Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 4)

Theresa Thank you for posting here about winmui's dad. I posted on her original thread.

My husband completed 5 rounds of docetaxal and didn't complete the 6th due to SE's. So, I know that SE's can be alarming but don't get too discouraged, give it some time and he may adjust. I know its hard to watch him go through this but hang in there.

All the best,
Susan

Just updating this thread on our journey with PC:
After battling this disease for 15 years,it has progressed to become Stage IV Advanced Metastatic Prostate Cancer (has metastasized to his bones), he started on the Xofigo/Radium223 in late August. His first treatment was a miracle, husband responded well and was up and about, except for the continuious fatigue he was doing better. However, when it was time for his fifth injection, his blood counts were not high enough. These treatments, as all treatments, help and hurt the patient's system, and it's true with this treatment as well. The medication goes to the body's bone marrow and works from the inside out, killing cancer cells along with bone marrow. The bone marrow creates platelet's which help with clotting, creating red and white blood cells. To continue this current Xofigo/Radium223 treatment, Ted's platelet count had to be 50,000 or more and this was not happening, his counts were getting lower and lower, to the point of having to have a blood and platelet infusions. This latest condition had the medical oncologist concerned and requested Ted to have a bone marrow biopsy. The following morning after the biopsy, Ted experienced a numbness in his left hand, left side of his face, with our son, John's insistence, we go to the ER at a hospital known for having a good neurological department. This said, we go and Ted had a barrage of tests, x-rays,EKG, CT's,MRI of the brain, electrocardiogram, etc. We stayed in the ER until 8:30 that night, at which time he was transferred to a room and possibly some rest. Next day, woke up at 5 am for lab, and then the procession began. The medical oncologist came in and advised that there were several lesions in the dura (lining of the brain), probably metastasized from the prostate cancer, could be radiated. The neurologist also came in and said that this was not a TIA, but systematic of one because the cancer has caused the blood to run thick causing a blockage, which was what happened in this instance.
We have had several weather issues here in Tennessee lately, which has caused cancellations of doctor appointments to go over the latest biopsy results and what it means to Ted's livelihood. We finally were able to see the doctor Thursday morning, and the news was not very optimistic for the future. Radiation was a possibility for the brain lesions, side effects, hair lose, continued fatigue, etc., for the depletion of the bone marrow, no treatment available. The idea is that his system is "tired" from all of the years of treatment, his bone marrow is just not "bouncing back". MO advised Ted could continue on with medications (not Xofigo/Radium223), but that would just be "putting off" the eneventable. Hospice care was suggested. Quality of life is an issue that we must think about at this time verses continued therapy only to extend life a few more months.
We will see the MO again on Monday, to see if husband wants to do radiation on his head, maybe actually having a consultation with the RO directly, and to get his prospective on this procedure, will possibly suggest next step. No other treatments for the bone marrow issue and he can continue the hormone therapy, but the Xgeva will be useless with these latest findings.
So, our journey is coming to an end, he has fought a good fight, his body and he, I think are both tired and ready to lay down. I'm not ready for this to happen, but I am not the one with the cancer and living inside of his body. So I will agree with whatever he wants to do and I will continue posting until......

Will post same on the "starting Xofigo/Radium223 thread also.

Peace, Love and most of all Hope to all of you PC Warriors and caregivers, keep on fighting but know when to stop as well!

sal

Dear Sal,

I read your post with great sadness on this late Friday afternoon. I so admire your keeping quality of life uppermost in your mind. We all need to make our own choices and be our own advocates in an institutionalized system that is weighted towards "life" over "quality of life". Having read what this disease does, I no longer believe that a "beautiful death" is oxymoronic. Rather, I view it as something to be intentionally sought to the extent we have ANY control.
Having followed your thoughtful and difficult journey, I know you and Ted will make the right decision for you and your loved ones.
All the best.

Sal, thinking of you with heavy heart and praying for you and Ted both as you struggle with the tough decision you must face in the coming days.
Beth

Ted and Sal,
Thinking of you.
Peace,
Susan

Ted and Sal,

I am holding you both in my thoughts.

Lisa and Frank

Radsgrrl22,

Awful to see another in pain and yet we do. I've said often enough this is truly a roller coaster ride. One minute it's okay the next you are at ER which is not a good place because they do not know you.

Tednsal sally, we are with you.

God speed everyone,
Enjoylife

I am so happy to see both Susans and Lisa and enjoylife as well checking in at the "corner" even though we share such difficulties. I am especially sad to see all your guys and Casper experiencing so much pain. Gary deals daily with the nausea, but thus far has not had to increase his pain meds. I dread the day it may come, as I already feel totally helpless most days. His last scan showed mets to his liver (yes...hate this crappy cancer). We are currently in Portland where Gary is getting immunotherapy in a clinical trial phase 1. Providence Medical. Staff is amazingly wonderful. So far the medical teams providing trtmnt is the only good thing about PCa.
I hope we hear from Sal again. I know she is spending as much time with Ted as she possibly can right now. Lisa, How is Frank doing? Did you have a nice trip?
Beth

BeeJane – I so hope the PSA was good. Thank you so much for your eloquent support for all of us on this thread. Your words brought me to tears. I'd been away from HW for some time and when I came back I didn't post often but lurked…a lot. I came across this thread and was so grateful for the openness and honesty expressed by these women, some of who have since lost their men to this disease.

Casper – As BeeJane said - Do come here. Support is plentiful and freely given.

To others on this forum - We know where our men are with this disease and factually this forum does, too. As a poster on another thread pointed out to me you can’t have empathy unless you have the experience. Well, guess I’m as close as I’ll ever get to that…every minute of every day.
I know this thread gets a lot of views and it would be wonderful if others could just give a word of encouragement. Doesn’t have to be grand – maybe just “thinking of you all” because that does mean something…to every one of us.

Susan (myman)

2005 Husband diagnosed at 63 yo Gleason 4+3
2006 LRP First PSA 11.8 Stage IV (let me just say that sucked)
2006 Start Lupron 3 month
2010 - 2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Start Xgeva & Taxotare
10/31/2014 Last Taxotare infusion.
Pre chemo - CTC was 16 now 0. PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/18/ 15 Bone scan & CT Will begin either Xofigo or Jevtana

Post Edited (myman) : 3/12/2015 6:00:55 PM (GMT-6)

DYank, so glad to see you post here. If your doctor isn't up to speed on these trials then you and your husband need to move ahead whatever way you can. You'll find a way. There are so many new options coming along for cancer. The latest is vaccine related and sounds hopeful.
Since your husband has no bone mets he's in a good position. It's truly amazing how much has happened since we first started on this road - we never thought we'd be in this for almost 10 years and we are grateful for every minute!

Don't lose hope and keep up the fight - there's much to be gained for both of you.
Find your peace and work from there.


Sal and Ted - You're in our thoughts.

Susan (myman)

Casper,

It's early in the morning. So forgive me if I go off on a tangent. I could hear the pain in your voice regarding the feelings you have about what your wife might be dealing with. I can only speak from my own experience. There are times where I may appear to detach a bit from my partner's experience. I think it is the brains way of dealing with seeing the one you love the most crying in utter pain. Most other times, I am so tired from getting up every two hours to give him pain killers, but I wouldn't be anywhere else than by his side.

Take care

So good to hear from all the "regulars" and the newly vocal lurkers. Even if the news isn't the best, the stories, the experiences all matter so much to me. To see where you all have been, where you are, where you (and I) are going. A not so gentle reminder to stay focused on Nick every day, in big and small ways. Thanks to all of you. Your gift of sharing is a gift beyond measure.