Stage 4 Prostate cancer: Hi all - I... - Advanced Prostate...

Advanced Prostate Cancer

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Stage 4 Prostate cancer

MarcoGlenn profile image

Hi all - I have not posted in a while.

I am 50 years old. I was diagnosed with stage 4 prostrate cancer about 3-1/2 years ago. It was in my lymph system and most all my bones. My initial PSA was 1,882

Since then I did 6 rounds of chemo, 3 rounds of Provenge. I am presently taking Casodex (daily) and Lupron every 6 months. I also take 600 mg of calcium 2 times a day. I try to eat good. Every morning I have apples, strawberries, bananas and granola with unsweetened almond milk, for lunch I have black beans and long grain wild rice and maybe a few spoonfuls of peanut butter. For dinner I normally have a salad and what meat my wife cooks. I also drink turmeric tea and I and add two capsules for turmeric in 2 cups.

Right now my PSA is below 1 per the last PET-scan I had there is no uptake in my bones or lymph system and no cancer in my organs.

My doctor says I need to relax and enjoy things now. However I want to keep fighting and I do not want this to come back and not have time to fight it.

I am asking what you guys would do? Should I relax or are there other things I should look into.

Thanks in advance. I am really glad I found this site.

Glenn.

76 Replies

I will say do both ...relax and keep vigilance at the same time.. the reason we want to prolong our life is relax and enjoy our time on Earth with our loved ones...so certainly relax without putting your guards too low....Best of luck.

MarcoGlenn profile image
MarcoGlenn in reply to LearnAll

Thanks.

Fairwind profile image
Fairwind in reply to MarcoGlenn

To take your PSA from 1880 to below 1, that tells me to keep doing what you are doing ! Quality of life is just as important as treatment...Keep the two things balanced. If you get an uptick in your PSA, maybe switch the Casodex to Zytiga...I try to have plan two worked out in advance...Stay a step ahead, try not to get a step behind..

MarcoGlenn profile image
MarcoGlenn in reply to Fairwind

Thank you so much.

marykg46 profile image
marykg46 in reply to Fairwind

I like the way you have plan two worked out in advance. That's what I do before we visit the specialist. I go armed with info from the various men on this site who tell me what should come next.

MarcoGlenn profile image
MarcoGlenn in reply to Fairwind

Haha you sound like me. I drive my doc crazy asking what is next of what I am doing stops working. I try to balance my life as much as possible. You are so right that you have to live your life. My Grandkids do not know I have this and that is the way I want it to stay.

What is it you would like to do? You've come a long way, and you have no progression right now. Unless your blood calcium is low, supplementing may be harmful for both the cancer and CV health.

Thanks. My doc recommends the calcium to help heal my bones. Should I look into adverse effects from the calcium? Thanks for your reply. I am not sure as the future. I am just trying to make sure I am not falling behind and am not doing things that can help me in the future.

You may want to share these and discuss with your MO:

ncbi.nlm.nih.gov/pmc/articl...

cebp.aacrjournals.org/conte...

ncbi.nlm.nih.gov/pmc/articl...

Thanks.

Thank you so much for this. I have been taking 1200 mg a day of Calcium since diagnosed 3-1/2 years ago. I am going to stop tonight and talk to my doc next visit. Thanks so much.

Bunkerboy profile image
Bunkerboy in reply to MarcoGlenn

Personally wouldn’t stop calcium. My UrologistAdvised me in 2014 to take 1000 mg calcium and 1000 UI D3. Talk to your doctor first.

kapakahi profile image
kapakahi in reply to Tall_Allen

Oh jeez! Sometimes I feel like a tennis ball - all these contradictory studies whacking me from one side and then the other. Since I got PC 11 years ago, I've been taking 5,000 units of vitamin D for its alleged protective role in PC, and for its role in sending calcium to the right places (bones) and not the wrong places (kidney stones, heart arteries); and 1200 mg of calcium for a few years and 600 mg for the last few years plus two cups of milk daily. The first study (I haven't read the other two yet, not sure I want to now) was hard for me to understand, except that the protection of low calcium intake was true only for men with a certain genetic makeup that made them not absorb calcium well. Of course I don't know if I have that gene but I probably don't, given that I take a fair amount of calcium and I've had PC for 11 years now. But I'm 72 and I've been told my bones need calcium (I've also heard that's debatable, another example of contradictory studies), so what's good for bones is bad for prostate cancer - one hand giveth, the other hand taketh away. It's really impossible sometimes to know what to make of studies that seem to contradict each other almost daily - and it doesn't help that the media do a pretty poor job of presenting this news responsibly. Auwe!

