My admiration for you long haul ADT guys.

Slapshot said...
So again, my respect for you guys on ADT for extended times. I have walked a short distance in your mocassins and it ain't fun.

As a guy that has been on it for almost 2 1/2 years and told I will never come off, it definitely takes a toll on you! I usually walk to stay somewhat fit, but this winter in the Great White North was a bugger with a lot of snow and ice mixtures. I fell a couple of times pretty hard and just said to hell with it I will wait for the nicer weather. I have never been a gym type of guy so that is out. My job was physical and that and running kept me fit prior to this.

I have definitely loss a lot of muscle mass thanks to no " T " The Lupron I find likes to add fat to around the stomach area. I will see about losing 10 lbs or so this summer. I am walking again now so we will see how that works out, for as this beautiful weather starts to keep coming and as tomorrow is the 1st day of spring.

Good luck in your fight with this beast!

Mike

A cut and paste for clarity and accuracy:

A quick reminder: "ADT" - first round cancer chemotherapy - does NOT just prevent your pituitary from producing gonadotrophin to stop your testicles from producing testosterone. Rather, leuprolide chemo (Lupron, Firmagon, Eligard and the like) completely locks up your hypothalamus gland which sits on and is completely engaged with/connected to your pituitary gland. When your hypothalamus locks up, so does your pituitary gland. So what does that do?

Hormones produced by the hypothalamus that are stopped by leuprolide chemo:

Thyrotropin-releasing hormone (TRH)
Gonadotropin-releasing hormone (GnRH)
Growth hormone-releasing hormone (GHRH)
Corticotropin-releasing hormone (CRH)
Somatostatin
Dopamine
vasopressin
oxytocin
thyroid-stimulating hormone (TSH)
prolactin (PRL)

link: http://www.biology-pages.info/h/hypothalamus.html

hormones produced by the pituitary gland that are stopped by leuprolide chemo:

Growth hormone. Growth hormone regulates growth and physical development. It can stimulate growth in almost all of your tissues. Its primary targets are bones and muscles.
Thyroid-stimulating hormone. This hormone activates your thyroid to release thyroid hormones. Your thyroid gland and the hormones it produces are crucial for metabolism.
Adrenocorticotropic hormone. This hormone stimulates your adrenal glands to produce cortisol and other hormones.
Follicle-stimulating hormone. Follicle-stimulating hormone is involved with estrogen secretion and the growth of egg cells in women. It’s also important for sperm cell production in men.
Luteinizing hormone. Luteinizing hormone is involved in the production of estrogen in women and testosterone in men.
Prolactin. Prolactin helps women who are breastfeeding produce milk.
Endorphins. Endorphins have pain-relieving properties and are thought to be connected to the “pleasure centers” of the brain.
Enkephalins. Enkephalins are closely related to endorphins and have similar pain-relieving effects.
Beta-melanocyte-stimulating hormone. This hormone helps to stimulate increased pigmentation of your skin in response to exposure to ultraviolet radiation.

linkie -poo: https://www.healthline.com/human-body-maps/pituitary-gland

Recent research has indicated that prolactin tells your kidneys how much water to take out of your blood. Without it, you retain about 15% more water than you should - 'water weight gain'. Without thyroxin, your base metabolic rate drops and you burn less kcals all of the time - weight gain. Lack of HGH stops production of neuronal stem cells in your hyppocampus - 'chemo brain'.

You cannot address all of the collateral damage from leuprolide chemo with a testosterone patch, sorry. If you think so, tell that to my dead testicle. sad

You could also ask about low dose transdermal estrogen patches. Dr. Snuffy Myers discusses it in this video.

I've ben on Degeralix (Firmagon) for almost a year - a shot every 4 weeks. One more shot in April and then I go on my first "vacation." I'll be on this or related drugs for the rest of my life, but am hoping the intermittent approach works for a long time. I've mentioned elsewhere on this forum that I've had fewer side effects than most people report - no hot flashes or fatigue. I think I may have some additional muscle and joint aches, but maybe that's just my age. I'm curious to see if that improves in the months ahead without the shots.

Because I'm in the control group of a trial I get monthly tests including PSA and a metabolic panel that includes liver and kidney function and quarterly tests including complete blood count and thyroid function. Throughout the past year all of these functions have tested within normal range.

