Affordable ADT...Transdermal estrogen questions

[E2-Guy]

Hello everyone, I just became familiar with this site a few minutes ago and I'm finding some very interesting and informative posts. Since I'm an American living in Thailand and it is 2:00 AM, I will continue adding info and pick your brains tomorrow. My best to all of you and many thanks for your contributions. Goodnight/G'day, Ron

[Wassersug]

What are your transdermal estradiol questions?

[E2-Guy in reply to Wassersug]

Dear Richard,

Thank you so much for your reply. Since I just joined the blog last night, I'm going to search the existing posts before I waste anyone's time to answer questions that may have already been answered. I have recently had a 68Ga-PSMA-PET/CT scan performed in Melbourne AU to hopefully locate the source of my rising PSA...currently at 1.1. I am 12 years post-op robotic RP and have had no adjuvant therapy. The gallium scan indicated three affected lymph nodes along my sacral vertebra which my urologist who did my RP thinks he can resect; however, two other urologists believe that more nodes are involved and surgery or radiation would be only palliative. I am living in Thailand and my US Medicare Ins. does not cover me here. I can't be going back to the States every four to six months for ADT injections so I am looking into the possibility of using some form of transdermal estradiol. Many types of oral estrogen are available here; however, I have only been able to find 'Estrogel' and no one knows how to monitor the usage. I have been told that patches can be imported at excessive prices. Many thanks again and I will ask some questions after I become a bit more informed. Kind regards, Ron

[Wassersug in reply to E2-Guy]

RonRon,

I'm a slow typist and, if long replies are appropriate, I suggest that we aim to Skype rather than correspond on this forum.

I personally have found estrogel easier to use, to manage, that the estradiol patches If you are looking for transdermal estradiol (TE2) for androgen-deprivation, then you might want to look at the wealth of data published for the PATCH study in the UK. You can pull up the abstracts for all those papers in PubMed and the full texts for many, if not most, are accessible there as well.

Two things to note: Some folks on this site do believe in the value or safety of tE2 for PSA control. But they may not have read all the PATCH study papers and preclinical work done with rodent models. So far, tE2 appears to be as safe as the LHRH drugs, like Lucrin (=Lupron) for PSA control in patients who are not castrate resistant (i.e., who still have androgen sensitive disease).

However, if you are in the mCRPC range, then estrogens (like anti-androgens; e.g., bicalutamide) can go from being good to bad players, activating rather than locking up androgen receptors.

It will be a few more years before the overall and disease specific survival for PATCH patients are published. So far the data suggest that tE2 has as good PSA control as LHRH agonists and better quality of life.

If this is too technical, we can arrange a time to Skype and I can try to walk you through it.

Richard W.

[Dan59 in reply to Wassersug]

Richard, Thank You, I believe you answered my question here , saying they estrogens can go from good to bad players In Castrate resistant disease, It worked well for many years stabilizing my MCRPC.

Dan

[E2-Guy in reply to Wassersug]

Dear Dr. Wassersug,

I can't thank you enough for your detailed reply...I didn't expect anyone to spend this much time answering my question. I also appreciate the Skype offer and I may bother you via it after I do more studying regarding the information you have already given me. I do understand much of what you have stated; however, I don't want to take up any more of your time until I am as familiar with the studies and terms as I can be. You are so kind!

Ron

[Sisira in reply to Wassersug]

Richard, you are very correct.

Sisira

[E2-Guy in reply to Wassersug]

Hi Richard, Would it be possible for me to call you? My email address is: [e-mail]

[Dan59 in reply to Wassersug]

Richard, Do you think it is possible to have a withdrawl response from TDE, As a long time user of the patch.

Thank You ,

Dan

[Wassersug in reply to Dan59]

Dan,

What do you mean by a "withdrawal response"?

[Dan59 in reply to Wassersug]

I mean that when I stopped using it I actually got a significant reduction in psa, I was going through a surgery that got complicated to get a genetic specimen for testing at the time and not really sure which one caused my psa to drop from 86 to 56. I was using it as an add on to Zand X as I had done in the past with other drugs such as Keto and Nilandron, but stopped just before surgery. Thank You for listening.

