I have been on three separate intervals of ADT. My second interval of four months seemed successfull as my psa was undetectable after several months. I had cryo salvage surgery while on ADT.. What I didn't realize is ADT is effective long after the four months. So I got a shock when my PSA jumped to 7 after 8 months . I am now in a third interval of ADT that will last 12 months. So I asked my doctor how long the effectiveness will last after the I finish 12 months. He responded that the rule of thumb is ADT taper will last as long as the original 12 month dosage. Which translates to 24 months. I am sharing so one doesn't get to optimistic when your PSA stays undetectable for many months after the duration of the ADT
How long does ADT persist: I have been... - Advanced Prostate...
How long does ADT persist
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Geoff22
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Good info. Thanks Geoff
You should get the testosterone level checked after ADT is stopped. Then you will know when your T is back to normal and this gets your PSA value to rise again. It will always rise, ADT will not cure you. I think your doctor has a very big thumb. It depends on your Gleason score, the PSA doubling time before the start of ADT, existing bone mets etc. Usually each off period is shorter than the one before.
Thanks for your input. Gleason 8 PSA dobling time between 6 - 9 month. Diagnosed in 2011, radiation ....I'm well aware that ADT doesn't kill. I am in the 9 month. This present treatment is much harder than my previous treatments. So I am trying prepare my self on how long it will take and how many of the side efficts will never full recover. i.e strength, memory, cognitive power , hot flashes. I'm not whining. There are alot of other cancer treatments(of any kind) that are much more difficult. Just trying to mange my expectations
IMHO, I believe you need to measure your testosterone. It takes several months for the testosterone to recover after ADT and it is very variable from one person to other. My testosterone never recovered for castration levels after stopping Lupron (it has been 3 years).
Once testosterone recovers at least to 50 or more the dynamics of the evolution of your PSA will let you know if you need to get it down back to castration levels.
I think the best treatment against hot flushes are transdermal patches. They also mitigate the bone loss caused by ADT:
ncbi.nlm.nih.gov/pubmed/106...
"CONCLUSIONS: Transdermal estrogen appears to be a promising, well-tolerated therapy for men with hot flushes after endocrine treatment for prostate cancer."
I know a patient who uses the 0.1 mg patches successfully.
Thanks for the inspiration
What is “APC” I should understand that acronym but it is not familiar. Can you explain please. Maybe I’m missing the meaning smack in front of me.
Advanced prostate cancer
Thanks great. I’ll use it in my MO’s msg’s and documents. Lots of medical acronyms like ADHT , PSMA, PSADT. Thanks.
I'm getting acrimonious at the use of acronyms.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/14/2019 5:09 PM DST
in reply to depotdoug
You will quickly learn it all and then some .. hu is a great source ..
depotdoug in reply to
Now you got me wondering about my specific DX tag. Advanced cancer Metastatic non castrate yet I think.
in reply to depotdoug
You are unique ,a category of one , we are all so different .. can I say that “ I don’t have cancer”, if I’m on adt and the mf’s are just hiding .. ? Not really ... we play the pc game until the end ..
Everybody is different. I stopped ADT this past April. In July my bloodwork showed my T was back up to 75 and my PSA was still undetectable. Going again for another test this week or next.
Curious as to how much or if your fatigue improved. When did the hot flushes improve? Just wrapping up 3 years of Lupron and Casodex. FYI I am not APC.
A lot of the side effects improved or went away entirely very soon after ADT stopped. Lately seems like I get occasional "hot flashes", but can't honestly say for sure that it's a carryover of ADT - could just be my body aging and still recovering overall general health. Even if it is a leftover, it's not as severe or frequent as it was.
Wayne
Wondering how you made out!! Kind of missed this post 11 months ago but you should have experienced things first hand by now!! Alot of my MANY side effects (mostly the andropause related) passed when my T got up to about 100 which took about a year after my last 3mo shot. Normal T is 300-700+/- and while almost two years out, I am apparently stuck @400. I’d say that with my current T, all of the many s/e’s have passed except terrible anxiety attacks and extreme cognitive / executive decline that I have pretty much accepted as permanent at this point!!!
I guess after forgetting to reply months ago, I’m just comparing notes!!
Jc
I was on ADT for the whole of 2014 - following RP and EBRT. During that time my PSA remained <.01.
I stopped ADT in Dec 2014 and remained at <.01 until September 2015 when I rose to .01.
