Questions about labs and tests, treatment regimens, trouble obtaining medications, clinical trials..

I am sure this is highly variable but wondering how often and which labs and tests do you all get regularly? I know PSA is a no brainer but don't know frequency of them checking this.

Are there others done before (like ones that Paul should ask for now to help diagnostically?

Are there levels of things that should be checked- I am aware that Vitamin D can be very low in a lot of PC patients and am certainly going to ask for that.... But are there others I should ask for?

Which other things do they monitor on a regular basis (and which of these are strictly related to the different medications (such as checking liver function on  ketoconazole and other conazoles?

How often are you having to go see the different docs in your treatment team?

I guess just trying to get an idea how often this is going to be an intrusion and interruption in our lives and if I need to invest in a comfy chair.

I have so many questions all of a sudden....

Do any of you have trouble obtaining the medications you need and getting them covered by insurance? Is there help out there for this if needed?

How many have participated in clinical trials and what was your experience with this? I know some are just to measure things, some to treat, etc.... Would be interesting to hear your experiences.

What types of specialists do you all see?

Are there treatments that if you have them eliminate options in the future?

Are there other questions I should be asking right now too before we meet the MD and bombard him too? :)

Was anyone successful getting insurance to cover the second pathological opinion or am I chasing rainbows here?

Are there things we should be focusing on now (besides as much sex and loving as possible!!) that will be greatly affected in the coming months?

What would you have done differently in the beginnings if you had all the knowledge you now have on this subject matter?

Yup, I read the Start Here thread and tons of others.....

Thank you all!!!

 

kukukajoo,
Welcome to HW PC, not that any of us wanted to be here, but found our way. As you have seen, guys and caregivers with reams of support for old and new members. Some of the guys are very involved with the PC community and have the resources to help all find the answers. You have been on the caregivers thread and are learning how supportive this group can be.

I read some of your posts and know that you are digging as deep as you can for Paul. To know you are doing all this after recent relocation and loss of close family/friend support helps us understand some or your more unique challenges. You are asking good questions and seem to have a good sense of humor. Both will help you navigate the PC ocean.

from what I have read, it sounds like Paul has a lot of bone mets but I do not remember if you mentioned visceral mets. If he is free from visceral or only small lymph mets, he may be a candidate for Xofigo. It is intended to help manage bone pain, but the mechanism as I understand it (no medical background) helps the bone mets resolve and inhibits new growth. Good news too from Lupron Jim on his status with fewer bone mets and Lupron.

If nothing more, I can talk to you about hope!!! Such a powerful word in this battle. Mark was diagnosed in the early 90's, the dark ages in terms of PC advances. Surgical choices, radiation treatments, HT and ADT drugs, radiotherapeutics, immunotherapy....you have all of this today, and I can only imagine what the next 5 or 10 years will bring. So many guys with 8's and 9's at DX, so many guys under 50, so many who are PSA less than 1. One doc I remember in Mark's long list of physicians said his goal should be to stay alive and well long enough for the next big drug or breakthrough. Intermittent Lupron worked for almost 15 years, after radiation and seeds, before he was refractory. We were not married when he was first Dx'd and faced some of the same questions you are researching. We navigated through the SS disability issues, medicare, financial aid, mediocre docs, eventual ED and loss of libido, and created a life together that was loving, intimate, sensual and longer than we ever expected.

Hope Paul made it back to your new home this weekend and that your questions will have a few more answers from the doctor. I originally took notes, but more recently downloaded an ap so I could write questions before the appointment andtape the conversation with the docs. That worked well especially when new symptoms or changes in treatment were discussed.

My email is open, and feel free to contact me if you need a woman's voice. We can exchange phone numbers if you would like.

Dreamer 44 - Pat

I see my GP every 6 months and do a normal schedule of tests for a 60-yr old, plus a Vitamin D, and uric acid (I have gout).

I see my uro/surgeon every 3 months, offset by a month so they don't fall in the same month as the GP. Had to do that to resolve issues with insurance saying I was getting tests too often.

Let's see, I had to fight major battles for anything ED-related, and had to document that ED issues were directly caused by the original surgery. Even then coverage is limited on pills.

Bone scans are a real challenge. They refuse them each time, and it causes a month or so of high blood pressure.

They have a "special system" for the bone meds (Prolia, Xgeva, and the like) that mean I'll spend 10 hours or so on a dozen or more calls each time.

One (ok, two) I would suggest he get now, as a baseline, are the total & free testosterone tests. Many of us here never had one before starting HT, so we don't know what we are hoping to return to after going off HT.

The insurance has been a bigger challenge than I could have ever imagined at the start of this. My rule now is to absolutely, without any exception whatsoever, ask for (or demand, as needed) written confirmation that insurance has confirmed coverage for even the smallest thing. I got a letter this spring advising that my big national ins. co. has implemented a "customer is liable" policy for anything not properly approved, even if someone else (including them) is at fault. Last year my bone scan request was not filled out properly, and was denied after I believed (and was told repeatedly) it was approved. It took about 9 months to sort out, not completely to my benefit.