Seeking answers that so called profes... - Advanced Prostate...

Advanced Prostate Cancer

22,286 members27,986 posts

Seeking answers that so called professionals won't answer !

positive-thinking profile image

Hi

You have probably seen older posts in regards to estradiol patches that my husbands Urologist started him on for bones and hot flushes . He claimed that this will help his hot flushes and is good for his bones but he never ever calls and will not respond to emails we send ( or phone calls ). We do not have anyone that has any knowledge to answer any questions in regards to this patch. The patch is called Estradot 25 and is a 0.39 mg patch ( 25mcg/24 hour ) . This urologists assistant told my husband he can apply a patch twice a week but the prescription says 1 patch a week. My question is since this is releasing dose in a week how does he apply another? Apply a patch and than another 3 days later? After the week take the older one off and apply another so that there is always 2 patches on him that he alternates weekly ? The assistant did not know how to answer how to apply and to be honest my husband was having a very hard time understanding her due to language barriers. We are also wondering about asking for a bit stronger patch but no one to ask, our own general Doctor would prescribe if we asked but he has no knowledge of what dose to apply . My husband finished his chemo April 18th as part of his triple therapy and continues on his 3 month Zoladex injections and Nubeqa daily. He is trying the patches at the suggestion of Urologist for bones and hot flushes but not able to get further help with regards to where to go from here ? Thanks for any help, I'm getting frustrated as hell ! He continues to have hot flushes and I think this patch is too low so was hopeful to get professionals to follow up . Our health care sucks here so bad :( Scary times right now when you seek medical advice and can't get it .

Written by
positive-thinking profile image
positive-thinking
To view profiles and participate in discussions please or .
Read more about...
46 Replies
Mgtd profile image
Mgtd

Hopefully a fellow named Bob will chime in. He is our resident expert on this. In the interim try and search and look for his name.

positive-thinking profile image
positive-thinking in reply toMgtd

He has responded on another post I had but this is a different question I'm seeking some help to find out how you apply a second patch when the one he is prescribed says to apply 1 patch for 1 week then remove and apply another patch . But he want to add another patch in that week so we are wondering how this should be done? He puts the 1 patch on and 3 days later he applies a second patch and then 3 days later another patch and he keeps removing the oldest patch after it has been on the required week ? He has no guidance form urologist that prescribed the patch that is supposed to be 1 patch a week 0.39 mg patch. I have researched tons and this is not strong enough to do anything so we wanted to use the patches we do have by adding 2 a week for now but not sure exactly the best way to do this ? Hope someone understands the proper way that these patches release the medication and how we should add 2 patches in a week instead of just one . Hope this make sence

Mgtd profile image
Mgtd

I just searched for estrogen patches and he is there with a ton of info. Good luck

Lettuce231 profile image
Lettuce231

Have you looked at Black Cohosh, my wife used it during the menopause to great effect, you can buy it at a pharmacy.

dhccpa profile image
dhccpa in reply toLettuce231

Hot flashes? Or did black cohosh help bone strength as well?

Lettuce231 profile image
Lettuce231 in reply todhccpa

Glucosamine for bone strength. Black cohosh for hot flashes.

dhccpa profile image
dhccpa in reply toLettuce231

Glucosamine sulfate? I've never done that, although I considered a while back. I'll take another look. Thanks.

Lettuce231 profile image
Lettuce231 in reply todhccpa

Vit4ever, on amazon. Pure Glucosamine powder form, very good quality. I couldn't send a picture, wrong format, sorry 😐

Lettuce231 profile image
Lettuce231 in reply todhccpa

Hi dhccpa, sorry I couldn't give a more detailed answer, it was dog walking time 😀.

I have been taking pure glucosamine for many years, initially it seemed to stabilise the loss of bone density, but in more recent years there has an increase in my bone density. Not by a vast amount, but it reversed the trend. I found out when I had a knee replacement. It is a slow process, but I didn't want any more drugs. Make sure if you are going to use it, no other additives, just 100% pure glucosamine.

I hope this clarifies things a bit. All the best👍

dhccpa profile image
dhccpa in reply toLettuce231

Thanks

garyjp9 profile image
garyjp9 in reply toLettuce231

Can you get it in the usual drug stores?

