Referrals?? : As you may know from my... - Advanced Prostate...

Advanced Prostate Cancer

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Referrals??

21 Replies

As you may know from my previous posts, I've been considering the estradiol patch, as the side effects of 4 years of ADT are mounting. (Spinal Fracture, Osteopenia, Fatigue, bone, joint and and muscle pain as well as general sick feeling. I have discussed on two occasions with my MO, and he is NOT receptive to e2 patch at all. He claims the cardio risks are still present like with oral estrogen. I need recommendations for a more progressive MO. I'm 60 miles Northwest of Philadelphia. My quality of life is diminishing, as I become more afraid of fractures, simply doing day to day activities.

To refresh my status, I was diagnosed in May 2019 stage 4b bone metastases to spine, ribs, neck, skull, shoulders, legs, and hips. Also present was innumerable metastases to the lungs. I started right away on Casodex, then Eligard, Zytiga, and prednisone, and later began monthly Xgeva. Xgeva has since been weened to every three months (April 2022), and within 6-7 months, I suffered my first Vertebral fracture (t-11) compression fracture "Osteoporotic".

I believe from what I've read, that the e2 Patch would give me tremendous benefit. Now I need to find a doctor willing to hear me.

Thanks all!

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21 Replies
Kaliber profile image
Kaliber

we seem to have similar adt experiences … parallel paths somewhat except for the broken bones ….. so far. After all the great things you hear and see ( Ronron ) on the group, about the e2 patch, I asked my oncologist as well. He was agasp at the question. Said my adt induced cardiac issues were so acute that it was totally out of the question.

All I could think of was : memba that Christmas movie , Christmas Story , where Ralphie wants a Red Ryder bb rifle, and everyone says he’ll shoot his eye out ??? He gets the rifle , finally after much angst, and promptly shoots his eye out !! Yayahahahaya yayahahahaya. Well … just say’in ❤️❤️❤️

Just no rest for the weak and weary.

in reply to Kaliber

....ha ha ha. YourADT induced cardio issues will be worse if we replace ADT with an estrogen patch🤣🤣🤣🤣🤣

Kaliber profile image
Kaliber in reply to

❤️❤️❤️

Ramp7 profile image
Ramp7

There are many studies out there that show the benefit of low dose estradiol. I convinced my MO and he wrote the script.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Ramp7

How long have you been on it? Have you not had any previous cardiac issues?

Ramp7 profile image
Ramp7 in reply to HopingForTheBest1

When applied on the surface of the skin, as mine is, it goes directly in to the blood stream and bypasses cardiac issues. The information is out there, well documented.

dhccpa profile image
dhccpa in reply to Ramp7

Anything in particular you put in front of your MO that convinced?

dhccpa profile image
dhccpa

I'm curious to see how this comes out. I'm in a similar boat, but I've had only Lupron for past 4.5 years.

Horse12888 profile image
Horse12888

If you Google Richard Wassersug and contact him, I'm sure he'll be able to help.

in reply to Horse12888

I watched a zoom meeting with him last week. He's an inspiration. Thanks for the reminder

Shams_Vjean profile image
Shams_Vjean in reply to

please let us know if Dr. Wassersug offers any suggestions regarding your provider search. Best of Luck!

lancer82801 profile image
lancer82801

I have been using only the estradiol patches since 8/22 worst side effect is breast enlargement but I consider it minor compared to osteoperosis and the other side effects of the standard ADT treatments. This approach has kept my PSA around 0.05 for the last 21/2 years. If you want to talk about it message me and I will be glad. Most of my history is posted The Patch trail I included is a good trial with good results.

Lance

Transdermal oestradiol for androgen suppression in prostate cancer: long-term cardiovascular outcomes from the randomised Prostate Adenocarcinoma Transcutaneous Hormone (PATCH) trial programme

thelancet.com/journals/lanc...

rsgdmd profile image
rsgdmd

I asked my MO about this as I'm considering it & she seemed OK with it. I assume if and when I ask for an Rx for this, she'll still be OK. I go to U of PA in Philadelphia. Dr Naomi Haas.

in reply to rsgdmd

PENN Medicine? , I'm also a Penn patient

in reply to rsgdmd

I was able to get an appointment with her for May 22

rsgdmd profile image
rsgdmd

yes - who do you see?

Dr James Patterson, he's at West Chester and Exton.

garyjp9 profile image
garyjp9

Have heard multiple recommendations for this doc at Fox Chase Cancer Center at Temple Univ. : foxchase.org/daniel-geynisman ; however, I have no idea about his stance on this issue. I finally was able to convince an endocrinologist to prescribe, but she is still reluctant to give me any E2 dose that causes breast buds or nipple tenderness, even though I tell her that is less of a concern than more fractures.

rsgdmd profile image
rsgdmd in reply to garyjp9

I have heard that radiation to the breasts can often prevent gynomastica. I think it takes a total of 12 greys, which isn't much. Tamoxifen can also be used if have it.

rsgdmd profile image
rsgdmd in reply to garyjp9

Saw Dr Geynisman for a 2nd opinion. Seemed really nice & up to date. If I was unhappy where I am, I would have no issues switching to him.

garyjp9 profile image
garyjp9

good to know. If I had the choice, I think I might opt for the radiation and avoid another hormone pill (tamoxifen).

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