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

We R here...in the cold weather of Tennessee....brrrrrrr, we are trying to thaw out.......
Got moved , but slowly "moving in".........we sure R slower this time than we were ten years ago......but we see what an added 10 years does to your body......
Have a new urologist at Vanderbilt (Dr. Joseph Smith). Ted has had issues with the narrowing or closing of the urethra due to the RA treatments and is having the same problem again. Had a cystoscope on the 23rd back home and has had bladder spasms and blood in his urine ever since. Went to Dr. Smith to establish and he had s previous records and he was not concerned with what was going on. Told Ted that if he was uncomfortable they could do a cystoscopy but if his condition is not that severe, he would opt to see if it will clear up by itself.
Went to see new medical oncologist (Dr. Kenneth Wyman) Vanderbilt Cancer Center. Meeting went well, he seems to be on the "same page" as our established oncologist. Although he was not a proponent of the Provenge treatment. He has not seen enough evidence that it is or has proved itself. He suggests that Ted "take a rest" for awhile, but continue the Xgeva and HT {Trelstar) injections. I asked about starting Zitiga, but he wasn't opposed however, he wasn't thinking in that direction. I mentioned xofigo , but I did not get an positive reaction. I can understand "the rest" but I don't think that the PSA numbers will stay down, even though Ted looks healthy and feels "pretty good", if U can overlook the fatigue and no strength levels. But I agree to the rest.......but concerned as to what to expect with no treatment regimen.

Read everyone's posts and yes, it is hard to deal with this disease, it's torment and it's losses. Some one said, "it is what it is"....and I hated him for saying that, because I hate "what it is and what it does".

Dotson, as the others have said, we don't see your signature to know how you have traveled on this path, so advise is hard to give.....

We will have that bone scan on the 21st with results on the 23rd and will see what established oncologist says about "a rest".....

Thank You for all the kind words. He is off dialysis, his oncologist seems to think he was getting septic when he received an infusion of zometa with his first treatment, sending his caratine to an 11, last checked has dropped to a 4. He still has the port but hopefully will be able to have it removed maybe next week if his levels are still low. He was dx in Nov with bone mets from the neck down, lymph nodes of the pelvic region. Everything else was clear. He started having bad head aches, I have read this is a common side effect from Lupron. He stays nervous, his hands shake. We go back on Feb. 13th for his next treatment and for his PSA to be checked. He stays pale because his hemoglobin stays at 8.4, they say is due t the bone mets. Has anyone had hormonal drugs put your loved ones into partial remission if not full? The hardest thing is I wish I could take his fear. I constantly reassure him we can beat this! Any advice on how to help his energy levels? He stays tired and that scares him. I have been reading on radiation, maybe that would help with the spinal lesions. We are only 3 months into dx. I could only imagine how had this must be on him, I try to think about everything that must go through his mind. I couldn't imagine, he won't attend a support group. He has always been very independent, getting him to dialysis was a battle. I'm actually shocked he has accepted my support and clinginess. I promised him from day one I wouldn't leave his side and now he knows I'm going to be right with him through all of this. I pray for each and everyone of you. Cancer changes everything. I've read he may be grieving right now. I've talked to him about something for depression, he's not interested. I think if he would feel better everything would start to change.

I have been off the boards lately. Trying to keep up with the ever increasing needs of my honey. He is decompensating at a quick pace, which is now leading me to get home health care. We are going to the cancer center tomorrow to discuss possible medication changes, getting his PSA, and me going to see about counseling. I am at the end of my rope, as I have been under the weather with what appears to be shingles. He has fallen twice today, and is becoming increasingly incontinent. I am becoming more clear on needing to get help, because I have little left in the way of coping. I ask for your prayers.

Susan

Hi Susan,

So sorry to hear of your situation. Somewhat new on HW, I've not read much about you and your husband. Hope you get to feeling better and get help with your husband.

You're in my thoughts and prayers.

Dave in Bartlett, TN

Hello everyone,

Please help me prepare for the future.  I appreciate everyone sharing their lives.

