
it’s clear he needs to start ADT, and soon. Be not afraid! There are more options than ever within the combinations, and thriving is more than possible. The one thing he will need to do is exercise, both cardiovascular and weight bearing. It is absolutely essential, the ultimate difference maker when it comes to every one of those terrible side effects you’ve heard about.
Doctors do not emphasize exercise enough. Many patients won’t either, since unfortunately most don’t do much of it. Fatigue, hot flashes, fat gain snd more can make life very unpleasant on these drugs without intervention, but that intervention requires only a very reasonable amount of dedicated, consistent effort. Never mind that when we are older we should be doing it anyway, with or without disease.
Again, severity of ADT side effects are not ‘luck of the draw’. How well he does on it is essentially within his control. Great luck to you!
Hi.Thankyou...I think its good to be able to take some control..I have suggested exercise but no success yet!...I will look at what's available locally..I can see the importance of being fit before you start taking the tablets.Thankyou so much.D
The UK Patch Trial has been going on for 10 years and finally is set to come out September using transdermal estrogen patches to relieve symptoms of Adt drugs when combined and it's going to be big news!!!. My husband diagnosed in 2012 went from Adt, Radiation, had 7 years with a very slow rising psa until 2 1/2 yrs ago started back on Adt became NMCR, now on Xtandi and so decided to get off Adt by having an Orchiectomy, he is older than your husband and it's not for everyone but we added E2 patches to add back the aromatized estrogen taken with having no testosterone, He feels so much better and is relieved that all the nasty side effects that have already taken a toll on his bones have subsided apart from a bit of fatigue caused from Xtandi. There are men on this site that are doing E2 monotherapy succesfully, l am not sure how that works with mets though as my husband is lucky to have only had his pelvic lymph nodes invaded and the adt did do it's job on those. Research is vital to educate yourself and have the questions ready for the medical bod's and Oncologists.Personally imo we have to be our own advocates when it comes to our health, fight and persist even when things are overwhelming, you will suceed, mostly keep positive it's what keeps you carrying on and winning.
l am from the UK but have resided in Canada for 30 odd years and I read the shocking news of patients not getting there cancer treatments and appointments for months.
l do hope you will be able to get your husband some good treatment very soon and he will have many years ahead of him.
l admire all the women on this site who fight with and for their partner's, "love is a many slendid thing" hark l hear song coming on lol. Good luck.
Knitting you have a lot of interesting information and experience to share. But what do you think, it's a heck of a lot easier to read if you would add some paragraphs please.
You know, "paragraphs", what I grew up knowing as made with a "carriage return" 😂
Okay back to the good stuff! It's fantastic that someone brings up transdermal estradiol patches. And the Patch study.
But it's really really important to distinguish between low dose transdermal estradiol patches for alleviation of ADT side effects, and high dose transdermal estradiol patches as a full-on ADT replacement.
There's a lot of confusion about this. And they're completely different. And my understanding is the patch study is mostly about ADT replacement.
That said I desperately would like to acquire and use transdermal low-dose estradiol patches for my brain fog. But I'm so disorganized. I need to pull together a kit for whoever doctors are willing to do this with me. BTW, excellent mentioning aromatase! Which of course is the reason that men on ADT and other testosterone suppressing therapies don't have estrogen as well!
Who knew that men needed estrogen! And if you don't have it, you get osteoporosis, and elevated cardiovascular risk, and brain fog!
Suppression of testosterone? Estrogen is just a drive-by shooting as a result.
And it's a surprise to me that doctors don't want to engage with this research. Research which seems pretty good. The absence of an RCT is there of course. But as I keep saying absence of evidence is not evidence of absence.
Estradiol is inexpensive. Maybe that's the clue.
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WARNING NOTE, JUNE 30TH, 2024 - I've been doing a lot of reading about estradiol. My latest position is that there are risks and I am not ready to try low-dose transdermal estradiol yet. It's a very complex subject and there does seem to be the risk of stimulating progression. This despite clear benefits.
