The party’s over…
Comments
-
Scans indicate rapid progression, so it is clear the Ibrance is doing nothing. Nope, no mutations. Frankly, I have no idea what I want to do and death seems like a reasonable option. I have been stage IV for over 13 years. That is a long time.
3 -
So sorry that this is where you have landed after the crummy rads SEs. Get palliative care to support you while you weigh the options and decide what to do. May all the good wishes you have offered over the years return to you multiplied by a million. (((Hugs.)))
3 -
Caryn, I am so sorry! It's good to hear that your pain is being controlled . We are here for you and I hope your oncologist has a better plan soon. You have been such a support for so many on here and we are now circling you with love and sending you strength.
3 -
Thank you. I am leaning towards hospice.
3 -
@exbrnxgrl I’m sorry on your recent setback. It sounds like they are taking good care of you in the hospital. Oncology nurses in the hospital are amazing. My DIL in Denver is one and I have so much respect for her. I hope you can get a 2nd opinion before moving on to chemo as the other folks have mentioned. I don’t have any experience to share other than I spend lots of time researching and asking many questions before making treatment decisions. Sending hugs and words of peace and comfort as you move forward.
1 -
No such luck. The nurses try but are really not helpful unless I scream bloody murder. I am now considered uncooperative . I am not uncooperative I am in agony. They seem personally offended by my pain and suffering. I am done
4 -
exbrnxgrl As others have already said, I'm so sorry you are going through this. I'm sending hugs your way.
1 -
Oh Caryn 💔. Keep advocating for the pain relief you deserve.
1 -
exbrnxgrl, If your are looking for a relevant thread with posts from a variety of philosophical viewpoints try
A place to talk death and dying issues (can't get the link today.)
Advocate to get palliative care involved to ease the pain. It is easy to transition from that to hospice if you want to. Make your decision without being guilted by others.
1 -
I am shocked and my heart is in agony for you! This is so sudden. I have no words but your pain MUST be controlled so you can think more clearly for the path ahead. Absolutely get palliative care for now and get that pain level down. I know when I am in pain, I can't even think and also wish to pass. But please, it just seems so sudden and get another opinion.
This is always and always will be your call. If there is anything any of us can do from afar, let us know! We ARE here for you!
2 -
Palliative care has been involved for over a week.
3 -
It's too bad their plan is not working. My PC doctor was an anesthesiologist who would pull out all the stops when necessary. Sometimes a change in meds can make a difference. Alternating fentanyl with hydromorphone worked better for me than straight fentanyl even though it is stronger. Since everyone's body is different ask if they will experiment to see what works best. Hopefully they will come up with an effective regimen or see if a nerve block can lull the worst part. If they turn a deaf ear maybe try getting a pain management clinician or a patient advocate involved. All the opiod publicity has made some clinicians hesitant about what they will prescribe. I'm sorry you are having such a tough time.
1 -
@exbrnxgrl I hope you have loved ones near by who can support you through this terrible struggle. We are here, of course.
1 -
@exbrnxgrl I’m so sorry they are not taking proper care of you. No one should suffer like you are doing. Sending love your way. Wish there was more we could do. 💕
1 -
Dear Caryn
I am so sorry that you are going through such a hard time.
I have followed you here on breastcancer.org for seven years; you are actually the reason I joined.
I am Danish and was diagnosed with a single met in my femur in 2018. I started searching the internet for similar cases, and one of your posts on this site popped up. I posted back in 2018 and you sent me an uplifting answer. I just want to say THANK YOU; it really made a difference for me and provided hope at a very difficult time. My path has since encountered various bumps, progression and treatment wise, but I am still here and doing well.
I acknowledge that things are tough right now for you, and you should be receiving adequate pain management. I just want to provide my perspective on further treatment. Please consider my comments as nothing more than my thoughts, erase them/cast them far away, if I am ‘off your chart’ ❤️.
