Following a positive biopsy indicating that I had prostate cancer (3+4) in late 2013, I began a long ADT treatment protocol that included a combination of Lupron, Casodex, Avodart, Xgeva and Metformin until Februaru 2015. I then switched from Lupron to Estrogen Patches and continued the Avodart and Metformin. Ever since until March 2019, I used the patches off and on as the primary ADT treatment along with the Avodart and Metformin. In March of this year, I, again switched back to Lupron
The treatment has apparently worked, keeping testosterone well below castrate levels and PSA below 1.0. Along the way, twice I stopped the patches as the Psa appeared to nadir, All along, I kept dosing with Avodart and Metformin. After stopping the patches the first time in 2015 and watching the PSA slowly rise to 2.75 in 13 months, I resumed dosing with the patches and saw PSA drop again below 1.0. I repeated the process again the second time in 2017 but this time the off period was limited to 5 months because the PSA quickly rose to 3.42. During this on and off treatment from 2015 to late 2018, side effects where minimal and tolerable.
In late 2018, I began to see changes both in treatment results and to the apparent side effects. Psa levels where higher across the board even if they remained below 1.0. Side effects where much more evident, especially as they related to Cognitive Impairment. Testosterone remained below 20. In March 2019, I stopped using estrogen as the primary ADT and had a Lupron injection that was repeated in June, I continue to use Avodart and Metformin.
My question here today for the members of this great Forum relates to loss of memory. Starting in late 2018 and continuing through about May 2019, I experienced, an incredible all-of-a-sudden loss of memory. If Brain Fog is a possible side effect of ADT, what I went through could be categorized as Brain Fog on Steroids. I couldn't remember parts of my life, family members, places where I had lived and worked, what I did the day before... During the 49 months of the intermittent Estrogen patches treatment, I was on the patches for a total of 36 months. I was using 4-6 patches daily, COULD THAT HAVE BEEN THE CAUSE OF MY LOSS OF MEMORY???? Has anyone experience loss of memory while being treated with patches? Today I still have memory issues but not nearly at the level of what I had earlier this year.
Written by
middlejoel
To view profiles and participate in discussions please or .
I have no expertise in this area but I looked up an FDA drug label for estrogen patches. There are many different vendors and formulations so I picked one arbitrarily, namely: accessdata.fda.gov/drugsatf...
The FDA data pertained to women but it did have information on memory issues experienced by women and discovered in the Women’s Health Initiative Memory Study. Results are summarized on page 21 of the above cited document.
If I understand it correctly, there was an increased risk of dementia for women taking the patches as compared to placebo. The risk appears to have increased with age. How the dosage compares to yours and how the effects in men compared to those in women may be significant too but aren't available in this document.
It would be ideal if you could find an expert doctor to help you with this issue but I don't think it will be easy. An endocrinologist might know about estrogen effects, a neurologist about memory and cognitive issues, and a medical oncologist about prostate cancer, but finding someone who understands all three would be a challenge. Still there might be someone, for example at the university research hospitals. Maybe posting messages in dementia and endocrine problem forums in addition to this one would get a suggestion.
In the meantime, I suggest holding down estrogen treatment if possible, and engaging in hard mental and memory exercise to bring back as much as possible of what you've lost. The brain is now thought to be a lot more "plastic" than it was once thought to be and I believe (or should probably say, "want very much to believe") that mental exercise can help.
Allen, thanks a million for your reply. You are absolutely correct when you described the roles each doctor plays if a treatment falls outside of the box. Actually, even getting MO's to prescribe estrogen patches for prostate cancer could be challenging. I have excellent doctors and I have no problem in that area but---it is a very complex issue.
My wife suffers with advanced Alzheimer's and is home bound. I am her primary caregiver,
she is bed and wheelchair bound so I have been around and seen loss of memory creep for many years. What I went through was nothing compared to what my wife experienced. This past Monday , I had an appointment with her old doctor and in the process, he gave me a short test given to those that are suspected of having Alzheimer. Based on that test, I don't have nor am I close to having Alz's.
My confusion and memory loss was real, at times total and sudden. It came at a time when the results of the patches where beginning to fail and after we increased the daily number from 4 to 6 patches. My confusion continued to get worse after switching to Lupron for about another 4-5 months, that was around June-July. Today, I have recovered a good chunk of that memory loss but still retain some cognitive issues that I didn't have a year ago. I am meeting with my MO tomorrow, she practices at The City of Hope, a research center near Los Angeles and will run through her some of you excellent suggestions.comments.
