Advanced prostate cancer

[Catdog1111]

Hey there,I'm just seeing if I can get any insight on this from anyone living this now.My father is 70 and was recently diagnosed with prostate cancer and there was a spot on his rob as well from it.I don't know what stage it is but he is currently on hormone therapy and gets injections every 3 months and takes xtandi.i have heard side effects from xtandi as well as far as pain goes in the neck and back area,is this common.Im really concerned over this ,does his situation sound common as I'm worried it could be a death sentence.thanks so much for reading

[6357axbz]

What’s a “rob”?

[Catdog1111 in reply to 6357axbz]

I'm sorry, misspelling rib

[mrscruffy]

Sounds like me, I am only 60 and have had this for 7+ years. I have avoided side effects with workouts in the gym 6 days a week. Never too old to start a workout program

[Catdog1111 in reply to mrscruffy]

Did you have any side effects from the xtandi?like pain or stiffness in joints..thanks

[mrscruffy in reply to Catdog1111]

Using Lupron/Zytiga and had all the side effects. Gone now that I am in the gym regularly

[85236442968 in reply to mrscruffy]

Hey mrscruffy

I agree on the exercise/gym side of life.

Current work out is 6 days of elliptical and then stretch/yoga in basement, followed by 3 days a week at local gym.

My wife has very bad arthritis so she swims on those 3 days a week. I do three rounds on the machines , some cables, and then join here in pool.

Finish is usually 15 minutes in whirlpool/hottub.

There are days that aches and pains or just plain bad side effects get in the way, however they seem to be lessening. BP and edema are the worst.

Current regime is Lupton and Zytiga. Did 28 round of radiation on pelvic area including 6 lymph nodes. Also 3 rounds at Periaortic level as I had two lymph nodes in that region that lit up on PET scan,

Anyway can you elaborate slightly on your workout as it appears it is helping you significantly.

[mrscruffy in reply to 85236442968]

My initial goal was to build muscle so I am on a host of supplements for muscle building and consume approximatly 110 Grams of protein a day from various sources. If weight goes up I do intermittent fasting. Workout sessions are an hour per session. Monday and Tuesday are days I lift heavy to failure concentrating on one body section. Wednesdays are for cardio on the stationary bike. Thursday and Friday are lifting heavy again, and Saturday is cardio again. Had a trainer help me with designing my program and she was an awesome help. Any other questions let me know

[Sagewiz in reply to 85236442968]

Thanks. That's encouraging. The fatigue and hot flashes are kicking my butt, and I have been afraid to start a workout routine until I am fully recovered from the radiation treatments and surgery, but intend to broach the subject with my MD next week. I also have severe mineral deficiencies that could impact my hearts, so awaiting their sign-off on increasing my activity level.

[Kevinski65 in reply to Catdog1111]

Yes

[6357axbz]

Without knowing all the specifics if it were me I’d opt to have my prostate irradiated IMRT). I did.

[Catdog1111 in reply to 6357axbz]

Thanks for the info!

[Tall_Allen]

I think Canada allows triplet therapy: ADT+docetaxel+ Nubeqa or Zytiga.

[Lslal in reply to Tall_Allen]

yes it does as I’ve had it. Feb 28 is my 2 year anniversary with PC. Started with a PSA of 935 mets everywhere and it’s now PSA is <0.01 and mets have diminished greatly.

[MarkBC]

Everyone's cancer is different and each responds differently to the available treatments. It has been almost 6 years since I was diagnosed and my oncologist thinks I still have a number of years left to go. That said, some men don't respond well to treatment and do die within a few years. Hopefully you and your father will accept this disease as I have done. It's a good reminder that life is finite and that we all need to embrace the best of each day we have left. If you can, use your days to focus on the things that are most important to you. For me, that is time spent together with friends and family. I wish the best for your father.

[fishman357 in reply to MarkBC]

Hi Mark, hope this email finds you well. Have you started your 177 treatment yet. I tried messaging you when you last posted about starting this treatment and had questions as a fellow Canadian with possible friends/doctors in kind. Did u receive my message by chance?

[RoseDoc]

if he has a rib met, he has stage 4 cancer.

The standard of care is triplet therapy as Tall Allen has mentioned

[lgutman]

My dad is 81, diagnosed right before his 79' with advanced metastatic cancer spread to 8 bones. If a spot is found on the fib, it is metastatic (essentially stage 4.) My dad was on Xtandi for four months before it stopped working--but this is different for everyone. I have heard great things about it. Our DR said any new pain, or rising PSA, indicates a need for testing. A week ago my dad started having extensive pain in his shoulder and neck pain and we were asked to go to the ER. It came out of nowhere and wasn't controlled by OXY. His cancer had spread all over his upper body. I am not saying that is the case for your dad. But I am saying that with new pain, symptoms, etc it requires a minimum of a call to his care team if it goes on and you don't have a reason for it (yard work, golf, etc.) As a daughter, I feel your pain. It is so hard, we were 4-8 weeks between appointments and have changed meds twice. There were times I saw symptoms, weight loss, a few falls, a few incontinence issues, and my heart would sink. But my dad lives by the motto "don't worry about stuff you can't control" so I have tried to live life in-between the appointments. My dad is not doing good right now, but we are not out of the fight. Feel free to direct message me if you want to chat further. Hug your dad. Good luck!

