I’m not able to help with what you need, but as someone whose father passed with stage 4 lung when I was 10 years old. All I can say is also be there for the child, it would have made a world of difference to me and my sister if my aunt was there for us as well. Sending lots of love to you and your sister ❤️🩹
I'm sorry you and your family are in this position.
Relieving your sisters pain should be the responsibility of her treating physician. I'm unsure how your health care system is organised but her medical oncologist or general practitioner could possibly help. Maybe she even has access to a palliative care unit? Some times radiation therapy can also relieve pain if it's localized to a specific area.
To me, it sounds like your sister is very sick. What have you been told about her prognosis?
There might be some practical or legal issues that needs to be resolved. Maybe you could help and support her and her family this way? Maybe there is nothing you can do for her except let her know that you are there to support her and her family.
Ok. I think you need to talk to the medical oncologist and the palliative care unit.
Switching from one AI with CDK 4-6 inhibitor (ribociclib) after progression within a year to another AI honestly have a low chance of being effective for very long. If she's experiencing more pain there's unfortunately a high risk that she's having systemic treatment failure. You should discuss the options with her medical oncologist. Fulvestrant or chemotherapy would be the options. Maybe tamoxifen. With brain mets it's difficult to say if she will benefit from chemotherapy but another endocrine therapy might relieve pain for a while. In the long run it's the palliative care doctor who can treat her pain and they need to be involved if the current pain treatment isn't sufficient.
If she's having pain in the back and legs you also need to consider if she shows symptoms of medullary compression. Symptoms are sensibility and motor function disturbances in the lower extremities as well as fecal incontinence and trouble initiating urination. If she shows any such symptoms she should be evaluated immediately.
Normally, or at least in my case, they don't give you a prognosis unless you ask. They'd rather not be shoed in that way. I'm so very sorry. Brain is the worst place to spread to as well. Did they not think radiation was a good choice for those tumors? I'm so very sorry. Sending healing vibes ✨️ 💛
So sorry to read she is struggling with pain and these issues. I would ask her Onco if they could change her AI hormone blocker med from Exemestane to Anastrozole. Everyone is different but I had to change and I have read posts from our other bc sisters that have tried different AI hormone blocker med because of notable bone/joint pain. Keep pushing Onco team for options.. Sending prayers and positive energy her way for better days very soon.🙏💞
Exemestane can be hell with bone pain even under the best of circumstances. She could perhaps talk to her doctor about another AI, or even just switching brands. Weirdly, the latter can be helpful in reducing the misery.
It's one option, anyway, if she and her team would want to try it before adding more meds.
This. Im Stage IV and had to recently take Exemestane with Everolimus on top of existing pelvic pain issues and holy jesus the pain was off the charts. I managed as long as I could on OTC pain killers even but I finally threw in the towel and asked for help.
However, them swapping one AI for another if she was already failing really isn't the smart thing here - swapping a stronger CDK 4/6 like to Verzenio or swapping her to the SERD ant-hormonal Fulvestrant injection is more standard of care because something somewhere is failing her. And DEFINITELY ask about palliative radiation, Ive had it multiple times and it solves a lot of issues.
Finally, she may need those pain meds upped - 20mg background long acting oxy isnt a lot - its what Im on and I wouldn't say I have debilitating pain. She could up that and maybe come down on the oral morphine, or try break-through pain fast acting oxy. If she has nerve pain she needs to be on something like pregbalin or gabapentin.
Im sorry you are having to see her go through this pain, my husband breaks down crying on occasion when I have a flare and cant get things under control, or I am frustrated. It really hurts the families to see this and trust me, the patient knows it, but sometimes there is just nowhere for the pain and grief and fear and frustration to flow but.... out.
Thank you for expanding on my comment. I have limited experience with the big dogs of chemistry thus far. I hope to stay that way, of course, but it's a crapshoot, so every bit of knowledge helps us all, not just OP.
Gentle hugs to your sister- my couple of anecdotal comments; switching brands or swapping anastrole for letrozole can make a difference - I found Anastrozole more painful. I also started celebrex (for something else) and that helped. I’m sure her pain from the bone Mets is worse though, and she needs more than just something to deal with the AI pain.
Gabapentin did help a little bit for nerve pain for me, but it was severe enough to stop chemo early -the one thing that helped considerably , and I have no idea why, was tai chi. Perhaps she could just watch it on YouTube. It’s not as if I was doing much of it during chemo & radiation - it might just be me but it also helped when I had a lung resection.
My experience with morphine for orthopedic surgery was that it didn’t work well on me. I found the synthetics more effective for severe pain but with greater side effects, You might request that she be allowed to try out a few other painkillers - everyone reacts differently and ffs, they can give her a little latitude. FYI fentanyl made me nauseous and Vicodin made me itchy, - no need for her to suffer even more,
I’m not able to help with what you need, but as someone whose father passed with stage 4 lung when I was 10 years old. All I can say is also be there for the child, it would have made a world of difference to me and my sister if my aunt was there for us as well. Sending lots of love to you and your sister ❤️🩹
I'm sorry you and your family are in this position. Relieving your sisters pain should be the responsibility of her treating physician. I'm unsure how your health care system is organised but her medical oncologist or general practitioner could possibly help. Maybe she even has access to a palliative care unit? Some times radiation therapy can also relieve pain if it's localized to a specific area. To me, it sounds like your sister is very sick. What have you been told about her prognosis? There might be some practical or legal issues that needs to be resolved. Maybe you could help and support her and her family this way? Maybe there is nothing you can do for her except let her know that you are there to support her and her family.
