Saw MO yesterday: Saw my MO yesterday... - Advanced Prostate...

Advanced Prostate Cancer

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Saw MO yesterday

Zetabow profile image
37 Replies

Saw my MO yesterday, it's been 3 months and I was a little apprehensive because my pain has been increasing and I suppose you always worry a little around these times. PSA is still .028 so I'll assume the pain is maybe just the colder/damper weather.

He gave me an infusion (cannot remember the name) to strengthen my bones and prescribed Casodex, he also discussed surgery, not full castration but just to snip the lines so to speak, which I agreed to. He said recent research suggests this ADT and surgical route is best course of action with such advanced PC.

I got 28 tablets but forgot to ask for how long, does anyone know the normal run of this Casodex medication? I don't understand the reason for being prescribed this medication as my PSA is low and stable, is it just normal procedure at this stage of treatment? I know some smart people reside here so I hope guys you can make sense of this route.

Previous history...Diagnosed 12 months, Stage 4, Gleason 9, PSA1386, Lymph nodes and Mets to every bone with Marrow invasion on Femurs. Combined ADT (Diphereline) and 6 infusions of Chemo (Docetaxel) got PSA down to .028 in 6 months. Taking Opioids and other meds for pain, Oxycidine, Oxycodone, Neurontin,Sirdalud, Omeprazolum and recently Amlodipin for high BP.

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Zetabow profile image
Zetabow
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37 Replies
LearnAll profile image
LearnAll

If your PSA is .028 on your current regimen, I don't understand the reasoning behind adding Casodex.

What is your Alkaline phosphatage number ?

Zetabow profile image
Zetabow in reply toLearnAll

Data not showing at moment, this was from end of June.

Glükoos paastuseerumis/-plasmas7.14.11 - 5.89 mmol/LPlasma - 11.04.2019 12:43

ALAT20<41 U/L

ALP19540 - 129 U/L

ASAT25<40 U/L

Bilirubiin5.4<21 µmol/L

Kaltsium2.232.2 - 2.5 mmol/L

Kreatiniin6859 - 104 µmol/L

CRP<1<5 mg/L

Kaalium5.03.4 - 4.8 mmol/L

LDH335240 - 480 U/L

Naatrium140136 - 145 mmol/L

PSA0.28<4 µg/L

Kusihape317202 - 417 µmol/L

LearnAll profile image
LearnAll in reply toZetabow

zeta...this is old data, You need data from this month in order to assess current situation

Specially, Alkaline phosphatage, Albumin level and CRP.

Zetabow profile image
Zetabow in reply toLearnAll

Always difficult for me to decipher any of my test results as Estonian is not my native language. Hard for me to understand this stuff even when in English, that's why I'm on this site.

LearnAll profile image
LearnAll in reply toZetabow

PSA tells you the amount of cancer cells which are active and producing PSA

Alkaline phosphatage tell you how much bone activity is going on. A higher Alk Phosphatage is not good as it tells that bone activity is higher (means active metastatis going on)

AST and ALT tells condition of your liver..

Garbonzeaux profile image
Garbonzeaux in reply toZetabow

PSA 0.28 or 0.028?

whatsinaname profile image
whatsinaname

"Surgery (not full castration) but just to snip the lines, so to speak"

What purpose does "snipping the lines" (whatever that might mean) serve ??

Zetabow profile image
Zetabow in reply towhatsinaname

I assume to reduce all avenues of me producing testosterone, a fail safe so to speak. He said it's from latest research that is my best route with me having such advanced PC. Normally it's chemical or surgical castration, they seem to want to do both now.

It's why I brought it up here, for the more experienced to comment their thoughts on this route.

whatsinaname profile image
whatsinaname in reply toZetabow

Thanks, Zetabow. I have to admit honestly that I still don't have a clue :-(

monte1111 profile image
monte1111 in reply towhatsinaname

I never have a clue. I'm just here for the ride.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

and you forgot to pay the fare......... and that's not fair......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/03/2019 7:58 PM EST

monte1111 profile image
monte1111 in reply toj-o-h-n

It's not a fair. It's a Carnival. And we're all on Carousel Ponies, reaching for that ring.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Round and round we go, where we STOP nobody knows...... spinning for that silver bullet...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/03/2019 8:20 PM EST

whatsinaname profile image
whatsinaname in reply tomonte1111

Thanks for keeping in touch, monte1111. Not much time left now for me. If I make it to the New Year, 2020, it will be an achievement of sorts. All the very best to you :-)

Tall_Allen profile image
Tall_Allen

He is probably giving you Casodex as an extra medicine to block any remaining testosterone from activating your cancer. I'm surprised, however, that your gonads aren't being removed - if they still manufacture testosterone, it will activate the cancer no matter what he is snipping. Why not get a full orchiectomy?

Zetabow profile image
Zetabow in reply toTall_Allen

Thanks for your input, you always give good info.

I don't know, he has referred me back to Urology dept, I hope with this thread I can compose a list of questions to help me make good choices.

Magnus1964 profile image
Magnus1964

Casodex is an older but still quite effective. It kept my PSA undetectable for 5 years.

