How did you have access to estrogen p... - Advanced Prostate...

Advanced Prostate Cancer
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How did you have access to estrogen patches if outside trial?

Myriammole
Myriammole

For those outside UK patch trial doing estrogen patches INSTEAD of ADT, how did you have access to the patches?

51 Replies
oldestnewest

You can also get these patches if you join the STAMPEDE trial, there is an arm that tests these.

Otherwise it will be difficult. Very few UROs will give you a prescription. Your wife could get a prescription to treat her hot flushes. But I do not recommend all this, join a trial instead.

Myriammole
Myriammole in reply to GP24

I am located in switzerland, so I don't see how to join the STAMPEDE.

GP24
GP24 in reply to Myriammole

I had the impression from your previous posts that you are located in the UK. However, you can join the STAMPEDE trial in Switzerland too. Here are the locations:

clinicaltrials.gov/ct2/show...

You will want to join the Arm "L" :tE2, "Transdermal Oestradiol". However, you may be randomized to the control arm without patches.

Myriammole
Myriammole in reply to GP24

Thanks! Imagine that today they told me there was not such trial in Zurique!!! But maybe not this arm, anyway will try, thanks!

GP24
GP24 in reply to Myriammole

Now you can prove to them that they offer this :)

Myriammole
Myriammole in reply to GP24

And if i get in the wrong arm I can always go out... no?

GP24
GP24 in reply to Myriammole

I do not think you get randomized to the arm, this is your choice. But each arm has a control group. You can drop out but if every patient would leave the control arm they would get in trouble.

Myriammole
Myriammole in reply to GP24

yes... I will see what I can do

Break60
Break60 in reply to GP24

Any urologist will or should give you a script and Medicare part D pays for them with a co pay. They stop hot flashes with one patch and lower T if you use three patches , the same as ADT with none of the side effects except man boobs which are as I understand it controlled by tamoxifen. I never used it. Boobs aren’t that bad and at 74 who gives a darn?

HiddenThis reply has been deleted
GP24
GP24 in reply to Hidden

The STAMPEDE trial is a multi-arm trial and new arms are constantly added. So they added the estradiol arm I mentioned recently:

onlinelibrary.wiley.com/doi...

"STAMPEDE is currently recruiting to the ‘metformin comparison’ and since June 2017, a new ‘transdermal E2 comparison’ has been added, comparing transdermal E2 with standard ADT to complement the PATCH trial."

Break60
Break60 in reply to GP24

Sorry I didn’t know that. Glad to hear they’re doing it but still there’s no need to join the trial . Guys like me have been doing there own trials and they work with less harm to the body than lhrh agonists.

GP24
GP24 in reply to Break60

I have the impression these patches work well and also hope for a successful outcome of the trials. I myself would try these patches outside of a trial but don't want to recommend that to other patients. Since these patches and oestrogens are not recommended by the European guidelines, if a patient consults his doctor, most of these will reject to prescribe the patches. So the next post will be: I talked to my URO, but he said....

I also agree that they can be used at a lower dose to mitigate hot flushes and the bone loss caused by Lupron. This causes fewer side effects than Zometa or Xgeva, e.g. no necrosis of the jaw.

An alternative is a Bicalutamide or Casodex monotherapy, this will also work without suppressing testosterone. And is included in the guidelines. My URO did not want to give me a prescription for that because he had no patient using Bicalutamide before. But I took with me a printout from the guidelines and showed him that.

As you already mentioned, you have to get your breast radiated or use tamoxifen to avoid man boobs.

I read about the UK trial , talked to some guys on this site who were using them, asked my urologist to prescribe them and he did without question as he had used DES back in the day. You don’t need to be on a trial to use them . I had used intermittent ADT for years, was tired of it due to side effects and wanted something that worked without the side effects so I could stay on it without the need for vacations. See my profile for details.

In the USA, no problem. I was on them for 4 years, insurance paid for them after the MO prescribed them, yes some MO's might be reluctant to do so but usually not an issue

Same here, in USA, my oncologist prescribed them for ADT SE’s and I’ve used them for almost 5 years now. Insurance covers them so does Medicare drug plan.

Ed

You can use them on label for ADT side effects.

Break60
Break60 in reply to cesces

And you can use them INSTEAD of ADT to reduce T to castrates levels without the side effects of ADT as I said elsewhere. See my profile.

cesces
cesces in reply to Break60

Then, I believe you are using them off label, though maybe not.

