New Here - Wife with Stage IV Hubby - Advanced Prostate...

Advanced Prostate Cancer
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New Here - Wife with Stage IV Hubby

spikezoey
spikezoey

Was inspired to finally introduce myself here by lincolnj8's post (healthunlocked.com/advanced...) and by Dan59's reply to that post. They both appear to have similar stories to my husband's, and I'd love their input and support. If there are others out there with hopeful stories of survival after initial diagnosis of stage 4 with bone mets, would love to hear from you! (And from anyone else, of course.)

Hubby is 51 and just got diagnosed with stage IV Gleason 9 (4+5) on June 1st. PSA was 211 and alk phos was 919. Bone mets all along pelvis and spine and spots in other random places (eye socket, arms, thigh bones), but thankfully no epidural extension. Mets in expected lymph nodes near pelvis/back. No symptoms except for blood in urine that started less than a week before diagnosis, and some bone pain/tingling in leg, which we thought was due to biking issues, but which turned out to be caused by the bone mets/compression fractures.

After a month on degarelix (now switched to lupron), zytiga, and prednisone, his PSA dropped to 1.9 and alk phos down to 700's. Apart from some hot flashes the first few weeks and the usual sex drive loss that comes from suppressing testosterone, he's doing great. His random bone pain that he was having that we now know was due to the cancer stopped within four days of starting the meds.

He is in really good shape (no heart disease, no diabetes), except for the cancer - you wouldn't be able to tell he has it. He's an avid biker (did a double century for MS150 last September and will do it again) and he's been able to ride 50-60 miles at decent speed (17-18 mph) on weekends and shorter rides during the week since starting treatment. He had intentionally lost about 30 lbs since January (I lost about 25) by doing low carb/moderate protein/high fat. He's 6'1' at about 188 lbs. There's been some muscle loss that I can see, but again, he's still feeling really strong.

What does the future hold? At first we were terrified because the median survival rate for his treatment (or rather, the study on lupron+docetaxel chemo, which has been shown to have clinically similar results to lupron+zytiga) is 51 months. We were living like he was going to drop dead in 4-5 years. But then we changed our attitude and things are much better. Our attitude is: be grateful for today and love it, and also live today doing the things that will make our lives last as long as possible (food, exercise, etc.)

We have a lot going for us:

-He's young(ish) and strong and fit and exercises regularly (he's training for another double century ride for MS150 this September)

-He's reacted really well to the treatment so far

-The median is just the median - we're going to look at him as the one on the far side of the standard deviation, and beyond (set a new record! live 20 more years!)

-We're dropping meat and going to organic veggies and free-range eggs (we'll still eat fish)

-He's adding in some supplements (already was doing vitamin D and calcium, but is going to add lutein and selenium, maybe some others)

-After reading more on his current treatment, we asked our oncologist to add a small amount of Avodart to his current regimen, and she agreed (current treatment eventually forms metabolytes that encourage the cancer growth, and the Avodart helps stop this, making the treatment work longer)

-We're going to go to the conference in October in Newport VA to keep getting informed and seeing Snuffy Meyers

-We're going to keep going to the prostate cancer support group where we learned about Avodart and Snuffy Meyers so we can stay informed

-I'm going to stay on this list so I keep learning from y'all

-He's an awesome guy with a great attitude toward life

-He's got an awesome family, friends, and workplace that are super supportive

Would love any tips on lifestyle changes that we can make/improve on. We're in the process of reading Radical Remission (radicalremission.com/about/...), so would be interested in people's thoughts on some of the items noted there to help fight cancer.

25 Replies
oldestnewest

It sounds likehe is doing all the right things! I am still here! Let me know if I can be of any assistance. Being in good shape and 51 is good prognostically remember so many men that make up those now outdated survival curves, where in there mid 70s

spikezoey
spikezoey
in reply to Dan59

Thanks Dan59! I'm now following you so I can track your progress! Thanks so much for your hopeful story. Any particular lifestyle changes you made that you think have helped you?

