My father diagnosed with Advanced pro... - Advanced Prostate...

Advanced Prostate Cancer

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My father diagnosed with Advanced prostate cancer

naples2021 profile image

Hello everyone ,

I read your posts daily and they have been an inspiration for me. I lost my mother 5 years ago because of a very rare and aggressive type of cancer at the age of 59 , while a few months ago my father age 69 was diagnosed with advanced prostate cancer . He had urinary retention problems and after going to the urologist completing the MRI and doing a PSA test we found out his PSA was 6491 while his MRI showed several pelvic enlarged lymph nodes and his prostate had two small tumors. The biopsy showed cancer in 4 out of 12 cores cancer involvement 20-40% Glason score 8. My father has always complained about back and shoulder pain which we believed it was from sciatica nerve , he was diagnosed several years ago. He has phobia and anxiety and taking him to the doctors has been a challenge. In May he got a shot of Eligard (the 6 month dose) and 30 days of biculatamide.His PSA in June’ 21 dropped to 68 and in September’ 21 to 1.2. After 4 months trying to convince him, he was finally able to do a full body CT PET scan which revealed a severely enlarged prostate and emphysema in his lung (smoker of 52 years ) pretty weird. We went to the urologist to change his catheter and he give him a prescription of biculatamide 50mg. After reading your stories I don’t believe it is the right medicine to take .My father has started to complain about joint pain in his knees and back pain. He walks 4 miles per day and does some weight lifting. His appetite has increased drastically and has gained some belly weight. I am concerned about the joints pains and what should be the next course of medicine . We recently moved to Naples from NYC, my father has an oncologist appointment coming week.

26 Replies

Such a high PSA id think that all cores would be full of pc ? I too was a gl. 8 but any pc tumors broke out into my pelvis . If he can get a dexa ( bone density scan then it will show his current bone strength status . I went into painful osteopenia after imrt and two years of adt. So I was put on prolia . Adt first takes the muscles then the bones and teeth. Osteo and cardio issues will get us if the pc doesn’t first . .. I know how it feels to have your dad with pc . Mine got it at 69 by 71 he was gone by the heart . 24 yrs later, I love him just as much as ever.. The joint and muscle pain can ruin everything. Massages , sauna , jacuzzi anything to comfort him now . Good job looking out for him.Your love can keep him going . I recommend no sugar no processed foods. That’s just me. I’ve had over six years living with APC . There is nothing nice about this disease. But we find out who loves us and cares for us. He’s got you babe.. love is always the answer . Take care

naples2021 profile image
naples2021 in reply to Lulu700

Thank you so much for taking the time and replying to my post..

Lulu700 profile image
Lulu700 in reply to naples2021

Thank you for loving and advocating for him. He’s stronger with you by his side . Moral support is everthing. ❤️

Having extremely high PSA does NOT necessarily mean it is aggressive type of cancer. It can be scary for family member to see this high PSA.In fact, the real factor is ....after treatment how Low the PSA falls and how long does it take .

Lowest point of PSA achieved after treatment is called as NADIR PSA. If it falls below 1 it is indicative of long survival. Also, if it takes over 9 months to achieve Nadir PSA, this also indicates survival in many years.

He is on right medicines...look at the dramatic good results which are showing. In5 months PSA has fallen from 6491 to 1.2..a beautiful 99.98% drop. This is a very good news because it says almost all of his cancer cells are very very androgen dependent.

I can roughly estimate that his life span possibly can be 7 to 10 years according to studies which calculate based on Nadir PSA, Nadir T and other markers.

In fact, he needs to take care of emphysema and heart as treatments for PCa worsen these conditions.

(1) Cigarettes need to be stopped ASAP (2) Weight loss on war footing (3) Stopping eating animal fats fully and reduce fats to bare minimum. (4) avoid refined sugar as much as possible (5) Eating lots of colorful vegetables and fruits which have anti cancer substances..(cruciferous veggies, tomatoes, Dark Grapes, berries and Cherries are particularly beneficial One thing he is doing good is the 4 mile walk...it really does help.