My DH was diagnosed with PC about 10 years ago when he was about 48.  He did get a 2nd opinion which confirmed PC with a Gleason of 7, I think.

My DH was scared and followed the doctor's suggestion for a treatment of Lupron and Casodex (chemical castration).  He only took this routine for a few months and then quit.  He is very sorry he did this, thinking the cure has hurt him more than the PC.

It is now 10 years later and he appears fine, we appear fine leading a common life of taking care of ourselves and responsibilities, work around the house, cook & clean, weekly intimacy with the help of Viagra (this really wears him out). 

We do check-in with the GP, Oncologist, Urologist for dianostics, blood-tests, chat, etc. but they don't have anything new to offer but that which has already be approved by the Govt. 

We have had a bone test, MRI and another common-for-PC test (ct scan?) whose name I can't recall.  Yes, the PSA is slowly rising and is now about 140.  We believe the PSA test was not intended as a diagnostic though it is a bio-marker at this point. 

We have discussed the importance of quality-of-life and have decided, no more tests requiring radioactive dyes, etc.  We already know what's going on, pretty much. 

What we don't know is, how to prepare for those last days, when it becomes harder and harder for him to take care of himself, and, for me to take care of him.  We want to plan to stay at home as long as possible.

I would appreciate any information that would help us better plan for that end-stage. 

Thank you.

El

Hello all and I see some new names on this thread....I am sorry to see you here, but you will get "sound" advise and as much support as one can get from a "blog" ...but it has help enlighten me as to the forth coming "pitfalls (side effects) and given me a venue to "vent" sometime.
We did manage to get moved and we might thaw out sometime in April (if we are lucky)........what's this I hear about "global warming"....it was 3 degrees here this morning......I can't find enough clothes to put on. I'm used to taking them off, since we lived in the (not now) "warmer" climate for the last ten years. Oh well, enough complaining...back to business.....
This disease, and I believe, any type of possible terminal disease wreaks havoc on a person's psyche and their emotional well being...and that just is for the caregivers, it's so much worse for the patient. They have to go through all of the therapies, blood draws, pill taking, fatigue levels dropping constantly, energy is non existent, depression sets in, lackluster attitudes, argumentative, frustration with everything, etc. I have watched, just in the last two years, to see my once healthy smiling husband wither away. I am not talking about size, but his personality, his quest for life, he is only the image of himself. Quality of Life, what do you measure for this?
Susan(radsgrrl22) and Pat (Dreamer44).........keep on "keepin on"......get help if you need it........
I see where nhwife, jitters99 are still around.........but they will live on and keep their memories close to their hearts and the hurt will diminish and a smile will form when they remember the good times and not the disease times.
Husband has decided to "rest" for awhile, meaning no therapies, except for the Xgeva and Trelstar. PSA has dropped after 4 sessions to 42.11. Bone scan was positive: "no definite new sites of abnormal radiotracer uptake are visible. Overall, intensity level appears slightly diminished over the previous exam, particularly in the rib area". Would have liked for husband to continue with two more sessions, but the Vanderbilt oncologist "suggested" a "rest"...and husband "jumped on that band wagon". It's his body and I will agree with what he wants to do. He can always go back to the Jevtana if PSA starts to rise again. However, Ted has been having other issues and we made a run to the ER this past Tuesday with severe pain in his right kidney area. Spent 5 hours there and no definitive diagnosis was pronounced. The ureters tubes were swollen, and it was thought that maybe a stone had irritated those areas but the CT did not show any residual effects from a stone. Ted had a cystoscope on the 23rd of December which has left him with blood in his urine and bladder spasms. The urologist at Vanderbilt advised Ted that he will experience this pain and blood for several weeks and not to be alarmed. However, after the trip to the ER, I have made another appointment with the Vanderbilt urologist to see what else could be wrong. I would like for Ted to rest and see if some of my "ole man" will reappear, and maybe we could do a little sightseeing.
Our house in LA (lower Alabama) still has not sold and we keep throwing money into this house, because it is so not up to par with what we were accustom to. It is one of the coldest houses that I have ever lived in,even with weatherstripping around the doors, I still feel that cold air.

