Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc.

Jitters, whenever I see a balloon floating across the sky, i will think of your Jim's balloons and the joy he brought to so many. You are an inspiration, sharing your life so well with us.

Passages, hope your medical problems have resolved and your step by step, day by days, are becoming easier.

Some may remember that Mark and I had planned a vacation to NC and NJ. He had a stroke the day before we were to leave. We are so fortunate that he has recovered well enough that we made the trip from FL to NJ and spending time with family. Zimac wrote that the weather is beautiful and it is! The change in scenery is very therapeutic for both of us. We may try to catch the fall foliage in NC on the return trip. We are doing this day to day, not planning too far ahead. Mark continues to amaze his doctors with his ups after major downs and i've nicknamed him my energizer bunny. I so appreciate the extra time we have had to continue making memories.
Pat

Nhwife, funny you mention the changes in color and the sounds..yesterday driving my SUV with ALL the windows down, including the sun roof and back window, driving my 15 yr old grandson to sports, leaves were all over the roads....I could hear us driving through them, the great crunching of the crisp leaves and they flew behind the car. I don't think I have ever heard that while driving..so I said to my grandson..can you hear the sound of the leaves??? His reply was a growl, grump whatever ....I just thought to myself, OHHHH to be so young again and take fall and life for granted..dropped him off headed home same way through the leaves driving a little over the speed limit and I heard Jim tell me as he had so many times.." LuAn slow down and listen and look at the colors of CT"...You are leaving tomorrow and won't see them till next year..so I did slow way down and took pictures all the way home.. thank you Jim. This is the first time he has spoke to me and of course it was to tell to SLOW down.....enjoy life...

Hello everyone. I'm a newbie and looking for support/information. My husband, Jeff, is 53 yrs old. Diagnosed in 2010 and had radical prostatectomy done, May 2010.

This week he went for 6 month check up and his PSA has gone from .5 in April to 1.6. Dr's office called house and left message that they would be mailing info to us to contact another Dr. and he will be starting chemo.

I don't know anything other than that now - I've called Dr office and asked for his nurse to call me so I can get more info.

I do not remember what his gleason was prior to surgery. I guess I was naive in hoping that the surgery would take this all away.

I'm scared - but hoping I am overreacting. Jeff is doing well. He was very strong for me last night - he knows how I worry. But I know he's scared. He's still dealing with side effects of surgery (ED, Urination problems).

Just looking for suggestions - what to expect, what to ask, etc.

Thanks for your time.
Dana Johnson

Okay...haven't seen any postings from anyone lately....what's happening......is this thread dying?
Dreamer44.....Ocibote.......nhwife......Jitters99....Passages......smo1......enjoylife.......Zimac

Zimac....I am e-mailing you a response...okay?
Sally

Good post Tednsal,

Hi to all and new member Dana,

I need to swing by here every couple of days to see what others are up too and to also encourage others. I find myself very drained at times and one of the most difficult is watching your loved one in pain or having discomfort. I will take my warrior husband to his monthly Oncologist appointment and see his PSA results on Friday. It will be 10 weeks on Xtandi after using Zytiga.

To jitters, passages, nhwife, I think of you often and send prayers your way. Jitters, I didn’t know you have horses, I have two mares myself.

Tednsal, Dreamer and Zimac, hang in there, you're in my thoughts.

