Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 5)

Sue,

I am so sorry to see this news! My heart and prayers are going out to both you and Dave. Stay strong!

Barb

Thank Susan for kind thoughts. Oncologist appt tomorrow and will see what his thoughts are for the completion of xofigio and when to go to next option.
Might have to adress another problem as still bleeding from urethascope done 2 weeks ago now. Will see what oncologist thinks of finger cluster of cancer cells reaching for bladder I don't see why we would wait for invasion of bladder. I wished many times that cancerous useless prostate could have been removed. I look at it who needs it and what QOL are they worried about.
Like we've got that? He is already dependant on depends any time we go any where.

Found this thread on Page 7...the PC forum has been so busy it's easy to drop off the first few pages.

GATOR 92 - I hope things have worked out for the good. Thinking of you.

Sal - Your in our thoughts.

Hello All.....
Haven't posted lately because there isn't much going on with us anymore. Since hospice started 04/03/2015, our journey has slowed down tremendously. I don't know what I expected with "hospice" but I guess it's what it's suppose to be, just a "comfort care" program. It doesn't diminish the patient's withering away progress that your eyes see everyday. The weaker and weaker the patient gets, the less and less food & liquid intake he consumes, the more he sleeps (which is good for the patient, but not the caregiver), the more and more assistance you have to help the patient with, bathroom, bathing drinking, etc. Conversation's are almost non-existent, his thoughts are muddled, and he can't rationalize what day it is or what he did or is suppose to do that day. Need I say more, it is so mind boggling what this disease or any disease for that matter does to a human being...why? I feel so inadequate now, not investigating or researching for an alternative program. All I can and do is sit and watch my man "fade away", and this is not what I want to remember later on. I still want to remember that vibrant man, sailing, fishing, grilling out, walking the beaches as he prays to our Lord, playing pitch with the grand kids, cutting the grass, yes these are trivial things, but they are the every day activities that he no longer can do and it hurts, him and me to know that he no longer has the capabilities to ever do these activities again in this life.

Yes, we still get up every morning, him not as early as me, but we still try to maintain some sort daily routine. I can't leave him, unless he absolutely promises he will not try to get up and do something by himself because his legs and his body are too weak and he could fall. He has lost forty pounds, which is a lot but he was overweight to start with. However, if he mentions anything at all that he might want to eat, off I go to get it from the store or fast food restaurant and he might eat a bite or two, and that's wonderful.

I don't know if the Xofigo was his downfall, at first it was almost like a miracle drug, turned him around 180 degrees, but it also killed his bone marrow,or the cancer did. All of the drugs/treatments that our guys take are two edged swords, they take and they give, they help for awhile and then you start back at ground zero again. Don't get me wrong, I would go down these same avenue's as we did, because he did survive a lot longer than the statistics provided, but at what cost and whose's. He has waged war, and suffered for so long battling this disease and here we are........almost lifeless and empty.

I didn't want to write this much but just got started and couldn't stop. I have some good days when I don't cry, and days when that's about all I do. Especially when I hold him in my arms, and straighten his clothes when I help him lay down in bed. Like right now when I write these thoughts down, and remember when.....
I am not enjoying these finals months, weeks, days of life with my man, because he can't communicate his thoughts clearly and our conversations are minimal and watching his decline is not something anyone would enjoy seeing, I am sure. I feel guilty saying this but that is the honest part of me, and who could enjoy watching this disease consume another person, let alone it be your partner in life of fifty one years.

I've received a couple of e-mails from you guys, checking up on me and I truly appreciate your thoughts. You have to be strong and persistent with dealing with everyone in the medical field, and continue to research and investigate, because I know there is a "cure" out there and one of these days, it's going to happen and all of you will benefit and "come back" from this journey and be a survivor.....it just hasn't happened during our journey.

Peace, Love and HOPE to all of you!

sal

Susan ; how is Don doing post jevtana? Bloodwork for Dave today and not sure what they are waiting for with labs as I would have thought platelets over 50 would have allowed xofigio #5 to proceed. Hoping the neuropathy doesn't worsen with the jevtana. A very good freind of mines hubby just had his 25th jevtana treatment. He seems to be maintaining very well all things considering.
I really think all of us braver and have to be more than what we ever thought we would be. Right now there just isn't anything that Dave can do. That breaks my heart because he is restricted by the cancer to a life similar to some 90 year olds. He used to be a fire ball of energy, and like everyone here it is harder to do it all , I try!! Today there is no worry for outside there are snowflakes mixed in with the freezing cold wind! So poor Dave is frozen to the bone!
Shortness of breath continues on and I would sell my soul to have Dave not be like this! Cancer and life as we knew it game changers. It does at times get hard to stay possitive. I for 1 never know what to say when people ask how Dave is . I hate lying by saying he's fine .If its someone I don't know that well I say he just doing treatments. I wonder what life was before all this...I think we are guilty of taking our lives for granted. Dave and I are more than guilty ogf that because in 43 years I think Dave only had at most a prescription less than 4 times with a bad back and myself I had strep throat once and the only meds I ever took was birth control pills. Dave was the kind that never once had the flu or suffered even with a common cold....Then along came PC!