Rob...wish Ted would have done as well as you...keep on fighting guy!

Hello and welcome myeverything,
I was a little confused reading your post. Did i understand correctly that your DH will not pursue any of the interventions available for PC? You asked for help to prepare for future, the end stage. As you read through the posts, you will learn that every journey has its own road. Similarities??? Other than the emotional roller coaster, deciding when to stop treatment, when to reach out to hospice, squeezing the best out of his last days.....I don't think I could have "prepared" for these last months. For me, reading the posts from the other caregivers gave me a hint of what was to come. Prepared for the heartbreaking pain and burning tears??? Not! I checked your profile and if you are connected with a hospice organization that should help you find the support you need. Best that you ask your oncologist what to expect medically. I think the physical end stage will be determined by where the PC metastasizes, if kidneys or liver are compromised early or if mostly bone mets.

Radsgrrl, tednsal,
Hope you have a few peaceful weeks as you settle in with treatment changes and outside help. Your time together is so precious. It takes time to write your posts and you may find it cathartic as I do. Just having a few hours each day when your guy seems like the one you fell in love with is an amazing gift.

Our journey is near the end, hospice evaluation on Monday. My honey is tired, his body that of a 90 year old, wasting physically and mentally. He is so thin that my hands can reach my elbows when I hug him. He is very unstable when walking and has had a few falls recently. Last one late at night almost ended in 911 call. Medication no longer reduces the swelling on his feet and he can only wear sandals. Good thing we are in Florida!! Hospice offers support on many levels, and we will need all they can provide.

Prayers and hugs for my fellow caregivers
Pat

Pat and Susan,
I am sorry that your journeys are now requiring hospice, but you couldn't have a better assistance. At least that was our expireience. Just controlling the pain and anxiety was such a relief. Jim didn't have problems falling, thank heavens. His two falls were only after back surgery, which required another back surgery but he finally recovered from that. I pray that you both are allowing hospice to help you as caregivers, so you have more time to spend with your loved ones. I wish I had allowed them to help me with much more than I did.
Although I am moving forward and feel I am healing! it's so very lonely! even with kids and grandkids around every day, they only fill certain portions of your life. The cloudy freezing weather doesn't add much cheer either, thinking it's about time to travel west for sunny warm days. Finally finished past two years of taxes and relieving all the medical treatments and medications Jim tried that didn't work for him, and praying they work for many others. Ladies, take care of yourselves, you are no help to your husbands ill. Mentally I am doing much better than physically. I can not manage to eat much and could care less if I do or don't. Never dreamed I would ever say that! and now it's become a way of life I need to change. Hanging on to Jim's horse in hopes that this spring I will be able to ride and bring myself closer to Jim, he would approve. Ladies, take care of your man, yourself and utilize all the assistance you can get so you have more moments together with no regrets. Stay warm. LuAn

Thank you for the welcome.

Yes, with our many years of professional experience in chiropractic, nutrition, senior care and hospice care plus our recent years of personal PC research, we are not interested in the government controlled pharmaceuticals: radiation treatment, surgeries which, you read, do not have a high cure rate.  It seems that these 'treatments' create a drawn-out dwindling of life in varying degrees with the PC usually returning in 3+ years.   Alternative medicine does not have a guarantee either, but, for the govt. to completely criminalize alternative medicine is to limit the options for success.  I believe, it's because of money and lobbyists.

Because of our personal experience and research, we use the doctors for diagnostic tests and questions regarding the newest techniques but remember, doctors are usually taught about equipment & meds by the people that are selling them.  We question the doctors at ever step, some like it and some don't.  But, he's still here after 10 years. 