I'm curious to know if there has been any bone deterioration, but won't have another bone scan or CT scan until my PSA rises to a level that triggers the start of my next round of ADT. For exercise I have a combination rowing machine / recumbent bike and when snow isn't on the ground I usually spend a few hours per week doing maintenance on a 60-acre conservation land parcel plus 30-acre pond - mowing trails and field edges with a walk-behind brush cutter, cutting and removing invasive brush and downed trees, gradually reclaiming a couple of grassland sections that were returning to forest, etc. Though given the yet unknown effect of treatment on bones, and I guess reluctantly admitting I'm no longer 30 years old, I'm planning to do most of that kind of work going forward on evenings and weekends when I can arrange to partner up with someone.
Jim

slapshot said...

We are from Vernon, BC
Dave

Hi Dave
We are from Guelph, Ontario

My one year anniversary on Lupron is next week did 6 month shots, my RO and urologist are having a a tug of war. RO says a year is enough, Uro wants 2, I don’t have a clue how to vote. Of course I would love to stop, but don,t want to miss a chance with the “big punch” up front, have the usual side effects, cold intolerance this winter was difficult, last summer I almost had heat stroke a couple of times with first shot. Had blood drawn today interested to see how my basic metabolic panel with lipids looks. I have aged at least 5 or more years in appearance, even with exercises and low carb diet. So much muscle loss in upper body. I laughed so hard, last night a watched a Sean Connery movie,The Name of the Rose, the body shapes of the monks look real familar ;)

trailguy,

Thanks for the info on the negative impact ADT can have on our bodies. Sounds like you had a rough ride on the drug. Sounds like our life style and initial procedure was about the same in that we are both active and had surgery close to the same year.
Thats when our treatments differ. You went through ADT and RT for a fairly long time after surgery while I had nothing until 9/18. My PSA was 1.17 at this time and a PET scan identified 2 LN+ which I have focused on with RT and ADT. Surgeon wanted 2 years Lupron, I said 6 months which my RO agreed to. Who knows. What I know personally is that this relatively short period of 6 months with Lupron has not done my body much good when it comes to fitness and well being.

I am glad that at least for more than 5 1/2 years after surgery, I had a very normal, very active lifestyle without any PC drugs or procedures.

I think being active is the key in the long journey with this disease.

Hope all goes well no matter what decisions you make in the future.

Dave

RobLee said...

....Thanks for the info on the devastating effects of Lupron. My surgeon wanted me on for three years, and my RO for only one, so I compromised. But DARN this is getting old!

Over the past four years, I've learned a lot about PCa and about physicians. If there is one lesson that keeps reappearing personally, and being reinforced on this forum, it's how precious little they know, or care, about the potentially devastating side effects, on our lives, of what they prescribe. There are exceptions, but very few in my experience.

IMO, it's a glaring weakness in medical practice.

Speaking of docs, and a bit OT but part of my "journey"... I saw my ENT yesterday....... The revision surgery last month to implant a couple splints in my nose apparently failed. He apologized for not being "more aggressive" in the surgery. Now he's talking about going even deeper into my skull plus harvesting some cartilage from my ear to hold my nose open.

That would surgery number sixteen, and I'm not real anxious to jump back in so soon again. This stuff just seems to never end.

Rob, that sucks.

Slap shot , I echo your sentiment, the guys on long term ADT are true “tough guys”, this stuff sucks even for 6 months

garyi said...
Rob....time for a new surgeon, or at least a second opinion, I think.

Last month's surgery was a different surgeon. He had said that the original surgeon a year ago "really didn't do much" in his words. This time, once he got in there, he thought it didn't look too bad, and I think he had high hopes for the implant. When I had first scheduled the revision surgery for last Sept the implant was still i clinical trials. Needless to say, we were both disappointed this time.

The revision had to be postponed because of that mesenteric mass that was discovered last August. Yeah, it's been one thing after another. I still have faith in this surgeon. He was trying to save me a more protracted recovery by not taking out as much bone as he had intended because he thought it looked pretty good once he got in there.

Long story. As you know, NOTHING is ever simple and straightforward for me medically. That's one of the reasons why I tend to be a bit envious of the guys here who had a positive DRE or a lucky strike on the first biopsy, a low PSA and low Gleason and got away with some form of monotherapy. It just seems to be my karma or something.

@RobLee You remind me of Roseanne Roseannadanna-if it's not 1 thing, it's another. I recall saying my Doc was an "ENTW". Ear, nose, throat and wallet.