almost a year....: it's coming around... - Advanced Prostate...

Advanced Prostate Cancer

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almost a year....

Tonwantonga profile image

it's coming around to the first year of living with the knowledge that I have PC. My doctor called every phone in the house until someone answered one, on a Friday, after 5PM. I knew something was up just from the timing. At that point I only knew I had high PSA, 39, not as high as some but a big jump from 1.74 the year before. So that started the landslide to finding out about the extensive bone mets, and here I am 51 weeks later, after chemo, after radiation, forgetting things, depression, no sex, the list goes on. last month when I got my 3 month ADT shot, T was 10, PSA undetectable, no pain from the mets (I was having a little in my left hip earlier this year, where the lesions were largest, but the pain is gone for now) . If I ever forget how many ADT shots I have had, I just need to count the lumps on my belly, they are all visible.

yesterday, I went in for surgery for something else - a bone spur behind my Achilles tendon on my left foot. my right foot had the same thing 19 years ago, and they took it off with a hammer and chisel. This time the doc said he used a sander and grinder. crawling up and down the stairs, using crutches, in a splint for 2 weeks, then a boot with different foam wedges every two weeks for 6 more. I am wondering, since muscle wastes away from ADT, what my left leg will look like 8 weeks from now when I can flex my calf again.

Been eating heart healthy, losing a few pounds, but the splint and wrap on my leg put almost all that weight back. so my weight loss graph has a heck of a jump in it.

Fight on, PCa brothers! I currently feel like I am not fighting cancer, but fighting the effects of the cancer treatments, and getting used to lying to people when they ask "How are you?" and saying 'Fine' or 'Good'.

66 Replies

Hang in there, Tonwantonga. On the positive end, what I think I read is that you are currently pain-free. Celebrate that! Regarding muscle mass, you’ll get it back once you’re mended if you are persistent and patient. I’m starting my 5th year of ADT this month (Zytiga and eligard). And I still am somewhat amazed how every muscle in my body is so quick to atrophy when I don’t exercise it daily. At the moment, my legs are fine since I’ve walked 15,000 steps almost every day for the past year. But I had surgery July 2020 and couldn’t walk for two weeks and they really shriveled…but they are back now. At the same time, I haven’t done light weights regularly for the past six months so my arms are toothpicks. But they will get somewhat larger again if I just put the time into it. It’s all a pain in the ass compared to “before” but, compared to the searing constant eye-tearing pain I had when my psa was 498 and I had mets throughout my bones, this is relative bliss! Again, hang tight! ✌️ DougNOLA

Lulu700 profile image
Lulu700 in reply to dougnola

Our man in Nola. No one gets more steps in than you . You’re amazing . I Dumped planet fitness during covid and I’m a twig now . I liquidated my workout equipment before covid . I’m starting some weird routine to crawl back a bit now. But you are correct. Without activity we fade rapidly .. Hip hip hurray for you Doug! May God bless Nola with every kind of recovery . We luv ya Man!❤️

I think your right in seeing this a fight against cancer "and" against the effects of the treatments. Its just the hand we have been dealt. Some believe what we eat and do as far as exercise will have little effect on the cancer but none that I am aware of doubt it is good for the treatment side effects. The better we tolerate the treatments the longer we can keep fighting and not feel like laying down our arms. Keep up the fight.

Welp …sounds like you have a handle on things warrior …. Maintaining pretty well in our world. 1000s of brothers ( and sisters ) here with a paddle in the same boat to keep you company. We’ll all hang in there together.

💪💪💪👏👏❤️❤️❤️

Lulu700 profile image
Lulu700 in reply to Kaliber

Row…row.row .. the boat .. Niagara Falls is coming .

Kaliber profile image
Kaliber in reply to Lulu700

Yayahahahaya yayahahahaya. Yea , there’s that too . I just think of the fresh refreshing spray …. Yayahahahaya 😵‍💫

Lulu700 profile image
Lulu700 in reply to Kaliber

The final sea breeze going over the edge ? Yah! 🧐😳

Kaliber profile image
Kaliber in reply to Lulu700

Yayahahahaya wooo hooooo …….

I sat out in the jacuzzi this morning all the heat .. it nearly made me sick .. no refreshing spray there ….

Speaking of refreshing spray … …its so hot here, the squirrels and doves are knocking on the back door looking for some water. I ran the sprinklers this morning and …no exaggeration, at least 50 sparrows and 7 blue jays showed up for a rinse and cooling off. Guess birds … like people take their baths on Saturday. Those birds were born here and I feed them every morning , so they are very comfortable around me or the hammer … their mommies brought them to eat in the back yard. Some of the doves are literally pets yayahahahaya. I have three potted plants on the back deck that sit in large saucers and have twice a day drip irrigation. The birds drink from those too but not as refreshing as the much cooler yard sprinkler system.

