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

I think I have this new extension thread set up right. Let me know if something is wonky.

Gosh, my heart broke for you reading this, Barb. Yes, these drugs can do a number on him and from what I see in your sig, this has all taken place in a year's time! This is so much for him, for you and for your children to deal with on your own. I'm sure you have support from family and friends but they are not living this every day as you are. It sounds like he is pushing you away to distance himself from the emotional pain he's going through. Even though you recognize that, it must be devastating to hear him say these things.

You are going to his appt with him, right? Does he plan to let the doctor know how depressed he's been? Are you prepared to speak up if he doesn't? Your husband might not like it but it seems like it has to be done. The doctor can prescribe something for him if thats what is needed. There are some men here who have been depressed, got help and were glad they made that decision.
We have kids your age and I so wish there was something I could say to help you. Please let us know how the appointment goes.

Believe me you and your family will be in my thoughts,
Susan


2005 Diagnosed at 63 yo Gleason 4+3
2006 LRP First PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
Post Edited (myman) : 3/30/2015 12:30:03 PM (GMT-6)

Barb,

I could have written that. I swear its so close...

(adding this to the top of this novel in case you don't read the entire thing tonight- one antidepressant that seemed to be perfect with Paul is Wellbutrin. It has fewer of the other side effects and actually can help with energy- several dose increases have been done btw).

What a rollercoaster it has been with Paul. He was diagnosed last May with extensive mets all over too at age 47. Then after first round of chemo he had his GI blockage and all kinds of surgery and complications that nearly killed him. Now its his teeth falling out and his incisional line has a massive hernia just getting worse they won't operate on until something happens. Which then will probably kill him I am sure.

His moods go up and down, or should I say from really really dark place to a not so dark place. Never really up.

A little background- Paul's first wife died after a very long and protracted battle with some type of bone disease, I think aplastic anemia judging from what Paul has shared. It nearly destroyed him. They lost their business and Paul never went back to their home after she passed in it other than once when his friend made him go get some things out of it. His life collapsed and a deep depression set in. I met him 3 years later and he says it changed his life and he finally wanted to live and we had so many plans. Then the effing cancer hit him, right after we moved here to GA over 1,000 miles away from home.....

So he knows what it is like to be in my shoes.... And its killing him.... Little by little.... He has had such dark days and I hate seeing him like this but do all I can. I too told his docs he needed something for depression and anxiety and he is on a couple things for that as well as some for sleep too. Doses have been increased a few times but let me tell you even Friday night was a total meltdown for him and it was bad.

He once wrote me an email in response to a post I found about dying or something and he said what is killing him most is not the pain from the cancer, the surgery and complications, etc.... Nope... its watching me go through this and watching the life be drained from me and my luster and all that being gone.... I will share it with you if you like.

I have a feeling that is why your husband is doing what he is doing. Paul pulled that, to an extreme. I knew why he was doing it and let it go for a while until we had a huge blow out one day and I told him that I was never leaving him, never stopping loving him, never stopping fighting him no matter how darn hard he was going to try to push me away. I told him he could keep it and we could both be miserable or he could shut the h@ll up and we could get on with things because his plan wasn't going to work regardless of what he said or did. I told him the harder he pushed away the more I would fight right back at keeping him and this would be a standoff to the end if he continued.

It worked. He isn't pushing me away anymore but he still has very dark days even now. It seems whenever there may be hope that hope it pulled and taken from us in such cruel ways.

One other thing is the steroids. I am sure your hubby is/was on them with the other meds. Not sure you are aware but they can cause bipolar like symptoms and even psychosis. Look up steroid psychosis, very real thing and manifests in so many different ways. I used to work at a psych facility so I have seen this up close.

We can't be responsible for their moods or feelings, and we can't fool ourselves into thinking we can. We can however be there as much as possible. Watch for signs of trouble and make the call like you did when necessary. You can rally help around you, check into home palliative care (no, its not hospice but comes with a doc, a nurse, a social worker and in some places even a home heath aide). All that helps.

Look to friends and family near and far. Learn to let some things go. Learn some good coping and relaxation techniques and don't neglect your own mental health. I have klonopin on hand for those times I need it and am taking meds for my ADHD for the first time in years now, which helps me stay a little focused. Don't be afraid to ask for something if you need it. You don't have to be strong or brave through all this.... Nobody expects you to be. So don't be hard on yourself either.

One of these days I swear I am going to rent a hotel room just so I can go have a total meltdown an cry myself sick. Just so Paul doesn't have to see it...

One other thing I have done. Tried to give paul things to do..... I got him a guitar... ask him to do dumb chores and errands... etc...

That hubby agreed so willingly is a sign he didn't mean a thing he said..... I promise you....

I am here for you, as are others on here...... We are all in this together and I am rooting for you and your husband....


Krissy

Peter, thanks for keeping this thread going, and Susan, thank you for getting Barb on this thread.
Krissy and Barb..what a hard road you are traveling with your husband having to go through this at a young age and kids at home. Gary often thanks me for standing by him...like I'd have it any other way!
While this disease often feels all encompassing, we have tried to make the best of the good days and I thank God for every day I have with him. You might try planning get-aways...I swear Gary rallied every time we planned a trip. Everyone around me says I'm a rock or a "tough cookie". I hide a lot of my emotions, as I'm sure you do, which is why I turn to people here. What a blessing to know that there are so many wonderful folks to support us. Hang in there, and email me if you'd like.
Beth

Thank you everyone for responding, it really means a lot to me. I think the hardest thing for me to hear was that he has no feelings for our kids. It really scared me! I actually asked him if he thought about harming himself, and he assured me that wasn't the case. He is leaving Saturday to go to his mom's for a week, so it might be a good thing for all of us to get some breathing room.

