Overwhelmed and any input appreciated.
Husband diagnosed Stage IV mets to Lymph nodes in May 2022. Did 28 days of Casodex then 3 months of Lupron received another injection last month. PSA now .02 and husband tried Zytiga in past month and went off due to High BP. Onco says no vacation because data does not favor it...
but on here I have read otherwise...
All input greatly appreciated.
Thank you Pickleballplayer.
I can't imagine what it truly must be like for you men battling this beast. You are warriors! Very powerful what you said , not a victim!
My husband won't join these forums bc he also loathes talking about it. I get it. Well, as much as I am able to.
I thank you for answering.
You read all kinds of crazy stuff on here. If his BP is high, he may not be taking enough prednisone.
Thank you TA. His doctor sent him a calcium blocker to take, but it was one he is allergic to, so they are sending another one.
He was told no more prednisone bc he has insomnia as it is.
have him try taking prednisone in morning--my hubby takes Zytiga in middle of night when he gets up to pee, as suggested by other men. He used to take prednisone at dinner but now takes in morning--he takes (1) 10mg pill and he has no issue with BP
WARNING!! don't let him stop prednisone cold turkey--hubby did by mistake and it became life-threatening
Thank you for the helpful insight, KA golf its greatly appreciated!
Best to you both. There is so much information to decipher, decode, and then try to use!
The tmi can be overload initially .But you’ll pick it up . Keep the faith ! 🙏
or scared to death!
If he is takin 5 mg prednisone he could increase it to 10 mg a day and see if the blood pressure is controlled. If increasing prednisone does not work or it is impossible because of glucose control or other reason, the doctor could try Eplerenone (Inspra).
Hypertension when taking Zytiga is usually caused by an increase in aldosterone. Aldosterone, retains water and sodium and eliminates potassium causing hypertension edema and hypokalemia. Eplerenone is an specific aldosterone receptor blocker. Aldosterone may increase but the receptors in the cells are blocked by the eplerenone.
Talk with internal medicine doctors to use eplerenone to try to control his BP.
Thank you much Tango,
I appreciate your detailed share.
They sent him a calcium blocker, but he was allergic to it in 2017 (High BP), the VA doc didn't look back far enough, or just missed it and sent it...
A new Calcium blocker is on its way.
Best of luck.
for me, I had high BP at office visits purely related to to high anxiety, after 1 1/2 years 127/ 79
A vacation now , wouldn’t be good . Risky . APC needs to be put down for many years before one vacations, if ever? Imho
Thanks Lulu! Stupid question , but hoped we could push the pause button... not realistic. this crap is brutal and the train has barely left the station
No stupid questions when striving for life ! Keep asking . Not knowing is scarey . Here you’ll be told the truth from our point of view . 🙏
Hello, What was his initial PSA? Dropped to 0.1 in 4 months ?
Please fill out the profile with case history if possible.
My father was diagnosed at similar stage. I wouldn't even dare think about vacations at this point haha.
Thank Meowlish,
I now realize my post was hasty...Should have researched more b4 posting. Best to your Father and your Family.
He was up to 17 PSA
I really thought myself a victim my first years fighting this disease. Why me at 53, poor me I thought i was a goner . Why me? Dad had this, I didn’t have insurance and didn’t go to a doc until it almost too late! Male ego .. Only my lady that married in that condition thought I’d live .. . Even after bing clear for yrs I still didnt say it ( I’m clear) until after a five yr mark . I’m not bagging . Just thankful to still be kicking the can down this long bumpy road . Like Breast C these hormonal#4 Cs always come back in time . That’s what they say! ?
Lulu700,
Huge congrats to you for 5 years so far! Keep kicking that can down the bumpy road! I read these posts to my husband, so he knows it is possible the 5 year mark and beyond. Staying strong in mind seems something you share with other long haulers.
Thank you for your positive words and sharing your triumphs thus far! Continued best to you on this journey.
I debated on whether to respond...... at risk of alienating others I will. Your husband has a serious disease and you need to come to grips with that as @ supporting spouse. Woe is me and other negative thoughts does nothing to help in the fight against any serious disease; male or female cancer. Why so early in the fight would anyone consider a vacation is beyond me...... Listen to your Medical Oncologist.
Though it may be antidotal, I entered the fight at age 57. I had Lupron/Eligard injections for 6 1/2 years. Today I am 75. In 2004, the “numbers” said that I had 2-4 years, maybe five years to live. One of the best advises that I received by a close friend who is a PhD in Bio-Medical Engineering - always remember that you are a Statistics of One. It does not matter to you what statistics say, you are the only person that matters. Stay positive and follow the advice from your Medical Oncologist. He is the pro! - Following this advice, enlisting treatment from the best Genitourligical Cancer pro available, and with the support from my wife, family, and friends, I have preserved to live a normal life by listening to my pro and also shunning negative comments; no matter how innocent they may have been.....
With this I wish the best for your husband in his effort to kill the little bastards. Look, everyone with metastatic prostate cancer have varying degree and scope of disease; as well as physical body strength and tumor burden. Along with a positive attitude, only your pro has the knowledge and skills necessary to succeed in this fight.
Gourd Dancer
Thank you Gourd Dancer,
I am glad to have provided you an opportunity for some self debate bc of my "woe is me" post.
Seriously though... I do not think anyone would read your response as anything other than hopeful and concise with a subtle hint of philosophy mixed in...
18 years ago you were told your LE was quite slim...
6 months ago my husband was told he would have surgery and be cured Stage II/III diagnoses pre Petscan in May.
We know everything there is to know about the surgery he didnt have and the healing, exercises...
Stage IV, well you know, its a whole 'nother beast.
We lost everyone of our original cancer and GP doctors since March. 3 left the V.A. and 2 were radiologists. My husband is an Agent Orange warrior. Someone had told him to go on vacation, so I looked it up, hence my post.
Which I now realize was a quite ignorant post, big learning curve.
Keep up your amazing fight!
God bless.
Zytiga vacation may become necessary and there is no option. For instance I have developed proximal girdle muscle weakness and in trying to exercise I overdid it and went into Rhabdomyolysis, a condition that can affect your kidneys and heart. A zytiga vacation was mandatory. when my condition improved and lab tests returned to normal, about 2-3 weeks I resumed at a lower dose.
Are you in a study that the Onco doesnt want you to deviate from protocol?
Hi Jay, Rhabdomyolysis sounds very dangerous, glad you got it under control.
No, he is not in a study. He just has many medical obstacles...
stroke in 2015, hypertension, ... the Zytiga was making his B/P skyrocket and unfortunately his latest V.A. doctor was unaware of his allergy to medication in the past... so his friend had mentioned a vacation and I came here and went to other forums to read up on it ...
His new doctor just said its way too soon to vacay. He just didnt want another stroke right out of the gates...
Are you back to weight training? Or just keeping it aerobic light training?
God Bless and stay strong.
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