Any folks have experience with palliative care. I have had MBC for slightly over 5 years and currently taking Faslodex andt recently (4 months ago) added Ibrance. I've been given many painkillers from Tramadol to Oxy and even CBD and Medical Maraj. but all of them make my pain more intense. I'm miserable, alone, no family but working to stay hopeful. I live in a semi rurtal area and can't get pain management but have just heard of palliative care nurse practitioner. Does anyone have any thoughts ,experiences etc. Thanks....I' m scared,lonely and in a lot of pain.My primart care doctor moved away (I was with her 5 years) and my new one left on maternity for6monthso now I just call and wait 2 months for someone don't know.
Any info is soooo appreciated. Thanks.
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sunnyday3
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I am so sorry that your Doctors are unavailable and that the pain medication is not enough. It is a hard time to feel so alone A palliative practitioner sounds like a possible help. My understanding of palliative care is that finding a nurse practitioner does not mean that one is giving in or giving up but finding the most comfortable way to continue on as one is able, as long as one is able. With your present lack of resources and need for pain management it sounds good to see if you can get the care and that you find a right fit for you. I had two wonderful experiences with such care. One with my father and one with a woman I cared deeply for. One was preparing for passing, the other was on his way for another operation. The personal nursing care was welcome and worthwhile in both situations. Feeling for you, and thinking of you tonight with concern and hope you find your way to your care.
I’m so sorry you’re feeling overwhelmed. I wish I had specific advice to offer. Is there a social worker who can help navigate this? Or a pastor, etc.
Have you looked online for information about this option?
If you give more information about what state or region you live in, perhaps another board member can point you in the right direction.
I am sorry for your situation. When I was first diagnosed I was in a lot of pain and was put in touch with the local hospice.A palliative care nurse phoned me regularly and organised meds until I improved. They gave me a 24 hr access number and when I no longer needed this support just told me to contact them whenever I needed help. When my husband had prostate cancer we had a regular visit from a nurse just talking things through. They seem to be able to cut through the lack of communication of the other services.
I've heard only good things about palliative care, and came away thinking that all it really means is you get alot more support! I think you will like it and like Mary said, it doesn't mean you're giving in or giving up and my understanding is you still have control of your treatments, etc. God bless you and make a way for you, and heal you and I ask it in Jesus name, amen. <3 You can email me at thechurchasleftthebuilding@ yahoo.com and I have more information about my treatment that has helped me alot. RSue
I’m sorry that none of the painkillers working and the lack of medical resources. Do you have any oncologist that cover while your physician is on leave? You shouldn’t be alone and have continuous doctor supervision.
As others said, I heard only good things about palliative care and I encourage you to reach out and get help you so desperately need.
I don’t know the location of your mets, but wanted to share that at the time of diagnosis I was in excruciating pain from multiple spine, bone, and lymph node mets as well as 3 compression fractures in a spine. The pain subsided significantly a few months after starting Ibrance. Hope that it’ll happens for you as well. In the meantime, please reach out to whatever local medical reassures are available including palliative care.
Sounds like you are in action to improve your situation. Palliative care is not just for end of life - it is certainly for the things you are experiencing. Keep asking for help loudly..!
If you have access to palliative care I highly recommend it. I was referred to the palliative care unit at my cancer center and they've been wonderful. The range of issues they are able to help with seems endless. Pain, energy, depression, financial ... I had and continue to experience nothing but total support. All the best to you.
I get all my care through Duke and part of their care is access to palliative care if needed or wanted. I have met with a palliative practitioner just to listen and understand what they did and I will say that it may be a great option. They have some really great ideas and techniques for keeping you comfortable under any situation. I am so sorry you are going through this but maybe they can give you some relief. Sending calm and healing thoughts to you.
I have a palliative care doc who is wonderful. She has a lot of experience with cancer patients. She has been extremely helpful. It is so worth it to have palliative care. My advice is to make an appointment with your palliative woman and see what you think.
Thanks so much to all you supportive and kind women. I nneded the boost youygave me. I do have an oncologist and he is trying to help but so far hasn't panned out. The palliative care person may happen and if I can I will see her. I was down yesterday and everything I wrote is true but I "forgot" I do have a good friend here that I hesitate to call on cause she works and has 2 other friends s with serious medical issues.I tried several times getting a counselor but the ones I contacted were booked up, so I will try again. I live in Greene County NY but don't have transportation to get to Albany.You have all brightened my day and your support means so much to me.
Sunnyday, If I am correct Green County is in the Hudson Valley. If that is so then, perhaps these resources are a lead in finding a ride into Albany. Wishing you the stamina to get the services. It can be a struggle to get what we need, but we continue on.. encouraging and supporting each other. Thank you for asking such a pertinent question. Your question with the following answers helped me learn more.
My wife is using palliative care and it has helped her tremendously. Every practice is different and you need to make sure the practitioner(s) are right for you, but I would strongly encourage you to make the call. Our palliative care team understands the interactions, side effects benefits and downsides of my wife’s litany of medications better than any of her other docs, especially the pain meds. They are generally easier to reach than her oncologist and quite frankly they seem to understand quality of life considerations much better than her oncologist. I’m not just speaking of empathy, they have more expertise in this area. Don’t equate palliative care care to hospice, they are very different. Praying this provides you with some needed help and relief.
1) If you are in horrible pain, maybe just go to an emergency room. 2) Also, if you have insurance, call the number on the back of your card and ask for "Concierge Assistance" or ask for a "Case Manager" to be assigned to you. Tell the insurance people that you are being neglected and not getting the care you need.
3) Call your primary care doctor and/or old oncologist's office and report that you are in terrible pain and you need an immediate appointment. Call three times a day, if necessary. If they are still not responsive, file a grievance with your health insurance.
4) Explore palliative care or hospice for sure. All of us who are stage 4 (with metastases anywhere) are officially getting palliative treatment anyway (which is not the same as being officially in hospice). For example, I've been stable on Ibrance 125 and Letrozole 2.5 for over six years....but this is indeed considered "palliative therapy." What I mean is, don't be afraid of the terminology. I am guessing that you need escalated medication or a change of medication. Hugs.
Thanks to all of you wonderful women and the lovely man....you've given me support and helpful info when I felt sort of desparate.I now have a teleheath appointent on Moday with a Palliative doc or PA arranged by Soicial Worker I'm friendly with at my primary care office. She is wonderfiul! I had been reaching out to her but hadn't heard back for days. She wasactually trying to get me help but I didn;t know and felt abandoned by her too.
Everything is exaggerated because my car is being repaired and my friend is overwhelmed etc so getting to the er is complicated...my local hospital has a D rating and the ER I want to go to I would need to drive to because an ambulance won't take me there. Thank you all so much for helping me feel not sooo alone. Hugs to all of you.
I have been in palliative care now here in Brooklyn for two years. Basically, the "package" which is located in the cancer center, comes with a pain management doctor, nutritionist and a psychiatrist. I met with the nutritionist and was not really interested and then with the psychiatrist and again that was not for me. The only helpful one is my pain doctor. I am currently on 5 10/325 percocets per day and 3 300 mg. of gapapentin. They have helped tremendously but the only unfortunate thing is that the percocet seemed to have stopped working rather quickly after a while, but still better to have them than the pain. My onco does not write any pain meds.
Now, they realize that palliative care is best when used in conjunction during treatment. It is not considered an "end of life" program. I am just glad that my pain doctor is nice (she used to work at hospice before coming to the cancer center.) On a personal level, I prefer her to my oncologist. No nurses or anything like that. And no phone calls at home.
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