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

Beth,

Thanks for asking...I thought he would be feeling better by now as it's been 10 days. The docetaxel seems to have irritated his gastrointestinal track so he's eating soft foods for now. Other than that, he's doing fine. What was eye-opening to me was the advice to flush twice with the lid down for 48 hours after infusion...***? and we are voluntarily putting this in his veins?? Good thing our dogs have never been allowed to drink out of the toilet

Hey new member caregivers....I found this thread very helpful!
Beth

Hi Tedsnal,

Sorry to hear about what's going on with your guy. This roller coaster ride gets very heavy sometimes. I, too have been low lately, If not outright depressed. My guy's numbers went up this month on Zytiga for the first time. Frankly, I wasn't surprised, as his pain has increased. Dr. is talking about trying Xofigo. Not sure what will happen. His daughter is coming to town next week with new grandson in tow. We have not met him yet, so we are super excited. But there is a part of me that is seeing this as the beginning of the end. I just started back to work out the home for the first time in months. It feels good to be getting out, but feeling guilty and worried, as he can get confused from the pain meds.

I have been feeling very isolated lately, as he is in bed by 7:00 pm. I feel like I can't speak frankly about what I am experiencing, which has been difficult. I hope both of our guys can get a little relief, us too!

Hi caregivers,
So good to see a few posts here to bump this thread back up to the top. We really need each one anothers support through these ups and downs. So sorry to hear Frank's numbers have risen so drastically! I am wishing him a better outcome soon. Gary starts his first radiation treatment on his sacrum tomorrow and he is still on zytiga. He's having enough discomfort in other bones that I am concerned that it's not enough right now. Had a PSA test last week, and I'm scared to ask the doc what it was. It's been several weeks ago that it was at 50, and I really keep hoping and praying for a drop rather than a rise. Haven't heard from Lisa the redheaded skiier lately and been wondering about her. Winnie's dad is really doing poorly and she needs our support and prayers right now as well. My email is also visible, if anyone wants to chat.
Susan and Sal, don't forget to care for yourself while you are caring for your loved ones, too! Y'all are amazing women and deserve better than the lot you've been dealt!
Beth

Hello all. Yes, Hawaii was wonderful. Now we are paying the price by watching our weight. Nick continues on his bucket list buying spree. Several unwrapped gifts under tree from Santa. Guitar, a model F118 fighter jet. Our kids thought it was hysterical.
PSA continues undetectable and PET scan shows bone mets in sacrum unchanged from last year. His brain is foggier and he can be unsteady on his feet. But he is doing pretty well, all things considered. Mtg with med onc tomorrow. Maybe an HT holiday this summer?
Three cruises planned for 2015. We are grabbing gusto while we can, knowing how unpredictable this stage 4 diagnosis is.
Please know that those of you going through more troubling times than we are are in my thoughts daily. Hug yourself, have that second glass of wine, go see a movie. Caring for yourself is right up there with caring for your husband.

Good morning all you lovely ladies!

Glad to see Hawaii agreed with you Haliday. Frank and I, my sister and his sister and her best friend, head to Tahiti, BoraBora, New Zealand and Australia in 8 days. We'll be gone for 23 days and really starting to get excited now. Almost cancelled the trip because hubby will miss 3rd cycle of docetaxel but medonc will just push it back 'til end of February. Plus, he's not feeling so great. but...we're going! Funny, but what I'm looking forward to most is no doctor's appointments, no infusion center, no blood draws etc. Definitely need a break from cancer even though it will be coming with us. When we get back, Frank will have a port put in to give his veins a break from all the poking. Frank keeps calling this trip "our last hurrah" which I don't much like hearing...do you think cancer patients "know" how much time they have left? He seems pretty clear that he is fading even though medically his PCa is not that active? It's the comorbidities that are troubling him, the docetaxel has been extremely hard on his preexisting gastro issues.
Well, now I've depressed myself. I think of all of you beautiful people daily. Thanks for listening.

Lisa

Debbie,

Sorry your worries are back in such force.

I bumped your Doubling Time / PSA thread so the smart guys can comment.

My take is that since his PSA rise comes at about the time when his testosterone would be expected to start recovering after his HT then he is likely not yet castrate resistant and, possibly, the rapid PSA rise is related to existing cancer responding to the testosterone rather then impossibly rapid growth of the cancer.

