What you know might help me - Advanced Prostate...

Advanced Prostate Cancer
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What you know might help me

Monkeymamma
Monkeymamma

We visited the oncologist today. She said some things that aren’t so clear to me and I am hoping you guys and gals might be able to tell me plainly (and straight up) what her comments mean.

I will try first to give a the history of my husbands diagnosis and treatment but will preface this by saying that there is not a ton of info to provide.

Dx Oct 18/2018

PSA 1360

MRI showed stage 4 with bone mets to spine at T7, T9, and T11, and ribs at T6 and T9 on right side. Collapsed endplate at C7. Significant prostate irregularity and extended into the bladder base. No iliac or inguinal adenopathy seen. Seminal vesicles engorged. Lysis in left hip with destructive lesion of 15 mm. Sclerosis inposterior ileum and lysis on roof of left hip superiorly. Central sclerosis of sacrum at L2 level and at iliac side of left SI joint.

No biopsy required for diagnosis to be confirmed.

Treatment - Firmagon on Oct 19/2018

Bone scan - Nov 5/2018

Showed extensive mets from head to knees. Every single rib. Too many mets to count. More extensive than CT showed. Not much more detail.

Blood work- Nov 8/2018

PSA down to 275

HT switched to Eligard 3 month depot - Nov 21/2018

Blood work - Dec 3/2018

PSA down to 244

Zytiga treatment started - Dec 11/2018

Blood work - Dec 20/2018

PSA down to 226

Oncologist visit today - Jan 3/2018

Blood drawn but results not yet provided.

Referral to be made for radiation to help with pain in mid back and sacrum. Over holidays definitely more pain.

Painful urination - urine sample taken.

Instructed to continue on plan and see where PSA is after 3 months on Zytiga. Won’t be able to see where the PSA settles until then???? Tried to understand implications but hubby kept interrupting me. I think he may have been scared.

Pharmacist at hospital called later and said liver numbers up. Discontinue Zytiga for a week then have blood drawn again. Decide then whether or not to reinstate Zytiga. WHAT DOES THIS MEAN? What liver number? What are the implications of it being high?

23 Replies
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Called hospital and found out that it is his ALT that was elevated at 256. Still no idea what this means.

Alk pho’s is high too at 256 but is not the cause of them stopping Zytiga she said.

It means his liver is irritated by the Zytiga. You'll have to wait to see what the Zytiga does for him - have you discussed docetaxel with his oncologist?

Discussed it today but she wanted to see how he makes out with more time on Zytiga.

As to the liver enzymes being up, indicating the Zytiga is not being fully metabolized/ moving out of the Liver, and is affecting its function. So a pause, usually puts the enzymes back into the normal range--where you can proceed again with Zytiga. Happens to some men. I do not know about waiting to see if PSA's settle in 3 months. I IMO, would be checking and charting every 30 days.

I see another possible implication. I think a Chromogranin A--->blood test can be done while waiting, to check to see if Neuroendrocrine Pca cells in play. Thinking that you all should be thinking and talking to the MO, on the subject of Chemo. You are describing a lot of mets.

Nalakrats

I thought that if he had neuroendrocine pca cells, his PSA would have to be low? I thought that form of pca gave low PSA but the Mets grow at an aggressive rate regardless, but perhaps I am mistaken.

You can have both at the same time. Just more info as treatment goes forward--but Chemo is likely, and I expect soon. This can indicate what Chemo agent might be best in your case.

Nalakrats

Might as well burn through Zytiga first if it keeps bringing down PSA and save the big gun chemo...the sooner you start chemo the clock is ticking until that fails.

Monkeymamma
Monkeymamma
in reply to gusgold

Would chemo be considered the last line of treatment? If so,do you know how long that might be effective? I’m finding it very hard to figure out how the treatments will progress over time.

gusgold
gusgold
in reply to Monkeymamma

chemo is a wild card...it can work really well...for only a short time...or not at all....because of the advanced nature of the PCa the odds in your case are not good

The full prescribing information for Zytiga has a Section 5.3 Hepatotoxicity which addresses potential liver toxicities, various liver function tests (ALT, AST) and their values compared to normal, and possible dosage reductions/interruptions/stoppage. It's in this document:

janssenlabels.com/package-i...

You could print out the entire document, if necessary, and highlight any areas you might want to discuss further with his doctor.

Charles

Thank you Charles!!!!! :-)

Coffee enemas REALLY help the liver to detox and work properly. My husband has done almost every day for over two years and he notices a huge difference when he can’t squeeze it in!

I’ll look into that. He will do whatever he can to get back on Zytiga.

That's one righteous amount of bone mets. Where is he feeling pain and what is the RO's game plan?

His back (mid back) is the worst source of his pain but he has a lot of lytic damage in his hip too and that can sometimes be worse than the back. He is having radiation to his back and sacrum (waiting for them to call with the appointment).

I can’t get any good answers on the game plan because my husband interrupts when I try to ask. I don’t think he wants to know. All I know is that he is staying on eligard until at least Feb (maybe they’ll change it up once he is due for his next shot) and that they hope to start the Zytiga up again next week depending on his next blood results.

They ask about pain each time we go in and I ask about potential treatments and am basically told that they may start those later or that they aren’t approved for use in Canada.

I'm a big believer in European milk thistle and dandelion tea to bring down liver numbers and help liver function. Has helped us! You can do a search here for them to read posts. My husband started with Docetaxel plus ADT. Now on Zytiga, Prednisone and ADT.

Bebby1
Bebby1
in reply to pakb

I worked in a liver clinic for two years

Hep c

Milk thistle is still the best drug to maintain normal liver enzymes

The best gastro guys have no answers but who cares

It works

One per day forever

They even say encourage your kids to take them as they enter their drinking days

It protects the liver and for whatever reason .... it works

pakb
pakb
in reply to Bebby1

Yes! My kids have always had a smoothie for breakfast that has milk thistle in it. Our daughter has crohn's so we started before my husband's diagnosis. It really helps!

to MM ,

Bring some duct tape to the next meeting with your husband's MO. Tape your husband's mouth shut and continue consulting with the doctor. Most men are babies when it comes to dealing with doctors (I know, I'm one of them).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/03/2019 4:30 PM EST

Monkeymamma
Monkeymamma
in reply to j-o-h-n

Lol! I might have to!

Bebby1
Bebby1
in reply to j-o-h-n

Great advice

I’m a woman !

Double the duct tape 😈

j-o-h-n
j-o-h-n
in reply to Bebby1

hahahahahaha love it............

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/30/2019 2:42 PM DST

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