Dan59
Dan59
in reply to spikezoey

In the early going, I followed whatever Dr Myers said in his Book for diet, ie give up red meat, no egg youlks though whites were ok, so eggbeaters were ok, but did not really do egg beaters cut way back on dairy fat ie since I have used skim milk, and only used olive oil, I continued to live my life as it was before cancer, Prayed a lot. Nowadays the new treatments and the way they do them is an order of magnitude better than then, for instance now the often do chemo upfront with early adt. I did not do chemo till 10 years in with a then galloping psa trying to catch up, Chemo did not bother me so much, I beat it with exercise and ways to mediate the side effects. I started chemo 2 years ago and am now in my 13th year since diagnosis. I Would pay close attention to what Myers says now. I only saw him 1 time as it was a long trip.

All the best, I am here anytime you need some encouragement , or any advice I can offer as a long time patient, never give up hope!

Enjoy every day, often cancer forces us to make the most of life, and often it can be better for that reason than precancer.

Dan

spikezoey
spikezoey
in reply to Dan59

Thanks Dan59 ! I am taking hope from your story, particularly since my hubby (like you) exercises. I do think that there's a commonality among the men who have posted on the Advanced PCa page who indicate that they have few side effects/good responses to Zytiga/Lupron/Pred: they all indicate that they are active and exercise.

I have heard dairy is something that one should give up if one has cancer. That may be a hard sell to the hubby, so if you have any studies that you know of (I guess Snuffy's work says to give it up, yes?), I'd love to see them. He is more willing to give it up if it appeals to his rational brain. :)

Dan59
Dan59
in reply to spikezoey

I think the bottom line is that a heart healthy diet, as snuffy suggest is better. There are all kinds of studies< I tend to believe the ones done on humans and in a randomized clinical trial setting. Bottom line for good overall health(which it is good to have when fighting cancer) a Heart healthy Mediteranean diet,will be invaluable.

Thank you for sharing your story zoey and everyone else. I can totally relate and have been learning a lot from all of you. For several days I've been feeling down because of my dad's diagnosis. Seeing him in pain hurts me, plus we have to think about how we will be able to get our hands on Xtandi which the doctor said will help a lot in his treatment. Reading this made me realize that I am not alone and that just like you, I have to remain positive and not lose hope. I didn't think I'd be able to connect with so many people in the same situation. I'm just really grateful. Let's continue to support each other throughout this journey.

spikezoey
spikezoey
in reply to iyagrrrl

Thank you. I’m so sorry you’re having trouble getting what your dad needs. I hate when people who need medicine are denied it due to not having the “right” insurance. Let us know how things go with your dad. Hugs.

Feel free to click on my profile to see what I've done and the changes in diet and life style I've made. I was given a similar DX to your husband back in March 2014.

PSA remains undetectable for nearly 4 years, scans are clear. I'm not cured, and things could always change, but I'm in a good spot. I still live like the future is uncertain and make the most of each day, I don't take this situation for granted. Pray hard. Best of luck.

Ed

spikezoey
spikezoey
in reply to EdBar

Thanks Ed. I read your profile - you have gone through a lot. I love your attitude. That is such a huge part of it.

He’s doing all the right things . My RO , who treated Dr Myers and follows his regimen, also has me on metformin, a statin ( rosuvastatin) , cabergoline, avodart, and Celecoxib, vitamin D3 and calcium. (I was on the statin and celecoxib before dx with PCa and he told me to stay on it).

I haven’t completely eliminated anything from my diet but I eat mostly fruits, salads, grilled veggies, chicken and salmon with emphasis on good carbs , good fats and protein .

I’m now on vacation from ADT and xgeva but expect to need another ctpet scan soon if Psa continues to climb. Then I would opt for SBRT if I have more oligomets amenable to treatment plus Zytiga/prednisone. So far I’ve been lucky to have minor bone mets.

You all have a great attitude!

Bob

spikezoey
spikezoey
in reply to Break60

Thanks Bob! Best of luck to you!

