Hi Krissy, It sure can be a roller coaster ride and hope that today finds Paul feeling much better after a night's sleep. Having to balance every day life and resolve extra challenges like your...
Moonlitnight, Good to know the radiation has reduced the pain and and vision should improve as well, at least Mark's did. Hope that he is able to get some of his energy back. Prayers for both of you...
Hello Denise and welcome to Healing Well. You will find many very knowledgeable members willing to share their insight and experience. Please feel free to email me directly for feedback on Moffitt....
All, Less frequently checking in on HW, but following a few very late stage posts. Update on living life almost 5 months later. I am traveling in Poland, Mark's country of birth, for a few weeks....
Kukukajoo My prayers have been with you since your first post. I do check back on H W occasionally to follow a few who are struggling with very advanced pc. Several of the caregivers may truly...
I have not been visiting HW often in the last few weeks. As time moves on, the caregivers who have lost their loves move on. So many newly diagnosed who are overwhelmed not only by the diagnosis but...
Hi David, So surprised when I checked in to HW and saw your thread. What can I add?.. Ditto Wings of Eagles and the other posts wishing you well in your endeavors after HW. Feels a little like a...
Rob, Sal, Cathy, Stopped by to see how the Jevtana was working for all of you. Amazing how your paths are merging with possible clinical trials. Rob, you nailed it...more time with a better QOL. Sal,...
Kukukajoo I'll agree...you are feisty!! Amazing how PC brings out the best in our warriors and their partners. Your 2 mil out max may be allowed because its out of network. Good point about checking...
Nancy, Sad news another warrior has passed. You must still be in shock with the grief, only recently learning about the mets, then having him go so quickly. My email is open and I would send you back...
Quick note about comments on brain involvement and your concern about changes you see... If Paul has bone mets and they involve the skull or higher cervical spine, be careful. If he exhibits any...
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...
Peter I'm a little late for the party, just reading your post this evening. Your thoughts are so well written and truly draw a picture of what PC means for guys. Your sensitivity and humanity are...
Sad to know another warrior has been called home. Bob fought his battle to the end. We, who have walked a new road ahead of Chris, will be there for her as we were during the last months of their...
Hi Susan. Radsgrrl, Understand how you feel as you face each new day knowing that it may be more challenging than the day before. If you want to talk, my email is open. Ill reply with phone number....
Re Norm 62 about Hospice. One journal page i may write could be titled Is It Time to Call Hospice. That one decision carries more weight and emotion than all of the decisions you made before on the...
David, I can only offer hopeful words that your PCP can get the bowel thing under control first and that may help the weight and nutritional issues. Your friends provided some good insight. You are...
Hello again Rob, Sally, Cathy Not posting often but following your posts and a few others. Mostly interested in what is working for you, having shot through most conventional, available therapies....
Rob, Sal and Cathy, Sounds like Jevtana has been able to manage late PC growth for all. After following Mark's treatments and PSA, the scans are more accurate than rising PSA and how you feel is the...
preacherman, It's hard to have the one on one conversation with the oncol when the patient (dad for you) has made it clear that he does not want you to do that (that's what I got from your reply) I...
This Easter, I am going to a sunrise service. Its a first for me. Thoughts and prayers for each of my caregiver friends will go with me. Without going too far into the religious meaning of Easter,...
Hi David, So sorry you are down today, good that HW is here for you. Your narrative about the physical challenges and sleep issues helped me understand better what that was like for Mark. He never...
I know its a rough road, that caregiver path. Choices to be made that re-route you for a time. Sounds like Dad has made his decision about QOL. It's his decision to make, what he wants. If you think...
Mark completed provenge October 2012 No impact on rising psa; no improvement 12/12 scans. RIP 3/10/14...
Susan, radsgrrl22, Sounds like you are doing all you can, it is overwhelming. If you only had to deal with one thing -- Bob's pain and meds, or Home Health, or financial assistance, or social...
Ditto Longjr comments Same story with the suit Mark bought for our wedding in '97. Never thought he would be a 32 waist again, let alone, 30, 28.....Suit going to Salvation Army. I pray one day you...
