Liver Metastasis/Firmagon Bone Pain - Advanced Prostate...

Advanced Prostate Cancer

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Liver Metastasis/Firmagon Bone Pain

CantChoose profile image
15 Replies

We have had some really hard weeks. My husband was diagnosed end of March and spent 2 full weeks in the hospital following a Shockwave treatment for a kidney stone. We have still not sorted out all the issues. He's had three transfusions and is finally holding his own for hemaglobin. Potassium is also in the acceptable range now, after dozens of IV riders (and now oral pills).

He is still having constant diarrhea. We need to follow up with the GI doctor, but all the doctors seem remarkably incurious about causes. We've been told it can take weeks for a bowel to re-regulate. Buy stock in Gatorade, because we are going through it.

Also have been hassling with insurance for two weeks about Lupron. Yesterday, we had our first appointment with Dr. Hussain at Northwestern. She managed to get the shot approved and administered in the same morning! She said it was crazy to be waiting, and that Lupron wouldn't work as quickly.

I am just shell-shocked. There is so much going on. Plus, his catheter got blocked, so I had to take him to the ER in the middle of the night. Thankfully, they gave me a flushing kit so I can do it myself now.

Two questions:

1. He's reporting a ton of pain in his bones and muscles after the shot. The shot site also hurts - - we expected this - - but are the extensive body aches also expected?

2. I read his initial CT scan yesterday for the first time. There is a suspicious mass in the liver. We were told no lymph node involvement. How could he already have a liver metastasis then? Is this as dire as it appears at first glance?

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15 Replies
ctarleton profile image
ctarleton

If you may be seeing Maha H. Hussain at Northwestern, you may be comforted that she is among the best, and has LOTS of experience and many publications involving advanced prostate cancer.

feinberg.northwestern.edu/f...

Personally, I would not jump the gun on overly worrying about whether or not the situation may be "dire". One thing and one day at a time. The Androgen Deprivation Therapy (ADT) with the Firmagon has barely had time to work yet. In the months ahead you will likely get a good feel for the PSA response trend. If it works well, there could be many months or years of time ahead to keep addressing the prostate cancer issues. Of course, report any new symptoms to your doctor. See what she says. I would be asking things like, .... "What kinds of scans may I need now, or in the future, to determine whether or not I have "mets" elsewhere in my body. If I do or if I don't, what are All my treatment options? Will you be doing any genetic testing for my inherited or tumor genes? Etc."

This helpful blog link (courtesy Tall Allen's website) may also be of interest as you think about questions for the doctor.

pcnrv.blogspot.com/search/l...

As well as this Section of the NCCN Guidelines for Patients with advanced prostate cancer.

nccn.org/patients/guideline...

Deep Breaths.... Big Hugs to you both.

Charles

CantChoose profile image
CantChoose in reply to ctarleton

Thank you! You guys recommended her, so I already owe a debt to this board. We are doing a bone scan Monday. TURP surgery next Thursday. Lots of labs in between.

I know I need to not panic, but it's so damn hard.

farmanerd profile image
farmanerd

When I read the report of a CT scan done to check my abdomen for possible sources of groin pain that I was having along with fever/chills, I also found that they discovered a 9mm lesion on my liver. Caused me a bit of concern, so I brought this up to my URO's PA (Physician Assistant) and she said that it was most likely a benign hemangioma, but that as the report stated, it would be good to get an MRI of it in the future just for verification. So don't panic, it may be nothing, but definitely discuss it with your doctor(s). I discovered that it was officially called a "hepatic incidentaloma".

ncbi.nlm.nih.gov/pmc/articl...

CantChoose profile image
CantChoose in reply to farmanerd

Incidentaloma is hysterical.

I guess wedonthaveaclualoma doesn't fit in the forms?

ctarleton profile image
ctarleton in reply to CantChoose

Ha. Ha. Ha. Ha. Ha. Ha.

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

youhitthenailrightontheheadloma

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/25/2019 5:02 PM DST

Sxrxrnr1 profile image
Sxrxrnr1

Your comment on constant diarrhea... I know it is not the American male way,,,,but a bidet would help immensely for anyone going through this,,,,as a matter of fact even if not going thru this. You will never go back to your Charmin or Sears catalog.

j-o-h-n profile image
j-o-h-n in reply to Sxrxrnr1

Sears catalog?

I prefer playboy magazine instead.... adds a little more spike to the wipe.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/25/2019 5:09 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Remember Sears catalogue from Grandparent's farm days. Too slick. Very undesirable. Only marginally better than the ample supply of corn cobs. But for a youngster, the bra section was eye opening.

j-o-h-n profile image
j-o-h-n in reply to monte1111

LOL

Slick they are.... corn cobs are like a grater.... wore out my palm many a time with the bra section.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/25/2019 7:50 PM DST

Sxrxrnr1 profile image
Sxrxrnr1 in reply to monte1111

As a Nebraska boy growing up on a farm, oh the memories of our outhouse on a blizzardly 10 below day reading and dreaming my way thru the Sears catalog. I’d take that in a New York minute given the choice.

j-o-h-n profile image
j-o-h-n in reply to Sxrxrnr1

What's the other choice?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/25/2019 10:20 PM DST

Sxrxrnr1 profile image
Sxrxrnr1 in reply to j-o-h-n

A Hobson’s choice. Choices are to live a life with advanced PCa, or for life whenever nature calls, to use a Nebraska farm outhouse in a blizzard stocked only with a sears catalogue.

j-o-h-n profile image
j-o-h-n in reply to Sxrxrnr1

Ok I agree.... I'd choose the house with the quarter moon carved into it also.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/26/2019 5:32 PM DST

gleason9guy profile image
gleason9guy in reply to Sxrxrnr1

Ah, bidets. A real symbol of civilization.

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