[OldWarrior]

going back to your original post. I’ve been on xtandi for two months. It can cause lower back, muscle and joint pain. If you’re worried, always worth a call to the MO. Any amount of exercise can help. There is lots of transient pain on this journey, it can help to keep a log, so you have some info at hand when talking to the care team

[EdBar]

Fatigue, aches and pains, brain fog are pretty common with xtandi, I’ve been taking it for about 9 years now. I was prescribed Celebrex to help with body aches and headaches from it.

Ed

[SteveTheJ]

If he has cancer that has spread outside the prostate, it's stage 4 unless the rib spot was caused by something else. No one can tell you in advance what his side effects will be. Almost 4 years in with Erleada and Lupron, my side effects have been very tolerable (to me).

Make the best decision you can, based on medical science and not fear, as to what therapy or treatment gives him the best chance at a long life with good quality of life.

[PELHA in reply to SteveTheJ]

Steve. Do you have any Mets? My hubs just diagnosed with a handful of those on the bone. Right now is on quarterly Lupron and also just started on Erleada but that’s all. No chemo as yet. Curious if there are situations where given only these two and not the chemo. Thanks!!

[SteveTheJ in reply to PELHA]

Yes I have metastases. They have been very well under control using Erleada and Lupron. No chemo, no bone-strenghtening medications (I get the names mixed up but starts with X). Before you make any decision regarding bones, get a bone scan.

[PELHA in reply to SteveTheJ]

Oh fantastic to hear! I hope that will be our experience. Yes hubs has I think from last PET scan 5 tiny bone ones—3 in pelvic area, 1 spine, 1 collarbone. A year earlier none showed in the scan. We are to Mayo in Phoenix to meet with his MO in a couple weeks again and new blood work to see if any improvements. He is Gleason 9, PSA 9. So far only side effects from the two drugs are some hot flashes and some extra fatigue (and the Lupron jelly roll belly that appeared seemingly instantly!). I would like to get these scans as often as we can to monitor.

[SteveTheJ in reply to PELHA]

Listen to what the oncologist says but IMHO too-frequent testing will lead to nothing but anxiety. One time I kind of panicked when I somehow threw out a new prescription of Erleada. Doc told me to relax, the medications have a long half-life... by the same token, changing medications might take a while to have a noticeable effect.

IIRC, I got scans every 3 months at first, now it's every year. Blood tests every 3 months.

[PELHA in reply to SteveTheJ]

Ok this has been weird—we were first told Erleada would be a co-pay of $3,250/month until we hit the Medicare catastrophic level of $8,000. The first month arrives—no bill. He just renewed the next month over the phone and was told his co-pay is one dollar!! I’m not gonna question this , but wow!! Ok!!

[SteveTheJ in reply to PELHA]

Janssen has a discount program, maybe he's on that. I cannot advise you on the wily ways of insurance though. The other possibility is he's already hit the out of pocket maximum. I am not on Medicare.

[PELHA in reply to SteveTheJ]

No to both! We don’t qualify for the discount program and it’s January so not hit a maximum at all. Like I said OK but wow what a difference. Yep he’s almost 78 so definitely Medicare.

[Boywonder56 in reply to SteveTheJ]

xgeva

[Boywonder56 in reply to SteveTheJ]

xgeva

[Teacherdude72]

Please give his osa history, Gleason Score and general health. Helps with answers.

[HotRod4321]

Death sentence? We will all go sometime, but if treated, probably from something else. I am under treatment for mPCa (stage 4 metastasized Prostate Cancer) and, as my body is responding to the treatment (IE: PSA <0.01% = Prostate Specific Antogen = no PSA), I will die from something else. There is hope! Stay positive! Never look back! Good luck and prayers in your journey!

[Sidebar: if interested:

healthunlocked.com/advanced...

More info on my journey]

[AlmostnoHope]

I always say: The side effects of Cancer spreading far exceeds the side effects of the medications."

[Sagewiz]

Not an uncommon treatment at all. They cannot identify any metastisis for me, but have to assume there is some, so I am undergoing similar treatment and also had HDR surgery. I am still battling fatigue and bringing that up at my next quarterly injection visit next week. I just had labs and am low on potassium, iron, and vitamin D and my PS is <.01 so I have just achieved that benchmark. The fatigue and hot flashes are the most debilitating side effects for me, and I am concerned about too vigorous of an exercise routine due to the mineral imbalances impact on my heart. Once my MD clears me, I intend to increase my activity level.

[MoonRocket]

I'm on xtandi and I did notice an increase in neck discomfort. Not pain but stiffness and discomfort.It's imperative your father exercises if he is not already . Both cardio and strength training.

Some things I noticed in my experimentation at alleviating the neck stiffness

1. I recently started swimming again.. 3 days a week for 45 minutes.

2. I belong to Planet Fitness gym (black) membership. This gives me access to the hydro-massage beds. I do 15 minutes after each workout. I have the pressure set at 8 , speed set at 2 and I let the jets run all the way up to the base of the skull.

These two additions have really eased the stiffness and discomfort.

[j-o-h-n]

Greetings Catdog.........If possible add more info regarding your father in his/your bio.. All info is voluntary but it helps him and helps us. Thank you!!! Regards to your Dad...

Good Luck, Good Health and Good Humor.

j-o-h-n

[Catdog1111]

Thank you everyone for the kind words and well wishes,it's a stressful time so thank you all for this!

[God_Loves_Me]

Seeing Xtandi's side effects, then try Nubeqa or Erleada.

Also, get in touch with radiation oncology. Medical oncology often does not refer to still check with radiation oncology.

If the doctor suggests you go with Pluvicto, then go for it.