Lettuce231 profile image
Lettuce231 in reply togaryjp9

Hi garyjp9, Yes normally you can.

giorgioc profile image
giorgioc

The patch provides 25 mcg/day (per day) of estradiol but runs out of content in 3/4 days, so on the third (or fourth) day remove the old used up patch and put on the new one, you have to apply 2 per week

positive-thinking profile image
positive-thinking in reply togiorgioc

Wow , thanks so much

Grandpa4 profile image
Grandpa4

I think you need an oncologist. Urologist are surgeons. They really are not interested in medications and do not get adequate training in the I use of medications. Preferably an oncologist ghat only takes care of prostate cancer. Even if you are going to stay with a urologist you need a new one. Estrogen caries a small risk of blood clots and might increase your risk of heart attack. The more you take the greater the risk. I do like the idea of estrogen because I think it is also good for muscles. I think it might be worth the risk if I knew more about your husband. Taking 2 a week does mean leaving 2 on for a whole week.

dhccpa profile image
dhccpa in reply toGrandpa4

Supposedly it was oral estrogen that caused those cardiac issues. Estrogen patches do not, according to posts on this forum.

As for an oncologist vs a urologist, I wanted to do Provenge immunotherapy and could not find an oncologist in my area to do it, only a urologist. So that's where I went. But I still have both my medical and radiation oncologists.

janebob99 profile image
janebob99 in reply todhccpa

You are 100% correct, dhccpa, that the oral route of delivery (primarily DES) takes a first pass through the liver, which causes an increased risk of blood clots and heart attacks. Transdermal routes of delivery (patches, gels, creams, pellets, etc.) do not have the same problem because they don't take a first pass through the liver.

janebob99 profile image
janebob99 in reply toGrandpa4

I respectfully disagree with your statement about there being an increased risk of blood clots and heart attacks with transdermal estrogen (patches, gels, creams, etc). Recent data refutes that statement.

The recent phase-III results of the 14 yr PATCH study in the UK showed that there was no increased risk of cardiovascular events or blood clots for men taking estradiol compared to men taking Lupron for doing ADT. The same, small percentage of men did get blood clots and heart attacks independent of whether they were taking Lupron ADT or Estradiol Patch ADT.

Decades ago, men with PCa took DES, an oral form of estradiol to treat PCa. It was quite successful for about 30 years, but unfortunately the rate of blood clots increased. It was dropped when Lupron became available in 1980. Older doctors remember the problem with blood clots. The current use of transdermal estradiol patches don't have the same problem with increased risk of blood clots as the previous oral route of delivery, because the transdermal products (patches, gel, creams, pellets, etc.) do not take a first pass through the liver (which causes the increased rate of blood clots). Note: some small percentage of men will still get blood clots and have heart attacks with estradiol therapy, because of poor overall health. But, the rate of incidence of blood clots IS NO WORSE than when taking Lupron ADT. The PATCH-III study demonstrated that.

Hope this is helpful.

Bob in New Mexico

positive-thinking profile image
positive-thinking in reply toGrandpa4

It is not easy to get an oncologist and is actually impossible at this time is what we are being told. Until my husband has some decline that is obviously cancer spreading they dont have one for us to see or to even talk to. You can't even talk to the urologist here, my husband just had TURP surgery and we did not even get to talk to him , he had one of his assistants call us 3 weeks after the surgery , this person had zero knowledge of my husband and unable to answer any questions in regards to the patches that were prescribed to him. Very scary and frustrating !

Grandpa4 profile image
Grandpa4 in reply topositive-thinking

Where do you live?

positive-thinking profile image
positive-thinking in reply toGrandpa4

Remote part of the Yukon , Canada

Grandpa4 profile image
Grandpa4 in reply topositive-thinking

Oh I get it, but it is not how you should be treated anywhere.

Teacherdude72 profile image
Teacherdude72 in reply topositive-thinking

Interesting that there are so many problems in getting proper care. No rapid ability to speak with a doctor, poor response time from assistants and not able to consult with a proper specialist. Sorry to say this but does not speak well of the healthcare system in your country. Where I live, Western NY state there are four major Cancer treatment hospitals with one being Institute being the first certified in America. All different range of treatments are available. Seeing a doctor for initial, second opinion or even a third opinion is simple: just schedule and you get often within a week and never more that three weeks. Specialists in type of cancer is not an issue either. Would it be possible to visit doctors out of Canada?

positive-thinking profile image
positive-thinking in reply toTeacherdude72

I'm not sure if it is possible , I know of a few members on here that had to pay out of pocket to get a pet scan because it is almost impossible here , but it was a huge expense for them . We are going to speak with our regular doctor to discuss some kind of a new referral . Canada has a health care system that is collapsing in my opinion. Some will agree that live here and some will argue but it is a fact it is getting worse each year .