Dan

[Wassersug in reply to Dan59]

Dan,

Based on the drugs you were on and your high PSA, I gather you are in castrate resistant territory. I have no data on this, but I can very well imagine that you could get a PSA drop for awhile after abruptly stopping E2. That would be equivalent to a drop with stopping Casodex when there is a fast rising PSA. It is consistent with my view that tE2 is not likely to be helpful when one is in castrate resistant territory.

For folks reading this, you should know that I am NOT an MD. My opinions are based on my own status as a PCa patients and my research as a scientist who has worked in a variety of biology related fields.

[Dan59 in reply to Wassersug]

Thank You for the reply Richard, and for your research as a fellow patient.

Dan

[Sisira]

Hi Ron,

Welcome to our club. Next time when you post please please give us the following information : Gleason Sum Score, PSA before RP, PSA highest, PSA lowest, Surgical Margins, Cancer Staging ( TNM ) and your age now.

Don't worry many in this forum will help you.

Bye for now.

Sisira

[E2-Guy in reply to Sisira]

Dear Sisira,

Thank you for your reply...I will submit more info in the next day or two. It is great to know that there are so many folks on this forum willing to help.

Kind regards,

Ron

[Hidden]

Jeez, why did it have to be ronron. A short story: My sister in law was married twice, both were a Ron. When I met the second one, he called me JoeJoe, I was like, huh!?! So, being the second Ron, he got the name RonRon. That was about thirty years ago, and it stuck.

Now, how you doing? Welcome to the club. I noticed an issue with the above posts, you didn't mention any patches, and no one named Richard wrote a post from what I'm looking at. So, I don't know where this will go.

Joe

I also see that Dan59 read it, where is it?

[Dan59 in reply to Hidden]

Richard and Dr Wassersug are the same. He is one of the leaders in TDE, He has done very much research, and has a lot of info on TDE.

[Hidden in reply to Dan59]

Man was I confused there for a minute. The problem is Flash Gordon is on the tube, and I just love Queen's music. Yea, that's it. lol

Joe

[E2-Guy in reply to Hidden]

Hi Joe,

Thanks for the funny little story! I couldn't get the user name "Ron" or "ron" or "RonRon" or "ronron" so I chose "ronronHU".

Great to be on this forum with guys like you!

Best regards,

Ron

[MelaniePaul]

Good to know! I was wondering who Richard is and looking back through all the posts in case I missed something!

[E2-Guy]

I want to thank all of you for your kind replies. This is the message that I sent to Dr. Wassersug ("Richard"...I didn't know that he is a doctor) today:

Dear Richard,

Thank you so much for your reply. Since I just joined the blog last night, I'm am going to search the existing posts before I waste anyone's time to answer questions that may have already been answered. I have recently had a 68Ga-PSMA-PET/CT scan performed in Melbourne AU to hopefully locate the source of my rising PSA...currently at 1.1. I am 12 years post-op robotic RP and have had no adjuvant therapy. The gallium scan indicated three affected lymph nodes along my sacral vertebra which my urologist who did my RP thinks he can resect; however, two other urologists believe that more nodes are involved and surgery or radiation would be only palliative. I am living in Thailand and my US Medicare Ins. does not cover me here. I can't be going back to the States every four to six months for ADT injections so I am looking into the possibility of using some form of transdermal estradiol.

Thanks again and goodnight/g'day, Ron

[gusgold]

Ron,

I have a friend in Thailand and he has no problem getting Lupron - Zytiga - Xtandi...Lupron is not very expensive...the other 2 are but help is available from the manufacturer..I am not ready for Xtandi but was quoted $10 a month

Gus

[Hidden in reply to gusgold]

So, is the Xtandi $10 before, or after the help from the manufacturer?

[pmichael in reply to Hidden]

In the USA, Xtandi is $9,000 per month without insurance or help. Most insurance covers part of it. Pmichael

[docbulldog in reply to gusgold]

I just talked to the manufacturer of Xtandi and was told household income had to be below 300% of the National Poverty level or below approximately $57000 for a two adult household, I didn't qualify, was over by about $11,000. So my monthly cost would be about $2900. Can't do it (unless we sell our home)so will seek other alternatives after I finish Provenge.