As l recall from Debbiejayn's post this is a women desperate for some help and insight on her husband's health situation. l myself have been where she is"SCARED".
"Paragraph"
I wrote her a reply at 1.00am this morning and l really wasn't interested in " the paragraphs," incidentally l do know how they work, thankyou, however the importance was on my support to just get my message across to help.
"Paragraph"
Isn't this what the site is about?
Thank you for correcting me, will try to do better with my paragraphs next time l post.
I think all is fine. Probably no animosity or ill intent was intended by those critiquing your "paragraphs" We here some of us are so caught up in wanting to help we start micro managing. We are for the most part old, out of testosterone, uncomfortable, and grouchy lol. Add to that how texted communication especially can unintentionally come off cold sounding at the least and arrogant at the worst.
I am very thankful to you and so many other women (our OP here of course too debbiejayn) who support the brothers here and that you reached out no matter the paragraphs lol.
Please dont ever be dissuaded (which you didnt thanks).
As you saw Knitting, I really appreciated your mention of the Patch trial. But I also found it mentally taxing to read the super big long paragraph. (This may be in part because I have, like many people here, a bit of brain fog due to ADT.)
Probably people participate on this foreign for different reasons. I learn a lot about metastatic prostate cancer here and that's really important to me.
I also contribute, in part because writing something helps clarify my understanding.
But usually I'm thinking that other people are reading my posts or replies. I have been helped enormously on this forum.
And I'm thinking other people might be helped by my comments. And if I can make it easier for them to read my comment then that's probably worthwhile.
There's an aspect to participating in this form that is about person to person communication. But this is not person to person private communication. This is public communication.
So people can just write long stream of consciousness material. And it might be great.
But it is 100% guaranteed that if a post is not structured in the formated for other people, then the number of people who read it and benefit from it will drop a lot.
I have tried for years to get a doctor to prescribe low dose estradiol patched without success. Not SOC so I am guessing they are afraid of a law suite if something goes wrong.
They are willing to prescribe an expensive bone loss drug which could possibly cause necrosis of the jaw but not low dose estradiol patches which have few side effects but many benefits.
I have used over the counter bio identical estradiol cream that has allowed me to keep my estradiol levels in a range that helps prevent bone loss and lessen hot flushes while on Orgovyx.
Hopefully they will see the light in the future...meanwhile keep smelling the roses.
Bravo being on Orgovyx / Relugolix! (It's not available to me yet here.)
And wow fantastic: "They are willing to prescribe an expensive bone loss drug which could possibly cause necrosis of the jaw."
I never seen this head-to-head comparison before, in the way you have stated it. This should be talked about more often!!
Now apparently there is bioidentical over-the-counter estradiol cream available!!???
Guess what I'm going to be doing now? Can you share more about this?
Like what geography you're in? Does your doctor give you your estrogen blood test or do you have to pay for it yourself? What is it called? What is your regime in terms of how many square inches and how often etc etc?
I love you Exrunner ❤️. Low dose estradiol transdermal cream available OTC!! 🏪
I written lots of notes here in the Forum on the question of low-dose transdermal estradiol.
And I never once figured out I could just go and buy over the counter, retail, as a cream (or a spray or something). Women do it all the time against menopause🧴
Okay no one should just do this just like that because maybe there are risks. And I think I can just go buy it.
But now I'm researching feedback loops. It would be really stupid if doing this resulted in progression and resistance. (See my reply to this note on a highlight concerning risk.)
I'm very excited and optimistic. And cautious.
P. S. - And exercise! Everyone afflicted with metastatic prostate cancer should exercise! Maybe even it will be easier for me to exercise if I get a little bit of estrogen😃
And let's not forget exercises not just because it's good for us but it can actually help fight against cancer.
Great to be loved JITM and hopefully provide some helpful information for others in our situation!
I live in Florida in the USA. I purchase the bio identical cream off of Amazon.