I will update after his appt late this afternoon and hopefully have a plan of action.

Thanks again everyone and I pray you all have a blessed day.

We saw the doc today and he agreed it is depression and needed some meds. John seems to see depression as a sign of weakness and that it couldn't possibly describe him. I got the meds filled, but I don't know if he is going to take them. When we left the office I asked him what he thought and his response was, He thought I was meddling and needed to stay out of it! He has turned so cold towards me. Of course to the doc he acted like everything was fine and he wasn't having any problems. I know he is hurting and scared, we all are. I truly hope when he comes back from his mom's he will have a new outlook.

Sue- he just had scans done a few weeks ago and everything was stable. I think that is part of the problem, he has some unrealistic expectations. He is expecting the cancer to go away and all the mets to resolve and since it did not, he is devastated and assumes the end is near. Our doc assured him that was not the case. That he still has a lot of living to do. Hopefully it will sink in.

Barb, I meant Cabazitaxil. It is generally tolerated better. Gary also did well with zytiga and was in near remission for almost a year! Since your husband has had several tx options in a short time frame, you might start checking out what clinical trials are coming up. Hang in there!

We are at this moment getting Gary's second injection of DRibbles vaccine and he is feeling really good. It is a phase 1 study and has no funding currently for more patients. Our hope is that it will prove successful and be a treatment for guys like John when he needs it. So let him know new stuff is on the horizon so hang in there!
Beth n Gary

Barb, was just reading about the problems your husband is having. My husband had Taxotere about 3 years ago. He didn't have nose bleeds, but had terrible burning on his hands and neck after each treatment. The doctor said he was probably allergic to the tree that the taxotere is made from. Funny thing was his life occupation was working with trees! They finally prescribed a cream for him to apply on his skin, but after each treatment, he would break out and then his skin would peel like he had had a bad sunburn. It was extremely painful. He went on to take Zytiga after the chemo, but only lasted 1 month because his liver numbers went sky high. He was so hostile that month, I couldn't believe it! With the high liver numbers, the doctor immediately switched him to Xtandi, which has given him good results. His numbers are once again starting to climb though. He was at .26 last October and February .42. He is 68 years old. It is 14 years this month that he had his surgery. The cancer was already out of the gland, but undetectable from any scans until March 2012. He has been on Lupron for 14 years, had radiation and some type of oral medication this entire time!
I wish you the best. I know it is not easy but hopefully your husband will take his antidepressant and will be feeling better when he returns from his mom's.

Wow smo1, I had never heard of a reaction like that in anyone else. Although, the doc said it wasn't completely uncommon. He has only been on the Zytiga about 3 weeks and his blood levels this week were good, including a 3 point psa drop. So, that helped his mood a bit. Hopefully the sunshine in Florida will do him some good as well.

Beth- I will have to look into the DRibble vaccine. I have seen the name thrown around on here, but haven't looked to see what it was. Hope it is doing it's job!!

Hi Ladies!
Barb - glad you're getting some time to take a deep breath and relax a bit. I know you're taking care of the children & house stuff & work but still...it's helpful to have space for a bit. Good to hear your husbands psa has come down some - we'll be looking for more of that!

Sue - It's been 10 days since husbands first Jevtana infusion. Some side effects have been the same as with Docetaxel. The neuropathy in his feet (which never left) has increased, altered taste, shortness of breath, constipation. Disrupted sleep and generally not feeling like himself. These things slow him down very little. I guess my main concern is something happening that would lower his immune system. The info for Jevtana stresses this, referring to the period of time when the blood cell count drops.

Beth - Great news to hear Gary is proceeding with the vaccine and feeling so well! Gosh, thats what we all want - for our men to feel good. All the best with this treatment and I know your positive outlook is a great help to him.

Krissy - Am I the Susan you're speaking of? I would love to go anywhere right now!!! But chemo has us tied down for a while. I hope the trip gives you both a break - you need that.

Sal and Ted - Thinking of you both and hoping to hear from you.

Susan

Sue, He is scheduled for 6 but I believe it was mentioned it could go longer if it's tolerated well. His SE's are improving as of this morning so he is on the upswing. The same type of pattern he experienced while on Docetaxel he has with Jevtana: the infusion, feeling very good the next day, 3 - 5 days of symptoms as described then feeling better. All in all he's doing well and feels the SE's are very tolerable for him. Of course, only a week and a half in so we'll see how it goes. Docetaxel was stopped at after cycle 5 - due to the neuropathy in his feet & hands & edema. While he was on it his CTC went from 16 to 0 and psa from
14.82 to 1.9. But once stopped the cancer became aggressive and went to his liver. So here we are.

I'm certainly watching what your husband is going through as Xofigo may be next for Don. I hope Gary can tolerate the full cycle, I can see you are doing everything possible under tough circumstances to get him what he needs. You are a brave woman, Sue.

I'll keep updating.

Susan