When I sit on back porch, doves fly down and sit with me and snooze. They feel safer when humans are out back because the hawks won’t fly down and grab them …. Usually. Yayahahahaya the hawks are getting pretty friendly too tho.

😂😂😂😂

FYI: doves seem like they can eat their weight in feed everyday and they leave those little “ gifts “ ( poo ) behind you have to sweep up all the time .. see pic below.

Dove snoozing on back deck.
Jvaughan0 profile image
Jvaughan0 in reply to Lulu700

You should really barrel up that sense of humor sometimes.

Kaliber profile image
Kaliber in reply to Jvaughan0

🎼 roll out the barrel …. We’ll have a barrel of fun …..

😵‍💫😵‍💫😵‍💫

Lulu700 profile image
Lulu700 in reply to Kaliber

A barrel of monkeys . Of course , I speak for my self . I grew the youngest of four brothers . The three stooges plus one , me . If we can’t laugh in the face of suffering , then we are done . I lan to poke death in the eye on the way out . Take me home Jesus is my faith . 🙏

Lulu700 profile image
Lulu700 in reply to Lulu700

Plans of mice and men?

Kaliber profile image
Kaliber in reply to Lulu700

No biggie … you guys were just monkeying around …

I’m laughing in the face of suffering ….. I am …. Really …….. .but it kinda comes out different or something sideways yayahahahaya yayahahahaya. Hey, I just blame it on all the $10,000 a month life / brain altering drugs .. I slide right out of it. I joke about it, but they think its creepy, morbid or brain damage ( Lupron fog ) and shine it on . Doesn’t matter …no biggie … just as long as I can make jokes and laugh about it… that works for me. Turn that frown upside down brother.

😂😂😂😂😂

Lulu700 profile image
Lulu700 in reply to Jvaughan0

Barrel it up and sell it on the black market . 😂✌️

CAMPSOUPS profile image
CAMPSOUPS in reply to Lulu700

For us here that is one of those laugh and cry at the same time jokes.Or using a phrase that's popular lately " you said the quiet part out loud " ha.

Kaliber profile image
Kaliber in reply to CAMPSOUPS

Lol

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

Yes the fine line between laughter and total melt down is thin indeed . 😎😩

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

I was dxed over six years ago . My future was not assured . On 60 minutes I saw a 77 yr old man in Manhattan with APC . He had his own private little gym . He was lifting some pretty heavy weights . Amazing guy . He said “ It’s not too bad , but I still can’t get over the uncontrollable crying “ I wasn’t understanding that really ? A few yrs back another member told me that the man had passed of a heart attack two years after his story was aired . Normally a guy sleeps and wakes up invigorated to face the day . I haven’t had one of those in six years . My first years I was suicidal thinking . At some point I relented to no t . The other morn after fighting joint pain all night i awoke and sat on the edge of the bed in pain and cried … my sweet wife was dismayed … So now , I know what the gentleman was speaking of .. Se la ve . Keep moving . Peace 😎✌️

CAMPSOUPS profile image
CAMPSOUPS in reply to Lulu700

Yep that all hits home.I was never a " morning person " to begin with. Now. My God. It takes mucho coffee and sometimes some Sativa to get my mood and outlook in line for the day ahead. And to get limbered up enough to walk.

I am glad those first weeks after DX are coming up on 2 years behind me. The emotional toll on myself and family was pretty intense back then.

I need to send my first MO a thank you card. She filled the bill on all levels. Treatment. Bedside manner and practically a psychotherapist.

CAMPSOUPS profile image
CAMPSOUPS in reply to CAMPSOUPS

I was having somewhat frequent nightmares in the 1990's. On one of the occasions when I awoke and my heart was literally pounding against my chest I thought I was in danger of heart failure. It occurred to me that damn. My idea that people peacefully pass in the night of heart attack might not be so peaceful.Sorry about the morbid comment.

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

Going peacefully in the night in your own bed? Heaven .

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

Yah , the first two years were hell for us also . Love that Mo . Of yours . 👏

Kaliber profile image
Kaliber in reply to Lulu700

Uh ……. Just say’in …..opiates might be your friend .. they make you feel much better and they make you feel good .. know what I mean ( wink wink nudge nudge ).

Works real good for me …

Lulu700 profile image
Lulu700 in reply to Kaliber

At some point we all might play that card . My doc looks at me like I’m cured . He does not care about collateral damage . Only that pc isn’t present .

Kaliber profile image
Kaliber in reply to Lulu700

Yea …in your case that’s understandable because you are doing so well. Plus the feds have made getting opiates a nightmare with incessant testing and stupid opiate contracts. Used to get pain relief for common backache or physical discomfort….but things have changed drastically now. Plus you are doing so well, that secret med you get looks to have you in remission …. While that’s a great thing…still adt is adt and most everyone gets the SEs of one kind or another…. remission or not.