Tall_Allen profile image
Tall_Allen in reply to kapakahi

You have to understand how to evaluate the various studies. They are not all of the same quality and import. I can tell you the following:

• The highest quality studies on Vitamin D are very good and tell the same story so far - Vitamin D has no effect on prostate cancer, heart disease, or bone mineral density.

pcnrv.blogspot.com/2018/07/...

• The calcium studies are not of the same quality. Some suggest that high calcium levels may make prostate cancer worse and has been linked to increased risk of stroke:

annals.org/aim/article-abst...

ncbi.nlm.nih.gov/pmc/articl...

That said, you should certainly supplement if your levels are low. Bone strengthening agents (like Zometa and Xgeva) may require extra. A simple blood test will tell you if you need more.

Thanks. I am on xgeva - so I will keep taking calcium and talk to my doc next visit. Thanks so much.

Make sure your blood calcium levels don't get higher than normal.

j-o-h-n profile image
j-o-h-n in reply to kapakahi

Heads you lose, Tails I win....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/19/2019 12:38 PM DST

MarcoGlenn profile image
MarcoGlenn in reply to kapakahi

Thanks so much. I talked to my wife and I am going to keep taking calcium and talk to my doc next visit. I need it for my bones. I am still active doing yard work and playing softball. I get xgeva shots every 3 months. So I agree with you my bones need the calcium. Thanks for the post.

Your bones only need extra calcium if your blood levels are inadequate.

WSOPeddie profile image
WSOPeddie in reply to MarcoGlenn

I take vit K2 with Nattokinase for bone health. Available at Vitacost.

I'd relax but also keep fighting.

You are doing great, stick with the Casodex. It does not make any sense to switch from a drug that is doing well to another drug that may or may not work and may have unanticipated side effects. Zytiga and xtandi will still be there should Casodex fail.

Also, my advice would be to lay off the red meat. Domestic animals are pumped full of hormones to make them grow bigger, fatter and faster. Those hormones can not be good for prostate cancer.

Thank you so much for the reply - good info.

Amazing progress! I would:

1) Celebrate the successful progress!

2) Take a deep breath and relax - PCa is a marathon, not a sprint

3) Recognize what is in your control (diet and exercise, reading to stay as informed as you can on the latest developments) - and focus on that

4) Put what’s out of your control out of your mind - none of us can control if cancer comes back. So why stress over it?We deal with that if and when it occurs.

5) Remember that the fight is so we can live! Spend time with our loved ones! Do things we enjoy! If you don’t focus on this, what’s the point of everything else?

Congratulations!

James

Thank you so much for the great advice.

Your post really made my day. You are doing everything you can medically. Now, go visit a beach, swim in the ocean, and let the sun warm you. I am so happy for you.

Thank you.

Your dx fact pattern is similar to mine, but I had way less bone involvement. I’ve been at this one year so far. No matter what you choose to do you’ll be inspiring me. Have a great weekend!

MarcoGlenn profile image
MarcoGlenn in reply to

Thank you and good luck to you.

It sounds like you have responded well

Good for you

So young

Enjoy your life

And all the very best

MarcoGlenn profile image
MarcoGlenn in reply to Bebby1

Thank you.

Bebby1 profile image
Bebby1 in reply to MarcoGlenn

My husband did not respond to the initial tx you are using

He became too ill with chemo

Had only two doses

Casodex increased the PSA after two months

Now on enzalutamide

And Lupron

Stage 4 with extensive bone Mets and lymph involvement

One month go go

Repeat PSA and scans

Fatigued

But hopeful

You are all in my thoughts

Stay well

MarcoGlenn profile image
MarcoGlenn in reply to Bebby1

Thank you so much. I feel lucky that I am doing good. I really hope your husband starts to respond to the medication. You are in my thoughts.

Wow Glenn, I can completely relate. After each treatment finishes I feel a huge sense of helplessness (hopelessness) and begin the search again for the next treatment. I’ve just got back to Oz after 6 weeks in the US doing Provenge, had a PSA drop, and are now going to try to stop and “smell the roses”... at least for a few weeks. I’ve had treatment after treatment since diagnosis in Jan ‘17 aged 43, so my advice to you would be to “relax and enjoy things”. Your treatments have obviously been extremely successful.

Cheers,

Cam

MarcoGlenn profile image
MarcoGlenn in reply to Cam73

Thank you and good luck to you. Wow 43 - keep up the fight.

Hello Glenn,

I also had a PSA of about 1000 at the age of 49 and can understand all of that. Since then life is like a roller coaster ride for me. Sometimes good sometimes bad. My next option is XOFIGO. As it looks, the treatment works very good for you. So best thing to do is: enjoy life. Regards Theo

MarcoGlenn profile image
MarcoGlenn in reply to HB1966

Thanks Theo. Always good to hear from others going through this. How long have you been fighting?

