I’m on hospice - anyone else?

Hi!
Many know about me, but I would like to connect with others in my situation.
After being on pill treatments since 2019, I was told Enhertu. I gave it two tries, decided I did not want any infusions, chemo or otherwise, and chose to stop treatment. My last treatment was September 12, 2024. Enhertu had me feeling the worst I’ve ever felt.
I waited a few months and went on hospice on December 9, 2024.
I am doing well with symptom management because of hospice. I have issues but not really any pain, except my hips, and a lot of fatigue but not to the point of sleeping all day at this point.
I’m very appreciative for the time off treatment, and to be honest, very surprised that I’ve been off treatment for eight months.
My team thinks I will be one who does well and then will take a nose dive pretty quickly when things start to get worse.
I would like to connect with anyone else who chose, like me, to stop going to doctors and live what time they have left off treatment and are doing okay at this point.
Anyone else?
Comments
-
@kbl. I remember you from the Enhertu board. I just had my fourth treatment and I am doing well. I had to have my port replaced and I'm dealing with osteonecrosis of the jaw due to 5 years on Xgeva, but those issues are managed. Cat scan scheduled before my 5th treatment. I looked up this board because I'm not sure I have a lot of options left after Enhertu. I was on Ibrance for 5 years. Then Truqap for three months. It was a reality check when my second line failed so quickly. I wish you well and will keep you posted about whether I can continue on Enhertu. If not, and I don't have options, I will be like you. LIve out what life I have left.
1 -
@onlywhenitrains So glad you’re managing Enhertu. I was not going to put myself through ten days of feeling like total crap, which happened after both infusions. I already had it in my head I was done with any treatment. I am glad now that I’ve gotten eight months off.
I hope you get to stay on long-term and your scan shows improvement. I know a few people on Enhertu over three years.
2 -
bumping every now and again.
1 -
Trying to arrange hospices I am in unending agony and being treated badly because I am not calm and compliant . Just want to die
5 -
@exbrnxgrl I’m so sorry how badly you’re being treated. I hate to hear you’re in agony. I wish I could help. I will say hospice is there for comfort, and they get me anything I need. I am not on morphine, as I don’t need it. Please keep me posted.
2 -
@exbrnxgrl I have found that being calm and compliant does indeed get you better treatment. I try to maintain a sense of humor. However, if I was in agony, I'm fairly certain I would be holy terror. I hope you find a hospice situation soon and get some effing relief.
@kbl My CAT scan is next week, but I got the results of my latest CtDNA test. Not good. I'm prepared for my CAT scan to show progression.
1 -
Exbrnxgrl, I remember you're a Kaiser patient - I'm really hoping they are very quick to respond in your area. My husband got onto our KP hospice here very fast, and they were amazing with reducing his pain on the first day. He'd been reporting a 4/10 pain, and they felt this was way too high.
Sending you love ❤️
3 -
kbl, sending you love, too ❤️
2 -
@onlywhenitrains I’m sorry your CtDNA wasn’t good. Please keep us posted. 💕
1 -
My experience has been the opposite. Being calm and compliant has not worked at all. I have had to activate total asshole mode,as have my daughters. We’re taking no shit from anyone. They may hate us but the squeaky wheel is getting greased. I actually hate this and it runs counter to my personality but stuff is getting done.
3 -
https://www.youtube.com/watch?v=A1AIroyiLEM
2 -
exbrnxgrl- I am sorry you are having such difficulty with getting hospice. I am not ready myself for hospice yet. But my Mom, Dad, and Sister had hospice near the end. Hospice was great, with the patient and the family. My mom had congestive heart failure, my dad old age- 96- and failing, and my sister with cancer. They had hospital beds, oxygen, meds, nurse visits, CNA visits, etc.
What are you having difficulty with? The hospice company? Scheduling? Insurance? Try a different hospice company.
I hate to read you are having such problems when this should be a time when you need peace.
