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Aloha Chuck,
My PSA prior to treatment avg 10-12. After starting Cosidex, then Lupron Depot for 2 months prior to IMRT. The PSA started to drop. 2 mths after, PSA was not detectable. Have been on LD for about 1 yr, have 2 yrs to go. PSA still not detectable. LD shots every 3 mths are difficult, no pain, but if I walk very far, my hips (shot sites) ache. Had been riding an off road (old sugar cane roads) bicycle, but right hand hurts from arthritius, so tried recombant. Got 3 miles from home, slight uphill coming back, hips hurt so much wanted to quit, but feared walking would be worse. Other effects are the hot flashes which continue, also mood swings, possible the shots also make it difficult returning to sleep after night toilet trips. Have loving wife and place to retreat from the world. Not getting deep sleep makes one very tired. Exercises are a must. Do not know if shots are bothering my eyes or not, blurred vison, eyes ache, going in today to check them out.
Joe
I appreciate the information you have provided. I wish you well and hope you become pain free. I continue to work out since I as a Marine officer, now retired, exercise has been part of my life for many years. I was almost stationed at K-Bay back in the 70's.
I'm kind of surprised your Dr. didn't put you on Lupron before and during your IMRT.
There is a synergy when radiation and hormone therapy are used in combination.
If you have provided stable PSA's for three years with no other treatment, I should think you will continue to do well.
I had 45 IMRT treatments this past winter.
I started Lupron 3 months prior to radiation and have now been on hormone therapy for just over 9 months.
I started out with a rediculously high PSA at 98.8
Three weeks after RT it was down to .84
My last blood test was 3 1/2 months post-radiation. It is now down to 0.34
This is nothing to complain about considering how high it was, but I'm looking forward to seeing it go even lower.
I've seen numerous accounts from men whose PSA was even higher than mine.
Some went down to undetectable just on hormone therapy and without the benefit of radiation.
Therfore, I won't be comfortable with mine until I see it break below .2 at least
Here's hoping that you don't have to endure the hormone therapy but if so, it's nothing a Marine can't handle.
My doctor doesn't like to over-prescribe. He is very conservative. Said he would do the operation but thought my quality of life would be better on radiation. I asked about seeds as an adjunct and he said I shouldn't need them considering the percent of my cancer detected (3%). My cancer was contained to one location (Left Apex) which I understand is hard to deliver seeds to and only 3%. The same as detected during my initial biopsy (I had four, two were all negative). He didn't think I needed hormone treatment but told me he would prescribe it appropriately if/when my PSA elevates.
Hope you reach your nadir goal of .2. Appears you are going really well considering your higher PSA. I want to stay off hormone treatment as long as possible.
Aloha Tony,
I'm going on a year of LD shots, with 2 more years to go. How long is your recommended LD treatment? What information did the docs base their recommendation on for your treatment?
Joe
Hi Joe,
My radiation oncologist indicated that they may want to keep me on hormone therapy for at least 2 years, possibly even 3 years.
I don't know if this thinking is the result of some study or guideline.
It may just be a function of the fact that I am a high risk patient due to the very high PSA.
Any way, I recently changed urologists and the new guy put a one year implant in my arm. He says when the implant comes out I will be at 20 months and he wants me to go intermittent.
The doc says that is more in line with the latest thinking.
I'm not so sure.
I wouldn't mind crossing that 2 year mark before coming off the treatment.
It just seems safer to me.
I'll cross that bridge when I get there I guess.
Aloha Tony,
Thank you. Do you know what the drug was that was implanted into your arm? Is there any ache or pain when you use the arm? My 3 month Lupron Depot shots in my hips ache and when I exercise there can be (not always)some bothersome pain. Sometimes enough to slow me down, or stop exercising.
Joe
Hi Chuck,
If your implant is rigid it's probably Viadur (same drug as Lupron}, if it's flexible it's probably Vantas (histrelin). Both drugs have been shown to produce castrate levels of testoserone. Both are being discontinued due to the high cost. You can read my previous posts on the subject. http://pub2.bravenet.com/forum/154144579/show/725432
The Viadur caused me very little discomfort except when rolling over on it when sleeping or sometimes lon sleeved sweatshirts or t-shirts. The aches and pains are gone now(with me it was leg and foot pain and stiffness) with a lot of bike riding and walking. Hot flashes have been successfully controlled with daily dosage of 20mg megace. The other undesirable effects I've experienced besides loss of libido, and ED, are extreme fatigue, weight gain, depression, and cognative lapses. No matter how much I exercise though I still have noodle arms and legs and a large spare tire. I have been trying to remedy this but to no avail by radically changing my diet. I also take large amounts of Vitamin D3 and coral calcium to prevent bone loss although I've never been tested. I kinda look at it as being under house arrest: Go to work, exercise and then go home and do nothing but sleep. The drug is scheduled to be out of my system in September and hopefully, I'll be on the road to a long recovery of "normal" testosterone levels. Hope this helps. - Pat Priestley (Alaska, USA)
Hey Joe,
That Last post to Chuck was meant for you! It's the cognative factor. Sometimes I feel like I'm going senile at age 55. - Pat Priestley (Alaska, USA)
Aloha Pat,
Thank you for the reply. I was in reasonable shape prior to beam rd tx, about 3 months with Lupron Depot. I do still have hot flashes, mood swings, bad fatigue, just dead tired, but with the three month LD shots into the hips, I still can exercise moderately. From what you describe, I'll continue the 3 month shots. Ever since the Navy, I've been about 165 lbs/6 ft high. Day one is a floor routine, lift weights, rubber resistance, stretch, crunches, etc. Day 2 is on the elyptical or just today 30 min bicycle ride, level, 3.8 miles. My PCP gave me some sleeping pills, but said that they would not work more than 1 to 2 per week. Last night, it worked. Usually can not go back to sleep. Sleep is good.
Joe
In regard to the Vantas implant, I have had it in for about 6 weeks now.
It has caused me no discomfort whatever.
The Vantas implant is made of flexible plastic similar to the material used in contact lenses.
I am pretty active in the gym lifting weights and also in sports.
If the implant was going to cause me any problem I'm sure it would have shown up by now.
I had mild hot flashes from time to time on Lupron and they seem to be more frequent now.
That is the only real difference I can report.
If the Lupron shots cause you difficulties, then an implant might be a good alternative for you.
Pat,
I have read your posts regarding the pending discontinuation of the implant due to cost.
Implants may not be profitable to the drug company due to development or production costs. I don't know.
I can tell you that the amount that was billed to my insurance company for the implant was less than the cost of the (3) shots it replaces.
That should make it acceptable to the insurance companies.