My husband has so many similarities to yours- except he had a lot of symptoms that his urologist said were due to BPA and never tested his PSA- full details are in my profile. He turned 50 this past December and it will be one year since his diagnosis. He immediately went vegan (the Healthy kind of vegan 😊) I think more so he could feel in control of something. He was an athlete in college and has always been active and in great shape- which i think helps with some side effects. He started with Lupron and chemo. Now Zytiga prednisone Lupron. We go this Wed for follow up bloodwork to see how well the Zytiga is working. I, too, follow those you mentioned on here due to similar stories and inspiration! We have decided same as you- grateful and blessed for each moment and not going to look at any mortality rates!

I'll look forward to hearing about your husband's success for inspiration too!

spikezoey
spikezoey
in reply to pakb

I hope the Zytiga works for him! Let us know his results! Hugs.

Spikezoey,

I am a 76 year old, happily married, father of 3, stage 4, GL 8, metastatic PC patient diagnosed in 2012 in AZ. My Phoenix doctor put me on Eligard (Lupron look-a-like) and Casodex.

My treatment worked and maintained a low PSA, however, my wife in late 2014 insisted I do research on natural supplementation to augment my treatment. After a couple of false starts (e.g., licorice root), I discovered Dr. AKM Shamsuddin's research at the Univ. of MD, Medical School. I read Dr. Shamsuddin's 2011 book (go to Amazon for “IP6 and Inositol…”) and studied the cancer research. The substance tested is known as IP6 (and aka inositol hexaphosphate, phytate, phytic acid) . I used IP6 powder heavily (12 scoops daily) in the summer of 2015 for 7 weeks before my next appointment with PSA feedback. My results surprised both me and my urologist (0.1) and brought in a number that caused him to ask for a DRE. ( i had not had a Prostatectomy as my metastatic cancer precluded that option in 2012.) He could not palpate any nodules and this left him more puzzled! I should add that the two bone mets in the pelvic region had stopped aching.

1. amazon.com/IP6-Inositol-Nat...

When we moved to Florida in August 2016 to be near our grandchildren, my urologist here did not believe the medical history notes and did a DRE himself and he also and could not find any evidence to confirm manually the presence of tumors.

I currently use Enzymatic Therapy's Cell Forte IP6 Powder, 16 scoops a day divided into two dosing sessions, always mixed vigorously in a closed container of water and with a completely empty stomach. Never mix into smoothies, etc,. as the IP6 molecules will bind to protein molecules nullifying their efficacy. Yes, that is a massive dose and possibly far higher than most patients need. The challenge is finding the dose that works for individual patients. I would recommend starting at 6 scoops a day and moving up incrementally until you get the results you are seeking.

In 2016 I discovered the research of Vaclav Vetvicka, Ph.D., a biochemist doing research at the University of Louisville Medical School. His book, in a 3rd edition now, is "Beta Glucan: Nature's Secret". He knows as much as any living person about natural immunomodulation through glucans. You can see him interviewed with oncologists at vitawithimmunity.com.

2. ancient5.com/Beta-Glucan-Na...

I take one dose a day late in the evening, 3- 500 mg. capsules (from Transfer Point - and brand matters!) with resveratrol and vitamin C per Dr. Vetvicka's recommendation. His experiments identified a synergy in these 3 agents when combined in an empty stomach. DO NOT dose more than once as you could exhaust the immune system through overstimulation.

I also take numerous natural supplements with each meal. My last PSA at my urologist's office was 0.06. He cut out the Casodex in Sept., 2016 when we moved here to west central Florida. I get a single six month Lupron shot. I have a new medical oncologist who I see in September and he may suggest modifications to this regimen.

I will not launch into presenting a long list of natural anticancer supplements that augment this program. If you have an interest, I can do that in a separate post.

Your happy vegan CalBear74

PS. Go to nutritionfacts.org for diet education videos, a couple of good ones on diet and prostate cancer. nutritionfacts.org

spikezoey
spikezoey
in reply to CalBear74

Thanks for all the info! I’m going to look up the links. Sounds like your veganism and supplements are working for you!