PSA at end of 7 months will give more accurate information of his PCa...let him stay on current regimen until end of 7 month.

If joints are not well...he can do physical exercise while lying in bed along with stretching.

Best wishes.

naples2021 profile image
naples2021 in reply to LearnAll

Thank you Learn All for your advice , I hope he can make it to 5 years . When we first saw the doctor after he did the MRI test the urologist only give 6 months life expectancy …

LearnAll profile image
LearnAll in reply to naples2021

This site is full of men who were told that they only have 1 or 2 years...but they are still around after 5,7 ,10 and even 28 years (see a member by name Magnus) Zytiga has much more toxic effects on heart and Diabetes than Bicalutamide. If Bical is doing its job so well, there is no reason not to use it until it stops doing its job.

naples2021 profile image
naples2021 in reply to LearnAll

He only used biculatimide for 1 month when Eligard was administered , I want to see the oncologist before taking biculatimide again..

You are right that bicalutamide is the wrong medicine to take along with Eligard.. He should be taking something much stronger. What he does now can really make a big difference in knocking the cancer back.

With such a high PSA, it is unlikely that the PET/CT showed all there is. Was it an FDG PET/CT? That would explain how little it showed. Because he has bone pain, a NaF(18) PET/CT may show more, but a bone scan/CT should have been done immediately.

With a better idea of the number and site of his metastases, they will better be able to plan his therapy.

If he can, Moffitt is an excellent cancer center.

Hello Tall_ Allen yes it was a FDG PET/ CT it didn’t show a lot. My father didn’t want to do the bone scan as he learned that it was a two part scan taking longer than 2 hours . I believe Abiterone and prednisone will be the next course of treatment. I will ask for other scan as it is more specific .

Thank you for your advice !!

Too bad he didn't get the bone scan. Most of that time is waiting for the radioindicator to circulate, not in the machine. I can see you have your hands full with a difficult patient. Maybe discuss with his doctor some anti-anxiety meds?

He needs more info before he decides that "abiraterone and prednisone will be the next course of treatment." That is putting the cart before the horse.

Do you know which PET/CT did he have? You should inquiry about doing a PSMA PET/CT (Ga 68 PSMA or Pylarify) which are covered by Medicare now.

If in one of these tests, he does not have distant metastases or less than 4 distant metastases, he should be treated with with whole pelvis radiotherapy plus a brachytherapy boost and at least 2 years of Lupron plus abiraterone (Zytiga).

If he has multiple distant metastases he should be treated with ADT plus abiraterone , or ADT plus chemo. Try to discuss getting genetic and IHC studies of the biopsies to see if the cancer has any mutation which may be treated with specific drugs, such as olaparib, rucaparib, keytruda etc.

naples2021 profile image
naples2021 in reply to tango65

Thank you tango65 I will ask about IHC studies as I wasn’t aware..

tango65 profile image
tango65 in reply to naples2021

Best of luck,!

I am (72) from Mumbai ,India .Sorry to note high Psa and spread of Pc to lymph nodes . I am under treatment for PC since Jan 2016 .it is now 5 and 1/2 years of treatment .I have through the works- bone scan , pet scan ,PSMA,.Chemotherapy followed by ADT - with Xtandu,Enzalutamude . Progression was under check till Dec 2020. Oncologist tried chemo again with Cabzitaxcel

which did not work ; followed by Mitrotox ( or whatever it’s name is ) which Aalsi failed to work .In June 2021 he repeated Docetaxcel .

Psa came down from 108 to 81 in August 2021

Repeated chemo has played havoc

Lost weight 7 kg from 70

Diarrhoea is a big nuisance

Head aches and mild fevers are recurring

Hemoglobin dropped to 7.8 in August

Two units blood was needed before chemo cycle 3 September

My gleeson was again tested

It remains at 8

BRA 1and

BRA 2 tests were negative

Next course of action.