We have quite a few members with lung metastases and a number of them seem to be doing quite well.

Hello all......
Just read some of the comments from the thread "How Many Wives Get Depressed". This thread was started back in 2006. Wonder if the original folks are still around and posting.....are you guys around?

Depressed.......yes, I guess you can call it depression, when your life just "stops" when your told that your husband has the big "C", your stomach drops down to your toes and you are speechless. Then the real fun begins, you try to understand all of the terminology that is being thrown at you and then you start to investigate the possibilities (which are numerous, depending on the PC scores, etc.). It's a never ending road until........well I won't go there yet.......

Husband shuts down, and then you want to talk and get some clear picture of what you all are going to do....but there's that barrier..... Oh, sometimes you can talk up to a point, then no more. My husband and myself have gotten a power of attorney set up, tried to do other "stuff", then I tried to get him to complete the Living Will, well that hasn't been completed yet either. It's the finality, the knowledge of the "end", I suppose that he doesn't want to think about. I also think it's giving another person the authority to "end" his life, that is not something he wants to hand over easily.

We were doing better until this new year started. Husband blood counts (platelets 23,000, HCT, HGB 8.9, etc) are extremely low and will have to have a blood and platelet infusion next week. Nurse said, that once you are given a blood transfusion, your body doesn't make as much anymore and starts to depend on the transfusion's, so that is a bit of a worry. Been reading some of the hospice protocols for "end of live" information. Hate it! Husband seems to be doing some of the items that are identified and this is worrisome. Fifteen years, I guess I would expect as much. Oh well...just had to post something.....

Peace, Love and most of all Hope.....

sal

Update:
Blood transfusion on 01/23/2015. Two units of red blood cells. Was told that he should start to fell better in 24 hours. Don't think that he is feeling any better. His vitals are doing fine and so is his weight.
Levels on 01/27/2015 were:
WBC 2.5
HGB 8.2
HCT 24.0
Platelet 21,000

We have two weeks to get his platelet count up to 50,000 or he will not be able to continue on the Xofigo.

Doctor's nurse practitioner doesn't seem to really want to give the platelet's, Says that once you start giving these, the system stops making them and depends on the infusions. Also they only will last 9 to 12 days and then are gone. The Xofigo is killing the platelets as well as the cancer. kinda of a two edged sword. Nurse practitioner says that husband's bone marrow is "tired" from all of the treatments/therapies that husband has gone through. Wants his system to start working again to create the platelets.

He has been having more pain in his arms, legs, neck, skull and back. Headache across the front temple, unusual because he never has a headache. He is going to have a brain MRI and x-rays for the rest of the body, checking to see if there might be some compression fractures, just to be on the safe side. Will go the next day to hear the results.

Husband also has a bad cold, could be sinus, but went to PCP and got a script for an antibiotic along with a over the counter nasal and chest congestion.

He is also so tired of going back and forth to doctor's office, me tooooo......last PSA was 112...but I believe it's higher now.

Peace, Love and HOPE to all!

Wanted to get this thread back up and not get it lost...posted same comments on "Starting Xofigo/Radium223"

sal

That's great Debbie. Almost a "yippee"! Hope the HT gets you back there.

Sal & Ted,
Happy Anniversary! I hope that today brings time for you to remember the good and have hope for tomorrow.
Thinking of you,
Susan

Loudy.....Since I'm not a medical person, I really can't override what his doctor's R recommending. Is he allergic to morphine? That seems to me (again, not a medical person), to be an alternative.

Our latest news was not good. Platelet's still dropping, now it is down to 19,000. Nurse practionaire & medical oncologist suggested a bone marrow biopsy, after a platelet infusion. This test will tell them if it was the Xofigo that is causing the low platelet count, or if the bone marrow is more cancerous & that is where the problem lay's. If it's the Xofigo, just a "rest" may help husbands system to regroup & start creating platelet's. Otherwise, we are on the downside of PC and it will be just a matter of time. There are no clinically proven treatment's for bone marrow cancer & at this time no clinical trial either.

Don't want to do any Phase I or 2 trials, thinking more about "quality of life". Just wanted to update. Will update more on the Xofigo/Radium223 later.

Pease, Love & Hope

Sal

Haven't heard from a lot of the regulars in this department lately. Bumping thread for loving son caring for BOTH mom and dad but wondering how others are doing as well.
Beth