Painful hands

LC2909 2 months ago

1 reply
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I have stage 4 Her 2 Breast Cancer with metastatic bone cancer. I had urgent radiotherapy to stabilise a tumour pressing on my spinal cord and was given a body brace to wear around the base of my spine. I completed 6 Chemo sessions before Christmas then unfortunately I discovered fractures on my pelvis. I'm currently on 40mg slow release Morphine twice a day, 900mg of gabapentin, cholecalciferol, and more recently Letrozole. I have 3 weekly visits for Phesgo and 3 monthly Zolondronic Acid infusions.

I'd like some advice on my painful hands and knees. My knees are very stiff but my hands are so painful. They curl into a fist during the night and so sore to move them. I find it harder and harder to even pick up the smallest, lightest of objects particularly in the mornings. I asked my GP. I started using Ibuprofen gel on my fingers but she felt unable to advise on what might be causing this and said I should talk to my Consultant or Oncologist. My consultant Oncologist suggested a referral to Orthopaedics 4 months ago to discuss if there was a need for the brace and I asked again about this but it hadn't been done yet. I then asked her if they may be able to help with the hand pain too. I understand her priority is controlling the cancer growth and as it has remained unchanged at the last scan she is happy and if I am in pain I should just increase the Morphine dosage. But I am finding life very difficult going round in circles unsure whether a referral will get made and confused about the cause of the pain.

In the beginning I was unsure about going ahead with any treatment but increasingly I am questioning the quality of the time I have left. Please can you give me some answers?

Is the Phesgo causing the pain?

Should I have been on Letrozole sooner?

Is it making my pain worse?

Is there an alternative that might be better?

I apologise for the length of this post I've a high pain threshold and generally not a complainer, but I'm desperate. I have asked my Consultant but she is rightly focused solely on the cancer, and you may not be able to give me answers either but I am at the point of giving up. I was offered quality rather than quantity of life but really don't think I have much quality left.

Sherrye - Macmillan 2 months ago

Hi LC2909

Thanks for getting in touch and welcome to our online community. My name is Sherrye and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I can see you’ve joined a few of the online community forums, I do hope you’re finding them helpful and supportive.

Firstly, thank you for sharing your story with me, I am very sorry to hear about the pain and issues you’re experiencing with your knees and hands and that a referral to orthopaedics was mentioned 4 months ago but never done for you.

Here at Macmillan Cancer Support we are separate from the NHS and have no access to anyone’s medical records so are unable to give tailored information and recommendations as we’re not directly involved in your care. We can however give you general information and advice to then take to and discuss with your medical team.

In regard to the orthopaedic referral, I would encourage you to ask your consultant about this again and explain why you want it. Alternatively, your GP can refer you to specialist care, so you can ask them too.

You can also ask your clinical nurse specialist (CNS) to support you too with this. The main role of the CNS is to co-ordinate your care, give support and refer to other service that can help.

I understand you’re currently having Phesgo treatment and wonder if this could be causing the pain – Phesgo can cause muscle and joint pain for some people, but it tends to only last a few days after the infusion or injection and then resolves.

You asked if you should have been started on Letrozole earlier – Letrozole can be started at different points during an individual’s treatment plan depending on the reason for having it. As we don’t have access to your original treatment plan, I can’t say if this should or could have been started earlier for you.

I am wondering if you’ve had a referral to the physiotherapy team or the pain management clinic? This may be helpful with your pain and stiffness, your CNS or GP can do this for you.

When to comes to medications there is generally an alternative option for most things you consultant and CNS will be best placed to discuss this with as they know your situation best.

It would be helpful to write down all the things you want to discuss and ask about beforehand, so you are prepared for this conversation when you contact your consultant or CNS.

I hope this information helps. Please feel free to get back in touch if you want more information or support.

Best wishes,

Sherrye H,

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm), send us an email or contact us through webchat.

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Painful hands