Just an update: I have been off of... - Advanced Prostate...

Advanced Prostate Cancer

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Just an update

Todd1963 profile image
21 Replies

I have been off of Zytiga a little over 4 months. I have no recent PSA data to report. My next blood draw is still a few months away. I could have a PSA but why? I am cancer free until told otherwise.

On other fronts, morning glory and spontaneous erections are now a regular occurrence. Urine flow is normal. I did get up to pee 3x the last 2 nights but I have been sleeping poorly due to shoulder pain. Once I wake up, my brain won’t let me go back to sleep until I pee. I still feel really good. I have a healthy appetite. My body chemistry is changing as the effects of Lupron wane. I am cold a lot. I never thought I would wish for a hot flash. In a little over 2 months I will celebrate 13 years since diagnosis.

I am back to work these last 2 weeks since orthoscopic surgery on my knee. My knee feels fantastic. I wish my shoulder felt the same. I had a cortisone shot on Wednesday to try and aleviate the pain. I see an MRI and shoulder surgery in my future.

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Todd1963 profile image
Todd1963
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21 Replies

YES! I'm new here and reading your history for the first time. What an inspiration.

Tall_Allen profile image
Tall_Allen

I love your attitude! There are many ways of deciding how long to have an ADT vacation for (e.g., time, T level, imaging, PSA, PSADT, pain) - do you have a plan for this or are you playing it by ear?

Todd1963 profile image
Todd1963

Hi Allen,

I guess you could say I’m playing it by ear. I trust my oncologist so when he says it’s time to go back on treatment I will go back on treatment. I think he expected me to have a PSA rise. I had my first PSA two months after going off treatment and he was surprised by numbers had not risen. During my last appointment he said that if in two years my numbers were still low we would start discussing testosterone replacement. I couldn’t imagine that happening in my wildest dreams but nothing about this journey has been typical.

OMG

"On other fronts, morning glory and spontaneous erections are now a regular occurrence."

This is amazing, I will chance my overall survival to get this feeling back, I'm responding to ADT, but life sucks!

in reply to

It will get better.

Schwah profile image
Schwah in reply to

You too can have “morning wood”. On my MO’s advise I buy viagra from this Canadian pharmacy very inexpensively. Couple of dollars a pill. I take about 3 nights a week and each time I do I wake up with MW. I also use it for occasional sex which is not like it was but not to bad. The idea is the erections keep the muscle intact and hopefully help things work if and when you get a “vacation”. See pharmacy info below.

Schwah

northwestpharmacy.com

in reply to Schwah

Yes, don't want atrophy to settle in...

Great attitude has served you well. Thank you.

Ldb01 profile image
Ldb01

Todd1963, this is a reall good news post. May I ask what stage were you at diagnosis ? Did you have bone mets ?

Todd1963 profile image
Todd1963 in reply to Ldb01

At DX I was stage 4. Bone lung lymph Mets and unconfirmed mets

Ldb01 profile image
Ldb01 in reply to Todd1963

You are a walking miracle ! Thank you for the inspiration.

Molman profile image
Molman

Good for you, stay positive and keep the erections going for all of us who can only dream about them. Take care

savingdaddy profile image
savingdaddy

Awesome news! I hope your positive results continue. You are an inspiration! God bless you. Kimberly

pilot52 profile image
pilot52

Way to go Todd ....I will loop the Citation tomorrow!!! What was you original Gleason, and a little more information would be great....Blue Skies Sky King

tom67inMA profile image
tom67inMA

Great news! Do you still have your prostate? I'm surprised the PSA doesn't recover to normal levels during treatment vacation.

Todd1963 profile image
Todd1963 in reply to tom67inMA

Yes I still have a prostate

PGDuan profile image
PGDuan

Todd - Great to hear. Enjoy.

dadzone43 profile image
dadzone43

Good to read your update. Good to know your progress. Good to view your positivity.

monte1111 profile image
monte1111

A remarkable story. One of the few we all wish to be. Good luck to you sir.

j-o-h-n profile image
j-o-h-n

Wood he or won't he? I took viagra one night and woke up with a vertical Pajama String.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/30/2019 12:46 PM EDT

Break60 profile image
Break60

Try lumina patches for your shoulder

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