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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CantChoose
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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.
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.
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.
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".
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.
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.
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.
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.
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Any correlation between hot flushes and effectiveness of ADT + Casodex 
Shortness of breath on Lupron; switch back to firmagon?
Elevated liver enzymes
First post…ex-hubby, 60, diag 8-2021, PSA 243, Mets to LN, bone scan results pending
Firmagon vs. Lupron?
