Advanced Prostate Cancer
5,233 members4,901 posts

New to the group, diagnosed in May '16

I'm glad to have found this group. I began feeling ill in early April '16 and was diagnosed with PC in late May '16 with a PSA of 3275, Gleason 9, at age 51. Did six rounds of Docetaxel plus Lupron and Casodex until PSA rose from 0.06 to 40ish in March '17. Now on Zytiga and had a PSA of 0.94 in September test.

25 Replies
oldestnewest

Welcome aboard!

I am starting Zytiga, what were your side effects?

Rich

1 like
Reply

Nothing debilitating thank goodness. My nails are brittle, my blood pressure rose only slightly to about 128/85 from 120/80 (but it fluctuates) and I'm having more trouble sleeping (I'm guessing due to the prednisone). But, I was able to coach our seventh grade daughter in a 50 game softball season, so for the most part I felt fine. In addition, when the casodex stopped working my PSA had risen to about 40. Two weeks after starting Zytiga my PSA shot up to 73 (freaking me out), but two weeks after that had dropped to 11. The last four months it has been .22, .16, .28 and now .94. Good luck, Rich, and please stay in touch. I hope it works very well for you!

3 likes
Reply

get a good onco..you have crPCa

1 like
Reply

Hi gusold, thank you for the solid advice. I am pleased with my oncology team at Froedtert and the Medical College of Wisconsin. If you have any other tips, advice, etc. please feel free to share.

Reply

Joe,

Thank you for the prompt reply. Joe, keep good doctors and keep up on the research. A doctor told me with my profile, she was going to work to get me 5 years; that was 19 years ago.

Rich

5 likes
Reply

Hi Rich, oh that's great to hear! God bless and please stay in touch.

2 likes
Reply

God Bless and Good Luck;

Rich

1 like
Reply

Hey Joe, looks like life's beaten you up at only age 51. I was diagnosed April 2016 at age 49 with G10 and multiple bone lesions, but PSA of only 15. I didn't feel too bad then (other than in shock). I've also had Docetaxel and Zoladex. Zytiga looks like being next as my PSA has started rising again. Welcome to the group. Cheers Paul.

1 like
Reply

Hi Paul, thank you for the encouraging words. I hope you are feeling well and I'm very glad to meet you in the group. - Joe

1 like
Reply

Hey joe! I was 53,21/2 yrs ago upon my diagnosis. #4 non op gl 8 .....whatever the specifics we are all very similar and go though the same stuff ..Getting the “old mans” disease close to 50 was a shock.First question was why me ?What did I do to get this so young?In my case dad had prostectomy at 72and therefor I was to start checking at 40 Not me.oh no,Self employed no insurance ,I was like a lot of men,stubborn to get a check up. I always worried about the small stuff and never learned how to deal with stress in a positive way. High strung and worried about what everybody else was doing .I did a lot to help create ‘this condition inside of me.Initial diagnosis bad ,Flash forward after Rt and ADT , now no visible signs..Happy to be alive.But it hasn’t been without much mental physical and emotional turmoil.APC is a serious and life threatening opponent that we must spare with for life. Hold on to reasons to motivate yourself to keep fighting. You can so can you.Handle treatments and maintain your spirit That’s what it boils down to. A positive fighting spirit and a strong will do do Whatever it takes to survive with Advanced prostate cancer ..My world was turned upside down ..Saying that. Accepting a new reality is an important step. Then you will do what required. No male hormone will be one goal . That alone is tremendous. Do all that you can and it’s possible to live many years beyond whatever bad prognosis you are given .Dont dwell on drs. Stats. Rather be your own advocate and you can prove them wrong. If I could get some good results so can you.

2 likes
Reply

I agree with LuLu700 I have accepted my illness and changed my lifestyle, attack the cancer at all angles. diet ,Hormone T. and radiation, when I first got on Healthunlocked I wasn't sure what I would learn but I have learned a lot from Pcancer survivors here from their responses because we have basically have the same feelings about our illness. I now know there are other new protocols for Pcancer coming out everyday that work better. Staying positive and learning about all the different ways to attack the cancer is of the up most importance to survive.

