Tired of Being Tired

[3putt]

Happy hump day brethren. I’m a stage 4’er and have been taking zytiga and lupron going on 27 months. I work out daily for 45 minutes and walk 12 miles every day. That said, my energy level is better than yesterday but less than tomorrow. I’m curious as to what the short term quality of life might be if I stopped all meds cold turkey? Anyone broached this topic with their healthcare team? My next lupron appointment is in June and I plan of having this conversation with my oncologist. Any input would be greatly appreciated. God bless all of you on your journeys.

[Magnus1964]

Your prognosis would not be good without ADT drugs.

[noahware]

The most important thing for you was probably to start some form of hormonal therapy ASAP, which you did. Far more controversial and debatable is whether you should (or need to) stay on it continuously. The data do not show a conclusive survival benefit either way, but there are obvious QoL benefits to taking a break after two years.

The opinion from your oncologist will likely be just that: an opinion. There are some oncologists (a minority) who suggest ADT is over-used, and doctors put their patients on it permanently because 1) it has evolved into the "consensus standard of care," in part because 2) it is the easiest thing to do.

But that does not mean it is easiest for YOU, or the safest. My own feeling is that I will take a break so long as I am asymptomatic and blood markers are not alarming. As soon as pain arrives, or other serious symptoms of progression, the doctor is the boss and I follow all suggestions... tired or not.

[Hidden]

Im sick and tired of being sick and tired! And I’m not going to take it anymore. I ask myself the same question. Should I toss the adt I’ve been on for five years with devastating results? No one will answer me that . I can stop and the dr will wash his hands of me . I’d say that you are amazing with the work out and 12 miles per day . Keep that up and enjoy what you can in life . Im sorry that I don’t have the answer for you or me. I have the same thoughts . Take care brother.

[Danielgreer]

Hi 3putt, could you try backing off a little on your workouts? I’m wondering if you may be pushing too hard and not letting your body recover? 12 miles is a lot but my guess is you could be a little more moderate with the mileage and still get the exercise you need?

[3putt in reply to Danielgreer]

Thanks. I’ve tried several combinations of walking over past few months. 12 miles sounds like a lot but at the snails pace I’m moving now not sure if cutting back is the answer. Doing my best to stay as active as possible but almost everything I look at these days resembles a couch. Crazy thing is while I feel wiped out most of time I rarely ever nap albeit not from lack of trying. I do seem to regenerate after a 30 minute ride on my motorcycle. Possibly an adrenaline rush. Funny, I mentioned to my oncologist awhile back how unmotivated I seem to be after each passing month. He said “wait till next year. You’ll be wishing you still have the stamina you have today!” Wow, was he ever spot on.

[3putt]

Sorry, you’re 100% right as I should have included a bit of history. I was 63 when diagnosed with stage 4. Mets to pubic bone. Before that, never sick a day in my life. Never even missed a single day of work in over 40 years. Actually found out I had cancer the month after I retired. Still, having enjoyed a wonderful life up to that point, I was mentally okay and prepared to engage the battle. My oncologist immediately put me on the zytiga, prednisone and lupron regiment. I responded well as psa is now undetectable. I know we all have our own cross to bare but zero energy has become overwhelming as I’ve always been extremely active. Now I wonder which side effect is worse; exhaustion or depression because you’re exhausted? I think if you could get 8 to 12 months of my old self by eliminating the meds the trade off would be worth it.

[LearnAll]

3putt....Now That I have some information about your parameters..let me try to assess if you are a suitable candidate for Intermittent ADT. (I am on intermittent ADT and in OFF period for last 3 months)

If You had Nadir PSA at or below 0.2

Didnot have Visceral mets (organ mets)

Have no serious medical condition

Not above 70 yrs of age.

Have regular Adenocarcinoma and not aggressive variant like Neuroendocrine,ductal etc.

IF you say "YES" to all these questions, then you may be a good candidate to try Intermittent ADT where you go off ADT say with PSA0.2 and wait until PSA rises to ,say 4.0 and then you restart ADT. Once PSA is back down to 0.2, you stop ADT again.

Intermittent ADT have been considered Non Inferior in most randomised controlled trials .