Your husband's journey so far has been remarkable and his continual passion of biking is inspirational. I was dx in March 2017, PSA was 415 and Gleason 8. I immediately did 6 rounds of chemo that concluded in July 2017. I take lupron every 12 weeks and xgeva every 6 weeks. My PSA has since been holding steady at 0.1. I was experiencing pains in my bones specifically in the thigh and pelvic during chemo and it took 6 weeks until the pain subsided. I am able to do pretty much the things that I was doing prior to my diagnosis. I take calcium with vitamin D, a capsule of pomegranate and drink 2 cups of green tea every day. So far so good. I feel great. I pray for your husband's well being and good health and all our brothers in this group. Keep us posted of his progress.

Nick

spikezoey
spikezoey
in reply to Nicnatno

Thank you Nick! So happy to hear your PSA is holding steady and your bone pain disappeared!

Okay, let me cut to the chase... Is that kid yours? If so, is he for sale...

Good Luck and Good Health.

j-o-h-n Friday 07/20/2018 4:39 PM EDT

I've been on the same regiment of prednisone, zytiga and Lupron. Alk Phos down to 470 from 3000 back in January. Doc said today that my bloodwork looks great. Keep active BUT no heavy lifting, I was told this today when I mentioned getting 8 cords of firewood ready for the next 2 years. Doc said "we don't need bone fractures. I get an infusion monthly (don't know what it is) that strengthens my bones. Plus I take OsCal which is 500 mg calcium + 200 iu vitamin D, twice a day. Get the Lupron shot every three months, So far so good considering the shape I was in last Christmas. Everything will be OK. Take everything in moderation and enjoy life.

spikezoey
spikezoey
in reply to lincolnj8

From having read your history, you’ve made a miraculous turnaround! My hubby was also warned against heavy lifting (no more deadlifts!). He’ll be getting his first Dexa scan in mid August, so we shall see whether he will need infusions.

lincolnj8
lincolnj8
in reply to spikezoey

I hate to say, I improved my diet but didn't go with many programs that I read about. No smoking, drinking alcohol cut way back on any kind of junk food. Mo told me to get the good ice cream. lol My only bad vice. I'm very active and energetic. Always have been. I am going to enjoy life. I know we don't live forever. I am a believer in moderation. I've come a long way in 13 months. People came to see me in the hospital because they thought it would be the last time they would see me. My recovery has been amazing. This forum has answered so many questions and I thank everyone for their input. Learning every day. Btw your hubby will be fine. I see a total cure one day..

Which conference is Dr Myers going to be at in Newport Va in Oct-can you post the link?

spikezoey
spikezoey
in reply to podsart

Here is the info:

Prostate Cancer Today: Living Well, Choosing Wisely

Can you “Live Well” with prostate cancer?

If so, how?

Can you make wise choices?

How do you know you are?

This conference will address these questions and many more. Every cancer, every patient, and every caregiver are different. Bring your individual questions and let us help you find practical, meaningful answers.

eventbrite.com/e/prostate-c...

Hi SpikeZoey,

I am presently living a very similar lifestyle as your husband, and have cycled 135,000 km since 2006. (84,000 miles) I gave up all read meat, and the glass of shiraz at dinner and I know all having all sexuality completely exterminated, after 8 years on ADT.

I had Cosadex and Zytiga, that kept Psa lowish for 13 months when plain ADT failed in 2016.

But I feel desire to have a partner, but at 71, the chance of that happening is -3,546%.

I take vitamin C, D, and eat a lot of green vegies raw in slads, and I NEVER EVER go to any fast food outlet. At 71, I am 180lb, BMI is under 25, resting HR 52. So for years I have been doing all the good things that are supposed to lenghen life which few of my friends ever do.

I have many small bone mets but no bone compressions yet, ie, bone crumbling due to cancer lesions reducing strength at joints. I am on Lucrin + docetaxel, and after 3 infusions Psa has more than doubled to 27, and I have no idea if the trend will continue but will seek Lu177 soon if news in next few weeks suggest Docetaxel is useless.