BTW, when you say that I should continue to hold down estrogen treatment, do you mean to continue with patches?
By "holding down" I meant to say, use them as seldom as practicable, i.e., reducing your use of estrogen patches.
I have great sympathy and admiration for you for taking care of your wife. I know what that's like. My mother and my wife's mother both experienced advanced Alzheimer's Disease. My Dad also experienced some dementia before his death at age 87. When I broke through my denial and first came to accept that my Mom really had AD I was devastated and also made paranoid about my own condition. I was only 42 at the time, but every time I forgot something I questioned my mental health and sanity. Today, I know without question that my memory and cognitive skills are below what they were as a young, or even a middle-aged man. But what can I do? I push myself to think and remember. I read books at the same rate I have always read them. I exercise a lot. I'm not a naturally healthy eater but my wonderful wife at least sees to it that I get good dinners. Life is what it is and it's not always what we want it to be. So we struggle along and help each other out as best we can.
Thanks Alan for the nice words and yes, living with Alz's is not easy, specially since both the wife and I are in the 80's. I think that you are on the right track, keep reading and exercising and maybe some day you will experience a cure for the disease.
I find that while castrate, I often have a problem finding a word I want. In conversation, I often feel as though the other person must think I am dimwitted.
It is said that estradiol [E2] is associated with language skills, while testosterone is associated with spatial & mathematical skills. Also, that women have better memories than men.
With classic ADT, T & E2 are both very low, whereas with E2-ADT, only T is affected. I wouldn't automatically suspect supraphysiological E2 to be the problem in your case.
Most of this is over my head. I initially chose estrogen patches over Lupron because I also have heart issues and I thought that the patches would do less damage. To me, if dosing with patches lowered Testosterone without the advertised side effects that are attributed to Lupron, I could live with large breast and loss of libido. As you suggested, the patches did put me at a castrate level quickly but here is what I don't understand, IT ALSO LOWERED ESTRADIOL. While on the patches for 4 years, we didn't always test for E-2 but when we did, it was usually low. I went back over my records and only found 2 test results for E-2. One was at the 10 level, the other at less than 5., both below the low normal range for E-2. So-----could this be a key?? It appears as if the patches where working at keeping the testosterone at castrate levels but not absorbing enough to keep it at normal levels. Could this have been the reason for the massive memory loss?
I can't understand how E2 could be low while on a high-dose E2 patch.
[1] Short-term effects of transdermal estradiol in men undergoing androgen deprivation therapy for prostate cancer ...
"Transdermal E2 significantly raised serum E2 from baseline to day 28 compared to placebo in the 0.9 mg dose group (median: 208 pmol/L; interquartile range: 157-332) and in the 1.8 mg dose group (median: 220 pmol/L; interquartile range: 144-660)."
Under situations where a man is producing too much E2, two things happen to control the E2. First, the gonads production of T is reduced, since E2 mostly comes from aromatization of T. Secondly, production of sex hormone binding globulin [SHBG] is increased. SHBG binds to the sex hormones to make them bio-unavailable. This lowers free T & E2. Maybe your body is over-producing SHBG? Was it ever measured?
An E2 of <12 will quickly have a negative effect on bone density.
& perhaps your low numbers explains the memory loss.
Met with Dr. Dorff of City of Hope yesterday. Went over my records during the past 4 years of intermittent use of patches and they indicated that usually, the E-2 levels where between 100-200 which made sense. She has no explanation for the recent extremely low levels other than------what is medically known as Tachy Phylaxis, see definition below
What is tachyphylaxis? how it happens with topical steroids?
Best Answer: tachyphylaxis is development of immunity to a drug. After repeated use of topical steroids, the capillaries in the skin do not constrict as well, requiring higher doses or more frequent application of the steroid. With high-potency steroids this effect has been documented after 4 days of applying a topical steroid three times a day. The ability of the blood vessels to constrict returns 4 days after stopping therapy.
For now, I am going to stay on Lupron and see if I am now castrate insistent. Yesterday was the 4th straight psa increase even if I remain below the 1.0 level.
