Any New Suggestions for Dealing With Increasingly Debilitating Cognitive, Affective and Physical SEs from ADT?

[yamobedeh]

Dx advanced PCa in 12, 2016 at age 66. Gleason 4+4=8, PSA high was 20, one suspected met at hip. No other involvement beyond suspected perineural. 37 RT sessions and LD brachy mid 2017, at Dattoli Cancer Center (where Dr. Snuffy Myers was treated) 10 additional RT sessions to pelvic lymph nodes there early 2018. I've been on LHRH shots (Luporon, Zolodex, now Trelstar) for 18 months, and Casodex & Avodart for the last 12 months, due to look at stopping ADT around December 2018. MRI, CT and bone scans in October 2017 were clear. PSA and testosterone continue to be at or below measurable levels. I have all the usual ADT SEs, and at this point, the cognitive, depression and fatigue issues are becoming increasingly debilitating, to the point that I am reluctant to make work or social commitments because can't predict how I will be. I was advised by the clinic to take Creatine 800mg twice a day, stay with the heart healthy diet and supplements, and to do as much vigorous exercise as I can manage. These have had some positive effects, but they are as random as the symptom manifestations. Does anyone have any suggestions beyond what I'm already doing? I'm pretty much at my wits' end, as I know many others are.

Thanks

[Grumpyswife]

I can only tell you of our experience. My husband has been complaining of cognitive issues for awhile. I didn’t feel good about pursuing treatment for cognitive issues as once labeled as such it’s a whole new ballgame to get care.

It took 4 mos to get through neurologist, brain mri and cognitive testing. His MO stopped Xtandi as it can cause cognitive side effects and the neurologist wants him tested for driving ability. PCa has already ruined our lives and it just keeps giving.

[Tjc1]

I have been on ADT for7 1/2 years. Cognative issues still plaque me changing as they go. Got horrible issues with Xtandi. Lowered the dose by half and is somewhat tolerable. I finally had to throw in the towel with work that caused its own set of issues mentally. Our life being ruined is an ongoing thing and we call it the new normal we have to deal with every day. I try to keep busy and do more things with family now. Things i couldnt do while working. Kind of doing bucket list stuff.

[NWLiving]

My husband is on xtandi too. What type of cognitive impacts is your husband having. Mine seems more forgetful and is easily stressed unlike before. He also is on Lupron. I know what you mean about not wanting to talk about it because of the fear that they will stop putting him in clinical trials. And it is working for the cancer. So very happy about that. But also try to reduce stress and transitions at home.

[Break60]

So sorry to hear you're having such difficulty with ADT. My experience isn't so bad and has been easier the third time around.

I'm under Dr Dattoli's care as well since having my pelvic lymph nodes treated successfully by him in 2015. So I assume you're also taking a statin, metformin, Avodart, bicalutamide, vitamin D3, calcium, cabergoline and the estradiol patch twice weekly? I'm also taking celecoxib (formerly Celebrex) for pain and duloxetine (formerly Cymbalta) for pain and depression, but was on those plus the statin (rosuvastatin, formerly Crestor) before getting dx with Gleason 9 PCa in 2013 and Dr. D was happy for me to keep taking them.

I also exercise daily either at the gym or playing golf which are absolutely vital for strength, bone, muscle and joint health and well being.

I'm about to come off Trelstar as of 6/30 after being on it for 13 months, recently stopped bicalutamide but will remain on Avodart, metformin, cabergoline, D3 , calcium and the other meds I've been on for many years. I'm also taking a three month vacation from xgeva.

My next step will be another CT PET scan if PSA rises again which it probably will given past trends. Then if practicable I'll likely radiate any oligomets with SBRT and start second level ADT.

The fight continues.

Bob

[yamobedeh in reply to Break60]

I am on the very same regimen of meds from Dattoli. I had a hellish allergy to Lupron and Zoladex before switching to Trelstar. My family doc prescribed 300 mg ferrous fumarate because my blood cell counts and hemoglobin were so anemic. Dattoli OK'ed that. I was suffering from such bad fatigue, I asked Dr. Kaminski at Dattoli for any input they could offer. They said they are now recommending 800mg creatine twice a day to help with the cognitive issues, and to stay with the diet and exercise plan. I have a history with episodic depression (dopamine/norepinephrine deficiency) and some ADD. My family doc prescribed Vyvanse, 10mg to help with energy and motivation. Those 2 do help somewhat, but the SEs and the effects of things I do to help are random. I also take 500mg naproxen once or twice a day for painful arthritis in my hands. I have a plantar fasciitis that I'm trying to get over.

Trying not to wait for the other shoe to drop when I go off triple blockade this December.

[yamobedeh]

I was about to reply to your response, and then I saw one from you and several others. The content makes a lot of sense to me. I will add more cardio to my exercise regimen, and Acetyl l-Carnitine. Thanks.

[Mkeman]

At 81, I was very worried about cognitive changes from my ADT. The information sources I could find on the subject all suggested that exercising the mind and brain should be a daily activity like any other form of exercise. First, I acquired an iPad and subscribed to The New York Times, the Washington Post and other news sources and started reading them religiously to keep my mind learning new things. Then I signed up for the popular game Words with Friends that forces you to look at what you can do with seven letters in front of you. I also made a list of numbers...credit card, phone, frequent flyer, checking accounts, etc. which I the memorized and which I recite to myself several times each day. I also recite the alphabet backwards on occasion as this forces the brain to think backwards envisioning the letter before rather than the letter after. There are many other simple exercises....Soduko and crossword puzzles and word finder games. Will they stop cognitive loss? I don’t know ....but I do know these activities are helping me slow up the rate of deterioration....which at my age is no easy task...even without ADT.