Four years of Lupron + abiraterone
Pros: I'm still alive and castration sensitive, spine met not growing or painful
Cons: Zero libido, muscle loss, fat gain, hot flashes, blueberry-size testicles, BP increase, body hair loss... and all the other side effects that many of you are all too familiar with
Conclusion: For me so far, pros >> cons
Not enough prednisone to compensate for the loss of cortisol?
How do you get to this suggestion from the limited info Gearhead provided.
How would one know if the prednisone dose is too low?
His BP is increasing.
My BP history is long and complicated before and after PCa DX. Focusing on more recent: BP was increasing with 5 mg/d prednisone (Zytiga prednisone dosage recommendation for CSPC). So increased to 2 x 5 mg/d based mainly on your recommendation. BP decreased somewhat. About a month later, working with PCP, switched to 5 mg/d prednisone + 50 mg/d eplerenone. BP decreased a little more and now averages about 130/65 with occasional brief increases. Because experience with 2 x 5mg/d prednisone was so brief, I have no way to know if continuing with that would have resulted in lower BP.
BP is the main symptom of insufficient cortisol, and the most serious one (accompanied by edema and low potassium), but there are cortisol receptors on every cell and the result of insufficiency is widespread, although possibly subtle in the short term.
Cortisol has many functions, including energy production, control of inflammatory response (e.g., preventing arthritis), and preventing allergies and runaway immune response. It also has mental effects, affecting mood and memory formation. Symptoms of too little cortisol may include fatigue, dizziness (especially upon standing), weight loss, muscle weakness, joint pain, mood changes, and the darkening of regions of the skin.
Glucocorticosteroids have been found to have independent anti-cancer activity . The effect is short-lived as resistance eventually arises.
This is extremely valuable information! I developed HBP about 15 years ago in the midst of an extended time of high chronic stress. I always felt that my HBP was stress related. Depleted Cortisol = HBP. Is it possible to test Cortisol level and balance if needed? Or is it more complicated than that?
You can see an endocrinologist and have a full workup done - cortisol, thyroid hormones, renin, angiotensin, aldosterone as well as electrolytes.
Thanks TA!
Life is the pro! Even though we all suffer .. I too had blueberries after two years of Lupron I chopped the boys in 2017 and dropped the lupron . In the third world I’m sure an orch is the first line of defense . They’re not giving $6700 lupron shots away to the poor. Some dream to return to the old self . I don’t have that fantasy . I never did . My pc has hidden for seven years now ? 😳
Your story is identical to mine. I reach the same conclusions. Cheers.
Choose Life💙Just had 3, month Lupron shot, the 1st was 01/2015
What a long, strange trip it's been
My saga, if you're interested 😂
zerocancer.org/blog/ive-bee...
Fight, QoL, Live, Love, and Laugh on!
Randy
You do the regular walking. And I believe you have been a stalwart marathoner in the past? What are you doing to combat the many ADT SEs mentioned here, and how successful have your efforts been so far?
Good morning from CA,
Yes, did 155 marathons, and on a walking streak now with last day missed on July 21st.
So, SE's are minimal, I've lost some muscle, gained fat but have been scrawny my whole life. This am I weighed 141.8lbs, BMI at 21, body fat at 10.2%
I don't have hot flashes much, or maybe I do but it's too cold to notice 
I get the "blues" periodically, but I do a lot of QoL stuff to distract me. Day trip to LA yesterday, cooking, walking, chatting with HU members or patients. Actually gonna have beers with a married couple, long time pts, for Break Fast. I have been doing IF (Intermittent Fasting) since 01/2015. 16 hrs fast with like 8 hrs whilst asleep.
So, relative to what I've read here on this forum, I'm doing pretty well with ADT SE's
Though may be headed for IMRT, asked MO about BAT and Lu-177 as my PSMA scan had a huge SUV MAX at 87.5 which indicates a greater chance of success with Pluvicto.