Are they officially approved by the FDA for treatment of cancer? Either they are or they aren't. If you have a prescription, maybe you can look at the label and see.

Break60
Break60 in reply to cesces

See this link: ncbi.nlm.nih.gov/pmc/articl...

cesces
cesces in reply to Break60

That is actually sort of irrelevant if your goal is to get o Doc to prescribe it.

If you can show that the use is on label, you should be able to get a Doc to issue a prescription for it.

If it is off label, you need to find a Doc already familiar with the research who is inclined to prescribe it for off label use.

So does anyone know what the current approved on-label uses for it are?

Break60
Break60 in reply to cesces

For women with post menopause problems.

Break60
Break60 in reply to Break60

See Sandoz press release for patches I use: sandoz.com/news/media-relea...

Break60
Break60 in reply to cesces

They are off label but they work just like a lot of meds that work are off label. There is in fact an arm of the STAMPEDE trial which is comparing them to lhrh agonists ( SOC ADT) . Whether or not the results will be submitted to the FDA for approval is anyone’s guess. I don’t care. They are way better than Lupron and there ilk.

cesanon
cesanon in reply to Break60

"They are off label but they work just like a lot of meds that work are off label"

Sure, but it's just harder to get the doc to issue the prescription for off label use.

Break60
Break60 in reply to cesanon

My urologist has used DES bank before it was shown to cause some guys CV problems. When I asked him about the patches, which don’t cause CV problems and showed him the research he called around and approved them. After my experience, he has switched all of his patients off Lupron and onto the patches!!

cesces
cesces in reply to Break60

Sure.

It's just a way way way lot harder to get an average Doc to prescribe off label.

It's hard to shop around for a Doc that will do it. What do you do, call and query their receptionist?

I took several clinical study documents on Estrogen patches to my Oncologist who read them and agreed it seemed a reasonable plan.Have been on them for 3 years with PSA and Testosterone now undetectable.

I have monthly bloodwork at Lifelabs for PSA, Estrogen and Testosterone which I can see online and see my Oncologist every three months to review status.

No night sweats, no heart palpitations just a bit on man boobs so all seems to be very good for me.

Good luck

Ahk1
Ahk1 in reply to petercraig2

Does your doc in the NY area?

petercraig2
petercraig2 in reply to Ahk1

No, I'm in Canada outside of Toronto with a very supportive Oncologist.

I have to pay the full cost for patches as it is not considered a Standard Therapy here but hoping that will change with completion of Clinical Trials and favourable outcome.

Yet another voice to say that it certainly is doable, at least in the US. My husband's oncologist willingly prescribed them and insurance paid for the patches -- over a multi-year period. Our initial approach as as with @petercraig2, we first discussed the PATCH trial in the UK. We also had some correspondence with Richard Wassersug. He has international contacts and may be able to offer suggestions as well.

Break60
Break60 in reply to dogstar1

I spoke with Richard as well. He was a co author of the ADT book and has used estradiol for 15 years!

Ahk1
Ahk1 in reply to Break60

I have a question break60. I am going to ask my Uro for them but aside from the prescription, when psa starts to rise on them , can you go to the usual route of regular ADT like lubron? Will the use of estrogen patches makes the resistance of normal ADT sets in earlier and one becomes castrate resistance. I am thinking ahead when time comes to use the usual stuff, any problem there? Thanks

Break60
Break60 in reply to Ahk1

I don’t see why not . But ask an expert like Dr Wassersug . See his post below.

To be clear, the ADT Educational Program doesn't endorse transdermal estradiol (tE2) for ADT, although I personal have used it. As for getting MD support for a patient wishing to try it, I did what petercraig2 suggests above. I brought the key papers on "estrogen and ADT" published in the medical literature to my oncologist and said, "I would like to try this. Could you please look over these papers over and let me know what you think of it?"

That worked.

The number of medical papers endorsing tE2 as a form of ADT are growing. However it is not something that is safe for everyone. The pros and cons are discussed in the ADT book. A patient who, for example, who has estrogen sensitive PCa, would be ill-advised in my opinion to go on tE2 for ADT.

One other personal comment, which I have made before, is that I have used both the patches and the gel product. I find the gel product easier to manage.

If folks want more information they are welcome to contact me directly through my regular email.

Richard Wassersug

LIFEonADT.com

Myriammole
Myriammole in reply to Wassersug

How can you know if you have an estrogen sensitive PCa?

