Prostate cancer metastacized to the Iliac lymph node

Posted by monahanirvingjames @monahanirvingjames, Apr 14 12:27pm

I have metastatic prostate cancer in my iliad lymph node. They want to radiate and have me take lupron. I am OK with the radiation but concerned about the effects of the lupron. No doctor can yet explain the benefit versus loss of quality of life risks. They believe both treatments will produce better results but I have not confirmed that based on my research. Any advice is appreciated. Thanks, Jim

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Profile picture for surftohealth88 @surftohealth88

Yes , as @mjp0512 said, treatment should be personalized according to many mentioned parameters.

Some of those are : age, comorbidities, Decipher, gleason, time lapsed before recurrence, germ-line genetic results etc etc.

If your original diagnosis did not include high risk features (gleason over 8, cribriform, IDC, EPE, positive margin, short doubling time etc.) you might need only 6 mos of ADT. You may ask for Orgovyx which has lower incidence of side effects and clears faster from the body.

Also, there are new studies that show that Estradiol patch can be equally effective so you might ask about that - some doctors are already open to prescribing it although they are rare as "unicorns" at present time .

Wishing you the best of luck and complete eradication of cancer 🍀.

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@surftohealth88 I have inquired about Estradiol at three different cancer centers, including the one I get treatment from, and they are all willing to prescribe it. I don't think it is rare any longer. However, my MO says that the patients she has prescribed it for have reported severe fatigue.

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I was Gleason 7, 3 tumors in prostate and both R/L Iliac nodes lighting up in PSMA PET scan. I took 44 weekday radiation treatments and am in my 16th month of Orgovyx out of 18 total. @jeff provided helpful information. I have experienced nearly every side effect and am being treated for radiation proctitis. I hope to be finished with treatment and healing by my late-summer 75th birthday and have 5-10 mostly cancer free years. We‘ll see. Talk with your oncologist(s) about your longevity and quality of life goals and options, and don’t be rushed or pressured. All the best!

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Profile picture for mrkoji @mrkoji

@surftohealth88 I have inquired about Estradiol at three different cancer centers, including the one I get treatment from, and they are all willing to prescribe it. I don't think it is rare any longer. However, my MO says that the patients she has prescribed it for have reported severe fatigue.

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@mrkoji

WOW ! Thanks so much for this info 🙏 , that is so encouraging !!!

Are you on the West or East coast ? Yes, estradiol has it's own SA but they are nothing in comparison with regular ADT - more so, estradiol IMPROVES bone density, cognitive function, causes more rapid testosterone decline , less fat gain, and improves insulin effectiveness - I mean - I have no idea WHY medical community is not jumping on those new findings in PATCH trail for god's sake 🙁 ???

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Profile picture for mrkoji @mrkoji

@surftohealth88 I have inquired about Estradiol at three different cancer centers, including the one I get treatment from, and they are all willing to prescribe it. I don't think it is rare any longer. However, my MO says that the patients she has prescribed it for have reported severe fatigue.

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@mrkoji
Must admit that is a side effect. I’ve not heard of yet, At least from the people, I know that are on it. The fact is it reduces your testosterone down just like ADT and that can cause fatigue.

If you go over to the ancan.org Website and Search for estrodiol or Wassersug You can find one hour talks about going on estradiol. I will give you a better idea people’s experiences.

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Profile picture for surftohealth88 @surftohealth88

@mrkoji

WOW ! Thanks so much for this info 🙏 , that is so encouraging !!!

Are you on the West or East coast ? Yes, estradiol has it's own SA but they are nothing in comparison with regular ADT - more so, estradiol IMPROVES bone density, cognitive function, causes more rapid testosterone decline , less fat gain, and improves insulin effectiveness - I mean - I have no idea WHY medical community is not jumping on those new findings in PATCH trail for god's sake 🙁 ???

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@surftohealth88 $$$$$$$$
Phil

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Profile picture for Jeff Marchi @jeffmarc

@mrkoji
Must admit that is a side effect. I’ve not heard of yet, At least from the people, I know that are on it. The fact is it reduces your testosterone down just like ADT and that can cause fatigue.

If you go over to the ancan.org Website and Search for estrodiol or Wassersug You can find one hour talks about going on estradiol. I will give you a better idea people’s experiences.

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@jeffmarc I am likely going to be on it late next month so we shall see how it affects me. When I was on Eligard, I had no fatigue. However, I have osteoporosis and my MO agreed that Estradiol is likely to be a better choice.

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Profile picture for mrkoji @mrkoji

@jeffmarc I am likely going to be on it late next month so we shall see how it affects me. When I was on Eligard, I had no fatigue. However, I have osteoporosis and my MO agreed that Estradiol is likely to be a better choice.

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@mrkoji
Would you be so kind to share names of centers that offered Estradiol ? 🙏

Thanks so much in advance 🌺

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Profile picture for surftohealth88 @surftohealth88

@mrkoji
Would you be so kind to share names of centers that offered Estradiol ? 🙏

Thanks so much in advance 🌺

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@surftohealth88 I am getting treatment at Fred Hutch Cancer Research Center in Seattle. They currently offer it as an option. The others I have no current confirmation, so I would prefer not to list them but they are in California.

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Profile picture for mrkoji @mrkoji

@surftohealth88 I am getting treatment at Fred Hutch Cancer Research Center in Seattle. They currently offer it as an option. The others I have no current confirmation, so I would prefer not to list them but they are in California.

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@mrkoji
Thanks so much for the info 👍 : )))

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Profile picture for Jeff Marchi @jeffmarc

I have been on ADT for eight years. I live a normal life. I get occasional hot flashes which I know how to manage and I exercise to keep the effects of the ADT from being a problem.

You might ask to have Orgovyx instead of Lupron. It’s a pill you take once a day instead of an injection that lasts for three or six months. When you stop taking your testosterone, comes back a lot quicker. Many people feel it has fewer side effects, Including me.

How long does he want you on Lupron.. When I had my six month shot of lupron two months before my salvage radiation I didn’t even notice any side effects. When I had to go on it full-time about three years later, I had really severe hot flashes right away. There are number of solutions for that. If you have to stay on ADT for a long time, then there are a number of side effects. You need to be aware of.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I jog on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. If you have this problem, we can give you a list of drugs that can stop it. Ae doctor at a recent conference, put out a big list. I wear an Embrlabs.com Wave 2 device and it works well, reducing the hot flashes and stopping them almost completely at night.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily. Acupuncture works for some people.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none. As it turns out if you are on ADT, you will find it very hard to lose weight. It’s one of the problems with low testosterone. Skipping meals isn’t the answer because your body will burn muscle instead of fat trying to handle the Stress of not enough food.

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@jeffmarc You are always so generous in sharing your story and opinions. Very helpful to me. Thank you

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