My best to you Brother on your PCa journey
Randy
How are your numbers? When was your last Dexa scan? What’s your body fat percentage? Hemoglobin A1C, LDL and HDL cholesterol? Triglycerides? How much do you exercise and what kind? Overall health is what matters, and it asks a lot of you on ADT.
Don’t forget there’s a lot you can do to remove or strongly interfere with the cons. Except the libido of course.
Yes, I work hard at minimizing the cons. Work out at gym every other day and (weather permitting) long brisk walks on alternative days. As I think others will confirm, it's hard to maintain muscle mass while on ADT even with vigorous strength training. I've actually lost some weight over the last four years. At the same time, I've gained a small spare tire. So I assume that I must be losing muscle mass.
DEXA mild osteopenia. Body fat unknown, but at 6"1" & 165 Lb I assume it's low. A1C, LDL and HDL are all OK, but platelets were low before PCa DX and haven't changed much since.
You’re doing great. Of course it’s hard to maintain muscle mass on ADT, but those who already have good lifting habits when starting ADT find it both a little easier and discouraging at the same time, since we’re more aware of what we’re losing off the top. Still vastly better than being thoroughly deconditioned when starting ADT, as most men are.
Yet ALL benefit immensely. The weaker we are, the more dramatic the gains.
Even if building and maintaining mass is tough, the crushing fatigue that sedentary life on ADT brings is profoundly not worth it. I’m not telling you anything.
Fat should not be unknown, the Dexa calibrates both body fat and lean mass precisely. But yes at 6’1” 185 you are likely not carrying much.
good choice. Warrior on
I don’t know how old you are and if you could do some exercising. I successfully fight muscle loss, joint pain, fat gain, BP increase and fatigue with daily running, gymnastics and weight lifting. complemented with a whole food plant based diet and 16:8 time restricted eating. So far so good. Maybe you can/want to try some of this.
From a deadhead to a gearhead.......i resemble your remarks....only good side to this ......i still cant drive 55......its pedal to the metal in my 66 fairlane......
You look familiar.
I'm five years same medication and side effects. I live life everyday as if it were my last. We all have an expiration date with or without APC so take your meds remember the good old days and make some new ones. If you want that new car buy it that dream vacation book it. Never give up Never surrender. LeoOh yes by the way I Cruise In March I bought my Caddy SUV and an RV. All my best and blessings to you and all my Brothers here.
Pedal to the metal commander
Amen Brother!!!
Similar results from 3 years of Lupron/Erleada and with the same side effects except my bp has remained normal. The fatigue is difficult to manage and thanks to severe OA of both knees, running is difficult. But there have been no changes in the PSA/T numbers and every day on a motorcycle and at work as a nurse is a blessing.
Congratulations! I won’t bore you with details but was on ADT for 24 months following surgery and in conjunction with radiation. Coming up on 19 years with PSA <0.01. I hated ADT but credit it partially to being here today. Keep it up.
I'm going to go off ADT as per my doctor's suggestion, along with his medical group's blessing at Sloan Kettering. These are professionals in oncology, unlike anyone on this forum. I trust them to at least try to get my life back, and come back to ADT hell only if necessary.
Read your Bio (thanks for thoroughness). With that background, it will be informative to follow your post-ADT progress. Please keep us posted.
Are you aware of the planned clinical trial at Sloan Kettering to study ADT interruption for patients responding very well to hormone therapy? Investigator is Andrew Laccetti, co-investigator is Michael Morris.
Thanks for the heads up. Just found the info about the trial. Will look into it.
Glad to help. I also plan on inquiring about it. Perhaps you could post what you find out.
Sorry to have jumped in on your reply to GummyToad. I am his wife and didn't realize we were logged into my account when he replied to you yesterday. Anyway - here is the link to the trial info on MSK's website. If you scroll all the way to the bottom and click on visit ClinicalTrials.gov for full description, it gives all the criteria. Hope this helps.
You may be interested in this clinical trial: "Testing Interruption of Hormonal Medications in Patients Responding Exceptionally to Therapy for Metastatic Prostate Cancer."
The details are at: clinicaltrials.gov/ct2/show...
Two or three years of ADT?
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