Cancer in Iliac lymph node

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.

Welcome and sorry you had to join our little club. Way more information needed for anyone to comment on your question. Biopsy results? Gleason score? Decipher? PSMA PET? Genomic/Somatic?

Typically, radiation is focused on the prostate with ADT (Lupron et al) used to treat metastasis outside the prostate. This is currently standard of care for newly diagnosed mCSPC. If it's in your lymph system, it could very well be elsewhere, hence the reason for the ADT recommendation. All of this depends on the above questioned test results.

This might help: https://pmc.ncbi.nlm.nih.gov/articles/PMC10655601/

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 🍀.

It's been a while since I commented and shared my husband's story.
A year ago he got diagnosed with stage 4 PC! His only symptom was peeing frequently and a bit of ED but we figured it was age and an enlarged prostate! (he was 55) We hadn't gone to a doctor since before Covid, so several years- we just don't trust them!
anyways, prostate was large but the Dr also ordered a PSA just to see, it came back almost 300! CANCER!
That triggered a pelvic CT scan a few days later, which showed it outside the prostate too, so ADVANCED- stage 4! Urologist scheduled a biopsy and referred to oncology. Biopsy gleason scores were mostly 8 and 9s! a few 7s- BAD! Urologist was a young guy kinda cold, he just stood there and said it's advanced and oncologist will say chemical castration etc... I was bawling and my husband was mad!
Oncologist appointment was maybe 2 months later- seemed like forever! He said the same thing, other doctors said maybe radiation, they said Lupron, Zytiga etc. but we'll see about a full body PSMA scan! and 30% make it 5 years WITH treatment!! we felt even more pinned against the wall!!
PSMA scan results were terrible! all over his body! innumerable focci in his lungs, then spine, lymph nodes both in the neck and we already new about nodes near pelvis, bones, his, pelvis etc. It sounded like he lit up like a Christmas tree!! I had my suspicion about his lungs because he had a slight "ahem" cough, nothing bad but just "ahem" every 5 min!
My husband didn't want to take Lupron! He'd rather die that take it, it would mess with his manhood!!
I was mad! I told him if I'd get cancer, I'd cut off my breasts or have surgery and remove whatever, to me I'd rather have a husband who's tired and no sex life than a dead husband and still no sex life! Who cares about a freaking hard on!!
The doctor wanted him to start on Firmagon first because Lupron can cause a flare up of testosterone or something like that. My husband researched everything it seemed and relented to take the Firmagon shot, but then wanted to continue that monthly and not take Lupron because of the different side effects and the Dr let him.... Dr also wanted to add Zytiga, but at that point my husband has stuffed himself with all sorts of supplements out of desperation that it wrecked his liver! one was a certain supplement you read about online now, his liver numbers got so bad that he was "technically" in liver failure, he wasn't yellow or in pain or peeing brown, but it triggered an appointment with a transplant doctor and an ultrasound and my husband quit everything! and the liver returned to normal and he started Zytiga and prednisone pills!
Then over the summer her did chemo (docetaxel) for 6 sessions, 3 weeks apart and it was really not a big deal, he got more tired and lost his hair but didn't get sick.
He then got another PSMA PET scan after that (in the fall) and it showed GREAT improvement! the cancer was still there but one tiny spot on the lungs and a few other places. and PSA is down to 0.12! They said PSA would probably go down for 18 months then become castration resistant and then they'd switch gears and maybe Pluvicto would be used!
He works out every day- weight training and eats pretty perfectly, takes his daily zytiga and prednisone, and monthly firmagon injection! Next week he'd getting another PSMA pet scan, so we'll see.
He still feels like a shell of a man and sex life is gone, but he's still my husband and I love him, I don't want to be a widow yet! We still have 3 kids living at home (plus 1 out of the house)
It's the hardest thing and most stressful thing we've ever been thru!

Recently the post menopausal advice to avoid hormone replacement therapy has changed. This may lengthen the time for availability if substitution or addition to branded ADTs is being considered.

I've been on Orgovyx for about 4 1/2 months. I was very reluctant when my RO sentenced me to 2 years of ADT. I asked for Orgovyx when my Medical Oncologist suggested Lupron. I liked the fact that Orgovyx is a daily pill that I could stop any time if the side effects proved to be too horrendous compared to injections that have their effects for months. Recovery towards normal testosterone levels is said to be quicker after stopping this drug than with more traditional ADT injections. There is also evidence that patients taking it have less cardiac problems. One thing is, there is a lot less experience, i.e. data, with Orgovyx as it is a newer drug.

Although as a patient I am supposedly part of this "shared decision making" process, obviously, I was certain that I was, and remain, the least informed person in any discussion with professionals. Its hard to know without long experience how much weight to attach to any particular piece of evidence. I accepted that the pros can be biased, and I spent full time for a lot of weeks attempting to sift through what data I could get my hands on. I dropped all previous urgent priorities for a while, even though I had my hands more than full. I did back out of any further contact with 2 of the docs I consulted. As one of my urologists exclaimed at an appointment: "you are seeing a lot of people!".

My case (cT3b), appears less advanced than yours. However, my RO classified me as "at least high risk", as when you get right down to it, the conclusions the docs reach about what stage any patient is in cannot be certain. The thing is, in cases like yours and mine, the docs know that compared to most of their patients these days, there is a higher risk of death.

Once I started on ADT, I experienced great relief. PSA tests showed my cancer had been dealt a serious blow. Some docs emphatically say that in the whole field of cancer therapy there is nothing like ADT. I'm sure that side effects are piling up. My primary care doc warned me that anemia is setting in. The cancer docs are not worried - they say I'm doing great. Muscle pain such as I've never experienced that I do not understand (as yet) is a problem.

One thing I spent a lot of research time on in the beginning was to seek out a therapy that involved less time on ADT, that my RO would find acceptable. I eventually signed up for the external beam he recommended, but with an HDR brachytherapy boost. See: the TRIP study, or Nelson Stone's talk, Radiation Dose and Hormone Therapy, How Much is Enough? My doc started saying maybe 1 year of ADT would be OK.

However, recovery from ADT does seem to involve a permanent reduction in testosterone levels, that any patient about to start on it should know about.

In addition, a disturbing number of patients never recover anything like their "normal" level of testosterone. I don't remember where I got this graph from, but I don't save things like this unless I have a lot of confidence in the source:

@climateguy Good discussion - and perhaps one year of ADT might be sufficient🤞.
My T recovered very quickly after 6 mos Orgovyx right back to where it was originally and it is holding. I think keeping vigorously active plays a big part; you don’t have to be a gym rat - even gardening, something always depicted as a little old lady wearing a bonnet and dainty gloves, can be physically demanding.
50 lb bags of mulch don’t move themselves and digging holes in packed clay soil is not for grandma!
Phil