Since learning about Estradiol I have requested and doctors cooperated in getting an Estradiol test when I have labs. Below is an extract from my recent labs.
ESTRADIOL, SERUM
Name Value Units Ref. Range Interpretation Status
ESTRAD 17 pg/mL -<=39 Final
I also periodically pay for the test myself just so I can keep tabs on my PSA and Estradiol.
I am currently using Natural Bioidentical BI-EST 2.5 performance cream. I put 10 pumps on my forearm and rub it in each evening. Since it is difficult get exact amounts each time it was a matter of trial and error to get the estradiol in the acceptable range 12-30 pg/ml .
Estradiol patches I am sure would be more exact delivery method.
I take Orgovyx around 8 P.M. each night. The hot flushes I do experience are generally at night and are mild.
I have exercised just about all my life so making that part of my plan to deal with ADT was not an issue.
I discussed using the Estradiol cream with my Oncologist and he was alright with it.
Thank you so much Exrunner. I appreciate the important details you have shared. This is taking shape as something real. And it's interesting that your oncologist said it was okay.
Side comment: I was exercising a lot, both aerobic and resistance. And I got a 1/3 time job a few months ago. And my exercise program was no more. I'm not sure why. And I'm not saying that estradiol is a magic potion. Life with metastatic prostate cancer is like a walking a tightrope. I find it takes quite a bit of effort to stay on the wire.
"However, although available data are reassuring, the potential for cardiovascular risk and pro-carcinogenic effects on PCa via estrogen receptor signalling must be considered."
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Nicholas Russell is one of the highest profile researchers on the question of transdermal estradiol.
This comment from the article highlights the concern about the risks of low-dose transdermal estradiol for the alleviation of serious ADT side effects experienced by men with metastatic prostate cancer. The article is from 2017.
Thankyou so much...I definately do all the researching and making appointments. We started off with Private Health during covid lockdown.My husband had a shock diagnosis found by accident.It was hoped that a Prostatectomy would be enough(we paid!), but PSA never went down to zero.. The Oncologist we saw,who is the lead in a Centre of Excellence and teaching hospital now sees us at the NHS hospital..Thanx to his strategy of monitoring and treating with radiotherapy where possible, we have had four years, symptom and drug free, but realise that as PSA is rising ADT will be the next thing. I will read up on all you said..Thank you so much for your input..I wish you all the best too.D.
Just for the record, and it's water under the bridge now, and this is mostly for anybody else reading this - from my terrible diagnosis in 2022, of Stage 4B metastatic PCa with mets to the spine, and a referral to palliative care, I have only had drug therapy since then.
I never had surgery or radiation. Sometimes it's just too late.
But then on the other hand I'm doing pretty good and have not had any debilitating sequelae from surgery or radiation. Such a strange blessing. And for now palliative care doesn't want to see me.
I have had 3 bouts of ADT. Lupron each one brought me to plastic surgery for considerably large breast enlargement I make a terrible woman. It was like a 3 year metapause I did not react well to this.
my husband has been on hormone therapy for 12 months. No side effects at all except no libido. I believe everyone is different. Was expecting hot flushes but none at all
My answer will be similar to the ones above. I'm 72 and live in Cape Town South Africa. Been on ADT for 18 months ( stage 4 PC), and really dislike the side effects, but the alternative is worse. Hot flashes, fatigue, weight gain, ED, etc. Not sure about mood swings as I live alone, but perhaps my two dogs could answer that. I try to stay active and walk 3 or 4 kms every day. I used to do a lot of hiking and scuba diving, but don't have the energy anymore. I love travelling and did a first time trip to Amsterdam a few months ago. I have booked a trip to London next April. Haven't been there for many years and hope to still be kicking about then. I find it best to not dwell on the problem and just carry on with my life while I can. Good luck to you and your husband.