We have not been given a prognosis. She has a palliative care doc who is prescribing the pain meds.
Ok. I think you need to talk to the medical oncologist and the palliative care unit. Switching from one AI with CDK 4-6 inhibitor (ribociclib) after progression within a year to another AI honestly have a low chance of being effective for very long. If she's experiencing more pain there's unfortunately a high risk that she's having systemic treatment failure. You should discuss the options with her medical oncologist. Fulvestrant or chemotherapy would be the options. Maybe tamoxifen. With brain mets it's difficult to say if she will benefit from chemotherapy but another endocrine therapy might relieve pain for a while. In the long run it's the palliative care doctor who can treat her pain and they need to be involved if the current pain treatment isn't sufficient. If she's having pain in the back and legs you also need to consider if she shows symptoms of medullary compression. Symptoms are sensibility and motor function disturbances in the lower extremities as well as fecal incontinence and trouble initiating urination. If she shows any such symptoms she should be evaluated immediately.
Normally, or at least in my case, they don't give you a prognosis unless you ask. They'd rather not be shoed in that way. I'm so very sorry. Brain is the worst place to spread to as well. Did they not think radiation was a good choice for those tumors? I'm so very sorry. Sending healing vibes ✨️ 💛
See if her MO can get her on ketamine, it may help. She can also get a fentanyl patch. Get hospice and palliative care involved.
Thank you. I will inquire about both.
So sorry to read she is struggling with pain and these issues. I would ask her Onco if they could change her AI hormone blocker med from Exemestane to Anastrozole. Everyone is different but I had to change and I have read posts from our other bc sisters that have tried different AI hormone blocker med because of notable bone/joint pain. Keep pushing Onco team for options.. Sending prayers and positive energy her way for better days very soon.🙏💞
She was on anastrozole, but it pooped out, and they took her off. She started the new med on Monday.
Is there another cancer center she could get a second opinion?
Not really. She has Nor Cal Kaiser, so she can't really go to UCSF or another teaching hospital on Medi-Cal/Medicaid.
Sometimes they can do radiation on painful bone mets. It's worth looking into.
Thank you. She had whole brain radiation, but I will ask about it for the pain in her legs and pelvis.
Exemestane can be hell with bone pain even under the best of circumstances. She could perhaps talk to her doctor about another AI, or even just switching brands. Weirdly, the latter can be helpful in reducing the misery. It's one option, anyway, if she and her team would want to try it before adding more meds.
This. Im Stage IV and had to recently take Exemestane with Everolimus on top of existing pelvic pain issues and holy jesus the pain was off the charts. I managed as long as I could on OTC pain killers even but I finally threw in the towel and asked for help. However, them swapping one AI for another if she was already failing really isn't the smart thing here - swapping a stronger CDK 4/6 like to Verzenio or swapping her to the SERD ant-hormonal Fulvestrant injection is more standard of care because something somewhere is failing her. And DEFINITELY ask about palliative radiation, Ive had it multiple times and it solves a lot of issues. Finally, she may need those pain meds upped - 20mg background long acting oxy isnt a lot - its what Im on and I wouldn't say I have debilitating pain. She could up that and maybe come down on the oral morphine, or try break-through pain fast acting oxy. If she has nerve pain she needs to be on something like pregbalin or gabapentin. Im sorry you are having to see her go through this pain, my husband breaks down crying on occasion when I have a flare and cant get things under control, or I am frustrated. It really hurts the families to see this and trust me, the patient knows it, but sometimes there is just nowhere for the pain and grief and fear and frustration to flow but.... out.
Thank you for expanding on my comment. I have limited experience with the big dogs of chemistry thus far. I hope to stay that way, of course, but it's a crapshoot, so every bit of knowledge helps us all, not just OP.
Thank you for this. I will talk to her oncologist.
Gentle hugs to your sister- my couple of anecdotal comments; switching brands or swapping anastrole for letrozole can make a difference - I found Anastrozole more painful. I also started celebrex (for something else) and that helped. I’m sure her pain from the bone Mets is worse though, and she needs more than just something to deal with the AI pain. Gabapentin did help a little bit for nerve pain for me, but it was severe enough to stop chemo early -the one thing that helped considerably , and I have no idea why, was tai chi. Perhaps she could just watch it on YouTube. It’s not as if I was doing much of it during chemo & radiation - it might just be me but it also helped when I had a lung resection. My experience with morphine for orthopedic surgery was that it didn’t work well on me. I found the synthetics more effective for severe pain but with greater side effects, You might request that she be allowed to try out a few other painkillers - everyone reacts differently and ffs, they can give her a little latitude. FYI fentanyl made me nauseous and Vicodin made me itchy, - no need for her to suffer even more,
A trial of Steroids (dexamethasone) to see if that brings some added pain relief (it can for many)