Palliative Care Fatigue

[Star_22]

Has anyone got any experience of managing fatigue during palliative care?

My mum is struggling so much with fatigue and we are getting conflicting advice.

She is on a blood thinner (Apixaban) after a blood clot which has now cleared. Her oncologist wants her to have a steroid (Dexamethasone) and has said there is no issue taking it alongside the blood thinner.

Her palliative care team have said different and while they started the steroid, they stopped it only after a few days. When I asked why, I was told because it wasn’t doing anything - her notes however say it was effective but it was stopped because of the blood thinner.

I know my mums time is limited but I understand the steroid is really the only thing we can lean on for her to feel a bit more herself.

If anyone can share any experience it would be very helpful.

Xx

[N-A-58]

I supported my mum last year and know that the fatigue was an awful symptom that they just couldn’t get on top of. There was conflicting info re the steroids for my mum too and the hospice care would have like to take them away but because of her other symptoms she was kept on them. I don’t think it helped though and the fatigue was always there.

Is your mum resting as much as she can?

My mum would have good and bad days and would try and rest.

I know my message isnt particularly helpful but wanted to reach out and give you some info.

Thinking of you all at this incredibly difficult time. X

[Star_22 in reply to N-A-58]

Thank you for responding. I’ve reached out via the chat if that is ok as conscious my topic is about palliative care and do not want to tigger anyone x

[Hotlantaphatz]

Hi Star! Well I am stage 4 met to my abdomen and pleural lung cavity. Yea, good times. lol! I am still taking chemo and have a very caring palliative team. I too am on blood thinners. I too suffer from HORRIBLE fatigue. I am on morphine as needed. Thank God not needed much. But it is available. Listen, share with your mom to rest but when she can get up and just walk to another room or stretch. Move when and if she can. It helps. Hold her hand and walk around with her. On a much lighter note, I hate to do dishes so when I am fatigued I lean on the dishwasher and load dishes. Better than sitting. I empathize deeply with her. Tell her I said to be strong and hold on! Ok? I hope I have offered you something! God bless!

[Star_22 in reply to Hotlantaphatz]

Thank you so much for taking the time to respond. I’m sorry to hear you are experiencing fatigue but pleased you are still able to access treatment and have a caring palliative care team - they are superstars aren’t they!

Mum sleeps a lot. Her fatigue is extreme, she struggles to even smile. But today she pushed herself to do some arms exercises and to do a short walk along the hallway which was good.

Mum has morphine but it’s in the form of a skin patch which is super easy to manage - it’s just like a plaster. She has that alongside paracetamol and so far the pain is very well managed.

Am wishing you all the best - don’t give up fighting for yourself xxxxx

[bamboo89]

According to Drugs.com, there is no interaction between Prednisone/Prednisolone, another type of steroid, and Apixaban, but Dexamethosone may reduce the effectiveness of Apixaban. Prednisolone is weaker than Dexamethosone, so a higher dose might be necessary - if you have a friendly pharmacist, ask them about it, they know far more about drugs and interactions than doctors do. I certainly wouldn't give up the fight for steroids,, I know myself what a difference they make - whenever I'm given them for my COPD I actually get an appetite back and have more energy, even though the dose is relatively low.. And I recall when my father was essentially dying from COPD, the hospital withdrew the steroids 'because its not good for long term health'. Since there was no long term left for him, I pointed this out in an assertive, persistent manner until they finally accepted the point and put him back on a medium daily dose of Prednisolone. Turned out they were being overly cautious for fear of relatives suing them if we thought steroids had killed him or something, but since I was his daughter, they finally recognised we were in favour of anything that made him feel better, given the phase of life he was in. Your palliative team may have the same, unexpressed to you, fears; it is necessary to inform yourself about the risks, then argue with them that you are fully aware and won't accept their reluctance, that no family member is going to prosecute them, if you can be sure they won't. Maybe ask your Oncologist regarding use of Prednisolone instead and why, but since he seems unaware there might be an issue using Dexamethosone, it won't be a quick conversation., Good luck with it anyway.

I too am in the palliative phase of my OC stage 4b,, on blood thinners (but not Apixaban) and kind of waiting for the inevitable .... And yes, fatigue is a problem. My biggest fear ongoing is not having the energy to research and argue with the medics...

[Star_22 in reply to bamboo89]

Thank you for taking the time to respond. This has really made me think so I’m going to speak to mums oncology team to ask their view.

I just want mum to have some energy so we can have a bit more quality time.

I hope you aren’t experiencing too many symptoms and are comfortable. I always thought this part of mums journey would be peaceful but the fatigue means it’s very much a struggle. 😞