God Bless

Robert

4 likes
Reply

Acceptance is a major step in recovery.Getting a brutal “C” diagnosis is difficult ..1st yr I was like “why me “ then I went to “Poor me” ..self victimizing is fruitless and counter productive. I’ve been through all these emotional battles .I’d bet most of us have ..Its basically the stages of grieving for what we’ve lost. I’ve had points where I just wanted to curl up and die. Definitely if not killed by PC quickly you become stronger with time towards that final important stage of acceptance. Are the daily effects easy ?.. By no means but I can say if not killed by PC immediately , us that go thrunthis are stronger and have a permantly different view of our mortality .Sorry I’m long winded. But a major positive aspect of listening and speaking in healthlocked is the therapeutic feeling of sharing our life’s with others in the same boat . Like you Robertleeb, you are a champion on helping others .You will receive blessings for this my friend. Take it easy !

2 likes
Reply

Thank you LuLu700 for feelings about life & dealing with what we have, I went to the cancer doctor yesterday and my PSA was .4, it was 9. last time before the shot, I was so glad to know the Hormone therapy was working, with everything else I am doing to attack it. I will start my radiation treatments next week and looking forward to keep fighting with all my might. that is the way we Pcancer survivors have change our life. If you have been diagnosed recently like me,with prostate cancer and new to all the bad feelings, it is a natural feeling but to take those feelings and turn them into something positive, will help you be a survivor too. there are so many new protocols for Pcancer, it keeps me on the positive side.

Thanks again LuLu700

God Bless to all on HealthUnlocked!

Robert

1 like
Reply

Hi Robert,

I'm very glad your PSA was 0.4 - that's awesome. Keep up the positive attitude - I know I'm trying to do the same.

Joe

1 like
Reply

Hi Lulu700,

Thank you for the great advice. I've had to work hard for everything I've attained in life, and I'm working hard to battle this disease, too. I'm glad to see you are doing the same!

Joe

2 likes
Reply

Yes sir, joeinwis, nothing about APC is easy.

Reply

Hi Joe,

Welcome! I can identify with anxiety and concerns over very high initial PSAs and PSA roller coaster rides. My PSAs were 5,006 then 1.0 then 95 then 1.4 over the past 4 years.

For other details see:

healthunlocked.com/advanced...

It's great to hear of your Living Your Life in such rewarding ways like coaching your daughter's softball team. Those times and experiences are priceless.

If you ever feel the need to talk about things face-to-face with others who "get it", there are Prostate Cancer Support Groups located near you in Wisconsin. See:

ustoo.org/Support-Group-Nea...

(I attend some local Prostate Cancer Support Groups, myself, and find value in them. Each has its own "flavor". "Advanced" guys are often in the minority, but that's OK. This past year I met the User here who goes by gregg57 in one such group. More recently, we've both met a man who had a quite high PSA at original diagnosis at age 34, and who is now getting comparable treatments at age 36, with a wife and 3 young children at home. He's been tested BRCA2 positive, which might affect his future treatment options.)

Hope you and yours enjoy the Halloween and Holiday Season coming up soon, Joe.

If in doubt, Hug a Loved One.

Charles

4 likes
Reply

Hi Charles,

Thank you for the great advice about the support groups. There is one at Froedtert Hospital in the Milwaukee area, where I receive my care. I haven't gone yet, but I'm hoping to go to the next one.

I'm also getting ready to coach my daughter's eighth grade basketball team. It's a great way to get a little exercise and forget about some of the things that typically are on my mind.

Best of luck to you, and please stay in touch.

Joe

Reply

I was on Zytiga plus Prednison for five years with good results and few side effects. Now on Xtandi + Pred. & hope to have equally good luck. At my 16th year of PCa--so your outlook should be very good. Best wishes.

2 likes
Reply

Comparing our diseases ? Don’t know how positive that is because it basically all about suffering. But compassion and sharing can heal us all spiritually .