The benfit of INtermittent is less tiredness and other side effects. And during OFF period, you can do lot of physical activity to rebuild your body's strength. Some studies report that Androgen Independence is delyed if you do Intermittent ADT.

However, It is a challange to make your MO accept to do Intermittent..He?she chickens out when you mention it. I took control of my life and decided to disobey my MO and went for Intermittent (after reading dozens of studies) So far I am doing very well.

To avoid misinterpretation of my posting, I would like to emphasize that Intermittent ADT

is suitable only for carefully selected patients and close monitoring of PSA,T and ALP is required.

[Danielgreer in reply to LearnAll]

I’m sorry to have to say this but this sounds like really bad advice. I try to keep my comments positive but couldn’t in this case. 3putt is basically in the same situation as me and I couldn’t imagine my MO recommending intermittent ADT. I’m guessing you’re not a medical professional but play one on TV 😀?

[LearnAll in reply to Danielgreer]

Daniel..I am just asking him to discuss this with his MO . I donot know his case in detail. His MO knows.

[VN6465 in reply to LearnAll]

I’m a newbie w/aggressive G8 and completed HDR and IMRT at year end 2019. Got on ADT before radiation and not doing well w/it due to almost intolerable side effects. Exerciser and otherwise good health. 82 yrs old. What is rational of not having temporary ADT holiday if over 70?

[Tall_Allen]

Any gains are purely short-term. Eventually, quality of life is the same with intermittent ADT as with continuous ADT. The cancer itself degrades your quality of life. Eventually, for the pain, you will want to go back on ADT.

[pilot52]

Good Morning, I am in the same boat as you except I have no fatigue...67 years old....now since you put in the work I will pass on what has worked for me. 1. I drink athletic greens every morning before breakfast....have no idea if this helps but I get up at 6 and go until 9:30 or so....2. Peloton...their online coaching is second to none....I cannot describe the strength and pop in my legs , I am 5 months into owning one. No matter what the weather you get in a great ride....This is not for everyone but since you are putting in the time ???? I am on Lupron Xtandi and I feel good all of the time...my PSA hovers around 4 , 12 cores of Gleason 9 2015 last PET was a month ago and still no mets detectable....I have a commercai pilots license....my PSA had doubled from around 2.6 to4.98 and when I returned for the scan had dropped to 3.98...MY OC at Duke Cancer was getting ready for a therapy change and whamo my numbers dropped a little so we are holding pat.....I give you all of this history for reference . If I can add anything feel free to message me....Blue Skies , Sky King and Penny (woof)

[3putt]

Great advice. I’m thinking of joining the peloton gang in the fall as I love outside exercise and summer is right around the corner. My life coach (best friend and wife) and I are going vegan for May & June to see if that turns into a positive factor. Our youngest and his wife, both physical fitness nuts & Navy fighter pilots, have been vegans since graduation and swear by this way of life. Now that I hit my driver only 200 yards I’m more than willing to give anything a trial. Thanks again for your best practices.

[KJMinPhx]

The idea of taking an ADT holiday just because you are tired does not make sense to me. Sure, all of us on ADT therapy get tired, but it seems to me like what is best is to just power through and call the fatigue the “new normal” just like we do with the whole COVID-19 thing. Yeah, I can’t hike as far or as aggressively as I used to but I can still hike. Yeah, my work output is less but I still work. Seems to me like stopping a med regime that works just speeds up the cancer. I won’t be asking my MO for a holiday.

[3putt]

I hear ya loud and clear my friend. Everyone has a different benchmark for their own expectation of normal. Appreciate your words. Take care and God bless.

[j-o-h-n]

Tired of Being Tired?

Hint: When taking your daily 12 mile walk and a cop sees you not wearing a facemask don't resist arrest...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 5:45 PM DST

[scarlino]

The fact is we have cancer. As much as we all want to return to pre-cancer life, we are going to suffer some level of degeneration that will never go away. I hate that, but there still isn’t a magic pill to make it all go away like a bad dream. It’s ok to rest as long as it doesn’t become a habit taking the place of productive things you know you could be doing.

Enjoy what you can, ask questions and if the data favors it try to eliminate unnecessarily long times on meds. Be good to your self and your mind and find joy in things NOW. That’s all we truly have anyway, cancer or not. Be blessed!

[3putt]

👍