Stayed off until April 2017 by which time my PSA rose to 2.6.
Then went back on but PSA never dropped below .07, and then rose to .86
Started Zytiga in 08/18 and PSA has remained around that level until now but last reading in 08/19 was 1.3 so starting to think Zytiga is losing it’s effectiveness. Next PSA later this week.
So to answer the original question I found ADT continued being fully effective for almost 12 months after stopping and kept things reasonably under control for another 15 months, so I had a good 2 year “holiday” which I really appreciated.
Chas
I did 18 months of Lupron, 6x90 days shots. The last shot was in May 18, August 18 labs had T at <3, October 18 labs had T at 135, February 19 labs had T at 482. The side affects of fatigue and muscle and joint stiffness subsided quickly, the hot flashes took about six months.
I feel great, enjoying the Lupron holiday.
In February my PSA became detectable at .36 but labs every two months have shown:
.24
.05
.12
.06
Next labs are January 2019.
My urologist and I agree do nothing given the low PSA and the sine versus linear progression of the PSAs.
I was really charged hearing your story of fairly rapid testosterone recovery. have about the same timeframe as yours just got first post ADT T reading and jumped from <3 to about 10. Hoping December reading will be OH. I have been taking daily d-Aspartic acid capsules which have some action as a luteinizing hormone agonist. Could you reply with your initial diagnosis and treatment criteria?
Diagnosed in Jan 14, surgery in Mar 14, T2CNoMx, GS 4+4, ECE, margins and seminal vesicles negative. 10% prostate involvement.
PSA <.1 until Sep 15 when it came in at .2, Dec 15 was .3. Did SRT (39 IMRT 70.2 Gya) in March 2016, 90 days after it was .7, 30 days after that 1.0...went to Mayo in Jan 17, C11 Choline scan showed four pelvic lymph nodes and PSA now 3.8.
Started the 18 months of Lupron, did six cycles of taxotere and 25 more radiation treatments (45 Gya)
My clinical data shows aggressive PCa with GS, time to BCR and PSADT and PSAV. So, I treat aggressively and monitor actively.
Throughout treatment I would exercise, keep an eye on my diet, worked and travelled when I was not doing radiation think that help mitigate the SEs.
Kevin
I am assuming by ADT you are taking about Lupron? Have you been on any other drugs, i.e. casodex, Xtandi, Zytiga? What other treatments have you been on?
See my profile. Lupron and then trelstar. Since Feb I’ve been on estradiol patches and avodart . I’ve also been on metformin, Celebrex and rosuvastatin since 2015. I used one estradiol patch for hot flashes starting in 2015. Now I use three .1mg patches changed twice weekly as a form of ADT to reduce T. Much better: no side effects except Gynecomastia. Psa is now undetectable.
Congratulations on undetectable PSA. You have plenty of fallback positions. Symptoms will gradually subside.
I have been on Lupron and Eligard. I haven't noticed any difference. However the first two treatments were only 4 months long . The current one is is for a year (two 6 month shots) I am 9 months in . No other drugs. Dr. says if my December PSA is not detectable I will get a holiday. If it is above 1 I will probably start Xtandi. My daughter is a phamaceutical rep and one of her products is Xtandi. However it is not going to get me a discount
You could order xtandi from India, way cheaper.
Hey guys! Are we not seeing something here? We read of a number of successful "holidays" from ADT but we do not see any stories of serious attempts to "escape" this beast during that holiday! If you have a period of many months of low PSA and zero medications, THAT is the God given "escape window" and there may never be another. In other words, if you stop poisoning your system, that gives your immune system a chance to recover and take over the job of controlling the cancer growth - several members have given numbers showing exactly that. It will take a strict anti-cancer diet and life style (i.e. lots of raw veggies and smoothies, exercise) and perhaps some boost kills from Ascorbate or Peroxide, but there are many who have escaped (most of them outside the Great Big Cancer Money Machine's grasp).
For many of us, long term poisoning, chemo and radiation has damaged our immune system beyond repair and we are not going to get there (but we can still have a better quality of life trying). And most of us continue doing what caused the cancer in the first place, so we will also never climb out of the well.