Hi..Thankyou for your input...My husband doesn't like to dwell on his health, hence I do all the organising and research.. We do walk a lot, but hoping to get him exercising soon.Im sure he won't like the sound effects, but as long as they are tolerable and we have a quality of life as you seem to.Thanks again.I wish you well.D.x
"... feel sure Hormone therapy is the only option,and reading side effects terrify me. Can anyone give me any hope/advice/positivity...( husband is 65 ,well ,and symptom free.)"
I was 78 when diagnosed and treated with radiation. I was told hormone therapy was unpleasant and optional for a person my age, so I declined it. I did not begin it until I was 81 when metastasis was found in nodes. I have now been on oral Ogovyx and Abiraterone for 6 months with negligible side effects. I continue to feel well and symptom free.
I feel that not starting hormone therapy immediately after treatment allowed my cancer to progress to Stage IV, and was a deadly mistake.
Hi. I understand what you are saying. My husband had only 2 tiny Mets when he had his recurrence,and it was felt that radiotherapy could do the trick.,and kept levels v low for four years..He's only 65,and will probably be taking ADT for a long time, and continuing to be well. I think its felt that the later you take ADT, the older you will be when it stops working...I hope he feels as well as you do. Many thanks.D.
I was on abiraterone and ADT for 2 years. I lost all interest in sex but but it did not change my love for my wife. I am a big exerciser. Between weight lifting, pickelball, cycling, and long walks I did not have many side effects. I did notice that my muscles lacked endurance which I attributed to the mitochondrial defect. This made it hard to stay with the faster biking groups. Got flashes were minimal . Never had fatigue. Guessing I will be back on it soon and I am not dreading it.
You seem to be like I was while on Lupron. Maybe you can try switching to Orgovyx? While no picnic, I find that it is not as detrimental as Lupron was for me. I forget a little less, the fog is less. The main downside aside of fatigue, which I find less pronounced than on Lupron, is the insomnia.
Thanks for the suggestion. I will definitely look into this. I'm also starting to wonder if some of the mental fogginess is coming from taking Ambien CR every night to avoid insomnia rather than from the Lupron itself. The other side effects (ED, etc.) are definitely Lupron but I do see cognitive issues listed as a side effect of Ambien use and I've been taking it daily for several months now.
Have you tried melatonin? I take regular and time release. I stay away from Ambien. I've heard about some weird things people do when on that. I take lorazepam for occasional insomnia. Insomnia isn't a serious problem for me. I was diagnosed with obstructive sleep apnea and now use a CPAP machine. I believe that that is very helpful and especially for someone like me with a history of atrial fibrillation. You might consider getting sleep tested for apnea if you haven't already.
Melatonin doesn't seem to do squat for me. I know what you're talking about re Ambien. I took it years ago and would wake up to find entire packages of empty ice cream cartons and cookie boxes next to the bed with no memory of eating them. My husband said he once found me sitting naked on our front porch. Again, no memory (and thankfully no one called the police). Stopped taking it then and there.
That being said, I found Orgovyx to be highly superior to Lupron. Not sure if all insurance covers it, but it has far fewer side effects. Right now I am taking a combo of Nubeqa and Orgovyx.
I am glad to hear this. I'm switching from Lupron to Orgovyx due to too many side effects from Lupron. Some people have told me that I shouldn't bother because the side effects are the same but it seems that, if I take Orgovyx at the same time each day, the dosage in my bloodstream will be consistent whereas with Lupron it seems like more of a crap shoot where I feel OK the first day or two after a shot, then crappy for three weeks, then OK for a week, then another shot. Also, with Orgovyx, won't have to deal with the terrible hip pain from the shots.
I understand your concerns. I've been on anti-testosterone treatments of variuos types for 9 years. Lupron, Xtandi, abiraterone, bicalutamide.. Also multiple courses of radiation. All were bearable except the Xtandi (enzalutamide). Look up the side effects of any drug you can think of. If you didn't know better you'd think any of them would be unbearable. But if the drug affected even a small number of people in a negative way it is listed as a side effect. The anti-androgen treatment is not fun for sure but it is bearable. Good diet, exercise help. I force myself to exercise because I don't want to, I don't feel like it, I'd rather just stay in bed. But I know it helps. I feel much better when I get out and do things.
