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

Hello All.....too many folks to try to name everyone. Wow, you all have been so sweet and kind with all of your words of encouragement and understanding, I do appreciate them. Thought I'd update on our activities, which includ back and forth trips to doctor's offices and hospital's.

We R again in a "holding pattern", husband is just against hospice because of no blood transfusions approved when in that program. He thinks that he will "snap back", but only a miracle will make that happen. He is so fatigued, lose of appetite(almost non-existent, really), disoriented (probably due to low blood), confused (due to brain lesions & radiation), balance problems, swallowing, breathing, etc. could go on and on, but I believe you all understand and can paint the picture yourself. He was given a steroid, dexamethasone, for the possible swelling of the brain. This med was "the pits" for him, caused him untold problems with indigestion, his esophagus was irritated from the reflux even though he was on a reflux medication. That issue on top of everything else, is enough to send a person "off the edge". He is so concerned with "disappointing" everyone, that is why he continues to "hold on", I believe. Disappointing us, my word, he's been on this journey for fifteen years and has been a remarkable PC patient, husband, father & friend, etc.

He's has about 6 transfusions, platelet's & whole blood, but he hasn't seemed to have gained any positive momentum toward gaining any of his strength back. Anyway,I just wanted everyone to know, that I am not posting much, because we are not on a "treatment plan" per say, we are just kinda "maintaining". We have another transfusion scheduled for in the morning (Tuesday). We were also told that if anything "pops up" that might need surgery or an invasive procedure, it could not be done because of his low blood issues. We will just have to wait until husband decides enough is enough.........

I thought that he could get oxygen due to his labored breathing, & that it also might help with the red blood, but his oxygen level was 98%. So we have "hit" the wall but husband won't admit it.

That's it from me for awhile........please everyone, keep fighting and look for the next breakthrough treatment and go for it.......be strong and diligent on your journey......to a CURE!

Sal

It's good to hear from you, Sal. What a rough road Ted is on and of course, that means you also.
I was thinking how you said Ted doesn't want to disappoint anyone and it struck me how strong his spirit is through all he has endured. He's been at this a long time and he's a brave man to try with everything in him to beat this terrible disease back.
Hopefully, the infusion tomorrow will at least give him some respite in the midst of all of this.
Thank you for letting us know. You do have so many here who care about you.
You both remain in my thoughts,
Susan (myman)

Hi Lisa, Sal, Susan and Kukukajoo,
I have been thinking of you all while we were in Portland getting Gary started on his immunotherapy. It was especially good to see Sal posting, and I hope you continue to check in with us in between infusions and such. Hopefully we can offer some support and comfort while you struggle with the pain and heartache you are going through right now. So hard...
Lisa, what was Frank's PSA? Did you get any tx plans from the medonc? What SE's is he experiencing? Gary has mostly battled nausea and varying levels of pain in affected bones. I have heard that there is a standard Wed evening chat room, but I don't know what time. I'd really like to join in if I can get more info. How about you all?
Beth

Krissy - Great news on your test results...you do NOT need another thing on your plate! Poor Paul - he must be so uncomfortable to say the least. It does sound like the surgeon will be wanting to see him first. Let us know how this goes.

Beejane - I so hope you got continued good news (which we love to hear) on the PSA result.

Beth - Best to Gary as he goes through this trial. Is he on meds for nausea/pain? Would love to be on chat, I don't know time etc. will check here later for info.

To All of you, I carry you with me. Your words mean so much - even when its difficult to talk about you do and what you give to me I cannot get elsewhere. Of course, our families are dealing with this too, but it's not the same. We don't say to them all that we express here. The love, sadness, joy, pain, frustration, fear and loneliness (all of that and more) thats shared here is what gives this thread life. And its added a great deal to mine.

Sal, I hope you can get some sleep. Thinking of you and Ted.