Another story, my mother was diagnosed with a congenital heart problem at age 72.  The doctor recommended immediate surgery saying she was a perfect candidate with good weight, good BP, and, she probably wouldn't live another 3 months.  My mother said 'hell' no to surgery.  She lived another 13 years and moved in with me the last 2 years of her life.   My DH has a similar story with his own parents and these experiences have greatly influenced what we are doing with his PC.

I do a lot of research on clinical trials on pubmed.com.  Excuse me if I shouldn't post the site but, if I may, it is the site that reports clinical trials and is an excellence source of information.

As I said, my DH was diagnosed over 10 yrs. ago and did try a few months of Lupron/Cadex within the first year but decided to quit after about 6 months of treatments.  He wishes he would not have done those treatments because they have scared him in their own way but he is still here and, as I said, doing well-enough.

My hospice experience tends to be in facilities so I see that method of care and that is not what I want for my loved-ones.  And, I lack the first-hand experience of working with families in their own homes that's another reason I'm here, to hear about your stories.

So far, we are planning on palliative care and morphine for pain and will be looking for a doctor that will work with us and our wishes when things get more serious.  We know he will only get worse and are trying to get everything in order, now, our wishes/lifestyle/ preparing the house for a lifestyle that might include hospice care, etc.  I am coming here to hear the stories of people who have lived through this, the end.  What was a surprise?  What would you do differently or recommend to me.  I'm looking for local classes.

Please feel free to ask me anything, I hope I have something to share.

I am very grateful for your stories and your advice.  My heart goes out to everyone.

 

My husbands in home hospice care was everything we had hoped for. In a hospice facility was not an option for us, well at least one that we didn't want unless absolutely necessary. Having a hospital bed in the home was not something we wanted either, again, unless it was the only way to handle his care. It was not, and he was only unresponsive the last few hours. Nurse care, social worker visits, and in home assistance for me was great, only wish I had allowed home assistance more access to allow me more time with Jim. Had a nurse come in a couple of times so I could get away to one of the grandkids events! and while I enjoyed the events you still worry, that's just a caregiver. Pain and nausea were completely controlled with medication and we both felt like he was in control of the amount of medication necessary. I had only 2 issues.. One was hospice did not give us the medication, be it patch or drops, used to dry up secretions that are produced at the end of life. My husband could have been a rare example, his PC was a rare very agressive beast from the very beginning, so were his secretions. While explained to me on the phone, this was in no way painful for him, it was terrifying for me, to say the least. Holiday, no pharmacy open, they should have brought the medication to our home. Things have been changed with this management, and I am assured it will not happen to any patient again, and I trust and believe it will not.
2nd and just as upsetting to me, is the feeling of abandonment after his life was over. Of course, the normal condolence phone call from pertinent individuals, and the pick up of medical equipment, wheelchairs etc., left over medications, and a sympathy card...I think. While I understand life goes oh! death has happened! more patients to care for! just not what I expected. Actually not sure what I expected! but what I felt was not warm and fuzzy. I guess that is what grief support groups are for. My husband length with hospice care was 2 1/2 months, and it was a very BUSY 2 1/2 months. He did more exhausting outings in that time than the prior 6 months before. Fishing, had to catch one l last fish, even a hot air balloon ride a week before he passed and none of this would have been possible without hospice care, especially the nurse coming at 11pm after his balloon crashed. Can't change a thing. Thinking I might even volunteer for hospice after I recover mentally and do a little traveling with friends. Jim felt his best when all PC treatment was stopped, his decision, his way. Only non responsive at most 12 hours. I would pray everyone's end be as peaceful with the loved ones you want as close as we were.
LuAn