Thankyou!!..You're right about side effects of drugs...I'm on Thyroid Meds an the list of sie effects is awful...My husband doesn't like exercise either...Walking fine ,but not organised exercise. Would rather read a book...I will make sure he joins a Gym. So many people on here have said it helps.. Thank you for your input.It makes sense.D.
PUG your pain is heart-wrenching. But when you start posting in public your own experience and use the word suicide and say things like "barbaric treatment" and refer to "the medical establishment", your comment is like a stone dropped in a pond which ripples outward.
I don't think it's fair to discourage people as such. To claim one's own experience - and probably everyone on this forum, and the former members who are sadly not with us, has had a heck of an experience in some way or another - to claim that experience as a universal principle is not fair.
Many people have had better experiences with ADT, and thank heaven.
I'm writing this note for people who read your note and may be discouraged. And my message is "don't be discouraged on the basis of this one note" - even as our heart goes out to the author!! This note is not evidence of anything other than one person's unfortunate and heart-rending experience.
And for the record, and based on reports like yours PUG, I myself resisted the temptations to go to Lupron "for the convenience". I stayed on the 28 day Firmagon. I don't have depression or hot flashes. Someone else mentioned Relugolix a.k.a. Orgovyx. Both these are GnRH antagonists, versus Lupron which is a GnRH agonist. I'm beginning to think I would prefer the oral Relugolix.
I'm stage IV PC mets ...I'm here to gain knowledge..You must have deleted your testimony...I cannot find it and I WISH I COULD.!!! I would like to know everything from anyone and thanks buts NO THANKS to Johninthemiddle for belittling PUG so much that he felt demoralized into deleting his feelings from the post. In my opinion...JITM should keep in adequate comments towards what people think or feel...to himself. I'm dying..I refused so far for treatment..I am getting worse..hurt constantly..lost weight tremendously. ..fatigue onsets....pee 6 to 10 times nightly..ETC ETC ETC..If you want to give advise do it towards treatment and NOT ONES THOUGHTS!! AND PUG.. we All are in the same sinking boat..don't give up hope..if you need anything JUST SAY JESUS!!! I'm now considering Adt but not quite there yet....how long is the needle and where do they stick it into.I saw the episode of deadliest catch where they stuck a 4 to 6 inch needle into his stomach area. Are they trying to hit the prostate? And I don't believe in paragraphs either..I'm not writing a novel..lol
sorry, I typed a reply to you but it went to the author. It has a pic of my Psa. Lupron doesn’t go into the stomach, it goes into a muscle. The needle is probably 1.5 inches plus or minus a little. Dude, I am a coward when it comes to needles no have no trouble especially in the butt.
My eligard (ADT) injection was into the fatty tissue associated with my pot belly. Not a long or thick needle. Don't let a fear of needles paralyze you. Your bio is sparse. Why are you refusing treatment? Not wanting to be disrespectful but thinking or uttering the word JESUS doesn't qualify as treatment. You can pray for guidance but then get going and do something. Get treated. That's what we are about here on this site. Learning about the disease, learning about treatment options, and then pursuing that option whether it is curative or just palliative. Good luck.
AFTER MUCH RESEARCH, I INSISTED ON ORGOVYX . And true to the research, my side effects were easily tolerated. Initially some fatigue, but over time you get used to it as your new normal. Libido was non-existent. The long-term cumulative effects seemed to wear at me. Brain fog became noticeable. Due to a patient assistance administrative error I stopped the treatment after 14 months. I could not believe how quickly I started to feel like my old self. T jumped to 297 after only 4 weeks off. Libido came raging back (due to me being a little Italian from Northern New Jersey ?) 😉 Now, six months off the stuff, my PSA remains <0.05 and I am loving life once again.
