Looking for answers to pain management

[ReneeStreet]

Hi there,

My mum is currently battling breast metastatic cancer that has spread to her spine and ribs. She was diagnosed with this in early November and the deterioration of her health in those 2.5 months has been rapid, purely due to the pain she is in. She can hardly walk now, has no strength in her arms or upper body and seems to be getting worse daily. Her feet are so swollen with fluid she can barely put on a pair of thongs. She had ten days of radiation and the pain seemed to escalate after that? She has just had her 3rd round of chemo and is now having a week off. Her regular specialists are all away on holidays at the moment and it feels like no one can give us any answers. She had a MRI done just before Christmas to check if there was any nerve compression around her spine but that came up clear....I'd love to know from others who may have experienced similar if this pain is going to be able to be brought under control and mum can have some quality of life again, or is this the new normal?  From a fit, healthy, active women, to one who can barely walk in such a small space of time is petrifying. Any experiences shared around this I'd find very helpful?  Thank you xx 

[Budgie]

Hi ReneeStreet,

Get your mum to her GP as soon as possible & have them write a referral to palliative care nurses. She will then be able to call them whenever she needs some added pain relief. If your mum isn't already on regular painkillers, make sure she doesn't leave there without a script for some. There is no reason why your mum should be in so much pain.

All the best to you both.
Budgie

[Frostling]

Howdy,

First off - not a doctor/nurse! This is just based off my own journey/experience with coping with a loved one's cancer and I'd recommend researching further.

Radiation/Chemotherapy can cause intense side effects - the doctors need to know about them so they can perhaps change the dosage/treatment plan so next time you see them, would really recommend letting them know everything that's happened during and after treatment. Keep a diary even!  Also did they give you a treatment plan and side effects to look out for? 

In the case of the treatment plan that my mother got - she was informed to go to hospital if she ever experienced intense pain and to give them her chemotherapy/cancer card treatment info so they knew how to help her best.   Someone mentioned it before I think but talking to her GP is also a good step but most importantly, make sure that she or you tells the doctors that you're really wanted to focus on improving quality of life and also what nutritional changes or physical therapy might assist her best. 🙂

In the case of my mother - she decided after telling her oncologists that she wanted to focus on quality of life that she would forgo radiation therapy as they admitted that it would probably be not worth the side effects based on other patients like her. (I'm still trying to work out how to accept this choice but she seems quite happy and not in too much pain at the least....)

Not saying that the doctors you have are bad - they are probably just used to people wanting the 'cure' no matter the cost/pain.  However if they don't talk to you and your mother about pallative/quality of life improvements after you request them than you might really want to consider getting a second opinion!

All cancer is different so I won't tell you the drugs that my mother is on but elevating her knees and putting ice on them did seem to help her out a bit.

[ReneeStreet]

Thank you so much for taking the time to reply, that was really helpful. 

Mum has definitely gone downhill since the radiation, and that's what we wanted to know, will she bounce back from this or is this just her cancer and the new normal. 

Since I wrote this post, mum was taken to hospital on Sunday as her pain had escalated again (even though we were at the hospital on Friday for her chemo, she let them know about her pain, didn't even get to see a doctor.....) she couldn't walk and couldn't keep her head up.

After a CT scan when she was taken to emergency they found fractures in her neck vertebrae, 2nd rib, collar bone, and thoracics… no wonder she was in so much pain!

They're assessing her scans/results from her radiation and making a decision from there.... So frustrating she wasn't listened to and just tinkered with her slow release pain medication. When she came to hospital they put her on morphine. I hate that she wasn't listened to. No one should have to be in that much pain. 

[ReneeStreet]

Thank you so much for replying, it really means a lot. You'll see from my post below mum's pain and situation has unfortunately escalated, but hopefully once she's home, the Palliative Care team will be initiated and she can call on that support when needed. She was on slow release medication, as well as 6 endone a day plus Panadol osteo, but nothing was working (which we know now was due to fractures) but this pain has been continuing since Christmas so I hate to think what mum has been enduring. 

[Budgie]

One would think there would have had to have been a bit of rough treatment to sustain that many breaks. I know older people can have very brittle bones, but for heaven's sake, that's alot of bones broken. The poor woman. I do hope she recovers well from this.

Best wishes
Budige

[Frostling]

Read both of your replies and yeah - I'm just as shocked by the doctors response.  I'd probably keep an eye on them and request print outs of all the drugs/etc they're doing.

Unfortunately (in regards to chemo and radiation), it will probably be a new norm of feeling really bad after the first week or so of chemo/radiation but then feeling better for the week before the next treatment (because that's when her body will be on the mend).   I'm not an expert on it myself but based on my own research - chemo and radiation aren't good at being specific in terms of what to poison and kill so there is always going to be 'casualties' of good cells.

Good luck to you and yours - just remember the important question of asking "how will this impact her quality of life?" and with any luck, the doctors will hopefully not be so hardcore in their attempts of being curative or extending life as long as possible despite side effects.