Depends on Psa

But chemo may be halted for a while

Options

Oncologist says

Radiation Lu177

Followed by immunotherapy

I have survived beyond 5 years

Don’t worry

First cross the five year bench mark

Options for treatment are many

I want to forget about the dreaded C

And live life in day to day basis

I am fully vaccinated

My diet is vegetarian

I listen to lectures on philosophy of life and the action points in chapters 3,4 and 5 from Bhagwat Gita to keep me sane ,alive ,happy and enjoying life with my loving wife ,daughters and grand daughter

I have very fond memories of visits to Italy with family in 2017, to US in 2018and 2019

I forgot my ailments

My oncologist used to get in touch over mail and send words of comfort

Life is great

C is my Karma

But I will not let it spoil my life

Hope to resume travel once pandemic scare blows away

I wear my mask without fail

awesome! I like your attitude. My father is still in denial phrase.

He does enjoy bhagwat gita on TV though :) .

> My oncologist used to get in touch over mail and send words of comfort

shocked to hear indian doctors do this. The first urologist my dad saw here in Hyderabad delivered "the news" in a very nonchalant way in under 20 secs walking through the hallway.

Hello Kodamolagai,Congratulation on your 5 years mark, I wish you 20 years more .I am glad to hear you traveled a lot and enjoyed your time .

Based on my personal experience and some discussions with my Rad Onco.Casodex is usually just for a short time before or at the beginning of Eligard or Lupron to stop the PSA bounce. It can however be a mini therapy or with ADT shots.

As to Eligard or Lupron with few exceptions over two series of shots, first 24 months and now 12 months, forever, I chose monthly. Seems more effective.

That said I am now taking Nubeqa because Lupron isn't enough. Working very well! PSA now is 0.03.

We are all different tho

Best of luck.

Thank you so much for taking your time. Congratulations in your PSA, I wish and pray it will stay forever that low .

I strongly recommend that YOU and if possible your father find the Genetic Counselors in your system.They will interview about your family history for certain cancers.

IF they recommend a Genetic Test, (simple blood draw) for you guys it MAY disclose certain mutated genes some of you may have inherited. BRCA 1 or 2 and others.

VERY important to determine. Widens treatment choices and provides a notification path for some of your blood relatives. Wish I had known sooner. Now on cross label drug, Olaparib, as one of my last treatments.

2Dee

naples2021 profile image
naples2021 in reply to 2dee

Hello 2dee, definitely I’ll bring Genetic test topic to the oncologist . I wish you the best !!

Geez left NYC to go to Florida.... who in their right mind do such a foolish thing? ☮☮☮I wish your Father a full long life of happiness........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/11/2021 10:18 PM DST

naples2021 profile image
naples2021 in reply to j-o-h-n

John I love your sense of humor!!

j-o-h-n profile image
j-o-h-n in reply to naples2021

Thank you..... I try.... I try....

------------------------------------------------------------------------

naples2021, " j-o-h-n, do you know how to keep a turkey in suspense?”

j-o-h-n, “No, I don’t. Please tell me how.”

naples2021: “Ok, j-o-h-n, I’ll tell you tomorrow!”

------------------------------------------------------------------------

A laugh for DAD!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/13/2021 12:33 PM DST

I’ve drawn conclusions in the past.... blaming the Eligard for my issues! Maybe in err while over looking the biculatamide that I was inadvertently left on for 4 months in lieu of the 1 month to prevent a PSA spike. Could have been that mega antibiotic (don’t recall the name but dangerous enough that I had to sign a release before it being administered) given before the biopsy and again prior to placing the targets. One, or a combination of all rode me hard and put me away wet!!!! The cognitive & executive decline was painfully obvious very early on in the treatment!!! To the point, a few months into the treatment, I began having terrible joint pains. At first it would move from joint to joint and at the end of my 20mo regiment, every major joint (ankle, knee, hip, shoulder & elbow), , was literally killing me.... but only on my left side?!!! It was clear to me that as I regained my testosterone, the pains subsided and have not returned to date!! This was long after being diagnosed and treated for arthritis in all joints but to no avail!

Best of luck to your dad!

Jim C

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