The intermittent ADT model is very attractive. None of my doctors are interested. My understanding is that the evolutionary math behind the thing is very tricky. I suppose it's simpler to just do the intermittent thing.
You're basically tackling the big flaw in metastatic prostate cancer therapy, including triplet therapy and doublet therapy. Which is it resistance shows up after a while. All that selection pressure and eventually some cells figures out a way around all the therapies. Because the bastards want to live.
The latest statistics are nice and that for some people on doublet therapy resistance hasn't shown up yet!
But I don't have the confidence yet to push intermittent anything including not only intermittent but intermittent therapy.
The science is nice but I'm not sure about the reality. A big success for you.
(Do you have any resources that would be helpful?)
Thankyou so much. Sounds like you still have a good quality of life(and a sense of humour!) As long as we can still have that too...I will look at Orgovyx...(I do all the research) Thankyou again.I hope you continue to do well.D.
You may want to search the Internet for publications by R. Langley from the UK, and by N. Russell from Australia on the use of transdermal estradiol (TDE) for treating prostate cancer. There are two different options: (1) low-dose "add-back" for reducing (or eliminating) the bad side effects of Lupron ADT (visible and invisible), or (2) high-dose TDE for REPLACING Lupron ADT with Estrogen ADT (E-ADT). This 2nd option is the focus of the PATCH trials in the UK that started in 2007 (17 years ago). The Phase-III trial currently underway enrolled about 1000 men at 52 centers in the UK, and is doing a head-to-head comparison of Lupron ADT to Estrogen ADT. The 10-yr survival results will be published sometime this Fall.
I'm currently doing 4 concurrent therapies to hit my PCa hard: (1) Radiation Therapy (SBRT), (2) Orgovyx ADT, (3) High-dose E-ADT, and (4) Dutasteride. I also have hypogonadism. So, I've stopped taking supplemental testosterone. I expect my T and PSA will drop to very low levels from all of these treatments, with minimal side effects.
I also recently had low back fusion surgery (they fused L1-2-3-4-5), and I'm also doing TDE therapy to help the fusion bone graft to solidify well (it takes ~1 year to completely fuse solid).
If you send me an email request to janebob99@lobo.net, I will send you the very best papers about transdermal estrogen therapy for PCa.
Estradiol has been used successfully for over 80 years to treat prostate cancer. It's not a new "drug" (it's actually an all-natural hormone made from testosterone).
Just for anyone coming across this for the first time, it's important to distinguish between (1) transdermal low-dose estradiol against debilitating and dangerous side effects of ADT, and (2) transdermal high-dose estradiol for full-on ADT replacement.
Sorry that you have to go through this, but lots of treatments available. My case was similar- never any symptoms, low PSA, prostatectomy failed. He still has options like radiation and advanced hormone therapies, and together it could still be curative or at least keep the beast at bay. I’d focus on finding a top medical team, getting second opinions, and getting informed on all options - this forum is a great start.
All hormone therapies have side effects. The profile of side effects will vary, though, so if one treatment produces one intolerable profile, another may be different. So, if one produces intolerable fatigue another may not. So, you may try different ones to find one that "fits".
Orgovyx (relugolix) seems to be the newest and has the advantage of being VERY fast acting and, being an oral pill, can be halted if necessary (unlike quarterly injections).
I see that the use of TDE (trans-dermal estradiol) has been mentioned (both the low-dose as a supplement and the high-dose as a substitute), so will not go into that. Ask your oncologist about the PATCH study.
Hi Debbiejayn, I'm also from the UK. I was diagnosed with Gleason 9 PC last October, which had taken weeks and weeks through the NHS. Due to the chaos in the local hospital, I went privately to see an oncologist, which was the best decision I have ever made. I was put on ADT (Lupron) last December and had 37 days of radiotherapy. I will need to stay on ADT for 18-24 months.
