New dx for my fiancee.... still in shock **Updated**

Kukukajoo,
Surgery and rads were out of the question for me. Too much spread. I was on Lupron and Casodex for 18 months. Psa got to less than 0.05. It started to rise so the pulled Casodex. Psa dropped again and stayed undetectable for 3 and a half more years. Took a 1 year vacation from treatment. Psa got up to 5 or something so did an old therapy called D.E.S. It worked for six months. Back to Lupron. It didn't do much. Had Provenge therapy 2 years ago. It worked for 14 months. Psa got to about 30 started Zytiga. Been on Zytiga 11 months. Psa is undetectable. I feel good. All scans were clean last time I had them. I live a good life and plan to for many years to come. God may have other plans but we shall see. Feel free to email me. I will give your fiancé my number. Regards.... Todd

Kukukajoo,

I am sorry that Lisa said something that set you off. I don't know what it was because I was late to the party and before I had arrived she had apologized and edited herself out of your thread. From your comment I assume it was some sort of Pollyannaish "Glad Game" sort of thing about the wonderful people she has met because of her husband's cancer or how much closer the disease has made them. We almost all say stuff like that here. And you're right, it's never true. I've met quite a number of wonderful people because of my cancer. People I expect to be lifetime friends. And would I trade those friendships for a cure? If I could go back in time and cure my disease so I never met them, would I?

Of course I would! Like a shot. I wouldn't even have to think about it. And, given the same choice so would any of them. Even Lisa. I mean come on. But, none of us is going to be given that chance. It's not an option.

So we fish out the good stuff from the experience and try to focus on that. Lisa was trying to help. And she has problems of her own.

She set you off and you vented. That's fine. You get to vent here. Everyone understands. Not your fault. But, just so you know, it's not her fault either. It's this danmed disease. It makes us crazy.

Todd1963 said...
Oops you said ringing. My bad.

Ringing/Burning....same difference! :)

We were talking about you and "Poof" you showed up! Thank you!

PS I wish everyone would drop it. I got up, took a shower and totally forgot about this and had dropped it as well. Then I come here and see all the responses regarding that... I honestly didn't put much thought into it at the time and NONE until I saw this thread just now.

All is forgiven and forgotten and I would like it to stay that way (if she could forgive me as well).


No need to continue to talk about it, it just brings attention to something that is better to let lay.....

Kuku -- just another voice saying don't interpret the word "terminal" the way you're used to thinking of it. Incurable is more accurate.

When my husband's scans came in showing widespread metastases to bones and lymph nodes, following a biopsy that showed 100% cancer cells in 11 of 12 cores and 95% in the 12th, G9 (5+4), his doctor called him in his car as he was driving home from work on a highway, in heavy traffic, and told him he was terminal. Ted kinda lost it and told him to call me. So he called me as I was driving with our three young kids, and told me Ted was terminal, could expect 2.5 years, and that we should do nothing, as it was too late, at this point nothing we did could lengthen Ted's like and anything we did would reduce the quality. I asked about radiation just for pain relief (he was in a ton of pain at that time), and he said it wasn't possible because "you can't radiate an entire skeleton." I'd been choosing my words very carefully, but still as soon as the call ended, my oldest asked if Daddy was going to die. After that call, I thought the answer was yes (although I said we're all going to die, but not any time soon!). But I was wrong because that doctor was wrong.

That was two years ago. Ted is in remission, his bones are now entirely clear of cancer, and his current doctor says he should think of it as a chronic condition -- he'll always have it, he'll always have to manage it, but he should still plan on a normal life span.

I have been amazed at how much progress there has been in treating metastatic cancer in just the two years I've been following it. There are a lot of weapons in the arsenal, and more being built all the time. Stay optimistic and be thrilled that you have the medical knowledge you do because it'll be invaluable to you as his advocate.

Feel free to message me directly and I can send you the diet/supplement advice our Dr. (the Dr. Myers others have mentioned) gave us, since you can start that immediately, and answer any other questions or just talk.

Katie
A fellow Shirley fan -- my mom was exactly like the force-of-nature characters she tended to play; my sister and Dad and I have sometimes put on one of those movies when we're missing her.

Hello All,

I'm Paul, Kukukajoo is my better half. I've been reading through this forum and am surprised and happy to see such a group with this kind of extensive knowledge and reference materials.

I'm incredibly lucky having her as my life partner and health "pitbull". Research and patient advocacy is one of Girlie's core traits and she's tearing up every resource she can find (just like I figured she would).

One of the biggest problems is wrapping my head around this. I've faced a lot of illness and death in my life but, I'm usually the problem solver and care giver. I've never been sick or needed surgery. Not so much as chicken pox or any illness worse than the flu or an ulcer. Now instead of caring for Girlie, I find myself in the position of needing help. Like I said, I solve and manage problems and being the problem goes against who I am! As my dad would say "suck it up, walk it off or find a solution, Cupcake!"

My systemic (male) personality problems became self evident while we were up in NH for the graduation and to pack up my shop and move our stuff down to GA. I felt like death warmed over. At one point I even thought to myself that if they were going to do surgery when we got back, I wouldn't survive it. I chocked up my fatigue and general lousy feeling self to lack of sleep and just being tired. I just wanted to rest and sleep. Girlie threatened me (as only a woman can) and forced me to go to the ER. As it turns out, that was a good thing. I had raging infections that could have had severe consequences. I fought her tooth and nail!

I'm so, so lucky and happy to have my Girlie. Yet, at the same time I'm angry and down right pissed off to be putting her through this. This is NOT part of the plan, darn it!!!

Sorry for the rant, folks. This place seems to be a great resource of people and information. Hopefully, I'll be able to contribute more as knowledge and experience with this mutinous walnut grows.

Paul