1 -
My all inclusive HMO provides all hospice services though occasionally farms them out if overloaded. There are simply too many fingers in the pie and very little being done as they try to figure it out who should do what or who is responsible for anything. My pressure sores (buttocks) have been there since March but if I don’t bring them up, they pretend it has been resolved. ) and they are not are not responsible or worse, these are rare so I really don’t have a problem. Yes my adult daughters who are truly helpful keep running into the same level of mis communication and flat out errors. We have no choice except to activate asshole mode. I am about one step away from assisted suicide as the current situation is not living.
2 -
I am sorry exbrnxgrl that you are having these issues. I am thankful that you have daughters that can advocate for you. I think about other people who do not have family that can speak up for them. Esp in the time of hospice. That should be a time for excellent care to the patient.
1 -
@exbrnxgrl Are you saying you had no choice on who your hospice provider is? I didn’t know that could happen. I chose who I wanted, and I would be able to change if I wasn’t satisfied. I’m so sorry if that’s the case for you.
This is from Google. Not sure if you’re Medicare or private insurance.
Yes, if you have a Medicare HMO, you can still choose your hospice provider. While your Medicare Advantage plan (HMO) may have a network of preferred hospice providers, you are still entitled to choose a Medicare-approved hospice provider outside of that network. Your plan will help you locate a Medicare-approved hospice in your area, but you ultimately have the right to choose which one you prefer.
0 -
Yes, that is what I’m saying. The Kaiser model is somewhat unique. Everything, from hospitals, pharmacies, medical staff are Kaiser employees . Their campuses are the size of most community colleges. They also are their own insurers , including Medicare advantage plans. One is free to seek outside hospice care but, you must still have prescriptions filled at their pharmacies so the computer glitch would have still been present and the actively dying, as well as hospital patients, took precedence over me.
Let me be clear that I love Kaiser’s system . It has made my situation easy in almost every way. I can’t blame them for this and they are dancing as fast as can. It is a very uncommon model in the US and is often misunderstood. Please note that I have never been denied services nor had them limited in anyway. I hope this serves as a learning lesson for all computer based systems, not just Kaiser but please don’t demonize them.
1 -
@exbrnxgrl Thank you for explaining. Now I understand better.
I do have someone else I know on Kaiser, and her experience has not been the best, but she is one who doesn’t question most things, and I really think it’s so important to be on top of things. You sound like you are on top of things for sure.
0 -
I’m also on Kaiser and they’ve been great. Always get everything approved can get appointments when needed. I have yet to experience hospice but I had a friend who did. It sounds like they were wonderful. @exbrnxgrl , I hope you can get the care you need and deserve!
1 -
My experience has been excellent, save for this. Kaiser encourages wellness as well as patient involvement in one’s own care. However, if you’re interested in being told what to do without much questioning and not actively be part of your tx team then it might not be your cup of tea. It’s is a very non- paternalistic attitude, yeah!, which I welcome. I have never, ever been denied, deprived of or had care be delayed (save for this glitch) in any way and communications and services have been seamlessly integrated across all services . I love that they have put me in charge of all decisions. I would recommend them in a heartbeat.
Interesting how everyone was so willing to demonize Kaiser without understanding the full scope of the situation . Heck, even I didn’t understand it.3 -
@exbrnxgrl Same! My input is taken seriously by both my pcp and oncologist
2 -
exbrnxgrl- I hope you and your family get the issues resolved. I just wish for peace for you in this season of your life.
kbl- You started this thread, but I cannot really help you, as I am not at the hospice stage yet. As mentioned above, I have had family experience with hospice. But that is not the same as having it yourself. I wish peace for you too, as you are in this season.
2 -
I have no knowledge of Kaiser, so it’s not ever been anything I’ve thought about, to be honest.
1 -
@kbl. My scan showed stability so I was able to get my 5th Enhertu infusion. I will be scanned more frequently. I will continue to check out this board. Peace to you.
