Decision time on Surgery & Radiation, all test done
Comments
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The side effects seem to be under control for you for now best of luck on the OAR treatment. Maybe I’m a pessimist but it just seems like all of us are guini pigs for cancer trials. I have much to learn about all this and like I said I haven’t even met with the oncologist as of yet so God knows what that’s gonna be like. If you saw my family history with cancer you would flip out. Keep the faith I will touch base again after your OAR surgery to see how that went but my meeting is on Dec 20. I’m trying to learn what I can and jot down questions as I go to be somewhat prepared. Right now lots of thinking and anxiety leading up but don’t want to get too far ahead. Talk soon
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They can keep us going for a long time on just hormone therapies.. I have an Uncle-In-Law that has been on Hormone Therapy for 14 years. I watched a video testimonial on a guy who made it 15 years or something on just Casodex (every other month), before needing to go on stronger hormone drugs. Lots of ways for them to treat you these days.....
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All these drugs etc.. I am not a pill taker per se so all of the therapy drugs is very unsettling. I have so much to learn and will probably need a few days to realize what’s really happening to me. Seems like a bad dream right now. I feel totally healthy with no cancer side affects so it all seems unreal right now. I really appreciate all the info from people like yourself. My oncology meeting is Dec 20th. I’ll bet if we went to 3 different oncologists we would get 3 different therapies. That’s the sceptisism in me. So that I am clear, all the drugs u are taking now are ADT related?
FYI I’m from Medina Ohio and I believe you are on the west coast or near? Are there any nearby local members out there? I’m still learning how to work the website so if something seems strange let me know.
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Hormone therapy for 14 years? Well, I guess everyone’s treatments are unique God bless him. Also, I see that diet and exercise can work very positively for some and I just ordered a book by Jane McLelland that had good reviews. Just looking to stay positive and in the proper state of mind.
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Most oncologist will give you a similar treatment protocol. It is all about removing testosterone from your body... This basically puts the cancer on ice, for as long as your cancer stays dormant from lack of testosterone. At some point the cancer will figure out another way to survive, which is why they have other generation drugs out there.. Hopefully they can kill most of it with radiation.
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No, you are not a guinea pig for cancer trials, unless you really have enrolled in one. The protocols that doctors use are 'standard' for the situation at hand. I will add that they are typically based on the results of trials and some of these don't hold up as more results are obtained.
PS: Doctors don't want to be sued and don't want to loose their license to practice by using non-standard protocols. There are some though that do walk right on the edge of what is considered standard.
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Treatment Update -- Just incase any of my data is helpful to you.
Testosterone dropped from 400 to 4 (30 days), and PSA dropped from 5.4 to .95
Been on Hormone Therapy for 6 weeks now
Phase 1 - Casodex for 30 days. No side effects except for being a little jittery/stone, especially when my stomach was empty.
Phase 2 - Lupron (2 weeks into Casodex). Same as Phase 1, no side effects except for being jittery.
Phase 3 - Lupron, Zytiga & Prednisone (for next 2 years). Not sure what is up, but I feel really good with no side effects. My mind is very clear and I no longer feel jittery. Might be the steroids, giving me a little perk... Might change in a few weeks, but I'm hoping this is what my next 2 years feels like.
I take 1000mg Calcium and 1000 IU Vitamin D-3 every night. My potassium was low on my blood work, so UTSW prescribed me some meds.
I'm in the Gym 3X a week (free weights & Cardio) and I also get massages 1-2 times a day. I bought one of those "Zero Gravity" Massage Chairs. Not sure it helps, but feels pretty good. Plus, I have read it might help with some of the HT side effects.
I have surgery Jan 8 (Space Oar) and begin SBRT Radiation on Jan 21st. I will be done by Feb 1st.
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Old Salt, I have recently joined this network and have found your comments and advice to be very informative. I have had MRI, biopsy and recently PSMA scan. I don’t like to post or ask questions much till I meet with oncologist on Dec 20th. I will post more then and hope that you can add your personal wisdom moving forward. I tried but could not find your bio so forgive me as I am new to the forum. If you care to share your history that would be great. Thank you.
Doug 4+3 SUV 3.6)mid right lateral only with 3+4 in vicinity as well plus right iliac internal lymph node SUVmax 9.1.
Medina, Ohio
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Thanks oldspice for the complement. I am not a medical professional but do my best to stay up-to-date with respect to the prostate cancer topic.
I just added my personal 'story' to my profile. I had some trouble finding the location for posting 'histories' and never got around to it until now.
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I hope to be as knowledgable as yourself someday. You are10 years my senior and have been fighting a long time. Just know that your knowledge and insight is a treasure for many. For not being in the medical field you have studied well. I read your bio and I wish you an all others the very best. We are the unwanted club but it’s great to know we are not alone. I know I will be hearing from you a lot down the road as well as others such as “Lasermarketing” and “Clevelandguy”. I will meet many pre along the way. Thanks again
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lasermarketing - Treatment Update
I went through your 2-year treatment protocol about 3 years ago, but I was further along on my PCa journey and successive radiation treatment protocols than you are today. My radiation protocol (this time) was SBRT to cook some local PCa in my left pelvic bone (local metastasis).