Cathy

Sorry I've been neglect in posting. Coming back to Vegas has been some what like our cancer journey, an emotional roller coaster. Just flying with out him was hard. Went to a wedding Friday night that my daughter was on,her best friend from high school, and I did my best to keep up beat. When we were seated...by name..for dinner I had the only empty seat next to me and it hurt so much. I had not RSVP'd for Jim, he had passed already, they knew it..it was just a fluke and the bride was just as upset as I was. But it was hard. I haven't been able to make myself go to our condo or drive by our house yet, just not ready for that, it will come soon enough and I think I need to be by myself when they each happen.
Staying at a nice hotel and going to the spa with my daughter was wonderful and relaxing..4 days to relax unwind shop and eat...already gained 2lbs..that's not so good but my girls are happy. So many more places to eat out here in Vegas than in CT.
Seeing old friends that I haven't seen since Jim passed, well so far, had been okay, but the really really close ones I haven't seen yet. Going to see my dear friend that lost her son doing search and rescue in Vegas 2 wks after Jim passed this Sunday. We are going to the place he fell where they have put up a monument on his behalf in the mountains. This will be so hard but there will be so many of us that perhaps we will all keep upbeat at least for the time being, then going to the lodge for lunch.
It's so strange not to have doctor appts. for Jim, that's what took so much of our time here for the last 3-4 yrs between bypass surgery and cancer. More time to see family and friends.
Going to his retiree dinner on Thursday, that will be very hard, so glad I have friends to go with me that retired from same company...but glad there is pie for dessert..always a bright spot in my life..dessert.
Yes Cathy I have a quarter horse and my daughter has a Icelandic, I miss riding in CT. Chickens too, dogs and cats.
I have thought many times that I need to stop coming back to this site, sometimes it's very upsetting to read of other's loss, or even improvement or remission, again a roller coaster ride..but then I do and am happy, most of the time, that I did.
So please keep posting and I will keep reading and praying for my friends here.
Zimac, I am sure your daughters was beautiful and so happy to hear the meds are working for Bob.
Welcome Dana I will look at your thread soon. Just remember this cancer journey will REQUIRE adjustments to your expectations along the way.
LuAn

Thank you to all the women who keep us informed of how they are coping with a new normal. It sure isn't easy, especially when flukes happen like the empty chair beside Jitters. Everyone feels bad, but there is nothing that you can do about it and no going back. I remember the first time I went on an outing with our old group, just after my first husband died. Another friend was counting the seats and couldn't figure out why there was an odd number, and loudly asked, "who is the odd man out." There usually was just couples. I spoke up, and I'm sure the other woman still hurts for her unthoughtful remark. There are times when it takes everything you have to keep the tears at bay. It is a long learning curve to learn to be 'the odd man out".
I was wondering if, in the immediate aftermath of your tragedies, if you have any advice for those of use who might be in your footsteps in the future. Do you think any of the treatments your husbands underwent were of definite advantage while others should not have been tried? I know it's all so variable, and everyone's response is different, but how would you change some of the choices you made, with the benefit of hind site.
Hugs to all of you. There's not much else we can do, but I do keep you in my thoughts daily.

We are still here and doing relatively well. Many aches and pains, but pressing on.

I found the question of changes we would have made one I hope many here chime in on.

When my husband was first diagnosed, my dad had a very good friend, a prostate oncologist, who is mentioned quite often on this sight. When he saw my husband's post surgery results, he wanted to see my husband right away. That wasn't what my husband wanted to do, so he went the path that he has chosen. A couple years later, someone I worked with was diagnosed and I suggested he see this doctor. He immediately did chemo on him, and now 8 years later, he is still cancer free. I often wonder if we would have had the same results, but of course, we will never know. It seems that most cancer patients get chemo as their first form of treatment after surgery, and I have often wondered why prostate cancer isn't handled the same way. Just thinking out loud, I guess!

Even though I haven't been posting, I do stop in every few days to see how everyone is doing and believe me, you are all in my thoughts and prayers daily!

Dreamer, enjoy every minute of each day with Mark and keep him close.
I'm so trying to heal, I go places with my friends, my grandkids and my daughters. I shower, put onmy makeup, do my hair, dress up and we head out...my heart just says this isn't the same. I've yet to go to an event and had a good time without Jim. That evening and the next day I just want to cry sleep and hide. I am so sad today, and it makes my family sad that I am not enjoying the fun time they are having, and they worry about me. Maybe I just need some alone time so no one sees my pain?????? I hate today and maybe even tomorrow and the next day and then even more.....does heaven Skype????

I have been meaning to get back on here, but our PC journey marches on. My Bob continues to slip away, I am afraid. We had two good days recently that were very uplifting. His appetite is slowly increasing, but then slides back. I think the laxalose really messes with him, although he needs it to move his bowels. But it is a cyclical thing, with him then vomiting.

Not really sure what is going to happen at any given time. I miss his company more than anything. I met with the head of hospice the other day, who said they can not assist us with anything really until he is off treatment. That has not occurred, as he is still on the Trelstar, although the doctor took him off the Casodex, as this seemed to be failing. We see him again on the 25th. Taking this one day at a time, although the weight loss is significant, and I can't seem to get it moving.

Susan

I had a much better day today than yesterday. I think I am going to being able to pray tonight without so much anger. I have to say I don't feel like Jim is as close to me in Vegas as he was in CT. Not that we didn't have great memories here but he just fell in love with our place in CT, with so much peace..