Reply

hello Joe in Wisconsin,

I know the going is tough but try to laugh and keep laughing...

Good Luck and Good Health.

j-o-h-n Wednesday 10/18/2017 7:39 PM EST

Reply

Hi John,

Thank you for the great advice. I do try to laugh every day as often as possible (I have hilarious coworkers who keep me smiling) and I get up and always remind myself to "Be myself" each and every day.

Reply

Hi Joeinwis, m.ay I ask what was occurring in early April 2016? You stated that you began "feeling ill," so could you give more explanation as to what "feeling ill" meant? Lack of sleep due to frequency of urinating during the middle of the night? Back aches? Swollen feet and hands? Difficulty maintaining your weight? I thought prostate cancer usually has subtle symptoms, rather than full-blown signs of prostate cancer. I was wondering if the doctor found your cancer by your merely telling him/her that you felt I'll. Or was it discovered at, say, your annual physical? Thanks for your response, if you are so inclined to answer the question.

Reply

Hi sdnb, yes I'd be happy to share. I hope it's not too detailed. It was April 7, 2016 and I was at a special work meeting where we were doing a one-hour session on Mindfulness. The session ended and I stood up from a chair and felt pain in my lower back. I assumed it was a slight muscle pull and went to PT. The therapist asked me some good questions, and I told him I had gotten the chills a couple times recently and night sweats.

He told me to go to my general practitioner, and she did some blood tests. My alkaline phosphates number was way high at 377, which can signal bone damage, but the doc didn't suspect prostate cancer. As a couple of weeks passed, I started to lose weight quickly and became fatigued a lot, with chills and night sweats becoming more pronounced.

The doc was looking in a different direction (liver issues) but at the same time I was re-upping my life insurance. The life insurance co. did blood tests, and did a PSA test, and it came back high. I went right to my general practitioner and she did a PSA, and it came back at 3,700-ish. This was on May 20. I went through a battery of tests and the oncologist told me I had Stage 4 prostate cancer on May 27, although it was obvious on May 20. I didn't have any trouble sleeping or any swelling.

I was diagnosed just after turning 51. I had gone in for a checkup at 50 and the general practitioner did a digital rectal exam, but likely missed the cancer somehow. I had never heard of a PSA blood test and I have no recollection of her even mentioning the possibility.

Reply

Thank you Joeinwis for your reply. I read on HealthUnlocked about sugar, I have tried to take away all the foods that are bad, and it seems most foods can be bad, meat in all forms , eggs, diary products, what is left veggies and they have pesticides , trying to buy organic can get real expensive. I thought about this and actually changed my diet for my diabetes and I have reversed my diabetes but dealing with prostate cancer and reading what all the foods that can make the cancer feed on it. I have realized that the cancer cells were once normal and mutated and is a part of our bodies. I am thinking they can multiply with anything we eat. I remember reading about not eating too much food with cholesterol which would clog arteries. and now they are saying sugar can inflame the internal walls of the arteries and swell causing the cholesterol to get stuck . totally different then the original warnings. my protocol for food will be what I have been doing to change my diabetes and reduce as much sugar as possible. I had the hardest time drinking coffee without sugar so I started using Honey. Now I won't be using honey anymore. drinking it without any kind of sugar.I think sugar seems to be the culprit for humans to get any kind of disease. I know our normal cells need sugar to keep going too, but the sugar I will eat will come from foods that turn into sugar, like pasta , bread. potatoes . I have never quit eating them I just eat small portions at a sitting and eat veggies like its the main part of my meal. it worked for my diabetes and I feel it will work for my Pcancer. I just have to be more vigilant, when I was a teenager I remember my mother telling me to eat the veggies because they were good for me. I did have a thought about what she said. what ever we eat keeps our bodies going but if we ate the right foods, it will keep us healthy too. I am still working on this because when I was young I ate the foods I preferred and most of them had a lot sugar, they put sugar in almost everything to make people like it. its a hard road with a lot curves and bumps but taking in as less as possible for both of my diseases will be a life long venture for me.

God Bless

Robert

1 like
Reply

You may also like...