GRAB any chance to escape with both hands! Get on that plane if you have to!
in reply to
Great post .. thanks
Tommyj2 in reply to
I REALLY wish we had data on the cancer rate in Early man when the world was not “ toxic” and food was pure...... All of this talk of Raw Veggies and “clean” living sounds good on the face of it but I can’t help but wonder if it isn’t more wishful thinking than clinically relevant....NOT intending to engender a discussion of this topic as it will not be resolved here....believers will continue to believe and doubters will continue to doubt.... Frankly I would love it if “clean living” was all that cancer required to never rear it’s ugly head or to force it into remission but I have my doubts..... I also can’t afford to live on organic food....and the healthy lifestyle recommended by so many.....don’t like to believe that my survival chances are substantively reduced because insurance won’t pay for food : )
Hi Geoff,
My husband has been on CONTINUOUS Lupron or Degarelix for almost 8 years.
He started 1 year on then off until his PSA started to rise.
He is 4+3.
His PSA is now 1.4. It fluctuates monthly.
Our Oncol. will change treatment if it shows a continuous rise.
BOOGEE
I'm having two issues while ADT-ing. My big boobs and I can't remember the other issue.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/14/2019 5:15 PM DST
Haha! I lost 30 pounds and my tits got smaller but perkier🤕🤣
I'm jealous....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/14/2019 9:52 PM DST
in reply to Break60
Great job losing that weight ... better for the ol ticker ..💪
Break60 in reply to
Yes plus for the psychy but need some serious tailoring !
in reply to Break60
I too lost 30 pounds. I’m 58 but my skin and body became looking like an 80 yr old overnight with pc . Lucky to be alive...... the saga continues ...
Break60 in reply to
Sorry to hear that at you’re age! I’m 75 and don’t look it because I work out daily as well as count calories and eat right. If you work out , you’re body shouldn’t deteriorate and skin should tighten over new muscle. If you’ve lost weight due to cancer that’s another story and I’m sad to hear that. If you don’t move you’re muscle will atrophy. Any movement is better than none.
in reply to Break60
I agree 100% ..
in reply to
“ new muscle”. Only a concept while on adt with no t.. keep moving ..a rolling stone gathers no moss ,well maybe a little bit .
Tommyj2 in reply to
Appears to be a LOT of variation in how different men respond to these treatments...some lose weight...many gain. Some don’t even _know_ that they are taking medication others have so many side effects that they are reminded every minute of their disease.... guess we all “ pray “ that we will be one of the lucky ones who have minimal side effects..... There doesn’t appear to be any way to predict who will have serious side effects and who will manage to elude them.......I’m paying a LOT of attention to this topic as my time for ADT has to run out before long ( I keep dodging the doubling time bullet and scans have been clean....though i’m Sure that if I looked harder I could find something with a more sensitive scan) there are days that I read about the disturbances in the quality of lives of some of the men here that are so severe I am tempted to leave it all alone and see how long I last.....a friend of mine is doing this and he is 5 years out right now.....wondering when it will catch up with him.. bad death when/if it does..... So glad this group is here to learn from....helps me to avoid wrong headed decisions.....
in reply to Tommyj2
Hope is that the heart gives out before the APC rages back . End stage is hell . But a long protracted hellish existence is what we hope to avoid? Until our final day we walk on rice paper “ grasshopper” Finding some joy each day is my goal . We all suffer . You have read this awhile like I have. We know the score. No one goes unscathed.. keep walking .. I think Mark Twain said”” Live so that even the undertaker cries at your funeral”! We just had a service for a beloved family member. The cordial funeral director told us”’Here we don’t say goodbye” .. We say ,,“ See you soon”.... This guy deals with death every single day . The rest of us are rookies... Pluck the day Amigo 🌵🤙🏽
Been asking the same question!!! What I’ve learned is that nobody knows!!! Some will tell you their experiences, some can tell you what they observed but, as the side effects do, stories vary per individual!!!
I had my final 3 month Eligard injection last Nov. 9th 2018, completing @18months. In June 10th 2019, (@6 months) I was still full blown ADT (T was 18 for the entire time on ADT and now 19 / and PSA still <.01). Now we’re coming up on the end of another 6 month waiting period and my side effects, (some of which you listed below (plus soooo many more)) are unrelenting! So the bloodwork is weeks away but I can only assume that I have little to no T. Never got a baseline number so who knows other than everything worked (or used to work) fine, before Dx’ed!!!!
