idea?

[Spring15-3]

husband has always reacted poorly/had weird side effects from drugs, to the point I read any new prescriptions. VA did genetic testing for reactions to 20 common drugs and I carry that with me to ask appointments. The loss of testosterone has definitely weakened him and the lupron brain fog is very real, (which really sucks because of his adhd)...shortly after starting the xtandi he developed a tremor in his right hand. Xtandi was discontinued due to severe side effects and he was started on Nubeqa. Side effects not near as bad but still there, the tremor stayed. Doc out him on 2 week vacation from nubeqa to see what happened. Tremors lessened but didn't stop. Saw a neurologist who said he knew it was Parkinsons just from looking at him, never made any allowances for drug issues. Prescribed him carbidopa levodopa. He lost what little energy he had and suffered from dizzy spells. Stopped that drug, contacted doc and his reply was I'll send a different drug but the side effects will probably be worse. I guess I'm asking if anybody else has had these kinds of side effects from lupron or nubeqa? I'm trying to make an appointment with a different neurologist, one whose first go to isn't drugs

[Lrv44221]

I don’t know i cangive any helpful advice because I’m not knowledgeable enough about drugs, I was reading some sites about pc and several people said palliative care was helpful

They said the oncologist can give name’s of those. Also , and just my thoughts, I might want to get another opinion about the Parkinson’s diagnosis there are “ natural remedies that are available but I think you would need to go online and look for mds that use alternative therapies

. Again just my thoughts trying to help 💜

[Spring15-3 in reply to Lrv44221]

definitely looking for another neurologist! Thanks

[TwilightZone]

I've been on 1200 mg. NUBEQA p/day for a year with almost no side affects. I attribute this to walking 7 - 8 miles per week plus weight resistance training 3 -4 times per week. It's not always easy, but persistent exercise helps a lot.

[London441]

How much does he exercise and what kind?

[Spring15-3 in reply to London441]

second part of the problem...he doesn't fight the fatigue to exercise. I've tried everything including pointing out what you all say and it's always, too tired, something somewhere hurts, etc.

[Lrv44221 in reply to Spring15-3]

good Tuesday Spring

Oh my gosh I feel for you and understand how you might feel,the best I can. I’m here if you ever want to vent.

I think you,as well as your husband, might be feeling sad, frustrated, angry helpless ( you can fill in the emotion)

Just a thought for you. Perhaps you could stop trying to get your husband to exercise and give him positive energy and thoughts about the good things in your life? Sometimes saying or doing nothing is necessary at the time. For me, I believe we are right where we need to be. Letting go is difficult for me, but everyone is different 💜💜💜

[Spring15-3 in reply to Lrv44221]

I'm a fighter, always have been. I'm making allowances now because it might be the lung problem but once we are part that...I'm a hell of a drill sergeant

[Spring15-3 in reply to London441]

let me add that part of the problem might be that his last scan showed lower left lung collapsed but we've not been able to get a pulmonary appointment before September...still searching for that too

[Lrv44221 in reply to Spring15-3]

Oh I understand now much better. I'm glad you are a fighter. The wait for the dr is so awful.

[Spring15-3 in reply to Lrv44221]

IMHO most doctors are awful. My family does NOT have a good history with the medical profession so I'm always leery of them

[Shamrock46]

Don't know if it's similar but my husband developed spasms in his esophagus that were not only visible to others but caused breathing difficulties. Took 7 different doctors to get correct dx. He has since been on 1mg risperidone/day and spasms are gone.

[Shamrock46 in reply to Shamrock46]

...and he always has SEs from every drug but none from risperidone

[katartizo61]

I haave a friend who introduced me to Infopathy.com thinking this might rebalance some of the drug side effects etc I have begun using this about 8 weeks ago with good results. Example my arms swing with walking, didn't before, lots more. MAYBE worth looking into

[Spring15-3 in reply to katartizo61]

tried a search, nothing came up

[Blue-Mockingbird in reply to Spring15-3]

Came up for me, try again or change your browser

[katartizo61 in reply to Blue-Mockingbird]

if your interested I am a provider on infopathy and hold an Integrated Medicine certificate, message me and we can set up at least a conversation

[j-o-h-n]

I just started taking nubeq/a (/ = missing u) this month (no visible side effects - however I'm losing my Humor). I have been losing my balance for a couple of years when I was on Lupron and casodex. Hope he beats Pca and Parkinson's. All meds except viagra and cialis suck....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/01/2023 1:02 AM DST

[Seasid]

Try Firmagon it should be kinder. No brain fog.

[NecessarilySo]

"Therapeutic and protective effects of lycopene by inhibition of oxidative stress, neuronal apoptosis and inflammation, and restoration of mitochondrial functions, have been shown in central nervous system disorders or diseases such as; Parkinson's, Huntington's, Alzheimer's, epilepsy and depression as well as efficiency in keeping the memory capacity of rodents [12,13]."

sciencedirect.com/science/a...

[Spring15-3 in reply to NecessarilySo]

interesting article. Saved it for mdanderson. I'm not sure if there is a supplement available like this or just through food

[Medline]

According to traditional chinese medicine, hand tremor symptoms generally originate from the liver and kidney system, Xtandi and Nubeqa are also metabolized by the liver and mainly excreted through the urine.

[Spring15-3 in reply to Medline]

I understand what you’re saying, but I’m not sure how to fix it

[Lrv44221 in reply to Spring15-3]

Good Tuesday Afternoon .........Medline is correct It usually originates from the Liver and Kidney. (And sometimes spleen). since i use TCM and have for years, I can suggest what may work, but since I only know what works for me, here is my suggestion. Acupuncture😊

I believe form years of using this, it may be one of the best therapies for many things in the body. it can help the body find balance. Balance which you may have read, in my posts, is important. it may be achieved with that modality. .......... but it is expensive........ 💜💜

[Spring15-3 in reply to Lrv44221]

not sure what TCM is but we've used chiro and acupuncture on our horses for years so I'm a believer. I'll have to see what I can find around Raleigh NC. Thanks

[Teacherdude72]

First and foremost I must say: we are all different in reaction and actions to treatments.I have been on Lupron & full dose Nubeqa for two years now and my energy levels ha gone down each year. I exercise at home, do carpentry/electrical, gardening, and hit the gym five days a week for 30-60 minutes. I literally have to push myself to do things. But if I don't for 2-3 days it is extremely hard to restart. But I do it!

I started this trip in Oct 2015 at age 67, now at 75 medically induced no indication of Cancer.

My goal is to see my new grand daughter, 7 months old, graduate High School and get married!

Be positive of mind and work to live.

[Spring15-3 in reply to Teacherdude72]

I have no doubt you will make it!! Thank you

[Teacherdude72]

Thank you. Best wishes for you!

[3Chordsandthetruth]

I had pretty bad fatigue and brain fog while on Xtandi and Lupron. Palliative care nurse prescribed Ritalin which definitely helped. Sounds like your husband might benefit from this. It's worth a try. Good luck!

[Spring15-3 in reply to 3Chordsandthetruth]

I would love that since he also has ADHD but nobody wants to prescribe a stimulant to an 81 yr old man.