Find another doctor. Opioids help cancer growth - you should be on anti-inflammatories only like Celebrex or Diclofenac (I use this) - they help with the pain. Then something mild like paracetamol if a top up is needed. Casodex also inappropriate with such a low PSA, as is any "snipping". Your doc is throwing the kitchen sink at your cancer, and that does not work. Your immune system is getting trashed. Run.

Your test figs not easy to read, but your blood sugar may be a bit high. Cancer loves sugar - are you eating any sugar and not eating wheat, which is the same thing?

Zetabow profile image
Zetabow in reply to

David before I started taking Opioids I could hardly walk I was in so much pain, I've tried several medication options,. I was told radiation isn't an option as it's everywhere, I would have no quality of life if I came off Opioids.

in reply toZetabow

Your base should be an anti-inflammatory so you need far less top-up!

2dee profile image
2dee in reply toZetabow

For pain. Please try CBD, tincture in Olive oil from commercial hemp. Available online.

100-200mg per day spread around with dose every 6hrs.

My numbers were quite similar to yours, extensive Mets and 1300+ PSA, extreme pain opoids barely touched. CBD within a short time reduced MY pain by about 70%.

Tolerable...

2Dee

Zetabow profile image
Zetabow in reply to2dee

I've tried CBD, didn't work for me.

2dee profile image
2dee in reply toZetabow

Nothing it seems to work for all. Didn't help my arthritic friend but positive reports from friends with most kinds of cancer including PCa.

Rigorous consistent dosage seems very important to ME and to other cancer friends who tried. MO can't prescribe but sees no negative interaction with MY treatments.

I was able to cut back from 8+ opoid pills a day to 2. Can't seem to be able to drop those last two yet.

2Dee

in reply toZetabow

Try high Thc canabis oil for pain .

dadzone43 profile image
dadzone43

Zetabow, my brother, you need to take a listener with you when you see the doctor. Anxiety makes ALL of us miss things. Your MO should give you a written explanation of medications. NO you are not getting a little snip or a vasectomy. You agreed to having your balls cut off. I do not think it a good idea ask _anyone_ on this forum about how to take your pills. That is a good way to get in trouble. Find a friend/spouse/partner to go with you.

Zetabow profile image
Zetabow in reply todadzone43

My Wife normally comes with me but she has a really bad cold, as the waiting area is also the Chemo waiting area she wisely decided not to come with me this time.

dadzone43 profile image
dadzone43

Sorry about her cold and hope she is better. That said, your experience with not remembering important details from your last visit might suggest the need for a substitute listener when your wife is ill.

depotdoug profile image
depotdoug

How effective are your scans? I’m up for CT abdomen pelvis and NM bone scan in a month. Are those very useful tools?

Zetabow profile image
Zetabow in reply todepotdoug

I had my PET scan in the Summer after my Chemo. Results say significant reduction in Mets (it was whole skeleton) Lymph nodes 1.6cm reduced to 0.6cm and of course PSA went down.

I think because I had Mets to pretty much every bone and extensively into the Marrow on both Femurs, when it decides to come back, if will be fast and aggressive.

I haven't committed to the Surgery, I will have the chance to talk things over with an Urologist. I have a Surgical Oncologist friend that teaches at Medical University Hospital of Tartu, I will talk things over with him as well. The head of Urology dept, his daughter is a student at our Olyimpic archery School and my Wife and his Wife are good friends. I'm sure I'll get to talk this over with a few people before anything happens.

depotdoug profile image
depotdoug in reply toZetabow

Excellent description Zetabow. I'm nowhere at the level of Advance Cancer that you have experienced yet. My has been found ID'd in my Pelvic Lymph nodes and somewhat to a lesser extent in my upper abdominal Lymph nodes.

I'm just trying to comprehend the necessity of doing a CT of Pelvis/Abdomen with contrast and a total body nuclear med scan like Dec9-11th when I return for my 2nd Lupron ADT injection. It would or should Identify more precisely where my cancer met's are in specific Lymph nodes I would think.

Do you agree? What harm would it do to do those?

Doug

2dee profile image
2dee

Lupron ADT effectively neutered ME. Kind of like a frightened baby turtle trying to hatch a couple of raisens.

PSA staying below 2 for about the last 8 months. When that eventually fails MY plan is Abaraterone and or PARP inhibitor due to BRCA2 mutation.

MY MO told me with my extensive mets that surgery no longer an option.

2Dee

monte1111 profile image
monte1111

I get a little whiter shade of white when I hear "snip". Sounds like you should go all the way if you decide that is best. Another trophy on the mantel. I do wish you well!

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Snipeddity do dah, snipeddity day, my oh my, my balls are going away...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/03/2019 8:08 PM EST

monte1111 profile image
monte1111 in reply toj-o-h-n

Very good sir. I am just going to hate it when Christmas and all the Jingle Balls get here. I can hear it already. Curse you Walmart.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

and Target...........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/03/2019 8:22 PM EST

in reply toj-o-h-n

Hey ! That’s my swan song! j-o-h-n

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

google.com/search?q=swan+so...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/04/2019 12:43 PM EST

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