Welcome new member redheadskier (Lisa) - posting for her husband Frank (G9, mets)

Good to have you on board Lisa and I hope your husband will join as well. We are a diverse group of men and women, each with our own story. At this point in my journey I have mets to the ribs and back and take Casodex and Eligard, which is in the same family as Lupron. I have put off Zometa until I get one HT treatment that fails. My last shot was in July 2013 and it brought my PSA down to .1 from 27.6. The Lupron did effect my emotions as does the Casodex which I still take. So it is hard to answer your question regarding depression. Right now things appear to be moving fast for the two of you and hopefully your are in good hands with a Urologist and Oncologist with significant experience in Advanced prostate cancer. Keep us posted and my best to both of you.
Michael

RedHead,

Welcome to the forum. Sorry you find yourself here but glad you found us.

Yes, wives are very much welcome both on the forum and in the -- very exclusive and ritzy -- Gleason 9 club.

My only answer to your question about when you treat depression is that it doesn't much matter where it comes from, if it lasts too long talk to his doctor about treatment even if there are obvious causes for him to be feeling a bit low. A diagnosis of aggressive prostate cancer always knocks a man down and being told he is stage IV tends to steamroller him. There's stuff you guys need to learn and to do and wasting a lot of time waiting to see if he can peel himself up off the pavement is silly.

There are lots of treatments out there if you do some research and there are ways to be more aggressive with treatment than the standard of care if that is what you guys want. If there are few enough metastases then you might be able to talk to one of the doctors who are (somewhat experimentally) looking to cure "oligometastatic" disease. (Google for it, I think I spelled it right.) Or if he's too far along for that there are immunological treatments which are the latest rage. We have members here who can tell you first hand about both of those approaches.

It would be handy if you lived on the northeast coast of Florida. I seem to recall there is a cancer center there that is treating oligometastatic disease and more important, you could drag you husband to our gathering next weekend in Titusville (more or less) and we will show him how its done.

Good luck. Keep us posted.

Lisa,

"life will calm down and there will be a new normal..."
Jerry catches the leprechaun with that summation. Take off your shoes, kick back and breathe. I'm five years a 9, extensive mets, and I still gotta shovel snow cut the grass (if we ever see it again) and go to work. Life's not over for you or Frank. It's just different. You'll need good advice and a sound plan but for the moment take solace in the fact that the sun will still rise tomorrow and you'll still have to feed the dog.

Jim

Hi Lisa (and Frank),
Just wanted to send a word of welcome. This is a great place for the gals as well as the guys. My guy is also somewhat technologically challenged so i do the majority of posting and research.
Ditto on what Piy and all the others say about the new normal and finding the best Onc with the best plan for you. We've "let go" a small handful of docs in the past few years.
Live the life you've been dealt with all your heart and soul! We are packing up the RV and heading down to FL tomorrow to meet with our new besties! Can't wait.

Any questions, concerns, rants...we're all here for you guys.

Marie (and JIm)

Lisa,
That's a lot to deal with so suddenly and Frank's reaction is very normal -- you should be worried if he didn't feel that way. But if his sadness or anxiety increasingly gets in the way of following his treatment plan or everyday living, his quality of life may be improved by seeing a therapist. In fact, because prostate cancer often negatively affects relationships, it's something for you both to consider. You might want to give it a little time, though. My layman's understanding is that when you are reeling with recently caused grief or fear, it is hard to receive input. I found that learning Mindfulness helped me get through it faster. It doesn't at all relieve the psychic pain (that would be avoidance, which only prolongs the process), but it does accelerate the process of working through the pain and fears.

- Allen

Lisa I have heard others on the forum talk about Dr. Strum's book on Advanced cancer, so that might be a place to start. You should be able to find that on Amazon. And Jim you might be right about Zometa, but on their homepage they say to wait until one HT treatment has failed. I also read that someplace else, but I also exercise a great deal so that is hopefully helping with the bone strengthening. But my next visit to the URO will deal with that question and once I get back from a long delayed trip out West I will visit with my Oncologist.
Michael

Lisa,
Welcome aboard, glad that you found us.
You are more than welcome here being a wife. You have many sisters here doing the same thing. Sometimes the men just shut down and don't know how to express themselves.

Read the post on the forum and reread some of them to Frank. Sometimes we have some pretty good laughs around here even though this is a serious subject we are talking about. Maybe it will get Frank interested in it. I use to read some of the post to my wife after I found the forum and we would both laugh out loud 'til our eyes teared.

Tell Frank to hang in there. We are a lot of brothers from other mothers that are in this thing together. He is not alone and we all know what he is going through.

Bill from Florida

Oh Amy, absolutely agree and Frank has a great medical oncologist and we are lucky to have found him so early in the game. The question I asked was to further my knowledge and satisfy my curiosity. While reading various studies of the different agents and their mechanism of action, I wonder why they haven't been tested in other stages of disease progression...I am probably just rushing research that will be done in the future.

Thanks for your input, Lisa

Good morning all,
So, we survived the first infusion and Eligard shot on Tuesday, though, the emotional impact was harder than the treatment. When we were in the infusion wing with all the other patients, it was a visual picture of the seriousness of Frank's diagnosis. Nothing else has driven that point home so harshly. We will be better prepared mentally next month....

Lisa

Lisa and Frank ...

You've gotten a lot of great input from our brothers here ... glad you found us. I'll add a couple of more from my point of view that might help.

1. The Lupron / hormone therapy will start to affect muscle pretty quickly. Some of the best advice i got early on is to take daily exercise, especially weight lifting, very seriously and to support it with diet. Keeping that muscle is important in the long run. And there is a long run.

2. It sounds like you have an excellent oncologist to start with. I encourage you to think early about building a broader team. I tell this to everyone -- any one doctor has blind spots or habits. I had the director of a top cancer center as my primary oncologist. I found that i was able to get better care from them when i started getting outside consulting oncologists to help. It kept everyone on their toes and got me treatments earlier and more more aggressively than i would have gotten otherwise. I use Scholz/Lam as my outside guys. They have a lot of contacts and ideas. Not always right, but having the team means that i can drive the bus, ask questions, make them talk to one another, and get better decisions out of it. This is too important to leave to one doctor--he's not a savior, just another human being.

That's my two cents. You asked about Provenge and other things early; generally hormone therapy works well for quite some time, so advanced drugs are only tested and used on those of us where the hormone therapy no longer works. As Redwing said, that can last for years depending on the individual ... it's a long road. Hope!

Ray

Well, sorry about that; it would help if I gave you the right name! It's Todd1963. I blame the Lupron (my standard excuse)!

Here's a link to his blog directly:
toddseals63.blogspot.com/

Steel Guy/Ray,

Thanks for your excellent points...#2 really got me thinking about who, what and where of a top-notch
PCa oncologist to add to our team. My husband said, when this all started, that he didn't want to travel
for medical care, but, he is now starting to believe it might be a good idea. I have several options:
Dr. Stephen Strum in Ashland, Oregon, Oregon Health Sciences University in Portland or Seattle Cancer Care. Each would be a long days drive plus overnight stay for day or two. With Frank's extensive bone mets, I would feel more confident if we had true expertise on our side.

Any thoughts on these doctors/places or any other recommendations would be helpful....

Redwing, thanks for the link to Todd1963! I have read bits and pieces and am amazed. Plan to read whole blog when I have some time.

And to everyone else, thanks for all your welcoming words...I truly feel better knowing you all are out there.

Lisa





So, have you heard anything good or bad about any of these doctors/places? Any other recommendations?
I would love input.