Break60
Break60 in reply to Myriammole

All PCa is androgen sensitive. Read ncbi.nlm.nih.gov/pmc/articl...

Myriammole
Myriammole in reply to Break60

yes, but Wassersug says: he would not recommend ESTROGEN therapy if cancer estrogen sensitive. So how to know?

Break60
Break60 in reply to Myriammole

Myriammole

My urologist prescribed estradiol patches before I had a genetic test for known cancer genes which are inheritable. So he wasn’t concerned about being “ estrogen sensitive “ whatever that means.

I later had a genetic test which found I had no inheritable cancer genes. The purpose had nothing to do with finding out if estradiol was ok for me; it was all about me trying to determine if my two sons and three grandsons were at risk for PCa because of me. Thankfully they’re not at risk!

j-o-h-n
j-o-h-n in reply to Break60

3 loud cheers for your two sons and three grandsons..... (lucky guys)

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/08/2019 7:24 PM DST

Break60
Break60 in reply to j-o-h-n

Thank you sir!

Ahk1
Ahk1 in reply to Wassersug

Dr. Wassersug,

One question please: if I use the patches and some day it stops working and I have to switch to normal adt like Lupron, etc. will the resistance of Lupron sets in earlier becuse I already had used the patches before? I am very concerned about this because I like to keep these Lupron and the like to use them in a rainy day. Thank you very much

Wassersug
Wassersug in reply to Ahk1

Dear Ahk1,

I do not know any published data which directly answer the question you ask. But standard ADT with LHRH agonists (and antagonists) shut off the signal from the pituitary gland to the testicles, which tell the testes to make testosterone. Estradiol shuts off the same signals. Thus, if the estradiol no longer works, the LHRH drugs are similarly likely to no longer work.

The case for transdermal estradiol over the LHRH drugs is NOT that it has a fundamentally different mechanism than the LHRH drugs for androgen suppression. It doesn't. The case for using it is it that it has a different side effect profile.

So, with the LHRH drugs most patients can expect hot flashes and increased risk of osteoporosis. With transdermal estradiol, they can expect some breast development and nipple sensitivity, but are protected from hot flashes and are less likely to experience bone mineral loss.

There is evidence that estradiol elevate libido above the castrate level achieved with the LHRH drugs...but not back up to the level seen in men not on ADT.

If one has a family history of estrogen-sensitive breast or prostate cancer (e.g., BRCA 2 mutation), ADT with an estrogen compound is not a good idea.

Personally, (as I have said before) I have found that transdermal estradiol is easier to manage with the gel product than with the patches.

Richard W.

Ahk1
Ahk1 in reply to Wassersug

Thank you very much dr. Wassersug for your explnation. I really misunderstood the use of estrogen initially. I woke up this morning ready to go see my doctor to get but now I changed my mind. If IT IS adt then I think I a not ready yet for adt use. I thought it might be something to slow the cancer and when it stops working I can go to the heavy adt, this way I can avoid the resistance of Lupron and the like and get more years on adt between the estrogen and the Lupron. So, if I understood you correctly, if the patches stops working and I switch to Lupron it will not work either, am I correct?

Thanks again

Wassersug
Wassersug in reply to Ahk1

You are generally correct. High dose transdermal estradiol, when used specifically to suppress testosterone production, does so in a similar fashion to the standard LHRH drugs. It is thus a form of ADT and not an alternative to ADT.

There may though be differences in survival and outcomes related to other complexities associated with where else (than the testes) that the drugs have receptors in the body. This would include the brain and in the cardiovascular system. As such, there may be arguments for switching from one ADT agent to another, if problems arise or risks are high in a particular area. These would pertain primarily to side effect risks, such as fatigue, hot flashes, or cardiovascular disease, than androgen suppression per se.

If you or others are concerned about managing ADT side effects, I can discuss that with you off-line. Just contact me at my regular email address, which is my first and last names with a dot between them then the "at" sign followed by "ubc.ca".

Richard W.

As with breast cancer, one can get genetic testing for high risk, estrogen-sensitive cancers (like those associate with BRCA2 mutations).

Myriammole
Myriammole in reply to Wassersug

He did a foundation one test, nothing noted about it. No mutations.

Let's know if his oncologist still objects to hm trying tE2.

I just asked my urologist and he approved them . He used DES before they were stopped due to increased cv events but patches have proven in the UK patch trial to have no more risk than adt and have less rusk of osteoporosis.

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