I don't want to scare you or upset you in any way, but I do want you to be fully aware that the next 2-3 years will be quite challenging for you with this treatment protocol. Yes, everybody's reactions to the side effects can be different in terms of their frequency and severity; however, I can assure you that the side effects will become quite pronounced for you in the near future. ===> fairly extreme transitions between cold chills and hot flashes at intervals of every 10-25 minutes; profound fatigue in performing routine physical activities; changes in mood swings, including emotional ups and downs that you never experienced before (estrogen will be the dominant hormone in your body); and a drop in motivation to perform/complete activities that need to be done.
At the end of your 2-year treatment protocol, do not expect these side effect to quickly go away, as they will continue on for quite some time. I am now 11 1/2 months from the conclusion on my 2-year treatment protocol, and the side effects have not yet diminished. My testosterone level was 3 for the 2-year treatment protocol period, and now almost a year later, it has increased only to 10. HOWEVER, my PSA is currently undetectable, and that is, and will always, be the most important statistic that I follow in my PCa journey.
Again, I give you this information only so that you will know what to expect and take appropriate measures along the to minimize their impact on you and those around you (very important). For example, I have several headbands on hand to stop the hot flash sweat from running down into my eyes from my head during each hot flash, and I keep a bath towel nearby to wipe off my arms and the back of my hands, which shed sweat profusely on the more severe hot flashes. I keep a few full length zippered fleece jackets on hand, which I put on during the cold chills (temperature in my house is set at 74 degrees) and then take them off during the hot flashes. Last, and equally important, I work very hard not to immediately react/reply to anything that folks say around me, but to think first, and then respond (due to estrogen being the dominant hormone in my body).
Hopefully, the above will give you additional information and perspective as you enter this phase of your PCa journey, so that you can better manage it. Try to remain as physically active as you can, as that activity can be helpful in managing the side effects (particularly fatigue). I wish you the best of outcomes on your PCa journey.
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Hey Josephg, sorry to hear about all the side effects you experienced. Were they mellow at first and then got worse? How many months in, did they start to get bad for you? I am now into my 7th week on Hormone Therapy.
Also how old are you? I wonder if age, metabolism, active life, exercise, has anything to do with the side effects. For sure, I was prepared for the worse, and just enjoying the no-side effects of the moment. But yes, I do realize they could come into play at some point. Which is why I will be a gym rat for the next 2 years plus... I am 56 years old, but was already in pretty good shape from the gym. My oncologist did tell me that not everybody gets the bad side effects.
Thanks for the info and glad to hear your PSA is sill undetectable.
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How old are you? Yeah, i have read many different stories and the side effects hit everybody differently. I am for sure prepared for the worse, and will see what happens in time. Thanks
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Been a long time, but wanted to give an update on my treatment.. Hope everybody that message me, is going good on there treatments too.
I am now entering my 13th week of Hormone Therapy. I had radiation originally scheduled last Monday, but we had to reset it 3 weeks. My work changed insurance Feb 1 and there was not enough time to get it all done with new insurance.
So far, I still have pretty much no side effects. I did have one change, I had to stop Zytiga about 3 weeks ago. My Liver enzymes blew up to dangerous levels and they had me stop it. Instead of 4 pills a day, they had me start back up today with 3 pills a day. They will monitor me weekly, to make sure all is good.
My PSA before I stopped Zytiga was .08 ng/ml and moved to .11 ng/ml last week. Testosterone was 4.3 and went to 8.6 last week. With me taking Zytiga again, my numbers should go back down, but both are still extremely low my docs tell me.
Anyway, I am very active, working out 4 times a week and have really stepped up my free weights and cardio... Must be working since fatigue is not really an issue. I also massage about 1-2 times a day. I have a $4K Zero Gravity Massage Chair at home. It also help.... I have gotten a few Charlie horses in my legs and even get them sleeping a few times. That might be a side effect, or perhaps I worked the legs too hard in the gym.
Anyway, hope everybody is good and progressing well on treatments.
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Seems like so long ago…Great to hear your treatment is doing good things for you. The exercise seems to help a lot. It really is awesome to hear good ole positive news from a member of the group. I am curious how you are managing any weight gain what say you? Thanks for the update and reach out again in the future.
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Another update....
• Going into my 16th week on Hormone Therapy and still no obvious side effects. I realize the majority on here have had bad side effects, but it is possible to have none or very minimal side effects.
• Finished my radiation today
• Heard some great news today... They can re-radiate me if anything was missed in the area. I went with a brand new MRI Guided SBRT at UTSW and due to the pin point accuracy (to millimeters) they know exactly how much dosage was given to a certain area. If another spot pops up in the same region, they can spot radiate it. As long as that area did not have a full dosage or radiation or something. They said radiation is very different, then from just a few years ago. But of course, if it spreads through the body, then the treatment plan is totally different.
I have not been working out much in the last 4 weeks, I was out with Covid for a week, then hospitalized with MRSA infection and then radiation for the last 2 weeks. I did continue with (2) 45 minute massage sessions per day in my 3D chair and I still feel good. Bones feel good, no soreness or fatigue. I am starting back in the gym this week...
Take care
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