But I am alive to bitch about it!!!!! So here’s my bitch!!! If a 3 month dosage of Eligard, keeps me castrated for a year, why do I need 3 more dosages in that same time period @$4500.00 each?!!! Why..... because big Pharm say so was the answer they gave me!!!!!!!! If I “Do” have to go back on it, it’ll be different!!! A simple blood test will tell me if I need another dose or I am in-fact still castrated!!! I can’t get an answer as to whether or not the ADT itself took my mind or was it a reaction to the drug itself, but one or both left me “dumb as a stump”!!!! A weak, fat, limp, stupid, stuttering, virtually crippled stump! So, I share your interest in what to expect!!! But I’m not bitter!!!!
Your Welcome!!
Jc
in reply to Jimhoy
Hey jc, ! The crippled stump club . Ain’t it grand?? Big pharma is a pig . Keeps us limpining along but no cure ....
Have you thought about estradiol patches instead? Much much cheaper and much easier on your body!
in reply to Break60
Estradiol interest me ..
What is the benefit of the EstrodioL patches?
Are there any side effects?
Thank you.
See this link: ncbi.nlm.nih.gov/pmc/articl...
They have no side effects except gynecomastia and are better for bones than Lupron etc. See my profile.
You need a script to get them.
You had me at “have”!!! Will look into this further!!!
I don’t recall what prompted me to find this site (HU) about a year ago, but it is virtually the sole source of my education regarding PCa!!! Unfortunately that was about the time I came to understand how my treatment effected my cognitive abilities! So, short answer is yes.... but I honestly, don’t recall any details!!!!
If you have a second to jot down some points, that would be appreciated!!! Many of our brothers post links to studies when details are requested which is useless to me. Simple talking points please!!!
Thanks for the timely prod!
Jc
If you do a search on this site you’ll find lots of discussion on estradiol patches. The reason they are not SOC imho is that big pharmaceutical companies don’t make money on them like they do with ADT and won’t support clinical trials. Their purpose for men is to reduce testosterone the same thing ADT does. Dr Wassersug co - wrote a book on ADT. Search Wassersug and you’ll see his experience with estradiol. He uses the gel rather than patches which he claims is easier to apply. I use the .1 mg patches ( which you change every 3-4 days) rather than gel because IMHO the dosage is more exact. I read the PATCH trial in the UK ( google it) which the UK government pays for which got me interested and gave me assurance of safety and efficacy. My urologist had used the pills way back but they were found to increase cardiovascular risk so they were stopped. The patches were found to have no more cv risk than Lupron etc. but have much less risk for osteoporosis.
The average cost per month with my insurance (A Medicare part D plan) is around $70. The patches are generic. I use Sandoz patches which come 8 to a box and I get four boxes a month.
I gauge whether I’m using the proper number of patches on two things: the PATCH trial experience and my total T level with blood tests (along with Psa, E2, CBC , AK ) every two months.
The only problem with estradiol is gynecomastia . It starts out with sore nipples then breasts enlarge . It seems to stop after a month or so and tamoxifen can mitigate it I hear . Like all types of ADT you must go on a diet or you’ll gain weight . Low T is not good for men but PCa hates it . When I say diet I don’t mean a fad or crash diet. I mean a permanent change in eating habits , eating plant based foods , less or no dairy or refined foods or fatty meats and measuring calories At every meal and exercising A lot! I use “ my plate” app and it’s actually fun to use. I’ve lost 30 lbs in two months.
When I was on ADT I was tired, had trouble walking up stairs, had brain fog, had a 44” waist, had joint pain etc. A mess!
Now I have energy and strength and feel great plus my psa is undetectable! I love going to the gym daily.
If you read my profile you’ll see that I’m very high risk and shouldn’t be alive.
Bob
I have medicare and 6 months of Eligard only costs me $350. Are you unisured?
I’ll apologize in advance of this response!!! Despite my numerous proof reads and edits, my rant may have mislead my point!!! I wanted to stress the effects of a possible “over dose” that is caused ONLY by the profits for Eligard!!! I used to be a very smart man but now.....not so much!!! Sorry!!!
I “was” fortunate to have full coverage throughout my treatment (to date) but I am sort of “lining up my ducks” for the next phase after my vacation, should it be necessary!!! I was dx’ed at 62yo and forced to retire at 63yo due to (as stated) the serious decline of my cognitive and executive abilities!!
I was covered for the first year and was able to buy a needed 1/2 year my insurance within my current corporate plan this year but that stops at year’s end. Plan rules.....long story!!! That 1/2 year’s cost to me was $12,000.00 +/-!!!