Hi, Dave, Non-medically speaking, your PSA is great and regardless of the staging controlling the PSA seems to impact longevity. I'll ditto on David (Purgatory) about wanting to know the hows and...
Happy Anniversary!!! could you whistle a few bars of "Peg of My Heart" before your delicious seafood dinner? or at least download it to your phone and play it for her. Sent you a personal note via...
Susan radsgrrl22, you can google financial aid for prostate cancer and find some great links for more than just Zytiga. Medicare has a link and there is a link in one of the permanent threads on the...
Day to day, peace and prayers for you. I can visualize what you are talking about, having seen Mark go through similar stages. You continue to face each challenge with grace and courage. Wish there...
Rob, Take care and Gizzy will continue to be that best friend at your side. Good news on the PSA side, hope this breather in treatment gives you time to re-energize. Sal, Sorry to see the PSA...
I understand there are a few urologists and oncologists who specialize in advocacy for PC patients. A few practices have a specialty nurse practitioner that advocates one-on-one with patients. What I...
Fabulous, fantastic, happy news for you. It is so good to see so many on HW, and Gedman's recent post too!, doing so well. Hope there will be many more....
Time seems to be playing tricks. It's not even 3 weeks since Mark passed and it often feels like months ago. Then a memory of his last day or two pops up and it feels like I just left his room at...
Bill, thanks for mentioning on the caregivers thread too. Keep your voices loud, your pens or keypads writing or voting. Let's get PC to the level of Breast cancer awareness, the same level of...
Week two, day two, one day at a time. Lots of memories floating by, some I want to pause to enjoy, others I have to pause and dig a little. I frequently pass the house where we first lived and first...
Hi Gunner, Mark was placed on Xtandi soon after it was FDA approved, Dec 2012. His PSA was almost 1000 after completing Provenge in October. This was his "last shot" with multiple sites of visceral...
Mark and I will be there in spirit; he would have enjoyed the camaraderie. Hope one of you will write a 'fight' cheer and have the wives and partners perform. It could go viral... For the guy: thank...
Explorer, so sorry to hear of your loss. My love's last flight was only 2 days ago at age 67. I pray his last breaths were easy and had loved ones close by. Davidg As a caregiver with little...
Thank you, all, for your comments. HW has been a godsend for me and thoughts or suggestions from many of the other caregivers truly helped me through these last months. I want to find a way to give...
RIP My babe, my love, Mark took his last flight early Monday morning, Mar 10. Many close to him said he was an inspiration in his fight against PC. To me he was only being true to who he was. His...
Peter, thank you for keeping the thread alive and your comments on tombstone epitaph thread. Cathy, even the small increases are troublesome at this stage for you. Today a roller coaster ride, one of...
Have you bought 300 bottles of beer and do I hear a chorus of 300 bottles of beer on the wall, 300 bottles or beer, or do you young'uns even know the old bus trip song????...
Most of you know from my posts that Mark is now an inpatient at our local Hospice facility. The thread topic caught my eye. QOL is so important to many and the guys who have been through HT or chemos...
Hi David, I've been following your posts and continue to keep you in my prayers. Everyone tells me how strong and how much of an inspiration that my husband has been. I have to say you too are an...
First, I didn't take time to read the article, but I will. What I want to share is notes from my husband's urologist back in 1985 when he was first diagnosed. It was decision time for him, surgery...
Needed some humor today as i sit with my babe in his hospice room. He literally has one foot in the grave, but the other here on earth. Couple of euphemisms come to mind Not his time.....yet Waiting...
Sal, It is so vital to celebrate the special days, although I imagine you were feeling very alone. 50 years is amazing for any couple. Many of the hospice team I have met believe the patient knows...
Posted more on caregivers thread, but husbands face and eye issues were due to the mets that postop mentioned. Whenever I read posts about lip, tongue, chin, face, eye droop, vision issue on one...
Lupron Jim, I'm adding this to my mantras "there's a reason the rear view mirror is so small and the windshield looking forward so big". Many of the guys here have had docs who were practicing being...