Susan (myman)

Good morning! I don't post on here often, but I do stop by regularly to keep up with everyone. I so appreciate everyone and the support found on this board. There are days when I just want to curl up in a ball because I don't think anyone else has a clue what I am going through, but then I remember you are all here and can relate.
Just a quick update, John went through 11 weekly treatments of chemo and most of the side effects were manageable, however towards the last couple he had some crazy chemo burns on his hands and his nose bleeds were happening more and more often, so the doc decided to stop the chemo a full cycle early. His PSA has stalled at 8. The doc seems happy with the progress, but of course we were expecting more. I think that is one of the hardest parts of this journey, is the hoping and expecting and when reality doesn't match the expectations, it is difficult. He started Zytiga last week, so we will see how things go. We were told to not to use PSA as a measurement of success for at least 2-3 months, so the waiting game continues.
John's pain levels are increasing. It seems to get worse when he gets his Lupron and Xgeve injections, but it has been over a week now since he had those and it is not getting any better. Of course, at home he acts like the pain in unbearable, but when he gets into the doctors office, he completely blows it off as not a big deal. Maybe it is a guy thing or maybe he is scared to admit that it is getting worse. His last scan showed things were stable, but he has so many mets, that I am assuming the pain part of this is inevitable. :(

I could really use some beach therapy right now! Wonder if we could convince insurance to pay for it???

Hope you all have a great day and get to enjoy some sunshine.

Barb

I don't know where it is!!

Sat would be better. Weekdays are insane for me. So busy at work been dropping balls and just tired lately. So much to do here at home and having a hard time keeping from dropping balls. Forgot Paul's MRIs last week, will cost us $50 in no show fees. Stupid tax on me when we are trying to figure out how to finagle other stuff.

Susan,
Know that everyone here understands exactly what you're saying and how you feel. This is a most difficult road we are on.

Thinking of you,
Susan (myman)

Hello,

I just wanted to say how amazing the people are on this thread, and how it continuously inspires us as we work to support my dad's advancing PC. His ADT is now on the verge of stopping to be effective, and we're transitioning to second-line therapies.

I just recently watched this video by Dr. Charles Myers, where he discusses Leukine in combination with Ketoconazole as being effective in a subset of patients after chemotherapy. He's citing studies in the video, which I didn't get a chance to read as of yet. I did find the video interesting however, as it may offer another question that oncologists can be asked about, perhaps an additional option that may work for some folks: /askdrmyers.wordpress.com/2015/03/18/leukine-prostate-cancer/

Arthur

Susan Dave and I are almost in the same identical place. We just got the funding in place for the Jevtana . I have posted under Sue Saddened Wife. I am still not 100% on the jevtana for Dave , we still have 2 treatments left of xofigio and that has helped with legs pain. What to do ? I find we get no clear cut direction. I put the funding in place for the jevtana because in England they stopped all funding for it and as a option at least its a option. My freinds husband just had hiis 25th jevtana treatments and I look at that and I think that is 20 extra months of time that Dave is here with me, My freinds husband has over the course of tje last few mo ths gone to every 4 weeks I stead of every 3. Longer recovery in between treatments. Dave doesn't have alot of soft tissue involvement l LOTS in bon and lots in lymph . PSA HIGH was 3,005 inJan but has come down to 2,295 this month. Please keep me informed on progress with the jevtana. Dave did 6 rounds of docetaxel but it did not work. They do say some men should have had jevtana first as docetaxel does not work for everyone. Our start date for the jevtana would probably be June 9th .. I am very apprecitive of all the insite and knowledge as well as support found here. Good luck to you Sue 💙💙💙

Hi Sue and Susan,
I pray Jevtana will work for both of your hubbies with few side effects. Our medonc thinks it will soon replace docetaxil and is sold on it being superior. Supposedly it is better to let a Ted by most, and that was the case for Gary. He also kept some of his hair! We wish it would have worked longer.Best wishes moving forward. Chat on Sat if you like.
Beth

Tednsal
Hearts and thoughts are being sent to you. Sal I can see how hard this is for you. I live that every day but our progression is not nearly where you are. It takes the srongest Love and willpower to live and see progression day by day. Please keep us informed on you...I was looking for posts from you. Hugs to you and love , I know if ain't easy. All any of us can do is what we do nothing more nothing less cause we know we do it ALL 💙💙 💙