I am dealing with Her2 positive / ER positive mbc, I know you are ER positive (or were). My profile means I have tried both various chemotherapy's and anti hormone treatments. Treatment has helped remove all pain from bone metastasis, leaving me to deal with treatment side effects, only. Many imagine that chemotherapy is much worse that anti hormone treatment. That does not have to be the case. My own experience is that I have fewer, less disabling side effects. Currently I am on Xeloda (and Herceptin and Tucatinib). Thursday I received my Herceptin treatment at the hospital, and I met a woman with ER positive mbc; she’s gone through various anti hormone treatments, but is now on Enhertu. She said Enhertu is the easiest treatment she has received…
My point being, we simply don’t know how various treatments affect us, before we try….❤️
I hope you have family close by that help you manage all the emotional stress, and all the difficult decisions 🌷.
Sending kind thoughts and virtual hugs across the Atlantic.
Meja
3 -
@exbrnxgrl My liver was riddled with metastases and I had no choice but to start chemotherapy quickly.
The chemo scared me, but the treatment went quite well. It cleared everything up and I was able to resume targeted therapies afterwards. I'm now on oral chemo and I'm still gaining time, month after month.
This means that trying chemo isn't a bad option and you can always give up during treatment if it really doesn't work for you. Keep palliative care to support and relieve your pain. The two options are complementary. I hope we can find a solution to your pain quickly, so that you can think more calmly about the situation.
Translated with DeepL.com (free version)
1 -
Caryn, we are sending lots of love to you and wishing for a solution to your pain. You've been a wonderful and important resource to this community for so long, we only hope you feel the love and appreciation that is pouring back to you. If there is anything at all we can do, please let us know.
Gentle hugs,
—The Mods
1 -
I just think I’m done. This is not living.
4 -
Dear exbrnxgrl: If you feel you are done, do not be afraid of what is next. We all will cross the bridge at some point. Everyone is terminal from the moment we are born. I hope you find comfort from your pain so the next step is peaceful. I wish this for myself as well. Maggie15 has a good suggestion….find the thread talking about death and dying. It is comforting to discuss with others who are in the same situation. I wish you and all of us the best. ♥️ Sharware
3 -
No advice; just sending love your way.
1 -
We love you, exbrnxgrl. ❤️
1 -
sending love your way and hopes that they get your pain under control to provide you with relief.
Thank you for sharing your time on the board to share your experience, knowledge and compassion with all of us. Your posts are always so helpful and so well written. Your caring personality shows through all your posts,
keeping you in my prayers.1 -
@exbrnxgrl Sending, strength ,love and peace your way💕
1 -
Caryn, I am so sorry. I hope your medical team finds a way to get your pain under control. I hope you find comfort.
I'm keeping you close in my thoughts, and sending love.1 -
Thinking of you today, Caryn. 💞
0 -
Thinking of you @exbrnxgrl. We miss you. 💕
3 -
Thinking of you also @exbrnxgrl and hoping you spent some quality time with family this weekend or peaceful time alone. Hope you feel loved and supported by the many people you have helped on BCO.
3 -
a brief update… After a half dose of taxotere left me with mental disorientation , and delusions, as well as hallucinations (I was convinced that the Kardashians had kidnapped me and taken me to my medical facility in Las Vegas. I live in CA😂) as well as virtually no memory of the last two weeks, I am done. I am never physically comfortable and this is not living. I know I have never gone through IV chemo before but I can’t live like this. Will consult hospice this week.
8 -
@exbrnxgrl , we are so sorry to hear that you've been struggling after your first infustion with taxotere. We encourage you to discuss with your medical team - hopefully some adjustments can be made to the treatment to make your situation much more tolerable. Also, the following "taxotere survival guide" thread, albeit an older discussion topic, may still be useful, in case you or your team are considering giving it one more try:
In either case, we're all thinking of you and sending you support and gentle hugs. ❤️
0 -
@exbrnxgrl I am sorry you are going through so much pain and stress. When I had my first dose of Docetaxel, I was convinced that my right arm had swollen to twice its size. The next day, it looked perfectly normal and I am pretty sure I was hallucinating, not because of the Docetaxel, but because of the anti-nausea drug they gave me that is also used to treat psychosis. I stopped taking all the extra meds they were giving me except the steroid. Never had a similar problem after that. I completely understand how you feel, because chemo is a pretty wretched experience, but hopefully you have a good team that can make adjustments. Once the whole thing was over, I felt stronger and stronger and could enjoy this precious life again.
3