ADT is much less of a problem if you exercise hard. I go to 4-5 45 min classes per week at a local gym. I get very few side effects from the ADT. What I do get is a 90% reduction in libido and muscle aching as there is no testosterone to repair muscles. I get no hot flushes. Memory seems little affected - I give one hour talks locally and those still go smoothly with no "Biden" moments!
Hey deb, I've been fighting this shit for 22 years...........I would say it definitely is a deal but it's never a done deal, until you're room temperature. So your dear husband will learn to deal with it and so will you. Do not let the shit suck out all of the oxygen or happiness out of your lives. Live!!!
I put off Lupron until I was in debilitating pain and on crutches. I went on a 30 day Casodex regiment and then started monthly injections midway through Casodex. I get the shots in my butt which is better than arm for me. I was on crutches for 8 months because I let fear guide me. I now hunt, fish and live a beautiful life, praise God. I have a few mild hot flashes and zero libido but I am still going strong at almost 74 years and keeping up with my “honey do list.” God Bless
Thankyou so much for your reply...Your positivity gives me hope!...I hope you continue to do well, and that my husband does as well on the meds as you have..Many thanks.D.
Next month I will hit the 2 year mark on ADT and stop. Hot flashes were the worst part of it but I now have them under control. I'm not sure it's been mentioned yet on this thread but EXERCISE is the key. Cardio as well as weight lifting. I'm really amazed at how well I tolerated ADT, a bit of brain fog and some fatigue. In the last 2 years, my wife and I took 3 vacations of 1 month each traveling around the world, it's something we've always done and I wasn't going let something let Stage 4 PCa get in the way!
I don't love going to the gym but Exercise is really the game changer to get through this.
Thankyou...Exercise seems to be the common theme in replies....So many people seem to say it helps them cope. Like you, my husband isn't a big fan, but sounds like it's been very beneficial..I will definitely make sure he loses weight and gets fitter..We do a lot of walking but he needs to join a Gym!..Thanx again.D.
I think some men might get self conscious about body image and think everyone going to the gym are super fit and will be looking at them. IMO it’s the opposite, no one really cares and when I do notice a big guy, I have nothing but respect for them for being there!
I know what you mean..My husband is a bit of an intellectual...Rather read a good book than go jogging!..but needs must. Health comes first..Thanx again.D.
i would inquire about adding erleada or another blocker....he's psa doubled in 3mos... get another in 3mos.. then adt the adt/ 2nd tier drugs...it could be just a bump.....and gets stable. .02 is the worriesome pt. for rpt... .jst my oh* evryones got one...good luck...and keep living....
This is a great share Tom! Richard Wassersug is great on the whole question of estradiol, or more generally estrogen, in the context of metastatic prostate cancer. Or just plain prostate cancer not yet metastasized.
I haven't listened to this video yet but apparently they cover both high dose estradiol for full on ADT replacement and low dose estradiol to mitigate ADT side effects.
"The foremost peer expert on the use of estrogen to manage prostate cancer is Richard Wassersug, Ph.D, author of Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones that is now in its 3rd Edition"
Other side effects of ADT? (eligard in my case). Gynecomastia. Tamoxifen or anastrozole can help prevent that. Loss of underarm hair -- no big deal. Penile atrophy/shrinkage. Daily low dose cialis is said to help with that but I didn't receive that advice. Exercise, particularly weight lifting is important to keep bones strong. I also take vit K2 for bone health.
Some questions posed were very interesting, but unfortunately, despite the very lengthy discourses by the doc, finally remained without an answer. I tried to assess whether he didn't have to offer any convincing answer vs deliberately trying to evade answering, but didn't come to any conclusion.
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New Mets, PSA 0.4 
Statin and COX2 inhibitor for MCRPC?
Great news, I can stop taking Lupron
prostate cancer so scared psa level over 100 
I’m frustrated (damned if we do and damned if we don’t question doctors)
