I've been MIA because of duress. I wrote about a week ago and want to thank everyone for their responses.
I'm on overload and in an altered state since we are trying to once again customize my husband's pain management treatment.
He's been on oxycontin and oxycodone along with gabapentin.
We are in at home hospice since we decided not to do Radium 223. After reading about it, his tumors were most likely too large to be effective and in the end, the side effects wouldn't work with my husband's personality.(Tall Allen, thank you for that paper, it was factual with our oncologist concurring).
Here's our dilemma. My husband is 69, diagnosed stage IV back in 2007. This past year the flare of cancer was intense involving his entire spine and pelvic area. He still has his prostate since he was diagnosed stage iv, so the cancer growth within the gland is always risking rectal/bladder involvement. That's one area of discomfort and concern. The other is a spinal cord compression or a spinal fracture, which are both at risk though we've decided, if any of these happen we will sedate to the needed point since he isn't leaving the house. We aren't separating. We had a long run, never long enough, though QOL issues still reign high.
He has an option of methadone coupled with a break through, or fentanyl patch coupled with a breakthrough-possibly liquid morphine. They wanted to use long lasting morphine though, I am not for it at this time.
My husband just wrote a market analysis paper 3 days ago that will be published. He's also collaborating with our grandson to write a music paper for his audiophile club. So, his mind is active and he's still very interested in life. Hospice is giving us a say in what we want to do along with their team of doctors advising.
I have a friend who was a hospice nurse 25 years and we have a doc who are both advising us to lean toward fentanyl with a liquid morphine for breakthrough.
I'm at a real loss for which one to move towards since we want to choose first what he could be most active on. We know it's quite individual. I will ask again for your generosity in some of your experiences.
He wants to be out of pain. And, with the extensive mets, the pain is pretty bad.
Apparently, the hospice pharmacist has a formula when prescribing fentanyl. Your current pain meds have to exceed a certain amount for them to consider prescribing it. We can go with methadone first and then if that doesn't work go to fentanyl. It's experimental like everything else. It all depends on my husband personally. I'm trying to avoid such a trial and error since I don't want to weaken him more.
The nurse is going to contact me tomorrow. I want to be able to say where we are leaning. Also, diazapam btw helped back spasms that were incredibly painful. Hospice usually uses lorazapam Ativan.
Hospice has come a long way. I at first was very concerned about yet another system with their policies, though, their focus is to relieve the anxiety of the family also, along with pain management and support for the patient.
I will appreciate comments. I do know there was a similar topic I put up.. Please forgive this since I'm juggling lots of balls here.
My mother had a fentanyl patch and a morphine pump that she could increase at will. The nice thing about morphine is that it's infinitely titratable - one can always accommodate more as long as it goes up slowly enough. When the pain got pretty constant though and she had no QOL, I think her doctors gave her a larger dose of morphine that ended her life - a blessing she very much wanted. I never pursued the details.
Thank you for that. Hospice has changed a great deal. We have been given the opportunity to use long lasting morphine. We have decided today after an in depth conversation to go with methadone with liquid morphine as a break through.
With any of these long lasting, contin, morphine, methadone, fentanyl patch, they all take a certain number of days to begin to work, accumulating in the body.
In fact, there are pharmacists who will custom make what a patient might do better with in order to maintain alertness/function while managing pain.
From what I was told was the long lasting morphine works great, though because I had a hesitancy, we decided first on methadone. They can give it 3 times a day and vary the dose. The problem with the patch is just that.. it is a patch so it acts as such and can't be moderated like the other two. It is stronger so it allows us the option if needed to go to it if needed.
We will have to see the personal reaction of my husband to then see if this choice is the best for right now. In a compression fracture possibility, we have chosen just to sedate since it just too painful to prolong his life when not slowing down the cancer. It would just be a patch.
I can see other choices for people who have children and other situations where they 'need' to stay as long as they can.
I've learned quite a bit in a very short time. Now it's just implementing one thing, expecting drowsiness until he adapts and see if his pain is managed. There's so much support that we've been given in the last months.
Thank you for responding. I'm sorry about your mother and the pain she endured. In that situation we would choose the same.
I am part of a revolution to help shift the suffering of this death phobic culture. There is so much to learn. There are changes being made.
The challenge of living. The challenge and gifts of loving deeply. Thank You..
I'm glad to hear there has been progress in pain management since my mother's time. Even then, I recall the drowsiness wore off pretty quickly. It sounds like you are making very good, informed decisions. There is just as much science going into the management of the process of dying as went into the management of the disease. Thanks for sharing a glimpse into it.
Thank you for sharing your experiences. I understand how difficult it must be to expend what limited energy you have writing on this board--yet, this info is so important for the rest of us who are facing similar situations.
My husband also has decided to stop trying to suppress the cancer, palliative care only--but it looks like he may be dealing with spinal compression. He really, really doesn't want to have any more scans or tests but at this point I want him to have one last scan so that we can determine if the symptoms he's having are indeed due to compression. QOL.
It's so hard... there's so much pressure to "get the scans! get the tests!" when all we both want is to be together at home, celebrating our last days together and preparing for the end.
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