nhwife and jitters,
I so appreciate your continuing to share your experiences. I try to stay in the moment, day to day and you have added volumes to what I know about end of life care. I have promised myself to ask for help, let Hospice carry some of the load and you are encouraging me to follow that path. Thank you! It helps to know too that you are moving on, no matter how difficult, holding on to the memories (and living reminders like his horse). I try to push the questions about "after" out of my mind but imagine I will feel very empty, missing his warm kisses, hugs, smiles, gestures, faces (almost like a rubber mask). He's so tired now that I feel like I have lost much of what he was. I wonder now how much of his mental decline is from the brain radiation last January the relieve the pressure on his brain from the skull mets. The RO said to expect earlier onset dementia thinking however that the PC would end his life before the dementia would be noticeable. While I expected his appetite to decrease, I did not expect that he would have difficulty swallowing almost everything, even fluids. Hospice nurse said that the swallowing muscles start to fail and that causes the coughing or choking sensations that he gets. He's using the walker now most of the time, rarely cane. I happy about that since he is more stable. His feet and legs are huge, must have at least 10 lbs of fluid in each. Imagine walking with no sense of feeling in your feet and carrying 10 lb weights on your ankles. He fluid intake is very low, so I'll be asking his oncol next week about balancing the diuretics, swelling, fluid intake...He will have his bloodwork tomorrow. Instead of having Hospice draw at home, he can still get dressed and out if he has to. At least it will get him out of the house for a few hours, if weather is nice maybe stop at our favorite beach parking lot.
We solved another problem with him falling and not having his phone with him. While he could contract for the emergency service device to alert them when he falls and I am not with him, we found an alternative. As long as he is conscious....he is now keeping his cell phone in one of the travel type pouches around his waist and the phone for non-911 emergency number is programmed on the phone. I'm also keeping my phone in a pouch I wear all of the time in case he is outside and has a fall. It seemed silly to have the benefit of a cell phone but not have the cell phone with him when he needed it. I think my point in this rambling is that we just don't know what to expect, what will happen and are only prepared after the fact. I've learned so much from the other caregivers and hope I can give back for those on the road behind me.
Keeping all of you in my prayers
Pat

Well Dream 44,

You really have captured a lot of what I am dealing with, and feeling. My guy is still getting treatment, but is having a lot of pain, and fluid in his legs. He is also dealing with come cognitive decline that appears to be from the amount of painkiller that he is on, but now I am beginning to wonder if he is just losing it. I have finally gotten his son to come in twice a week, because I can not leave him alone for period of time. He starts cooking stuff on the stove, and forgets it. I feel terrible telling a grown man not to cook while I am out. He doesn't pay attention to that. I am also going to call a home health care person that a couple I know uses. It is a very lonely existence. My frustration level is high, as is his. It is so hard to see him slipping a way, and my anger has been festering. I started therapy today. The therapist's wife has stage 4 breast cancer. UGH!

Susan

Cathy, and all
I'm happy to know your hubby is doing well and has some good days.

I read the other posts about the Zero club guys, success stories with treatments, improvements after surgery, new drugs in pipeline, and I want to cheer. I remember how excited we were when one of my babe's treatments was working. We had so many years with only HT, although that does a number on the whole body. Years ago, the urol oncol at a local cancer hospital said he was not sick enough to get the other treatments or to even qualify for clinical trials. Now thankfully PC guys can sometimes join the trials or use the newest meds even if they are not hormone resistant. I wonder how his journey may have changed if he could have had provenge when the PSA was climbing and the scans were inconclusive. Trying other HT's (originally Lupron) only delayed more aggressive therapy. I don't dwell on what was, enough to deal with what is today.

The flip side-- don't know if other caregivers have shared this feeling-- is that we made it to the finish line, passed all of the checkpoints, used all of the conventional therapies available. He has run the marathon. It's almost a weight lifted that he is done with the drugs. Not that this stage is any easier! but it is different. While he is sleeping much of the day, we do have a few moments to chat. He said the cancer seems to be taking all of his energy. He has accepted that his time is short. One appt with oncol next week and hair cut if he can get out of the house. He wants to see his favorite nurses one last time! If not, Hospice nurse will be here. It's enough to keep him comfortable.

His birthday is tomorrow and I found a beautiful card. Adding my own sentiments was easier than I thought.... that he will caress me with his angel wings. Keeping it simple, since he is having more difficulty swallowing anything other than liquid or puree.
Praying that his angels help him on his last ride.
Pat