Shout out for my stage 4, post-chemo,... - Advanced Prostate...

Advanced Prostate Cancer

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Shout out for my stage 4, post-chemo, Gleason 9 road warrior husband of mine

spouse21 profile image
49 Replies

Last week was my guy's 76th birthday. He's out on a 30-mile bike ride in 90 degree humidity. He left a couple hours ago, so when I saw his cell number, a tiny part of me thought: "Uh oh, collapsed on the road." Not at all. He wanted to know whether to pick up blueberries at a farmstand!

I'm posting this A: because I'm proud of him, and B. I want to be useful on this board and show what somebody with his current stats can do. I know it's not typical, some of it is luck, and it's just today, and I could be posting a desperate question next week. But this particular dude with a lot of miles on him, a whole lot of treatment, 10 docetaxel infusions that ended about seven weeks ago, plus Lupron, is out there biking his brains out. I guess I'd better make a blueberry pie, right?

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spouse21
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49 Replies
Tall_Allen profile image
Tall_Allen

Inspirational! Especially to those who are afraid of chemo.

6357axbz profile image
6357axbz

You bet! I just ate a slice of blueberry pie last night!

He is an amazing .. riding 30 miles during chemo ? my wife says that’s bad ass.. This particular “Dude” is one tuff hombre. I’m pulling for him to do well.🏋🏻‍♂️💪

Kaliber profile image
Kaliber

I’ll be right over for some pie ! .....

Good for your guy’s physical abilities under such conditions , you have to admire his determination. Plus he’s very lucky to have such a strong supportive gal such as yourself by his side.

The best to both of you. 🚴‍♀️ 💪💪💪👍👍

ctarleton profile image
ctarleton

Woohoo!!!

Magnus1964 profile image
Magnus1964

Good to hear he is doing well and has the strength to pedal on.

spouse21 profile image
spouse21

Thanks all for joining in my shout out. He came in the door an hour ago pretty wiped out but glad he made the ride. He's amazing.

in reply to spouse21

This is a big part of why we are doing all of this.

I was also very active during chemotherapy and right after, did a lot of really enjoyable things including a big NO-MO CHEMO party after it was over.

Glad he's doing so well, hope it continues.

RIDE ON ! 🚵🏼🚴🏿‍♂️🚴

It's all about how bad you want it. He wanted that 30 mile bike ride pretty bad. Get the pie ready.

fmenninger profile image
fmenninger

Dang! That’s awesome.....suprise him with a great meal....makes me want to amp up my roller blading miles per day! Stay strong...

Ahk1 profile image
Ahk1

Your post just lifted my spirits up. I was very depressed thinking about starting ADT since my psa has risen to 1.23 two das ago. Thanks very much for posting it.

Shooter1 profile image
Shooter1

Just got back on my bike with my little shadow, helper grand son last month. Over 3 years off after chemo, xtandi and burn. Feels good.

All the best to you and yours.

jimreilly profile image
jimreilly

Your husband and I must be related--I was out on my bike yesterday too in the heat--I'm his age--more power to us!

Ramp7 profile image
Ramp7

Mmmm love blueberry pie. Sounds like you two make a great pair. God Bless, off to take my morning hike.

Curehunter profile image
Curehunter

That is great. He is an inspiration to all of us.

Bodysculpture profile image
Bodysculpture

Make that Pie

Just finished docataxal 8 weeks ago

I must say it's an amazing drug

It cleared up my mets

I have very small residual amount left 7th and 8th rib

Presently undergoing radiotherapy

I am Gleason 9

I am a bodybuilder I missed very few training days while undergoing chemo

Training again as intensely as always and looking forward to my holiday in Barbados in Aprill

I am living with cancer not dying from if

Encourage him to stay strong love life and find joy in every moment

Tommyj2 profile image
Tommyj2 in reply to Bodysculpture

Do you have a home gym or a gym that is staying open during COVID??... How is your progress with ADT ( or are you NOT on it)???

Bodysculpture profile image
Bodysculpture in reply to Tommyj2

Ì have my own Gym I am presently doing radiotherapy 1 month after chemo

Tommyj2 profile image
Tommyj2 in reply to Bodysculpture

Thank you for the response... what I am interested in finding out is how men who are on ADT ( or have been in the past) and are also heavy into weights made out during their time on ADT.... I am soon to start ADT and worried considerably about maintaining some measure of strength and muscle mass.... very interested in others experiences with ADT and Bodybuilding... Best of luck to you with your radiotherapy....

Bodysculpture profile image
Bodysculpture in reply to Tommyj2

Alot of this battle is mental

There are many things you dont think you can still do but you can it's the fatigue as a result of treatment that makes us not even try

My oncologist continualy stressed how important it was to get through my treatment stay strong and keep my appetite up

Days I felt too drained I walked or rode

But I kept physically fit through it all

I maintained most of my muscle mass

Thise who know me well cant believe I just finished chemo the only difference is hair loss

I dont feel like I've got cancer however I do

We need to do all we can to help ourselves

Trust me

Chemo and radiology save lives every day that's where all the years of research has brought us we have come a long long way

I am extreemly gratefull for cancer research

Tommyj2 profile image
Tommyj2 in reply to Bodysculpture

Have you been or are you on Hormones while you go through your treatment??...... It's the loss of testosterone that I am wondering about...... I FULLY understand the fatigue that can accompany Chemo and salute you for maintaining throughout the process..... so much of this IS Mental....not letting it drag you down to the point that you stop trying....

