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We have used this site for almost 10 years.
Thanks to all of the participants.
My husband was diagnosed 10years ago. Prostatectomy followed by radiation due to rising PSA. He had seminal vesicle invasion at time of surgery.
He has done well and we have just been monitoring the psa the last few years. It has been gradually rising but in the past two years is moving more rapidly.
PSA today was 7.2
We see his urologist on Thursday and the oncologist on Friday.
I am an RN and I know they both will probably want to start therapy. It has been mentioned before but we have opted the wait and see because John feels good and has no symptoms.
We would appreciate hearing from anyone who could tell us what he can expect after the first dose of medication.
Lupron has been mentioned.
I hate to see him feel bad when he is feeling OK but I don't want to wait too long. Any thoughts would be appreciated.
Roberta:
I have been on a treatment program my Dr. refers to as "Hormone Lite" that does not include Lupron and has far fewer side effects as compared to full blown hormone therapy. It may or may not be appropriate for your husband. That will be for the two of you and your husband's Dr. to determine.
My story is here on YANA for your review. More detail is available in my online journal at: http://protondon.blogspot.com/
If you have questions on any of this material, please let me know.
Best wishes Don O.
I was on Lupron for 6 months although it took another year and a half to totally get over side effects. What I experienced was as follows:
Severe hot flashes every two hours at night. I was able to easily go back to sleep after they subsided.
Definite loss a libido.
Gradual weight gain.
Brain fog and short circuiting (my description)
For me the hot flashes and the loss of mental sharpness were the worse.
Roberta,
Please do some research on the Chaarted Study just released by ASCO. It shows in the clinical trial that Doxetactal given with Hormone Therapy significantly improves survival.
I didn't really have much trouble with the hormone treatment for the 6 months I was on it but the hormone treatment did cause me to gain weight and get hot flashes. I counted every calorie I ate and tried to do at least 300 calories of exercise every day, mainly on a stationary bike while watching TV.
The biggest problem for me was the hot flashes which kicked in after about 3 months. I had a fan by the bed but it was still difficult to get a good nights sleep as I would overheat and wake up, turn on the fan and then wake up again cold about 5 times a night.
Some patients also get depression but there is an anti-depressant that is also supposed to decrease the hot flashes. I didn't try that but if I had been on the hormone therapy much longer (I was on 6 months but the effects last 3 - 12 months after you go off) then I probably would have.
You just need to know what to expect and adjust to it. This is a good time to get in the best physical shape you can.
Docetaxel is a bit toxic so I might be a bit reluctant to take it on my first round of hormone treatment until studies show it is worthwhile for your situation which I don't think was included in the study.
Thank you so much for your reply.
John is in good physical shape. He goes to the gym 3 days a week.
He feels so good but with a spa of 7.2 his urologist and oncologist feel it is time to start treatment.
He is going to take casodex for 2 weeks (oral) and then get a 3 month lupron shot.
Hope he has minimal side effects. I take it your psa has come down since you are no longer on the medication?
I had a prostatectomy 6 years ago and then salvage radiation and 6 months of hormone treatment about 5 years ago. So far my PSA is still undectable but as I was T3B, GS 4 & 3 and PSA of 12 initially I do expect it to come back within 12 years. The PC hides out in the bone niche in a dormant state and then can return many years later, quite unlike most other cancers where you can say it is gone if it doesn't come back for 5 years.
A PSA of 7.2 is probably the point at which many oncologist would want to start treatment. Nobody really knows but I've heard of some starting at 1 and others at 20 for this situation. With a bit of luck going on and off hormone treatment will last for 10 years and by then there should be a cure or at least a really good drug to keep the PC under control.
Some people have more trouble with the 3 month shot so he might ask for a 1 month shot to begin with but your oncologist might have more knowledge about that.