1 -
@onlywhenitrains That is fantastic news. I’m so glad you are doing well on the Enhertu. I just watched the YouTube you put a link to. :)
Yes, please keep me posted on how you’re doing.
0 -
Okay. I am putting my thoughts down, not to question others but to say why I made my decision.
I’ve had a wonderful life. Do I want to leave it? Absolutely not. Do I want to suffer on my way out or not have quality? Nope.I refused to go on medication that simply made me feel ten times worse than the cancer, and after many tears and taking time to think how I want my life to end, I chose hospice. They keep me comfortable, they give me whatever I need, which, thankfully right now, doesn’t include morphine or pain medication. I do have oxy here if I need it but only used it once.
I know I’m an outlier. Why am I still here since it’s in my stomach and all bone and bone marrow? I have lobular. Yes, mine has been slower growing, but I went six years with no treatment on the front end.
Should I have survivor’s guilt? I’ve chosen not to. I do not have control over my destiny on this journey. What I have is appreciation.
No, I don’t feel great. No, I don’t have energy and do have fatigue. But I’m not on cancer meds on top of that.
I would never want to talk anyone into making the decisions I have. I want to give a different perspective.
I remember when Bestbird said she was going on hospice. She weighed 70 pounds. She made it seven more months.
@exbrnxgrl How are you doing?
4 -
KBL,
Thanks for asking. Your reasons for moving to hospice echo mine in many respects. I had 13 progression free years at stage IV. I saw both my children get married, do well in their careers and settle into wonderful lives. I also became a grandmother x3! I finished my own career and retired in good financial shape so retirement has been relaxed and easy. I tried low dose chemo for one round and had a nightmare experience… literally. I was actually hallucinating from it so regardless of how much time I have left, it will not be spent fighting side effects and hallucinations. I am very much at peace with my decision and although there are some who would urge me to keep “fighting”, that is not the route I have chosen. I am right there with you my friend and fortunate that my family and friends support my decision. Take good care.
5 -
Kbl and exbrnxgrl, my lovely husband was on hospice from a rare bone cancer. His decision was made when he asked if he had to have any more blood tests, and they said no. He passed peacefully 18 months later.
1 -
@exbrnxgrl glad your hallucinations have stopped and hope you’re feeling better. That had to be so scary.
As you know on this forum, we have watched those we consider friends fight up to the very end and not benefit from hospice care to help manage symptoms. My heart breaks for them. It’s a choice we all have to make, and I would never tell them to stop. It does break my heart to see them suffering.
Please keep me posted on how you’re doing. Thank you for letting me know.Hugs to you!
@orknitter Thank you so much for sharing your husband’s story. Im so sorry for you that you lost him. I think I’m most surprised that off treatment I’ve already gotten nine months. If you don’t mind me asking, was he surprised he was making it so long off treatment? I’m so glad he got 18 months. I know it was not ever enough time for you. My husband of 41 years will be a mess no matter what.
I’m also sorry you are now in this shitty position of having Stage IV. It was never found in my breast either. Hugs to you as well.
0 -
@kbl Honestly, by the time hospice was on board, his dementia had started. He was in a skilled nursing facility near our home, but thought he was on a cruise ship. I spent many hours with him every day, and when covid hit, I was able to FaceTime and read books for hours. I think it was just hearing my voice that comforted him. Our youngest daughter was also able to visit daily before covid. Funny story: one day I was eating potato chips and he said he wanted some. I made a call to the facility and they promptly brought him a small bag. His comment was, "They sure are fast on this ship." We were married 40 years and he's been gone almost 5. I'm truly glad he's not here to see me with another round of breast cancer.
I'll be thinking of you and wishing you comfort.
3 -
@orknitter Oh, goodness, how hard that must have been during Covid. Thinking he was on a ship is amazing, and I love the story. I am sorry you had to deal with him having dementia as well. I can’t imagine. And also not being able to have him home. 40 years is wonderful and so hard at the end.
Thank you, again, for letting me know, and I will keep this thread up-to-date as long as humanly possible.1