That makes no sense. My E2 is up but in normal range. It must go up if estradiol is being absorbed! Some guys I’ve talked to saw it go up into the 100s!
It is unlikely that transdermal estradiol is the cause of the cognitive challenges you have been facing. [And the Women’s Health Initiative Memory Study data are probably not that relevant.]
However....
Dr. Erik Wibowo, PhD reviewed this topic two years ago and his paper is freely available on the online. Here is the abstract:
Current Neuropharmacology 2017;15(7):1043-1055.
Cognitive Impacts of Estrogen Treatment in Androgen-Deprived Males: What Needs to be Resolved.
Abstract
BACKGROUND:
Many prostate cancer (PCa) patients are on androgen deprivation therapy (ADT) as part of their cancer treatments but ADT may lead to cognitive impairments. ADT depletes men of both androgen and estrogen. Whether estradiol supplementation can improve cognitive impairments in patients on ADT is understudied.
OBJECTIVE:
To summarize data on the effects of estradiol treatment on cognitive function of androgen-deprived genetic male populations (PCa patients and male-to-female transsexuals) and castrated male animals.
METHOD:
Publications were identified by a literature search on PubMed and Google Scholar.
RESULTS:
While some studies showed that estradiol improves cognitive function (most notably, spatial ability) for castrated rats, what remains uninvestigated are: 1) whether estradiol can improve cognition after long-term androgen deprivation, 2) how estradiol affects memory retention, and 3) how early vs. delayed estradiol treatment after castration influences cognition. For androgen deprived genetic males, estradiol treatment may improve some cognitive functions (e.g., verbal and visual memory), but the findings are not consistent due to large variability in the study design between studies.
CONCLUSION:
Future studies are required to determine the best estradiol treatment protocol to maximize cognitive benefits for androgen-deprived genetic males. Tests that assess comparable cognitive domains in human and rodents are needed. What is particularly under-investigated is how the effects of estradiol on cognitive ability intersect with other parameters; sleep, depression and physical fatigue. Such studies have clinical implications to improve the quality of life for both PCa patients on ADT as well as for male-to-female transsexuals.
If you or others following this discussion want more information after reading Wibowo's full paper, you can email him directly at Otago University.
My personal (N=1) experience is that Lupron caused some cognitive impairment, particularly in visual-spatial processing. Large retrospective data suggests that may be risk for the LHRH drugs in general (see reviews posted at LIFEonADT.com).
In contrast, transdermal estradiol cleared up the brain fog for me.
Richard W.
Apart memory issues when high dosing (and really interesting to understand why E2 that low) how did you experience differences between lupron and patches? What about your heart issues? How was your off/on cycle, how did you decide when to begin again, by PSA? You are the first I read doing patches intermittently and I was thinking about this option for my husband, so very interested.
See my recent reply to Patrick. I felt no different while on the patches, they worked great for about 3 1/2 years. On and off periods where crudely determined from psa levels. Initially stopped patches when psa nadired at less than 0.1. The last nadir in late 2018 had risen to 0.48. I resumed the patches when psa rose above 2+ andusually quickly saw the psa drop.
Im on Lupron and Xtandi. The past year and a half I've really gone bad in the cognitive department. So it could be just extended time on treatment period. I have been on it for 9 years in November.
I never took estrogen.
My brain is scrambled. My energy levels fluctuate from not so bad to really bad. I know what kind of day I'll have after my morning walk. If my knees feel like they are going to snap off while walking in the morning im going to have a bad day. The forgetfulness seems to get slowly worse each year. I suppose there is not much we can do about it. Taking a drug holiday is not an option as i tried that 2 years in and psa spiked 4 points in 6 months. I guess when there is enough people on Lupron the vultures wil run an ad on tv ready to sue the drug maker, Which i dont believe in.
Anyway we are all here to make the most of what we have left of ourselves.
Tj, how old R U? Yeah my guess is that cognitive issues relate to ADT whether LHRH-type or otherwise including estrogen. What does you doc say about your memory loss?
Be careful with Avadart,it will artificially lower your PSA if it’s creeping up get a couple of scans to make sure the cancer is not spreading. Mine was out of control by the time they caught it. That said the lupron is what I blame for my memory lose ,that and the chemo. A lot of these meds can cause early dementia 🙏🙏🙏🙏
I only use (3 ) .1 mg patches changed twice weekly because it’s enough to keep Psa steady at .1 and T below 20. Why did you use so many? I have no more memory problems than I had when using Lupron or trelstar. The key is to use the least amount of any med that’s effective.