[E2-Guy in reply to docbulldog]

Dear Doc,

Gusgold stated that Xtandi can be administered in Thailand for about $10/month...I live in Thailand and have not been able to find anywhere that offers it for anything near that price. I will keep you apprised if I find any reasonable vendors.

[Hidden in reply to docbulldog]

Prices can be a big issue. Have you checked into manufacturer assistance? Does your MO have any advice?

If it helps, you could go black market. It can be a risk but I haven't heard about any fake oral cancer drugs. India makes generic knockoff Xtandi and Zytiga, and others like Lupron. I think Xtandi is a couple of hundred bucks a month.

[E2-Guy]

Dear Gus,

Thank you for the reply. I just visited a urologist at Bangkok Hospital (a private hospital) on Monday and he has patients on Zoladex which he said is about $1000 US per injection. I know that there are many drugs produced in Thailand that are very reasonable at the government hospitals. I am going to do much more research before I shell out that kind of money!

Thanks again,

Ron

[gusgold in reply to E2-Guy]

How many months...Lupron comes in 3 month....4 month...6 month

[E2-Guy in reply to gusgold]

Hi Gus, The Zoladex injections at Bangkok Hospital are six month regimens. Would it be possible to contact your friend here since I am unable to find the extremely low prices that you have been quoted on ADT drugs? It is difficult to believe that these modern drugs would be almost free here in Thailand. Thai people can get help/medication at government hospitals for ฿30 (about $1.00 US) per visit/prescription; however, foreigners pay much, much higher prices. Thanking you in advance, Ron

[gusgold in reply to E2-Guy]

6 months for a $1000 is pretty cheap

[E2-Guy]

Thank you Nalakrats!

Kind regards,

Ron

[E2-Guy]

Yes, about what my Medicare deductible would be if I were to be treated in the US.

[E2-Guy]

ronronHU’s history:

I am a 74 year old American, currently living in Thailand with a significant family PCa history (grandfather, father and his two brothers, and my older brother). I was diagnosed with PCa 13 years ago, had a robotic RP 12½ years ago, 5.2 pre-op PSA, post-op Gleason 4+4, T3a staging, negative margins, no adjuvant therapy, and a slowly rising PSA from 0.03 to 1.1 as of 6/2017. I have been trying to find a sensitive scan that would locate PCa recurrence with a relatively low PSA (most doctors agree that recurrence occurs at about 0.2). To the best of my knowledge, the 68Ga-PSMA-PET/CT and the F-18-PSMA PET/CT scans are the most sensitive and are valid with PSAs above 0.7. The Choline-C-11-PET scan requires a minimum PSA level of close to 2.0; consequently, I opted for the gallium scan (lowest price is in Melbourne AU…$600 US). I had the scan performed in May of 2017 and it identified three mild to moderately intense PSMA avid pre sacral nodes. Surgery or Radiation don’t appear to be viable options for the following reasons: Surgery would be technically difficult, could result in sequelae and (most importantly) it is likely that other LN's may be involved that are too small to show uptake on the scan. Radiation to the area could be done, but again it has the same concerns as to whether the identified LN's are truly the only ones involved. The doctors are now suggesting ADT as my best option.

Since any of the ‘modern’ ADT drugs are quite expensive (my Medicare ins. doesn’t cover me when out of the US) and they appear to have many side effects, I am looking into estradiol (transdermal hormone therapy) as an alternative. My father and his two brothers (all had RPs) survived many years on oral estrogen (perhaps DES) and passed away in their 80s. From researching estrogen therapy I am finding that oral estrogen significantly increases blood clotting and cardio risks; however, transdermal therapy because it is absorbed directly into the blood and bypasses the liver has a lower cardio risk factor. Richard Wassersug is an authority on this subject and has replied to my posts with some very informative and detailed input.

My thanks to all of you that have replied,

Ron

[ctarleton]

Hello Ron,

Welcome. With so many family members with prostate cancer you might consider genetic testing for inherited germ line mutations. The results might open more doors for future treatment options. The results might also be valuable information for any of your offspring, or your nieces or nephews.