I think I already gave you the “ special “ information on how to get the relief if you really want it, you can always go that route if other possibilities fail you.

Hey buddy……I’ll hook you up with my “ guy “ down the street …. donworryaboutit……. Nolo problemo yayahahahaya yayahahahaya. First ones are free …..yayahahahaya yayahahahaya.

😂😂😂😂

Small consolation but weight loss is one of the symptoms of advanced stage so you're not there. 😁

well I am somewhat surprised that I am losing some weight (and inches) - I think the Noom app is helping, might actually have been worth its price - I read that skinny people live longer with Stage 4 cancer, so trying to get there - I told the doc that I would be out of the 'obese' section of the BMI chart before they closed my file for good - not that the BMI chart matters, since I have a large frame, even at my optimal weight I'll still be 'overweight' on that chart.

Lulu700 profile image
Lulu700 in reply to Tonwantonga

Good job Ton , losing weight is good for the ol ticker . Which is compromised now too . Good day .. 1 yr in many more to go ! 👍

Lulu700 profile image
Lulu700 in reply to Anomalous

I lost 60 lb my first six months in imrt . I’ve gained back 30.. No fat or muscle on me now .

I lost 10 pounds in minutes when I had my bilateral ORCHIECTOMY. Not only made long distance bicycle riding more comfortable but also lightened the load making it easier climbing mountains.

Yayahahahaya bragger … YOU WISH …😂😂😂😂

Bet you use to walk proud in them bike shorts pre orch....5lbs a nut....🤪

How are you doing? …They really don’t want to know the details . Nobody does . Only US in the trap understand living after APC treatments . We are the lucky ones to pull through it . Many do not . Welcome to the undetechables! I did imrt and Lupron until orchiectomy and I’m still on Tak -70O( a defunct adt test drug) thats is said to halt adrenal production of t . I’ve had 3 t and no Psa for over six years now . And you Sir are exactly right . I have no signs of pc .I’m not really fighting pc . Sarcopenia was first then osteopenia ., then the teeth go too . Now my my joints are collapsing and painful neuropathy is overcoming hands and feet ,arms go numb at night . Thumbs painfully not functioning . It hypogonadism= lack of testosterone . I think it’s a disability . I go tri monthly for testing and pills .I just asked My pc specialist .. How long can a guy live without out T…. ? “ He said. “ lack of T doesn’t limit lifespan” ! Who’s he kidding? Not me . We are whittled down to first gear with no t . Our veins muscles and penis shrink in half . I used to have big mscles and prominent veins. No more . Cant find them for blood work . My veins are tiny tiny now . What’s that say for the heart which is just a Muscle?. The APC never really goes away . No cure once stage #4 .. 2-3 millions of the pc bastard cells can hide from any scan for many years . Fine with me . Devils bastards are out to eat us for lunch . you and I Are not suffering at all compared to the ones in constant battle with pc that are in brutal forms of untold suffering . End stage APC is a bitch . Let’s not go there . It’s a war in which we don’t want to fight self or those around us . A war of attrition . How much can a guy take? So , living in the moment living for the day ,we should take to heart . Hang in there . Let’s try to be long haul truckers for as long as we can keep pc out of the car we are in a sense winning . Hang in there ! ✌️😎

Tonwantonga profile image
Tonwantonga in reply to Lulu700

i know i am just a year in, doing pretty well, all things considered, still 'castrate sensitive' - and that word still bugs me - so I haven't seen the rough stuff yet.

Lulu700 profile image
Lulu700 in reply to Tonwantonga

Maybe you won’t . Take care of yourself and live well . Pluck the day ,any day not 8n severe pain .. keep rolling amigo!

Lulu700 profile image
Lulu700 in reply to Tonwantonga

The more active and the better you treat yourself the better the odds of QOL .. some men have lived 20 yrs beyond a worse dx .. we are so different ,but taken down by the same beast at different stages . You can do better than any doc will tell you .. take care. ..pluck the day! Before it plucks us all!✌️😎

Kaliber profile image
Kaliber in reply to Lulu700

👏👏👏❤️❤️❤️

Fighting advanced PCa (and treatment SEs) plus recovering from gruesome-sounding bone spur surgery... Like bean1008 said in the prior post, "Damn, if it isn't one thing it's another, right?"

Hang in there, in my 4th year of ADT, arbitrone and xgeva shots, feel good except for a little fatigue from the medicine, no progression, Mets healed and enjoying life with the hot flashes, still working part time, next month 70, fight on warriors.

Lulu700 profile image
Lulu700 in reply to Muffin2019

👏👏

Hang in there

Rochester guy here and I am just past the one year mark. My story is similar to yours. 55 yrs old, ADT has me low testosterone and undetectable PSA. Side effects are real even though everyone says I look great. Stay strong!