Now only being 64yo, I am not eligible for Medicare because you have to be on SSD for 24 months if you’re not 65yo. I turn 65yo the same month that I meet the SSD guideline!!!!!! Go figure!! That leaves me uninsured for about 11 months in 2020. If anyone know a loop hole in the SSD....chime in!!!!! I’m sure that with cancer as a “pre-existing condition”, insurance will be quite affordable!!!!!!!
Jc
I can relate to your loss of cognitive ability. I also suffer with memory loss. My urologist offers grant money for people without insurance. I would contact your Dr. for info. What about enrolling in Obama Care (ACA). It covers patients with preexisting Conditions
I paid $10,000 per year for 3 years insurance before I was eligible for medicare. The deductable was $10,000. per year. It was catastrophic insurance Never recovered anythying from the insurer. Nevertheless I didn't want to be without insurance in case of a major illness or auto accident or some other calamity.
I’ve barely stuck my toe in the water regarding this. Just sort of spewed out with my earlier rant!!
I learned a year ago that my corporate plan does offer a plan “B” which is sort of a catastrophic plan (no dental, no eye glasses...... ($5,000 deductible)) for $12,000 a year. 1/2 the cost of plan “A” now on. We’ve been budgeting in anticipation of that! A lot depends on my test results at the end of my QoL vacation in a few weeks!!
Have to revisit this whole thing however but never thought of ACA.
Now I know why they call it the “Golden Years”..... they take all your gold!!!
Thanks
Jc
Noticed your notes re: insurance from several months ago... wondered if you worked them out..... I know a bit about medicare and could assist if you are on or approaching medicare age at this time...
Bob
Bob
As I often am.... I was wrong about the cost. Really kicked our a$$es! Budgeted $1000 mo and it ended up being $1500 mo. Ouch! But stayed on the best (“A”) plan. Now, we are both about to turn 65 in Nov and with my SS disability 24 month waiting period maturing in then as well, I would have been signing up for Medicare anyway and booted off my corporate family pan.
Now perplexed between Advantage or Supplements. From what I can summarize, Advantage would be a zero up-charge from A & B fees but you pay the first $5000 every year. Thats one Eligard shot.
Supplement “G” (I think) does not have that but cost (in my case) $130 per month. A lot of people recommend “F” which I find is no longer available. I am leaning towards the latter.
Any thoughts would be helpful.
Thanks for asking
Jc
Difficult choice.... have to be sure that the advantage plan covers the drugs you are on at a reasonable price ( the MOOP...Maximum out of pocket these plans speak of does not include drugs on part D... not sure about part B covered drugs ( those administered in an MD’s office) If you go with a supplement Plan G is a good choice...plan F is no longer available to those turning 65 now but low deductible plan G is just as good.... Depending on how much you are spending on labs,MRI’s, CT’s etc a supplement with original medicare and separate part D could be your best bet ( you get to use any MD that accepts Medicare assignment and not have to worry all the time if you will be covered but your Monthly OOP may be higher ( as you have to buy a separate Part D plan)..... If you are just starting out on Medicare( as it sounds like you are) you will have a chance to test drive an advantage plan for 12 months and revert to original Medicare during this time if you don’t like the Advantage Plan... If I were you I would google “ State Health Insurance Program” for your county and get the local number for whatever this program is called in your county ( here in Orange County NY it’s called HIICAP)...they have counselors that can help you out with all these issues... You could also look up your local office for the aging( most communities have them) and ask them to put you in touch with the local “ SHIP”
You are never stuck with any decision you make with Medicare for more than a year as each year there is an Open Enrollment Period that allows you to change... so call your local SHIP...make your most informed first decision for this year and go from there.... It should be cheaper than the prices I seem to recall your mentioning in your original posts.... Mail me if you need any clarification
Bob
Made a mistake with SHIP... actually need to look up your State Health Insurance ASSISTANCE Program....otherwise you will be sent all over the globe with things that sound like State Health Insurance..... your local office for the aging would be the best place to start........tell them you want help with Medicare Counseling... believe me...it’s worth the call given your Brain Fog.
in reply to Jimhoy
What a dilemma!
I was on Eligard for 6 1/2 years with no breaks. I have no more cancer at this time. My PSA has been 0.06 for 1 1/2 years. My T level is 47 and my health is improving weekly. I am growing hair on my chest again, and I lust again! There still is ADT in my system so I will see what happens next!
in reply to JimVanHorn
Sounds pretty good to me JVH .. keep improving . Good luck .
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