I began chemo sooner rather than later, many put it off until Psa reaches 100, and that's like allowing the horse to bolt down the road further than it already has.

For many years since 2001, I have had a website based around my crazy electronics interests but all my story on Pca is at

turneraudio.com.au/Patrick-...

I am probably too much of a realist to adopt an avatar, so I use my own name here.

So far, the hundreds of other men with my name have never objected, and nobody hates me and nobody has hacked me or website or stalked me. I am not afraid of the world.

I live alone, and am out a lot, so if I had an animal it would be alone a lot, but when I am out on my bike I see so much birdlife and nature,I get the needed connection to nature to ejoy Wonderment. I don't have a mobile phone. I tried one, twice, but hardly anyone rang me so I let the battery go flat, and nobody objected.

The idea of "smart phone" is an oxymoron for me. I think its dumb to use one to get by and fortunately, although I live in a small city of 400,000, I just don't need a mobile and I found I could never cope / tolerate what went on at Farcebook.

Despite having maybe only 4 years left to live, I am fairly happy, although the 6 days after each chemo shot are dreadful, but yet I still am able to care OK about me and my house. so 1 week in each 3 between chemo shots is lousy, but last 2 days I cycled 62km, and today I have a followup meeting with heart doc because sometimes I get uneven heart beat and some strange sciatic pain in spine than pulses at heart rate, and that was made worse with Zytiga. But that happens a little during first week after chemo, but now its fine, and the cancer doctors and my GP doc have not one single idea why such a thing happens.

But the heart doc might have a clue, so I have something to ask him. I'll cycle over to see him, 12km, with a nice up hill section in bushland on the way.

I am not so sure that diet alone helps much to slow cancer progress. I've read many posts from many men about what has happened to them and so many have progressed a lot faster than I have, despite their good habits. A few have lasted far longer than I have since diagnosis and they are not as fit, they don't bother about correct diet, they are a bit overweight, and there they are at 85, still going strong, and one might say they have a less aggressive form of Pca. The fact is that each man's Pca varies from the next man along, so what works for me may not work for another, or it might work far longer for another, and basically nobody can yet predict what happens and how long it all takes.

Pca has so far been one of the most incurable diseases that is so very common. So far, most treatment is all about delaying the progress, and all treatments act OK for awhile, but fall short of killing all Pca cells.

If an initial RP does not remove all PG cells including those with a tumour, then it is likely a man has a fight for 5 to 20 years.

Only immune therapy, IT, offers the promise of long term action on cancer by manipulation of white cells to fight cancer, and this can continue where the white cells keep regenerating for years. Some men who had Provenge are OK after 9 years, but most have got little benefit. Marsden Hospital in UK is researching IT for Pca and had remarkable success in a small % of otherwise hopeless cases where the man had only months to live. But the IT at MH is nowhere near ready for general use worldwide, yet.

I will probably be gone before such advances in IT have matured.

I have seen the pics of the dogs taking 5 on floaties in the pool. :-) ! I used to have a lady

lodger who borrowed a blow up mattress and she'd have a quiet little joint, then lay on the mattress which drifted round and round my pool on the water currents, and she'd fall asleep, so you can't beat having some water in life for calmness.

The cat with hat? I did have a black cat with white face and chest. Her nature was loyal, but I could not help thinking that in a previous life she'd been a stern kind of nun who had been caught making whoopee with a visiting young priest, and so re-incarnated later as my cat.

But now hear my bicycle calling,

"C'mon man, get me out of this shed so we can ride, OK!."

It is a beautiful spring day here.

Patrick Turner.

Love your insights and perspective. It's a weird thing to live with this disease and not really know the best thing to do. The only thing to do is do what you find best for you and keeps one feeling motivated and present to the life one does have. The hubs and I find that trading expectation for appreciation makes all the difference. That doesn't mean we don't have bad days, but we typically turn it around. Our life mantra, whenever something is not going the way we want it to go, is to say, "Adventure!" and get on with it.

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