New to the group and new to Advanced Prostate Cancer

Hello everyone,

I just found out in late February that I had advanced prostate cancer so I'm still adjusting to the "new reality". I went in February for bone pain in my lower back, hips, legs, shoulders and ribs. The pain was just getting worse and worse. After a CT, bone scan and bone biopsy, they told me I had metastatic prostate cancer. My PSA at the time was 300, but went up to 400 by the time I started treatment. I started Casodex followed a week later by Lupron. My PSA went from 400 to 12 in one month. Then I started Docetaxel the next month based on the successes of the CHAARTED and STAMPEDE trials. My PSA continued to drop and after cycle 1 was .6

I still have a lot of anxiety and fear about what's coming down the road, but I'm also continuing to learn how to live in that only moment of time we are given to live in. I really have excellent quality of life and really appreciate the life I have. That's part of what makes it hard too.

I'm looking forward to being part of this group, giving and receiving the kind of support that can only come from those who have "been there".

[JamesAtlanta]

Your journey sounds a lot like mine. Mine began 2 years ago. And I have had the same treatments. My PSA was 227 and Gleason 4+4=8. My PSA is 0.8 now and been working full time through it all.

I applaude your attitude. Dealing with Pca is a pain, but the fight is worth it. My advice is to keep doing what you are doing. Exercise is key to dealing with both chemo and Lupron side effects Walk. Lift light weights. And I'm even doing yoga now, which is actually a lot of fun.

This community has helped me and I know all the caring folks here can help you with any questions. It is amazing how well informed everyone is. And how willing everyone is to help.

Good luck on your journey. Our thoughts and prayers are with you 🙏

[YostConner]

Gregg,

I'm sorry you have PCa at all and that it was so advanced when discovered. I applaud your aggressive approach. You'll have down days, but your attitude suggests they won't predominate. Keep fighting to keep that quality of life high.

Yost.

[Hidden in reply to YostConner]

Thanks for the encouragement!

One of the more difficult aspects of being diagnosed with PCa was the loss of control over my life. All of sudden the cancer was calling the shots. Suddenly, my life revolved around tests, appointments, etc. The cancer knocked me down to the floor with a hard blow. But then I said "F the cancer!", got back up off the floor and started fighting.

I had a great quality of life before this and I damn sure wasn't going to let this disease take it away from me without a fight. F the cancer! For me, fighting the cancer and taking back as much control as I can is an important part of my quality of life. Right now, I'm suffering a bit with the chemo side effects, but knowing the cancer is suffering more gives me a certain level of satisfaction. I'm taking as many of them out as I can.

Don't give in without a fight!

[YostConner in reply to Hidden]

I'm smiling right now. When I was diagnosed 10 years ago, I figured the first thing I needed to do was to "put my affairs in order." And I did. Before my surgery, all that was squared away. But then a funny thing happened. I fought. And everyone around me fought with me. And I lived. I saw my son graduate from high school. I saw my daughter graduate from college. Then my son graduated from college. Then I walked my daughter down the aisle. Then she got a graduate degree. And I got married! Celebrations every one! I rejiggered things at work. I had traveled before my diagnosis, but since my diagnosis I've been to all seven continents. I've seen sights. I've engaged with other cultures. I've become more politically active. Like you, before my diagnosis, I had a pretty good quality of life. Have things changed? Sure. And some of them have been wrenching changes. Our perspectives on quality of life change. And they're definitely better than the alternative.

Keep fighting, my friend. Don't just "don't give in without a fight"--don't give in at all.

[charmander in reply to YostConner]

Yost is right on the mark!! I too went from preparing for a life with prostate cancer to living my life. The F-ing cancer has also afforded me a new outlook on life, on whats important, on how to appreciate all that is around me and to appreciate all that I am too. I am being 100% me now! not caring as much what people think of me. I'm free to experience and appreciate life now in the present moment as I check off my "I will list" (I hate bucket list). My word for this year is adventure and I set daily intentions as to how I want to be each day. I look for the good around me and discard people and activities that no longer give me joy. I don't have time for that any more. Gregg you've found a great home here amongst fellow brothers all of us here for each other. Your attitude is inspiring! thank you for sharing.

[Hidden in reply to charmander]

"I'm free to experience and appreciate life now in the present moment..." I think you hit you hit the nail on the head Charmander. That's the key right there. The end of the road is really the same for everyone, whether they have PCa or not. Nobody can live in any other time but the one moment of time we are given to live, the present. In that sense we are the same as everyone else. I can't let "I'm going to die some day" thinking interfere with living my life to the fullest in each moment. Repeat after me: In this moment, I am fully alive.