HB1966 profile image
HB1966 in reply to MarcoGlenn

My initial diagnose was in Dec 2015. More details are in my profile...

Regards

MarcoGlenn profile image
MarcoGlenn in reply to HB1966

Thank you and good luck to you - keep fighting bb

Get the bucket list done, start relaxing and treat yourself to what you would love to eat. Quality of life is important to. Stage 4 with Mets 3 years ago here. 69 this year next month. I go in monthly for shots and blood work as well as scans every 6 months Fight that monster but enjoy your time on earth as well, draw your loved ones close and love every day

Thank you great advice. Great hearing from people like you. This is the way I try to live my life. I have 2 Grandchildren that I want to be here for a long time.

Wonderful progress, congratulations and best wishes. What do you mean by “relaxing”? Do you mean your diet or just generally? If you mean your diet then the answer most likely depends on your personality. My husband is on a rather severe low fat vegan with fish diet. He could probably also “relax” it a little but then he would worry. So totally counterproductive. But relaxing in the general sense is always a good idea!

MarcoGlenn profile image
MarcoGlenn in reply to FSB12

Hi thanks for the post. My doc thinks I need to relax on looking for the next treatment. He says enjoy life now. When things turn he says we have options. I try to eat good, however if I go out I treat myself to things I enjoy. I am trying to balance things. Hope your husband keeps doing good.

Hi Marco I'm going on 19 months with stage 4 PSA is 0.1 since first month treatment with Zytiga,Eligard,Xgeva for bone Mets, and just recently finished my Provenge treatments. My Doctor has taken me off of the Xgeva because it waa affecting my calcium level he said not for good just until it leveled out again. I enjoy life to the fullest as should you . My advice is to stay true to yourself, put your life above everything, most of all keep a positive attitude Cancer hates that. Never give up never surrender. Leo

MarcoGlenn profile image
MarcoGlenn in reply to leo2634

Thanks so much Leo. I agree a positive attitude helps a lot. Keep up the fight.

Are you exercising? I would definitely throw that into the mix if you are able. Great news for you!! Keep up the fight and take time to play.

MarcoGlenn profile image
MarcoGlenn in reply to Sherpa111

Thanks. I do my yard work, play softball and walk some. I need to get better on the exercise. Thanks for the postbb

Hi MarcoGlenn, Thanks for your post. I found your story quite inspiring. To walk back from where you were to where you are now seems quite remarkable. As everyone here knows, PC is slog not a sprint. You seem to have a good plan and are sticking to it. I’m curious to know how you feel and what you think of your quality of life? The treatments can be their own hell sometimes. Living is the most important outcome but having some strength is sure nice too.

Also, if it is not too intrusive, could I ask what country you are being treated in? I’m an American. Reading through the post on this site I do notice some differences from country to country. For example in my last doctor visit my guy mentioned a scan that he wanted to do that was being used in “Europe” but wouldn’t be available here for another “8-months or so”. We had talked of an Axumin scan before but I believe that is already used here. Perhaps there is some new version of that. Stupid me, I didn’t think to ask what it was. I suppose I was still processing him saying that if I was 5-years older, I’m 63, “we might not do anything”.

Good luck to you on your journey!

Oz

MarcoGlenn profile image
MarcoGlenn in reply to MrOz

Hi Oz. I live in the USA Florida to be exact. Thanks for the post. My quality of life is good. I work, I play and spend time with my grandkids. I am surrounded by positive people. It really helps.

MrOz profile image
MrOz in reply to MarcoGlenn

Thanks MarcoGlenn! Glad things are going well for you. Grandkids will keep you moving! Take Care

Stop the peanuts! It's bad news all around for prostate cancer...almond buter a better choice in limited amounts. The turmeric you are doing is nearly useless. It takes 4g or more or high quality bioavailable curcumin to make a difference. Boost vitamin C and quercetin supplements and as the doctors said relax and enjoy life. You can't treat what is already suppressed. If it starts to come back consider low dose naltrexone, Anvirzel (oleandrin), oregano oil. I wish you well!

MarcoGlenn profile image
MarcoGlenn in reply to Biteson62

Thanks for the post. I will look into the info and adjust my diet. Thanks.

You're doing great. While we are all concerned about the future, none of us knows how it will play out. Some of us may end up having remarkable success stories. I was at a golf outing on Monday and met a guy, who had suffered from 2 different types on cancers (neither was PC). His prognosis was grim, at best. He was treated aggressively at MSKCC in NYC and is now cured. He is presented (with his permission) by his treating docs, to other docs, so they can actually meet him, since his recovery is soooo unusual. We have to remain hopeful that we will keep on chuggin along, and hpe that , if and when, one treatment fails, the next one will work, and that new treatments are on the not to distant horizon. Keep on truckin.

