spouse just had the provenge treatment. it was for 3 weeks in JANUARY. all he does is complain about the side effects. he is also taking xtandi. blurred vison, shaking- like his hands, tired ness, confusion. afraid to walk bc he is afraid of falling. prior to the cancer- that spread to lymph and spine- he had a spinal fusion at L4-L5 and malpractice neurosugeron put the screw for spine in his canal. his psa after lupron went from 35 to 4 to 0.04 within first 2 months. it went to 4 in first weeks. His psa on xtandi and Lupron and xgeva- was steady at 0.04 to 0.01 and then blipped up to 0.28 so they did provenge..... are at 1.75 yrs of treatment. his first appt with dr after provenge is 3/1. there is no feedback at all. they say if bad effects go to emergency room. had to go once for dehydration and loaded with covid people- so try to stay away and hosp acts like "Why are you here?". All spouse does is complain about hot flashes- dizziness so bad he feels he cannot walk around- goes from top level of home to main level once a day. will only get up to feed his cats. I have to wait on him with all food when home- during day I have to go to other house to telework. . In his master room he has fridge, ice maker, microwave and food. but often waits for me to go home. or eats can of soup or sandwich. I have him taking supplements- vit D 5k day, vit C liposomal as muc ch a s he can stand, and alot of other supplements. electrolytes, filtered water, alkaline water.
DOes anyone know how long provenge side effects last- right after treatment #2 he got a bad rash- they were shocked and took pics of him- all over his body but they gave him prednisone & it went away. his hands shake alot. really bad. and in AM when he wakes up he says everything is double. cannot see even wit his glasses. He is 67. WHen I tell him he has to try to exist as normal as he can I get yelled at. his attitude is horrible since these treatments and also xtandi hot flashes. I tell him well t hat is what females go thru at menopause- I know it is bad but you have to deal with it I get "Well that is NOT ME!" I know that is not true bc since i was 4.5 my mother worked at NIH 13E and was the night nurse for the NIH bubble boy- the son of the NIH cancer institute head DR> and she cared for the fist HIV AIDS patients with fauci. (no comment there bc it is all bad). Since 4.5 I was a pen pal to al the child patents at NIH- and up til I was in college.. So I never had my mother with me at home at night or to go to school in AM and was cared for by father at night in early yrs and JR high on alone with siblings bc father was away as supervisor for Alaska aa pipeline. My mother wanted me to know the important things she was doing and why she was not with me as a kid. we saw her after school until she went to work at 11 pm. So I know the suffering cancer patients went thru and it was even worse in those yrs... amputations was the word of the day back then. But my spouse thinks his is different or worse. he lost his mother a t 25 and she fought a brain tumor from when he was 13 on. so he keeps going out on limbs saying- his is spreading from prostate to brain. it spread from prostate to lymph to bones in spine bc he did not listen when is aid to go and get checked. I tell him he has to fight it nad act as normal as he can- but there is one excuse after another.
So does the double vision, dizziness and shaking from provenge ever calm down?
I am not one to baby ill people bc my mother never babied me. i was alone when i was ill bc my mother was caring for kids alot worse off. I was told---- with a flu or cold- go to your room and lock your door! basically- get lost! And I read in bubble boys sisters book she wrote- that her mother told her the same thing! bc her mother was with her brother during the day. And nothing was as bad an illness than what her brother had aplastic anemia. My mother was the nurse who would bake Teddy his favorite choc cake and we would go 30 miles to buy his A and W root beer bc in those days you could not find it at all sores- we went into DC to buy it on weekends when we shopped bc his mom ws busy at IH with him. AW was the only thing he would take his meds with. If no A and W he would not take it. So my mother made sure she went on her day off to buy it in 2 liters nad lots of them. And she would make him the cake- that had one inch of butter cream fudge icing that was like a fudge layer bc when autoclaved it would melt and be tasty like a lava cake. The cake was all home made of real food- no boxes with my mother. it wa s a choc sour cream cake- with Hershey's chocolate. our kitchen was all sterile-s he would use boiling water nad bleach to clean it all and make us stay out while she baked for him. in later yrs she would bake things for the hiv patients. and carry it in. She also cared for sen evan bayhs mom when she died of cancer at NIH. she was the best nurse ever and treated her patients like family. Fro decades I was free of having cancer near me. no one in our family got it. Until my spouse now. bc it ran in his family. BC I was on the clinical side of it my entire life- not the emotional side- I fin d it best to fight it lik e it is your job. but my souse was hidden from it while his mother had it- they told him only before she was dying......... He did not see or know of her treatments. So now he thinks he is dying and that it is hidden from him.
I told him there are side effects from all medicines and he should know that having dealt with his back injuries.
His psa was not even near 1. it is now at 0.28 blipping up from 0.04. but it is because they lowered his xtandi so he could qualify for provenge. and now he complains about the provenge side effects.
I am at wits end. Bc I get yelled at.... the treatments bc of the hot flashes make him nasty- I know it is the hormones doin g it but not sure how much more I can take. He has been disabled for 25 yrs from back injury and could not work- I worked and had best insurance bc I am a fed employee. I told him - you are lucky you get the best medical care. But he lies in bed- will not exercise. says he is too dizzy. I said- you have to force yourself.
So I hope the provenge side effects wear off eventually- DR says nothing. maybe on 3-1 he can say something.
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