DesertDaisy profile image
DesertDaisy

As far as the timing of changing the patches, the pharmacist may be able to help with that.

janebob99 profile image
janebob99

Hello.

You are correct, his dose is too small.

The randomized PATCH study (Phase-III), which just concluded after 14 years of tracking patients, compared Lupron ADT head-to-head to Estradiol ADT. In that study, men used 3-4 large patches (strength = 100 mcg/24 hr) simultaneously, changed twice a week. The overall survival results were slightly better for estradiol than Lupron ADT, which was expected. Average serum estradiol levels ranged from 200-400 pg/ml, which are sufficient to do the same thing as Lupron ADT, but with much less hot flashes and no osteoporosis, among other benefits of estradiol (E2).

I've attached a plot from a study of hot flash frequency for post-menopausal women that showed hot flashes could be completely eliminated by achieving a serum E2 level of greater than 120 pg/ml. A man's response should be similar to a PM woman's response.

That level of serum E2 can be achieved with 1 large patch (100 mg/24), changed twice weekly. Best place to apply the patch is upper buttocks or top of the hips, where the amount of fat under the skin is minimized.

You can show this very recently published Abstract from the PATCH-III study to his doctor for showing that estradiol patch therapy is safe and effective.

annalsofoncology.org/action...

Or, send me a request for the abstract to my email: janebob99@lobo.net, and I will send you the .pdf, and other papers, as needed.

Bob in New Mexico

Frequency of Hot Flashes
positive-thinking profile image
positive-thinking in reply tojanebob99

Very great information, thanks so very much . You have a great deal of valuable knowledge . We are going to go through our own doctor to see if we can get blood work for Estradiol and will continue to try and get through somehow to get the patch increased . In the mean time my husband is going back on Effexor till we get higher dose patches and will continue taking the ones he currently has ( 0.39mg ) . Our own doctor may even possibly write a prescription for a higher does patch if we can give him the information on what dose to try as he does not know anything about this treatment . Next time we see him we will pick his brain if we have not heard from the urologist . Thanks for your incredible information

LowT profile image
LowT

I preface my comments with the clarification my experience has been with T gel.

Absorption is highly variable as well as individual responses to a medication.

With T gel absorption varies by location.

Chest/upper arms> abdomen> thighs. I would suspect similar with E2 cream

other factors such as climate (temperature), whether skin is covered or not, frequency of bathing, preparation/vehicle that E2 is placed in.

All emphasizes importance of measuring blood levels or there is no way to know what is actually happening and correlating with symptoms and clinical course.

janebob99 profile image
janebob99 in reply toLowT

Thanks, LowT, for your helpful information.

For estradiol, the highest absorption is when applied to the scrotum, followed next by the jaw line and scalp The next best location is upper buttocks and upper hips. The forearm is the worst place to apply estradiol. Pre-hydration appears to greatly increase absorption, as well (e.g., a shower before application). We speculate that the amount of subcutaneous fat (under the skin) is a controlling factor (more fat --> less absorption into the bloodstream).

Bob in New Mexico

gsun profile image
gsun

Check out this interview with Dr. Richard Wassersug. He is an expert on estradiol. youtu.be/zYWbaEx4x4U If you can find his info on this forum, send him a PM.

positive-thinking profile image
positive-thinking in reply togsun

Great video , thanks so much

janebob99 profile image
janebob99 in reply togsun

Thanks for posting this!

I am currently collaborating with Professor Wassersug on 1, possibly 2, manuscripts on transdermal estradiol for treatment PCa.

Bob in New Mexico

positive-thinking profile image
positive-thinking in reply tojanebob99

That's would be so awesome !

Thanks so much to everyone for all the helpful information, this site is amazing !

Teacherdude72 profile image
Teacherdude72

I strongly suggest you switch to a Medical Oncologist that specializes in prostate cancer.

positive-thinking profile image
positive-thinking in reply toTeacherdude72

We wish !! See my reply above to Grandpa4

85236442968 profile image
85236442968

To start with, if your Dr, Urologist, Cardiologist, Oncologist, or any other medical professional, will not answer your calls or questions, it is time to move on.

Do not expect the actual Dr to return your call, but his/her team must or you have something that will not help you physically or mentally.

You have to be your own biggest advocate.

As far as help with the patches, I do not have anything to add.

j-o-h-n profile image
j-o-h-n

A plan: Run those uncaring physicians over with a dog team/sled and blame it on runaway dogs....