Bodysculpture profile image
Bodysculpture in reply to Tommyj2

Yes they started me on hormone testosterone suppressant that's pretty standard

I still respond to weight training like I used too

Still get an amazing pump and a lactic acid build up

My oncologist gave me the go ahead to train as I always have dont be limited by what you are told or any other means journey

I plan to be here for a long long time and yes I do have some say in the matter

Eat right train hard and trust medicine today my friend

And love fiercely

Tommyj2 profile image
Tommyj2 in reply to Bodysculpture

Thank you!!! Thats the kind of story I love to hear...Keep up the good work...!!!

spouse21 profile image
spouse21

Pie underway. Thank you all for cheering us on. Ditto to all of you!

Hawk56 profile image
Hawk56

Happy for you, happy for him, many on this forum generally say whatever exercise you can do while in treatment or after plays a positive mental and physical role in living with this disease.

After surgery and SRT failed I did 18 months of Lupron, six cycles of taxotere and 25 more radiation treatments. Throughout that period I kept up my normal activities- played basketball, swam, went skiing, hiked in the mountains, lifted weights...

I felt better emotionally and I think physically, my medical team said it was better than anything they could do for me from a pharmacy perspective.

Again, congratulations!

Cateydid profile image
Cateydid

Thanks for your positive post! I’ll share it with my husband, who sometimes looks at the glass as half empty.

He’s 66, diagnosed with Stage 4 PC (Gleason 4+3=7) 11 years ago. Been through surgery, radiation, chemo, now on Lupron, getting ready to start Zytiga as soon as it arrives...

This morning finished the plumbing for the ice maker in the new fridge. Waiting for stain to dry on the 5x7 foot outdoor shower he’s building so he can apply polyurethane. While that’s drying he’ll install the slide in the kids for the built last year...... This from a man with mCRPC!!!

Like you, we know it won’t likely be this good forever, but we’re darned grateful for every day on this side of the dirt!

Glad to hear-and share-the good news!

Burnett1948 profile image
Burnett1948 in reply to Cateydid

Burnett1948 Does Lupron have side effects? I am about to start Lupron then combine with Zuniga. So I am very interested.

moguzzi profile image
moguzzi

I'm the 30-mile dude who is the husband of spouse21 and want to say she is the inspiration for my trying to stay as healthy as possible in the battle we are all fighting. She has been unfailingly supportive, patient, loving and longsuffering throughout. Always a glass half full person, a wonderful balance to my empty glass attitude. I could never have gotten this far without her. As I'm sure you all know you need loving and supportive allies to deal with, to survive what cancer throws at you and I have been extraordinary lucky in having her in the fight with me. We are both grateful for the quality of information and empathy all you folks on this board have to offer and want to thank you all.

P.S. The pie was great.

in reply to moguzzi

Lovely to read that a couple truly appreciates each other - so lucky 🍀 for both of you.

j-o-h-n profile image
j-o-h-n

O U T.............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/26/2020 6:26 PM DST

spouse21 profile image
spouse21

Does anybody know who this moguzzi guy is? :)

treedown profile image
treedown

He's a rockstar!

Patrick-Turner profile image
Patrick-Turner

Well, indeed you better get that blueberry pie made my dear, as it is an administration of love, and we could all enjoy more love if it was possible.

I am 73 and have been cycling 200km a week average since 2007, before diagnosis of Pca in 2009, and have had most treatments and drugs that are available, including chemo.

I'm now on another round with Lu177.

But last week I cycled 40km across town at average speed of 24.0kph, and that's good for my age and after being starved of testosterone since 2010. Chemo had the worst last side effects, and it didn't work.

Its a grey cold winter day here, raining, and I must spend time in my crafting shed. Alas, I have nobody in my kitchen making a blueberry pie.

But I'm alive, and sane, ( well, I think I am :-)

Patrick T.

spouse21 profile image
spouse21

Sending a virtual blueberry pie, Patrick.

oilcan4 profile image
oilcan4

Did your husband have any bone mets

spouse21 profile image
spouse21

Yes, he did/does--too many mets to count. However, as of his most recent scan in June 2020, after the end of chemo, the mets were "reasonably stable." Info is on the profile. He developed mets between the end of his 3-year Lupron treatment and during four months of Zytiga, which failed. Then he went on chemo--10 infusions.

Scoofer33 profile image
Scoofer33

Spouse 21 & moguzzi, you two are a beautiful example of how spouses can support each other when they choose joy and choose to love each other. You are an inspiration to us all and remind us of what we are fighting to live for!

Wow- that’s incredible to read. Thanks for taking the time to share and boost our outlook on what can be accomplished.

