Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc.

Pat, I so hear you. In all honesty, I'm here for whatever reason you may need me.

Darn.....ugh I feel what you're going through.

Hugs to all,
Cathy

Radsgrrl (Susan),

You can vent any time you want. It is difficult seeing our men have a tough time of it and yet their mindset is very strong. Mine has rods in his back because the mets ate up 4 vertebrae, he was paralyzed at one point, but can walk now with a walker. It sure isn't easy and it's why we are fortunate to have this thread.

To everyone {hugs}

Cathy

Susan, radsgrrl,
When you vent here, you will find a chorus of caregivers supporting you. We DO understand and are walking your path, some of us with more difficulty or less, does not matter. We are here for each other. And totally surprising for me, Mark has had 2 days with much better appetite. He actually is alert in the mornings, but by afternoon, long, long naps. I have heard that in late stages, some CA patients get a second wind. I will enjoy every positive minute and every dish I wash!

I too believe the intimacy you feel from caregiving is unlike any other. To be so careful with the pressure of your touch so its comforting but not painful for your love is one example of that. No words need to be spoken, you can feel what is good for your partner.

Enjoylife, Cathy, I didn't know he had been paralyzed from the bone mets and surgeries. Amazing that with all of the PC meds he has recovered enough mobility to use a walker.

At our last oncol visit, I said that Mark had run a marathon. He and the other late stage guys have "hit the wall" in runners' lingo. Not once but every day. The months when the PC was controlled was simply the training for this last marathon. Mark had been a competitive skier years ago and his will to win was so strong. He never made olympic level competition, yet he and the other PC guys deserve Gold medals.

I have moments when I feel a sense of peace, that I am here for my guy. Some comfort too that I can be by his side. I had days when I was so impatient with him, frustrated that he seemed secretive, angry that he resisted the idea of hospice palliative care for so long. When I lay next to him, holding his hand, or maybe rubbing his head, all of that evaporates and I am filled with love for him.

I have not looked for caregiver threads at the other illnesses on HW, but I hope that other caregivers can benefit from the courageous lives that are lived in the PC world. Perhaps the moderators could devise links for caregivers throughout the HW community.

Prayers for all
Pat

Mark's last PSA was 1500

Pat,
I remember the days when I would follow the PSA so closely and now I don't even pay much attention to it. Most of the focus is on pain relief now. Boy, how things have changed.
Did Mark get any relief from the Xofigo at all? Seems like he had a good response from the Xtandi. I'm not sure Bob will have any response from Xtandi because he was on ARN-509 which is very similar to Xtandi. Do you mind sharing when you knew it was time to call in Hospice? I just hope and pray that we will get to enjoy this spring together.
Our roads are similar so I certainly understand everything you have said. I too feel a sense of peace and comfort knowing that I am by Bob's side.
Blessings to you and Mark - you're in my prayers.
Zimac

Hi Susan, I totally understand. I had a hard time getting John to drink water for a long time and ended up taking him to Emerge 3 times in sad shape. He had an IV and perked right up again. His Pain/Palliative doc stressed that no matter how bad he feels, that he will feel a whole lot worse if he doesn't drink. I think he now is "getting it" and doing better.

As for the cognitive decline, what drugs is your husband on that could be affecting him? Confusion could be from other causes...age-related dementia for example. It is also a long term side effect of chemo if he has had that. I am seeing some cognitive decline in John too. And confusion at times. I remember my parents in their late years.

How do I deal with it? Yes, I initially am frustrated but then quickly realize that it is beyond his control....and beyond my control. It is what it is.

Are you getting out? I am not getting out to do anything rejuvenating but must find a way to do so.

Hang in there. Ann

Hi El, I am sorry to hear of your medical problems. Is this because you don't have insurance? I know there are many fine oncologists in the LA area.

We too went the alternative route for many years and had good results for a long while. BUT with a PSA of 167 you must take action now. I followed for years a group for natural treatments for prostate cancer on Yahoo. None there would be comfortable with a PSA of 167.

No one likes Lupron etc but your guy is too young to let the cancer take off. FYI: Sometimes keto will work for awhile although we did not find so. There are many other drugs and many guys will do well and live a long time with these treatments. My guy had brachytherapy in 2000. He is still here albeit with some serious problems. However there are still possibilities.

Yes, you are on the same road as the rest of us. You need to take decisive action, IMO. Is there any way you can find better medical care? All the best, Oci

Dreamer44,

Thinking about you and hoping your day was peaceful. I know your hands are full but please know that you are both in my thoughts and prayers.

Chris

Gizzy, you are such a sweetie to think of us. Happy Valentines Day to you too!

Dreamer, Pat, thinking of you.

To All: {HUGS}

Cathy

Gizzy, thanks for thinking of us caregivers. Valentines day was very special for us this year.

Susan, good to know you are getting some help too. Hospice has been good for us, home health a few times a week, plus the nurses are great. They know the tricks to make the caregiving easier on both of us, even just moving from chair to chair. Very similar progression, with the weakness, possible brain involvement. There are knobs on his skull and well as other bones that are probably PC, even with the 3 Xofigo injections. Fluid retention is very bad and seepage for about 2 weeks now. One of the caregivers had mentioned that the seepage had surprised her during her husbands last days. Just one of many tidbits that has helped me. More enlarged lymph glands too. I wrap his legs, lotion his body where the skin is deteriorating, replace the bedsore patches, all with a loving touch. Sure the nurses can do this, but they are not here every day. The 24/7 care will come soon enough, for now I'll enjoy my private time with my babe.

There are no words to describe how sad I am to see my strong, intelligent, vibrant, carefree, somewhat reckless at times, loving honey struggle to get through the day. Simple things we take for granted like putting your feet in your PJ's, or slipping your arms into a jacket are not so easy for our guys in their last days. My prayers ask his special angels to guide him in his journey to the end. Hard to stay away from the religious comments, when I find significant comfort in prayer.

Pat

Jitters,

Thanks so much for the update. Sounds like you had your hands full with the passing of your friends daughter. So kind of you to help and do so much for your friend when you are still dealing with your own raw feelings after Jim's passing. Maybe in some way it is helping you with your own healing.

I think it's so wonderful that you will be taking some time off to enjoy some sun and fun in Belize. I am sure your drink on the beach with Jim will be emotional but certainly soothing for the soul. What better way to spend the cold winter months. It's been one heck of a winter with all the snow we have been getting.

Right now the road for us is pretty tough. Still hoping and praying for a better day.

Again, thanks for keeping us posted and for praying for our peace and strength. We can use all the prayers we can get.

Zimac

Hi Susan: I just wanted to let you know my experience. My husband had his legs go out from under him, just had no leg strength and after that it seemed he lost most of his mobility from the waist down. He also was incontinent after that. In his case he wore depends because he just didn't have any control. It sounds like your husband is going through the same thing as mine did.
Only if you like we can correspond. I know what your are going through and if I can help with any questions let me know.

Hi: the pads did help, but I had forgotten the hospital also put a catheter in as it helped with him not getting sore from being wet. His skin was quite sensitive. The catheter worked well, but did have issues with it plugging so the nurses had to keep a close watch on it.

Susan,

Zimac mention the Texas catheter. about two years ago, I was a caregiver for a 92 year old man. He was in the hospital and they used a Texas catheter, but, he kept pulling on it and was very hard to keep on (guess it was very uncomfortable on him)! Maybe they have improved since then.

Hope everything works out for you and your husband. You're in my thoughts and prayers.

Dave in Bartlett, TN