Hormone Treatment Experience

Posted by mhordes @mhordes, Jul 14 12:02pm

Had my first visit today at MD Anderson Proton Center and the Dr ordered AlteraAI to see if Hormone Therapy would help

If so he is leaning to Hormone Therapy Light. Not sure what that means? Hormone Therapy does not look like fun!

Anyone have experience with ADT Light or just Hormone Md light? Are the side effects the same?

Thanks for any feedback

Mark H

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for heavyphil @heavyphil

Oh no I was just joking about getting hot flashes from watching the news!😅
My T came back to 688 3 mos after finishing Orgovyx.
Phil

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I should’ve realized that, The way you put it did look a little suspect 😀

Your testosterone sure came back aggressively. Gotta make you feel a little bit better, like normal!! Whatever that is after PC

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Profile picture for pjsatz @pjsatz

I believe ArteraAI tells if you are likely to benefit from the addition of Abiraterone to standard ADT like Lupron or Orgovyx. It compares your cell patterns to a database of cell patterns and outcomes from past studies. From what I understand it is not definitive but another data point to be considered. But the outcome of AteraAI does not affect the decision for standard ADT.

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The results of my ArteraAI test were:

"ST-ADT Biomarker: Positive. On average, patients with this result had significant risk reduction in distant metastasis with the addition short term androgen deprivation therapy."

The report itself says nothing about what type of ADT, and my RO recommended 6 months of Orgovyx, which I agreed to.

I believe you are right in how ArteraAI makes the determination.

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Profile picture for daveinflorida @daveinflorida

The results of my ArteraAI test were:

"ST-ADT Biomarker: Positive. On average, patients with this result had significant risk reduction in distant metastasis with the addition short term androgen deprivation therapy."

The report itself says nothing about what type of ADT, and my RO recommended 6 months of Orgovyx, which I agreed to.

I believe you are right in how ArteraAI makes the determination.

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Oh, ok, thanks. I didn’t realize, they may have different focus of report based on what they find, makes sense.

Thanks,

Phil

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Profile picture for jeff Marchi @jeffmarc

I should’ve realized that, The way you put it did look a little suspect 😀

Your testosterone sure came back aggressively. Gotta make you feel a little bit better, like normal!! Whatever that is after PC

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Yes, much better physically but always worried that all that T will be food for you know what!

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I took just 4 months of Orgovyx that completed about 1.5 years ago. I eat well, exercise daily and play pickleball and golf. After one year, my Testosterone did not fully recover and my team agreed that I could take supplements. My fertility RO prescribed TGel and Cialis. My T returned to normal and I'm in the process of weaning off both drugs. My PSA was stable during this time.

Compared to many others, 4 months is 'ADT light'. Sadly, I still have not recovered from the main 4 side effects: Belly Fat (gained 10 lbs. eating a healthy Mediterranean diet and drinking less); Hot Flashes: definitely still happening; Energy/Strength: struggle to run (5-10K) distances as I could before ADT; ED: about 80% of normal.

I'm trying to understand how these side effects could still be so active when I clearly had a 'light' version of ADT. I'm meeting one of my Dr. team on Monday and, if I don't get a suitable reply, I'll check with some of my other doctors. The literature on this topic is all over the map, hence, not useful. (Disclaimer: I'm grateful not to need more intense treatments at this time...just want to understand what's going on and maximize QOL like we all do).

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Profile picture for northoftheborder @northoftheborder

My new anti-hot-flush device: about US $20, it folds up to fit in a fanny pack or cargo-shorts pocket, and the battery is good enough to run continuously for a full working day on a single charge at lower power settings.

(It also doubles as a backup battery for a phone or tablet.)

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Do you perhaps know where I can get it online. I'm in South Africa.

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Profile picture for thenglm @thenglm

Do you perhaps know where I can get it online. I'm in South Africa.

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I got it from Amazon.ca; in South Africa, you might find something like it from Takealot.com, or maybe Alibaba (?).

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Profile picture for jeff Marchi @jeffmarc

Somebody’s talking to themselves. Do you need to see a doctor?

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Jeff

My AI test will not be back for a few weeks

Having read about the side effects of ADT not sure I can handle them if the RO recommends it even ADT lite with 28 Proton Radio

For a year now I have struggled with the side effects of a reverse shoulder replacement which has been tough

The whole ATD choice has been on my mind a lot to go without ADT as part of the radiation

Seems like lousy choices at age 80 to have to make

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I’m 77 going 78 I’ve been on ADT for eight years. It’s really something that most people can manage. For me, it’s not a big deal, It has kept me alive in the last eight years.

When they want to do radiation, they want to try to limit how much radiation they give, If they can get you on ADT, ahead of the radiation, it can shrink the tumors and stop them from growing. They probably won’t want you on it more than six months because of your age.

You could tell your doctor that you want to go on the estradiol patch, Instead of ADT. According to the latest study in England, it’s just as effective as ADT, but has many fewer side effects.

Not sure if you saw this video, it discusses over treatment of people in their 80s

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Profile picture for jeff Marchi @jeffmarc

There really isn’t an ADT light, The purpose of ADT is to drop your testosterone as close to zero as possible. Every single ADT drug does exactly that. With zero testosterone, the prostate cancer has nothing to grow with so it stops growing and in many cases shrinks. By ADT lite he may mean altering ADT instructions so you stop and start the drugs reducing the testosterone drop,

The alternative to hormone therapy is to use the Estradiol patch. It still drops your testosterone, but it doesn’t affect the heart as much, It doesn’t affect the desire as much and you get Fewer hot flashes. You can search patch study if you want more information.

I’ve been on ADT for eight years and it really has not affected my actual daily life, Other than the fact that I now exercise by walking on a track twice a day and going to the gym three times a week the rest of my time is quite normal for 15 years with PC.

Just some information so you know ADT possibilities

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
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 walk 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.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Can’t hurt to try it.

According to a doctor that spoke to a recent webinar, all people on ADT 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.

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My experience after 7 weeks on ADT is very similar and I believe that my diet, daily exercise and D and B supplements have greatly contributed managing side effects. It’s early on but I’m optimistic about minimizing side effects.

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