Stay strong and healthy

StayPositive1 profile image
StayPositive1

Happy Birthday! Sounds like fun - enjoy!

larry_dammit profile image
larry_dammit

Don’t forget the ice cream, I have read somewhere that cancer hates heat, the biking has a good result ,it heats up the body to help it fight the monster,at least I believe it., stage 4 here and 4 years into the battle. I work out in the shop every day in the high 80s with sweat rolling off every part of my body, last scans on Tuesday showed that a slight decrease in the cancers. Fighting the monster 🙏🙏🙏😡

treedown profile image
treedown in reply to larry_dammit

I hope that's true I have been bicycling in the heat wave we have here. My ride last Sat I weighed myself before ride 159.1, after ride 153.8. That's a lot of sweat/heat/water loss considering the intake of water and food during the ride.

spouse21 profile image
spouse21

More virtual pies for road warriors, treedown and larrydammit, and everyone who's taken the time to respond to this post. This board is the greatest.

Geter profile image
Geter

Hey spouse21,

I'm Geeter's spouse, Lynne. I'm wondering what is your husbands weight? We are now faced with the option of cemo. He is 116 lbs and can't seem to gain anymore. We have been at this battle for a little over two years and have gone through most everything including Provenge.

The oncologist feels that G will have a hard time with the Docetaxel because of his weight. He is starting laser radiation on Monday for three weeks to help him feel better. We are at a cross roads now and he is tired. It's not a matter of giving up, it's a matter of living and dying with integrity.

spouse21 profile image
spouse21

Greetings, Geter.

Gosh, you and your husband have been on a rough road in such a short amount of time. That's hard. I'm not sure our guys' situations are comparable. (See profile above) How old is your fella? Mine is 76. From the get-go in 2014 he's been able to do a fair amount of physical activity--hiking, biking, weight lifting, long walks. He started out weighing about 140-145 at 5'7" or thereabouts. He was slim but not underweight. Lupron and some of the other drugs (Zytiga & Doxetaxel) gave him bloat, so he got up to around 155 pounds. Now I think he's around 145 two months after finishing Docetaxel.

116 pounds sounds concerning, so I don't know if my husband's situation can be helpful to yours. Is your oncologist advising against Docetaxel? Even in "good" PCa physical condition

days-3-6 after the chemo infusion knocked my guy pretty flat. He didn't eat much on those days--didn't vomit but felt queasy and didn't eat much. But he had some weight to spare. Chemo does help with pain so that goes on the "pro" side of the ledger. And the chemo stabilized his mets. We shall see. Your guy seems to have a different kind of beast. Maybe someone else who sees this thread will offer some insights. I'm sorry I can't be more helpful. It's awful seeing our guys go through this. Keep posting, Geter.

Brackenridge profile image
Brackenridge

That is fantastic!!!

spouse21 profile image
spouse21

Thanks, Brackenridge. However, I have to add a non-prostate related addendum, which all the bicyclists on this thread will appreciate: moguzzi is currently recovering from a broken collarbone he sustained when he hit a curb a week ago and went over! So no more 30-mile bike rides for at least 6-7 weeks. :( He's grateful he only broke the collarbone given the porous bones so many advanced PCa fellas have. He's been taking Xgeva for a year, thank goodness. His spirit is more bruised than his bones.

Brodie13 profile image
Brodie13

Wow that is amazing & so inspirational. Did he have radiation treatment at all? My 70 year old husband can’t have chemo because of last stage kidney disease. Was his stage 4 also in bones & lymph nodes?

spouse21 profile image
spouse21

Hi there, Brodie. I just updated our profile to report on latest monthly blood work, which shows continued stability (though PSA wasn't taken this month). If you look at the profile, you'll see the history of all the treatments starting in late 2014 when my husband was diagnosed with Gleason 9 high risk prostate cancer with no visible mets. (Couldn't have MRI due to pacemaker--all imaging so far has been CT and bone scans. He couldn't have RALP due to abdominal surgery 6 mos. prior to dx. More sophisticated imaging nowadays might have identified mets not seen on CT and bone scans in 2014.)

At dx, my husband went on Lupron a few months ahead of radiation and stayed on Lupron for three years. After a year off Lupron, PSA went up, so went on Zytiga, which quickly failed after a few months when many mets were visible. Oncologist scheduled him for lifelong Lupron + indeterminate Xgeva treatment (bone strengthener) and 10 chemo treatments. This is considered "late stage" chemo treatment, not the chemo some newly diagnosed men get if imaging shows mets at dx. Month-to-month, my husband has been stable for nearly two years, which isn't typical for many men who get mets later on. We hope this stability continues, but just in case, he kept his chemo chest port in!

I hope everything goes well for you and your fella. To save yourself plowing through everyone who's received chemo, you might want to track men who, in the last five years, got early chemo because they had visible mets at diagnosis, so that you compare apples to apples. Otherwise you'll go crazy following everyone on HU who got chemo at different stages. I've even narrowed down my own research to guys who got diagnosed around 2014 to see how they're doing since that time. This gives me some "me time" life. I love the guys on Health Unlocked, and try to respond if I have something helpful to add, but as Pee Wee Herman used to say: "I don't want to marry them."

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