MarcoGlenn profile image
MarcoGlenn in reply to jfoesq

Thanks for the reply. I will keep a positive attitude, enjoy life and keep trucking

So pleased to hear of your progress. Discuss Casodex 150/day with your Dr.

Keep up the fight man! You inspire us with your routines!

I think you are doing all you can, keep up the diet, excercise and the great attitude, I think this type of cancer is treatable. In my 2nd year and watching the diet, exercising by walking to strengthen the bones, on lupron and still working part time, approaching my 68th birthday and feeling hopeful I will be around for many years. Looking back I should have done more when the psa started to rise but with some personal issues and helping my mom with her health issues I did nothing, can not change the past but can change the future, something we sll live with and just keep on going. I have alot going on and have to be around for others and my 5 cats which I love dearly.

Thanks for the post. I need to try and get more exercise. I wish you the best. Keep up the fight.

Meant 68th birthday, stubborn tablet I use.

A great report most of us here would like to have. Remember when seeking alternative treatments and lifestyles to add that you are NOT seeking prevention measures but rather TREATMENT choices. The result varies more than you might imaging. For example research about Vit C. I think I read that low oral doses are for PREVENTION and are just the opposite of what you need for treatment. I have not done it but high dose IV Vit C may be needed for aPCa TREATMENT. Take an extra trip, meet more often with friends, socialize and don't talk about the PCa journey. Just enjoy the time with family and friends. Actually that is another "treatment" to reduce stress.

Hopefully you can be one of the miraculous "cures" we read about occasionally. Right now slowing up this aggressive beast is almost a temporary cure.

2Dee

MarcoGlenn profile image
MarcoGlenn in reply to 2dee

Thank you so much. I will review your post more after work. My wife and I try to ignore PC between doc visits and I have asked family and friends not to talk about it. I just want to enjoy family and friends.

One word advice: L A U G H.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/19/2019 12:41 PM DST

The peanut oil will drive prostate cancer growth. PCa is one of the few cancers that efficiently metabolizes oil. There are some other issues with peanuts and cancer such as high methionine. Buyer be warned. You can research this as many alternative medicine doctors have become aware of this issue.

j-o-h-n profile image
j-o-h-n in reply to Biteson62

Peanuts bad?........ Poor elephants.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/20/2019 8:12 PM DST

High in methionine for vegan

Glad you are doing so well. I am also mostly vegetarian. I am over eight years from diagnosis and have one treatment of Xofigo remaining. I am still fairly active on the ranch, but have lost over 50% muscle tone. Still at 80 years, I do more than my peers. Suggest you check out the value of turmeric. I once used it as part of seasoning spices, but stopped when I heard of possible negative interaction. Note: I do not recall the source of this info and should probably check it out. Best wishes.

MarcoGlenn profile image
MarcoGlenn in reply to Shepard

Hi Glad you are doing good. Guys like you are an inspiration- I am also active. During chemi I keep doing my yard work, and I play softball once a week. I have been using turmeric. I will look into the interactions. Keep on fighting.

Hi Glenn,

Looks like you're doing well : )

What was your Gleason?

MarcoGlenn profile image
MarcoGlenn in reply to Fdccs

Hi I have not had a Gleason test. I keep seeing everyone else numbers, but my doc has not had me take one.

Fdccs profile image
Fdccs in reply to MarcoGlenn

Thanks Glenn, I hope you continue to do well x

jfoesq profile image
jfoesq in reply to MarcoGlenn

MacroGleen

I learned my Gleason score from the biopsy that was done when they first diagnosed me with PC. Did you have a biopsy done?

MarcoGlenn profile image
MarcoGlenn in reply to jfoesq

Yes I did have a biopsy - they took a swollen lymph node from my neck, but never mentioned the Gleason score. My doc does not seem to interested in it. I will ask next appointment

jfoesq profile image
jfoesq in reply to MarcoGlenn

That might explain it. I'm no expert, but I am unfamiliar with a biopsy being taken form places other than the prostate. As the PC spreads throughout the body, it's my understanding that some of the lower Gleason scored cancer cells can migrate to one area of the body, while higher Gleason scored cells can migrate elsewhere. This means that not all tumors in our body are the same grade, or have the same characteristics. So- in order to obtain a Gleason score, I think they would have to take a sample from the prostate and look at them. Even in the prostate, not all cells are equal.

MarcoGlenn profile image
MarcoGlenn in reply to jfoesq

Thanks for the explanation - I had no clue. They have done nothing with my prostate. I still have mine. My lymph system from my groin to my neck was affected. My first PETscan showed most all my bones affected also. Just trying to live a normal life now.

jfoesq profile image
jfoesq in reply to MarcoGlenn

I hear you. All the best to you and the rest of us.

Amazing Marco

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