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Stilbestrol

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User
Posted 07 Feb 2023 at 23:33

Hi there,

anyone on Stilbestrol tabs?   If so, do you get hot flushes, they are not listed in the notes. (Yes, I’m also on Zoladex, but these flushes seem to start in a different area)

I think I’m now on my final meds as I m now under the Palliative Care Team, which my Onco didn’t mention last week, but I was telephoned this morning to ask my permission!

 

will I make 18years since surgery, 51 weeks to find out!

 

chris.

User
Posted 07 Feb 2023 at 23:33

Hi there,

anyone on Stilbestrol tabs?   If so, do you get hot flushes, they are not listed in the notes. (Yes, I’m also on Zoladex, but these flushes seem to start in a different area)

I think I’m now on my final meds as I m now under the Palliative Care Team, which my Onco didn’t mention last week, but I was telephoned this morning to ask my permission!

 

will I make 18years since surgery, 51 weeks to find out!

 

chris.

User
Posted 09 Feb 2023 at 11:52
George, good to see you posting although sad that it is because of Exbus's news :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jul 2023 at 08:28
Update,

I now have a referral to the Breast Clinic, in 2 weeks, could be a side effect of the Stilboestrol but!

I’ve got itchy and sore Nipples and hardening underneath one, so needs checking says GP, he is also writing to my Onco about the Stilboestrol.

“And now the end is near, and I face the final curtain” well not yet I hope, I can carry on the fight!

Chris

User
Posted 06 Aug 2023 at 13:09

Sorry to hear about the problems with Stilbestrol.

Another option for an estrogenic hormone therapy might be be Estradiol patches, which are absorbed through the skin. Something you could ask your onco about. They are used as part of the PATCH trial in the UK, but that's a different case where they're used instead of the Zoladex (or other) HT injection. In the US, they're used off-label (and at a lower dose) to reduce hot flushes and osteoporosis risk while also being on HT injections.

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User
Posted 08 Feb 2023 at 14:48
Palliative Care, Chris?

Do they know who they're talking to?

You're a giant my dear mate.

Stay as strong as you've always been.

You and Shirley a shining examples to us all.

I've mailed you and also posted on B2Pca.

Love to you both always,

George & Lynn

B2PCa
User
Posted 09 Feb 2023 at 03:19
Thanks George.

It is early days yet, I’d still like to see my 80th birthday this year and even my Shirley reach her 90th birthday in 2025!

I feel a lot better in myself since stopping Chemo last September, enforced because of Liver problems, CT found nothing abnormal just more bone Mets and an enlarged Lymph node.

Bloods and Onco phone call in 3 months.

Chris.

User
Posted 09 Feb 2023 at 04:49

I don't believe Diethylstilbestrol will cause hot flushes, and if you stay on Zoladex too (not clear from what you say if you will or not), I think the Diethylstilbestrol will stop the hot flushes Zoladex causes, but I don't know how quickly that will happen. It should also stop progression of osteoporosis.

These are side effects from the loss of estrogens, which in men are manufactured from testosterone, and hence also lost when on ADT. Diethylstilbestrol will compensate for the loss of estrogens, and should reverse these side effects.

Chris, I hope this works well for you.

User
Posted 09 Feb 2023 at 05:15
Thank you Andy.

Yes, Onco wants me to carry on my present medication, Zoladex, Ibandronic acid, Dexamethasone, Adcal-D3 etc.

Chris.

User
Posted 09 Feb 2023 at 11:48
So sorry to see this Exbus - I have messaged Devonmaid as John was on Stilboestrol for a long time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Feb 2023 at 11:52
George, good to see you posting although sad that it is because of Exbus's news :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Feb 2023 at 22:47
Lyn, yes Devonmaid did mention that when I posted that Onco thought it would be my last choice of treatment in the summer.

I’m hoping it will give me a year or so more time here, I still post advice here and elsewhere, so I have a use!

I don’t think I will manage, like your Dad Lyn, 25 years but there is hope.

Chris.

User
Posted 13 Feb 2023 at 02:35

Originally Posted by: Online Community Member

It is early days yet, I’d still like to see my 80th birthday this year and even my Shirley reach her 90th birthday in 2025!

Chris.

 

Oooooh, I never knew that Shirley was a cougar!!!! 

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 May 2023 at 23:01
Update on Stilbestrol, now increased to 3 x 1mg tablets a day as PSA has now risen to 51.72, Onco says if PSA is still rising when I speak to him next, August, then “it’s worrying “ he said! I asked him for a prognosis, he wouldn’t answer.

Still on Ibandronic Acid pills 5 times a week, Dexamethasone daily and Zoladex every 12weeks, next in June, oh and I’m due my 8th Covid jab next week!

User
Posted 10 Jul 2023 at 08:28
Update,

I now have a referral to the Breast Clinic, in 2 weeks, could be a side effect of the Stilboestrol but!

I’ve got itchy and sore Nipples and hardening underneath one, so needs checking says GP, he is also writing to my Onco about the Stilboestrol.

“And now the end is near, and I face the final curtain” well not yet I hope, I can carry on the fight!

Chris

User
Posted 10 Jul 2023 at 18:39

And you will have "done it your way" Chris, not that'll be anytime soon.

Itchy nipples can be a bugger and I sympathise.

ATB

 

Roger
User
Posted 06 Aug 2023 at 09:57
Well I didn’t even manage 6months of Stilboestrol because for the last few weeks even just trying to take 1, rather than 3, I sick it up!

So I didn’t get to Breast Clinic, another try this Tuesday then Bloods on Wednesday.

What is next, phone call with Onco next week! But me thinks it is the end of treatment.

Chris.

User
Posted 06 Aug 2023 at 13:09

Sorry to hear about the problems with Stilbestrol.

Another option for an estrogenic hormone therapy might be be Estradiol patches, which are absorbed through the skin. Something you could ask your onco about. They are used as part of the PATCH trial in the UK, but that's a different case where they're used instead of the Zoladex (or other) HT injection. In the US, they're used off-label (and at a lower dose) to reduce hot flushes and osteoporosis risk while also being on HT injections.

User
Posted 09 Aug 2023 at 10:07
I had a mammogram and ultrasound yesterday as GP wasn’t sure if hardening was caused by Stilboestrol side effects, or worse, and yes my problem was caused be the Stilboestrol, Gynaecomastia, but according to the Ultrasound Surgeon it can turn Cancerous, so it was worth checking.

Bloods today, I fully expect PSA to be up again, as I can feel as if the little sods have spread.

Chris

User
Posted 09 Aug 2023 at 15:08
Fingers crossed they haven't Exbus
 
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