Lulu700 profile image
Lulu700 in reply to Saville

My new pc specialist say that I look good . The nuke scan begs to differ with his optimistic eye. Joints after six yrs no t and adt are Donzo and painfully disintegrated .. prolia is said to help the bones yet my rib is now broken . Prolia does nothing for arthritis , tendinitis ,bursitis and my bones are breaking . Modern pharma has many glitches . Peace Saville ..

God bless! Hope things continue to improve with time.

Hey Tonwantonga!

Do have access to a leg extension, leg curl and you could possibly do leg presses and calf work on the leg press machine by wearing foot gear that doesn't slip and not using your heel.

Currumpaw

i do have access to some of those and will try to keep the stationary muscles moving somehow, but I gotta tell ya - hopping on one leg, crawling on the floor, using crutches, I'm using a lot of muscles that definitely haven't been used like this in a long time. also managed to tear the skin off both knees, the tops of a couple toes, and somehow the inside of my right wrist, not exactly sure on that one. only fallen down once so far, last night after the 'half-assed bath' sideways in the tub with my wrapped leg hanging out, did fine getting out of the tub, down the hall, and into the bedroom, then I think maybe the ghost my wife says we have must have tripped me. no harm done, and I think it was the first laugh I've had in a couple weeks.

Hey Tonwantonga!

That sense of humor will help you get through it.

Currumpaw

Lulu700 profile image
Lulu700 in reply to Tonwantonga

That Sir is a brutal QOL . I Pray for you to improve .🙏

We need another counter other than "well' and "fine." Since our times has already stripped away all meaning from "ok," can we afford this continued loss of linguistic abandon? Perhaps saying, "Thanks for asking" offers an appropriate cryptic mix of mystery and appreciation.

Lulu700 profile image
Lulu700 in reply to Jvaughan0

😂✌️

This is why I wrote my own post on Xtandi a couple of days ago, just for people like you. You have to focus on the positive and not the negative. Enjoy each day you awaken and seize the moment. Even when the BEAST has you in its clutches and the meds are beating on you, there is still much to be thankful for. And just remember..............

LIFE IS GOOD! (Much better than the dirt nap.)

Tonwantonga profile image
Tonwantonga in reply to ppulatie

I've always been one to think I definitely wanted to hang around to see if tomorrow would be a better day than today, but PCa has definitely got me thinking there is a limited number of tomorrows to check out. I will see as many tomorrows as I can possibly fight my way into though, and some will be better.

ppulatie profile image
ppulatie in reply to Tonwantonga

Yeah, we do have our good days and bad days. That is for sure.

You nailed it: " not fighting cancer so much as fighting the effects of the cancer treatment"

When asked “How are you doing?” I usually say, “Every days a blessing.” When some says “It’s so good to see you “ I usually say “And it’s great to be seen!” And you know what, both are true! Carry on Warriors!

I wish you and more of the warriors who are on those nasty Lupron injections would try transdermal estradiol (tE2) patches/gels/creams!

Lulu700 profile image
Lulu700 in reply to ronronHU

Our chick friend returned saying it was illegal to carry the gel back . I think she spent the money staying longer than expected . She payed us once she returned ?….?..

ronronHU profile image
ronronHU in reply to Lulu700

None of my friends that have brought the gel back have ever had a problem. My buddy from San Jose recently brought back 35 tubes. I supply Richard Wassersug with his gel. I recently sent my friend in Florida 25 tubes. I don't think she wanted to bother.

Some of my replies are " not too bad, I'm vertical ".For people who know my situation or who I don't mind explaining it to I find myself saying " all things considered not too bad ".

But yea often it seems the circumstances of " greetings " allow for nothing but " I'm fine, or I'm doin good " and that hits me sometimes with negative feelings of gee what a farce, an outright lie practically.

The " how are you " greeting is so imbedded in our Western culture ( U.S. anyway ) that we seem to be stuck with it.

Sorry to see this. ADT (generally) provides a relief of symptoms in metastatic disease. I hope that's the case for you.

Get your ADT shot in you butt, then you can't see them😜. I only got one in my gut and it was bothersome for sure.

Caffeine has helped with my fatigue and my mindset. God Bless !!

I have ripped Achilles tendon with a bone spur and arthritis in the big toe and they want to do the same thing I've been putting it off for a while just cuz fighting this PCS enough being down 8-10 weeks like that ain't doing it right now

i was tired of limping and wanted to get the job done before my bones/muscles get any weaker.

Try not to be discouraged or worried. There are guys on here who have had it worse and lived 20+ years. 🙏✝️

Things got better after a year on ADT you mentioned no pain that's a blessing

You are nowhere near the end of your journey

It will get better

Be mindful of the good things you still have

Really sorry you feel this way

The way I deal with it is to tell myself

Today I am gonna enjoy some of the things I enjoy doing

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