Yeah, you used 3 patches and I used 4, to start with as recommended by my doc. also changed twice per week. That worked great for about 3 1/2 years until it didn't. Hope it continues for you
I am a fan of the patch. My memory got better on the patch. I started waking up and remembering where I put my glasses for the night. I started remembering many details that I could not remember before. Patch also helped me with my joints, osteoporosis, and overall feeling better.
Perhaps not using a blood thinner is the problem, not the patch itself. Estrodiol patches will thicken your blood and raise stroke risk if you use patches without a blood thinner. Poor circulation can advance many health problems. I take a daily aspirin 325. Before I did aspirin, I was did plavix.
Congratulations on finding a treatment that works for you and here is hoping that it continues to do so. It so happens that I also have A-Fib and I also take daily blood thinners.
Dr Charles E Myers prescribed the patches and I dont know what basis the blood thickening was based on. My initial dose of patches was very high, and perhaps that was the problem with blood thickening. He ran 9 vivelle dot 0.1 patches. I trust his judgement more than any other doctors I talked to because he made sense and delivered my longest remission ever in 2012. It is possible that a clot risk also comes with ADT for cancer, so the aspirin was a good idea. I also heard of studies that aspirin helped cancer, but cant remember where I saw those studies.
I read that blood thickening happens in pregnant women when estrodiol runs very high and pregnant women have higher risk of clots. Remember estrodiol is a female hormone.
When women use oral contraceptives or hormone replacement, oral estrogen is more associated with clots because all estrogen taken orally passes through the liver before it goes to the rest of the body. This causes the liver to produce excess clotting factors. When given transdermally, you can get the same dose into the blood without passing through the liver first, so the overproduction of clotting factors doesn't happen. However, if you were to increase estrogen in the blood to high levels using high doses patches or cream beyond what is physiologically normal, the liver would sense high estrogen and begin to upregulate clotting factors. This is likely what is happening in men too.
ok, but beyond physiologically normal levels for women or for men? I think in the patch trial the y did not find more clotting than with lupron till now.
I was looking through some of the research, I didn't find any strong evidence that transdermal estrogen used for ADT in men increases clotting (see studies below). A baby aspirin may still be a good idea if there is no bleeding risk. I hope that helps to answer the question.
"In an initial cohort of 254 men at 19 mo follow-up “the proportion of patients in the E2 arm experiencing a cardiovascular system event (10.1%) was relatively similar to that in the LHRH agonist arm (7.1%), “with half of the events assigned to men on E2 occurring sometime after treatment with patches was stopped and LHRHa started.”
Emerging potential of parenteral estrogen as androgen deprivation therapy for prostate cancer (2015): ncbi.nlm.nih.gov/pmc/articl...
Androgen Deprivation Therapy and the Re-emergence of Parenteral Estrogen in Prostate Cancer (2014): ncbi.nlm.nih.gov/pmc/articl...
"The largest SPCG trial randomized PC patients (n=910) to receive either combined androgen blockade (LHRHa/orchiectomy plus anti-androgen) or intramuscular estrogen (PEP 240 mg). No significant difference was observed between the groups in terms of progression-free survival, overall, or disease-specific survival, and CVS mortality."
I have been on tE2 gel for about 17 months now and haven't noticed any changes in my memory or cognitive ability; however, at 76 it certainly isn't what it was 20 or 30 years ago. I do a little karaoke with music only (no lyrics) so I memorize the words to many of my favorite songs. One of the songs that I recently memorized (took a little while) is 'American Pie' by Don McLean which excluding the chorus is over seven minutes of nonrepetitive, anomalous verses...not a major accomplishment, just some brain exercise.
My E2 levels since I started on the gel are as follows:
3/15/2018 - 25
6/19/2018 - 31
8/3/2018 - 123
10/30/2018-258
1/22/2019 - 380
4/23/2019 - 145
8/10/2019 - 174
Richard Wassersug has been on tE2 for many years and to the best of my knowledge has experienced no memory/cognitive loss.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Estrogen Patch ADT
Estrogen patch to improve quality of life
How much memory loss is due to Lupron?