Hi Everyone I had to join this discussion because today I feel like some of you have posted.  My husband had 3 treatments of Docetaxel and had to switch to Jevtana because Docetaxel was not working. He is ready to give up. Oncologist gave him extra medications for fatigue/ nausea/ low wbc and low rbc with his treatment tue and today he said he is still so sick he just has to go to bed. He said what a waste of all those drugs to still be sick. He does not want to put anything in his stomach because he will vomit.  His psa has come down from 597 to 99 but he feels the treatment is worse than the cancer. Life sometimes is not fun.  Carol

Sal, Thank you for the update. To read what Ted and you are working through right now is difficult and your honesty is appreciated. I can see how lost you're feeling to go from doing all of those things that helped you both: the research, the phone calls, dealing with doctors and posting here, the daily things that brought you purpose and gave some kind of order to dealing with this hateful disease. Thats another aspect that has a big effect on you. Your description of Ted doing the things he loved included him walking on the beach and praying to the Lord. You two have been a part of each others lives for so long and shared so much I sincerely hope that this time together, too, is blessed.

As you always wish for all of us
Peace, Love and HOPE to you both,
Susan

I know what you are saying.  When they are sick it is negative when they are feeling better the world looks better.  It is hard because I never know if his problems are side effects from chemo or cancer acting up or something just talking to us. I say do you want me to call the oncologist and he says no way they will just sent me to ER.  The oncologist can not treat you over the phone and lab test will help see what is wrong.  Being sick effects so many aspects of your life physical health, spiritual health, familys, finicial. Keeping it all in balance is impossible.  Carol

Sue - Sorry to hear dave has such a difficult time with breathing. That certainly curtails what one can do without having to rest every few minutes. My husband too, was very healthy until his diagnosis - he was on no meds and troubled only by a bad knee. He says he believes the treatments for pc is what has made him feel sick. And he worked until the second Docetaxel infusion last August. He would've gone back this spring if he hadn't started Jevtana. He's always been very active, keeping himself busy with work, fishing and hobbies...one of his favorite hobbies is our grandchildren! So right now he's just beginning to feel better and I think we've figured out this constipation and how to keep things moving. That's been his biggest problem. Gotta feel better for cycle #3. Don's neuropathy started on the Docetaxel and continues on Jevtana but he says it's not gotten worse. His Dr said he may have it permanently. His hair grew back after Docetaxel (he lost it 2 weeks in) and it continues to grow on Jevtana. Sue, I hope you get the go ahead for Dave to get the next Xofigo soon and things improve.

Hi Carol, I see you, too have a full plate. I understand your husbands feelings and as you can see many of us here have faced that with our partners at one time or another. When the one you love is feeling despair its so difficult to be encouraging and yet we still try. My husband is on the same treatment as yours. On calling the Onc - Dons reply is the same but he does email him and gets a quick response. On keeping things in balance...what is balance anymore? Just kidding a bit. I can say you'll get support and helpful advice here because we understand what each one of us are going through. It's good you're here.

Krissy, Hello to you, too! Your another one with an overflowing plate - hope things will ease up for you this week.

Susan

Good Morning ladies,

I want you to know you are all my heroes! We all have to give up so much for those we love and cancer is an evil opponent. It has taken its toll at my house. I mentioned a few weeks ago how rough things were for John and it has only gotten worse. He has decided he is filing for divorce and no longer wants to be a part of my life or the life of his kids. Apparently his old high school girlfriend is a better match for him and somehow he thinks she will make him happy.

So, I am not sure how much I will be on this board in the future, but I am thinking and praying for all of you as you go through this journey. May God give you peace and comfort during this time.

Barb

Barb,
I am touched by your post and just can't imagine how you're dealing with this latest development. How are your children doing? Wishing you the comfort and peace that you graciously wished for the rest of the group.
Beth

Barb he must have had his brain cells damaged from treatments. Does the stupid fling know whats going to be involved In looking after him long term? Does she know that he has PC . If he has life insurance is she a gold digger? Well hopefully he comes to his senses! It makes me feel very sad for your children as illness is enough to deal with let alone this! What is it with other women wanting another womans husband? Well hopefully he realises what he is giving up before you find someone else for yourself. 💙💙💙

You guys are awesome and just what I needed. I have gone into momma bear mode to protect my family! His ex has been an issue our entire life, but it wasn't a few months ago when I think it turned into something more. Of course, she just happens to be a nurse, so who better to take care of him! He does have a life insurance policy, but my attorney has assured me that any judge will make sure it stays in my name. He did try to empty one of our bank accounts, but I found out and took care of that!

I have no doubt that between the Lupron depleting his testosterone, the chemo destroying his frontal lobe and the daily prednisone making him just unbearable, it is a recipe for disaster. However, he had the choice to get help and make the best of it and since he did not, now I have to take control and look after my kids. I have gotten passed the feeling sorry for him stage and moved on to the quite pissed off stage and as you all know, there is nothing like a pissed of momma!!! :)