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Does these side effects sound familiar to any one???please..

JackieA
Posts: 150
Joined: Mar 2011

Many of you have watched your love ones suffer with side effects. Can you help me identify this? Everyday my husband gets weaker and weaker. I thought that he was getting better. I may sound desperate. I am sorry.
He has stage iv bc with bone mets-all of his bones. He had a recurrence in 2009. Since then he has lost about 100 lbs. He is now on a walker. He no longer drives because he can't stand. He has lost the feelings in his hand...severe neurapathy. He has had some respiratory problems for about 7 months, drainage, sinus. It hurts to cough-he can't bring any phlegm up, hoarse-his bones hurts so that he can't ride in a car. Every day----every day! he feels horrible. Stays in bed all day. He is on 8 mg of dilaudid, 75 mg of fentanyl. We have had the drugs increased twice in the last few months. Not much of an appetite.
I think I have told you all by story, so I sound like a broken record. I am looking for someone that has watched this.
I am going to be blunt...I know God is in control, but I am a realist. does it sound like my husband is nearing...or is this just how chemo does a person? Can you share your experience as a caregiver if you have been here? I need someone to walk me through this.

Noellesmom
Posts: 1306
Joined: Aug 2010

You say you had the pain meds increased - did you see the doctor?

I would say it is time to the doctor again. You need to find out what is going on.

Tolerance to pain medication does happen and that's why constant review is required.

And I'm sorry if you've told us, Jackie, but is your husband on hospice care? Remember, it does not have to be just for end of life care.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Mom quit treatment in August because there was such a slim chance that it would help, and after two chemo regimens in two years she had had enough. Now we have hospice and her 24 hour morphine is 120-160 mg, depending on the day. She uses a walker but we watch her all the time anyway. Primary ovarian cancer with mets to lungs and bones, and it looks like every lymph node in her right leg is thoroughly invaded, very painful.

By hospice standards, any pain/discomfort level above a 5 (on a scale of one to 10) is unacceptable. Our daily goal is a 3-4, which we hit during several intervals during the day. Mom has increasing confusion and decreasing bowel control, which our hospice nurse thinks is due to metastatic activity in the brain.

I know this sounds bad, but Mom is pretty accepting of everything, has lots of visitors, and comes and goes out of her blue moods. I think you could do much better in terms of pain management if not through hospice, through a palliative care doc if you can find one.

Good luck, hon. It's a nightmare.

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hi Jackie and welcome. We are always here for you to lean on. I agree with the others. It is time to call in hospice. I believe he is nearing the end. Hospice will help you to understand what is going on. They will know what kind and how much pain med to give him. Learning info from hospice will help you feel so much better. Do not do this alone, get help. Keep in touch.
Tina in Va

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Jackie,

Starting in September my husband started staying in bed moreso. I use to take down the times he was up. Some days he would be up for a total of 5 hours and others only 1/2 hour during a 24 hour period. He was eating very little in the beginning of October, mainly oatmeal in the morning and 2 glucerna shakes for dinner. In the middle of October while in bed he got up (before I could get in there) to go to the bathroom and fell. I wasn't fast enough to catch him. I got him propped back up on the bed (we have a waterbed) and grabbed the urinal. As stubborned as he is he wanted to hold it and dropped it. Ended up all over the floor and he was still going. Noticed that he also had wet the bed and it needed to be changed. He had no strength to stand and was in tremendous pain. I ended up calling the hospice nurse for help getting him into the living room on a queen size blow up mattress. He refused a hospital bed. Once he was in the living room, he stopped eating (this was October 18th). He did still drink water through a straw but was having a hard time doing so. He was on 3 ml of liquid morphine every two hours and 10 mg (crushed up because he couldn't swallow pills anymore) of methadone every eight hours. Since that day I slept on the couch next to him. His last days he couldn't drink through a straw anymore, too weak, so I gave him his liquid through the morphine syringe. My husband never took chemo, only had radiation and that ended in June. I would have to move him when he would have to go pee. Never had a bowel movement. Actually last one was the beginning of October. A few days before he passed he was in need of a catheter because he lost control of his bladder and it was hard on me and him being in so much pain, to keep changing the sheets. The night before he passed he finally agreed to a hospital bed and wasn't in it much more than 15 hours.

Sorry to be so blunt but this was my experience. Cancer is a terrible thing and to watch a loved one go through what they do is very heartbreaking. I miss my husband terribly and I wish that this evil Cancer just didn't exist!!!!

I pray for you and your husband. You are right God is in control. I agree with Tina, time to get hospice in there if you don't already. My husband was on hospice since May and they were a big help!

~Kelly
wife of Mark Scoville RIP 11/14/11 NSCLC with mets

JackieA
Posts: 150
Joined: Mar 2011

ok. Pain is increasing. Check out this scenerio. We manage to go to church this past Sunday. He was doped up of course, but made it. Then we get home and he tells me that Our church is not big enough for his funeral. Just out of the blue. He said lets face it, I am dying. I did not know what to say. Then a couple of days later he told me he asked my brother in law if he mind cutting dead peoples hair. He said my brother in law did not realize what he was asking. He was actually asking him would he cut his hair when he dies.

My husband will not let me call hospice. He is not ready I guess.

Thank you all so much. You have been a great support.

Noellesmom
Posts: 1306
Joined: Aug 2010

Jackie, he may never be ready for you to call hospice. Is it his wish to die at home or in the hospital? There are questions that need to be answered and now is the time to ask them.

Please call a local hospice group or visit their website and ask for a list of things you need to be doing and addressing. It will help you get and keep a focus if things get more rough.

I am sorry you and your husband find yourselves at this stage.

Hugs.

MomhasStage4EC's picture
MomhasStage4EC
Posts: 39
Joined: Jul 2011

This is tough because you dont want to over medicate either because then its like they are not even them anymore. My mother had a Palliative care doctor and a hospice team. My mother wanted to be as pain free as possible with awareness....what good is it to be pain free if you dont even know who you are? Palliative care doctors can do a great job managing a happy medium. God bless and good luck!

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