Good Luck, Good Health and Good Humor.

j-o-h-n

E2-Guy profile image
E2-Guy

I was battling PCa for years until I started applying transdermal E2 gel. Stopped using it almost a year ago since my PSAs were coming back undetectable! I assume my prostate cancer is currently sleeping?

Dr. Richard Wassersug (my mentor) is an authority on this treatment!

E2-Guy profile image
E2-Guy

Transdermal E2 gel has been a miracle gel for my prostate cancer (PCa)! I developed PCa in my late 50s, had my prostate removed; however, my PSAs continued to rise. After using the gel for about a year, my PSAs became undetectable. Haven't used it for a long time since I believe my PCa is sleeping? I am now 81 with no signs of cancer anywhere! The only side effect is man boobs!

Ichthus316 profile image
Ichthus316

I receive an Eligard (ADT) shot every 3 months and I can't say enough good things about low dose estradiol patches. I feel so much better since starting them about 6 months ago. I consider them to be essential for men's health, including sexual health. For men, estradiol levels should be 10-29 pg/mL and should be monitored occasionally with an ultrasensitive blood test to make sure levels stay within that range. A standard test, which is designed for women, isn't sensitive enough for the low levels found in men. For me, it was a trial and error process to find the correct dosing schedule. I settled on wearing a .025 mg/d patch (designed to be worn for 7 days) for 10 days before removing it and I add a new one every 7 days. So for 3 days per week, I'm wearing 2 patches. My last estradiol test was 21 pg/mL. But your husband may be entirely different. I hope this helps.

positive-thinking profile image
positive-thinking in reply toIchthus316

Thanks so much for the information . My husband is going to see if our regular doctor will prescribe a higher dose patch as the one he is currently on is 0.039mg but I dont think it gives off much in a 24 hour period. I'm trying to figure out how much the patches gives off in a 24 hour period in regards to the MG of the patch ? You say you settled on a 0.25 mg/d patch , any idea how many Mg the patch has ? Thanks

Ichthus316 profile image
Ichthus316 in reply topositive-thinking

You actually wrote the answer to the question in your original post 2 weeks ago: "The patch is called Estradot 25 and is a 0.39 mg patch ( 25mcg/24 hour ) ." This is the same patch I use and it keeps my Estradiol level in the correct range. But as I said, everyone is different. Have you had his blood tested with an ultrasensitive test? If his Estradiol is below 10, you could go to a 50mcg/day patch, but you would definitely need to stay on top of his Estradiol blood serum level because having too much is probably worse than having too little.

positive-thinking profile image
positive-thinking in reply toIchthus316

Thanks for the reply, he is currently wearing the patch for 4 days and takes it off and puts on a new one on the 4th day as the pharmacist says that after that time the patch has nothing left in it anyways. We are waiting on his next doctor appointment to ask his regular dr about getting a blood test and going to go from there on if he needs to go up to a Estradot 50 or not. From your post above it sounds like you are putting on 2 patches every 7 days?

Ichthus316 profile image
Ichthus316 in reply topositive-thinking

Since the start, I always put on a new patch every 7 days, always on Fridays so I don't forget. Removing it after 7 days (same day and time that I add a new one) didn't provide enough Estradiol, so I tried leaving it on for 14 days, which provided too much. I settled on leaving each patch on for 10 days, which means that on Friday, Saturday and Sunday I'm wearing two patches and the other four days only one. That gives me a blood serum level of around 20, right in the middle of the correct range for men. Your method may work as well, there's no way to predict until you try. It's a trial and error process.

Bacana profile image
Bacana

We’ve tried to get estrogen therapy for my husband but all his doctors look at us like we’re crazy. We live in Texas.

Not what you're looking for?

You may also like...

Edema with Advanced stage 4

Edema. Should we worry? My husband has gained about ten pounds on his 174 lb frame in the last few...
Sipj profile image

Is there any benefit to postponing chemo treatments?

Hey all, My Dad is currently on Bicalutamide and gets his first Lupron shot next week. These were...
Here4Dad profile image

Anne for Ron

hello. My husband had been on Lupron (ADT) for just over a year. he had been diagnosed with...
rfurgason profile image

Chemo treatment/What happens after chemo?

Hello all. I hope everyone is doing well. Just wanted to give everyone an update on my husband. I...

Supplements/Nutrition for advanced prostate cancer

Hi, I am a wife to a loving husband who was diagnosed just last June 2018 (a few days after his...
dvcarola profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

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.