[charmander in reply to Hidden]

woohoo!! my new mantra

[Dr_WHO]

Sorry that you are here, but please know everyone is on your side! It is a big shock when they tell you that one only do you have prostate cancer, but it is advanced (unfortunately I know). I can not give you any advice outside to please keep up your spirits, and do not be afraid to fight the doctors if you do not like how they are treating you. Also, please know that there are A LOT of men here that have felt with advanced cancer for over a decade. There is no reason you can not be one of them!

[pjoshea13]

Gregg,

Anxiety & fear is what I mostly remember from the first year or two. One can be positive during the day, but those 3 am thoughts are not good.

It's funny to think, as I come up to my 50th wedding anniversary (Sep), that I have been living with PCa for more than a quarter of my wedded life (actually, adult life too).

And when I hit 70 in January, I would have had PCa for 20% of my entire life.

In many ways they have been very good years. At some stage it all became 'normal' & life could be enjoyed without thoughts of death intruding.

Best, -Patrick

[DFZ4835]

Gregg you have found a place where we all have the same problems. You are not alone we are here for you. You will find a vast amount of knowledge from this forum that you can tap into. We aren't doctors here for the most part and are all willing to help in any way we can.

One of the most important things you can learn that your positive attitude will keep you going and alive. Welcome to the Advanced Prostate Cancer group. Someone will always help to answer your questions.

Dennis

A friend.

[Hidden in reply to DFZ4835]

Thanks Dennis,

The feeling of being alone was one of the hardest parts of this for me. Nobody can come inside you, share your experience directly and walk with you on this journey. But being surrounded by others who are walking down the same road helps relieve that loneliness.

[Hidden]

If you have an advanced form as we both have,we will be vigilant the rest of our life in trying to keep up our health and stay ahead of this if possible.If I think of the negative possibilities of what "Could" happen it's frieghtening..But your good attitude and appreciation will get you through it.Sorry that we are in this position but this is a positive outlet.Good job finding it..Good luck!

[Hidden in reply to Hidden]

Somehow I still think of the world as consisting of 2 types of people: Those who are dying which includes me, and then everyone else. But the truth is the two types are: Those who "know" they are going to die and those who don't. The definition of dying is "gradually ceasing to exist or function"

The crazy thing is that everything you are saying really applies to everyone, not just those with advanced PCa. Some people will get lucky and die in their sleep at age 105, but most of us are going to be killed by some sort of disease or things just failing. There are far more similarities than differences. If you compare crash landings, they are more or less the same. In that sense, everyone alive in this world could really be afraid of what "could" happen but I think most people create a bubble around themselves as protection. In that world, death is something that only happens to other people. The difference for us is that we've had that bubble taken away. I happen to think that's a good thing. The concept of some sort of "imaginary future" is no longer part of my reality. Because in reality, there is really only one type of person: the one that is alive. In that sense, we are all exactly the same. To me, that's one of the bizarre aspects to this.

[Hidden in reply to Hidden]

It is good.Previous to P. C. I felt invincible .No illnesses ,Healthy life..Never really thought about death,until kidney failure and near death.So you really don't think of these things when you are a young man and healthy.Some say that you don't really start living until you Face death.. That "imaginary future" we are all crash landing,just trying to stay in the air as long as possible and hopefully have love and find some enjoyment while hear on this mortal coil..

[Hidden]

I was fairly happy before my diagnosis, but somehow I am happier now. I agree that part of it is facing death and also learning how to live in this moment of time, being fully alive in the present tense. I credit a lot of my increased happiness with not thinking about the future.

[Hidden]

You are ahead of the game.. I will follow you.

[fmh1]

I, too, have been on a similar journey. Originally diagnosed in 2015, I originally had EBRT followed by 66 seeds of brachytherapy. Sadly, I went from stage 2 to stage 4 in 2019 and had chemo, followed by Eligard/Firmagon, and now the Orgovyx daily tablet. The good news is that, although my cancer is metastatic to the spine --- 2 spots --- my PSA has been undetectable since 2019. I follow the Care Oncology Protocol (CareOncology.com) as an adjunct therapy, and it seems to be helping. I also take the dietary supplement Protectival (Protectival.com) at the maintenance dosage, three tablets daily. Both the Care Oncology Protocol and Protectival are supported by solid science.

Hope this is helpful!