Charles

[E2-Guy]

Thank you Charles for your suggestion! I do have a 36 year old son that I am very concerned about. Since I am an old man and have been fortunate enough to revolve around the sun a 'few' times, I am very much dedicated to sharing my PCa experiences with younger men in hopes that I can save AT LEAST one life. I belong to an X-Pats group here in Thailand and occasionally share my history with the audience. I am always surprised at how many men know so little about PCa. After the meetings I am usually approached by at least six to 10 men asking questions about the subject. One of the most frequently asked questions is: "Can you still have an orgasm?" LOL!

Thanks again for your reply...my best to you,

Ron

[E2-Guy]

Ron's additional history:

I am a 74 year old American, currently living in Thailand with significant family PCa history (grandfather, father and his two brothers, and my older brother). One piece of interesting info regarding my older brother (which I just found out and find it difficult to believe) is that he was refused by a life ins. company at age 58 because his PSA was at 2.1. They told him to get an opinion from a urologist and based on a favorable report they would reconsider insuring him. The urologist offered to give him a letter stating that he believed it was just a case of BPH; however, my brother (because of family history) asked to have a biopsy performed. The biopsy came back with a Geason of 3+3; consequently, he decided on a radical and 20 years later has an undetectable PSA.

Knowing that it was just a matter of time before I developed the disease ( not will I? ), I had been studying PCa for at least 15 years before I was diagnosed. I was very diligent about annual check-ups (was a pilot), took every supplement ever recommended, e.g., saw palmetto, zinc, selenium, lycopene, ate a healthy diet, never smoked, am a non-drinker, lifted weights since I was 12, never overweight, etc. My PSA in my mid 40s was about 1.0 and continued to climb slowly reaching 3.2 at age 59 and then rapidly increasing over the next 1½ years to about 5.0. Since I never had any symptoms, i.e., frequent urination (never had to get up during the night), DRE's indicated that my prostate was of normal size, no bumps, etc., I chose ‘watchful waiting’ until my PSA started rising quickly. One urologist speculated that perhaps some of the supplements may have masked symptoms.

I was diagnosed with PCa at 61, had a robotic RP shortly after, 5.2 pre-op PSA, post-op Gleason 4+4, T3a staging, negative margins, no adjuvant therapy, and a slowly rising PSA from 0.03 to 1.1 as of 6/2017. My surgeon estimated that I had PCa for several years prior to my diagnosis. That along with my brother’s history has definitely added a ‘curveball’ into everything that I have ever read regarding PSA levels below 4.0!

Since my PSA is now far above the level at which most doctors agree that recurrence is probable (0.2), I have been searching for a sensitive scan that would locate the rising PSA source. To the best of my knowledge, the 68Ga-PSMA-PET/CT and the F-18-PSMA PET/CT scans are the most sensitive and are valid with PSAs above 0.7. The Choline-C-11-PET scan requires a minimum PSA level of close to 2.0; consequently, I opted for the gallium scan (lowest price is in Melbourne AU…$600 US). I had the scan performed in May of 2017 and it identified three mild to moderately intense PSMA avid pre sacral nodes. Surgery or Radiation don’t appear to be viable options for the following reasons: Surgery would be technically difficult, could result in sequelae and (most importantly) it is likely that other LN's might be involved that are too small to show uptake on the scan. Radiation to the area could be done, but again it has the same concerns as to whether the identified LN's are truly the only ones involved. The doctors are now suggesting ADT as my best option.

Since most of the ‘modern’ ADT drugs are quite expensive (my Medicare ins. doesn’t cover me when out of the US) and they appear to have many side effects, I am looking into estradiol (primarily transdermal ADT) as an alternative. My father and his two brothers (all had RP's) survived for many years on estradiol (perhaps DES) and passed away in their 80s. From researching estrogen therapy I am finding that oral estradiol significantly increases blood clotting and cardio risks; however, transdermal therapy because it is absorbed directly into the blood and bypasses the liver has a lower cardio risk factor. Richard Wassersug is an authority on this subject and has replied to my posts with some very informative and detailed input.

My thanks to all that have replied,

Ron