Hello
I have been on here before asking for advice about my mum and she has asked me to write on her behalf. She was diagnosed with bone mets last Aug (bottom of spine and hips) and she has gone steadily down hill. She was on Femera for a while and after scans showed spread she swapped to Megace hormone treatment. She has also been taking Zometa since September and is still doing so. She can now barely walk. She has pain in her hips, leg, shoulder, chest and back and she describes it as muscle pain. 2 months ago she had radiotherapy to the base of of spine, which after a few weeks helped with some of the leg pain, but now she has more pain in the other leg (pain seems to swap or be in both). She is very weak. She also has a sharp pain in her shoulder and pins and needles down her left arm (and sometimes in her legs). She is waiting for results of CT and bone scans. It just seems to be one step forward and two back. She has now been visited by a physiotherapist who has given her a zimmer frame and told her to sit up straighter. She said the shoulder pain could be a trapped nerve or cancer spread.
I just wondered if anyone can suggest anything? Could the Megace be causing any of this (she has been on it for 6 months) or what else? Are things ever likely t get better? As I said, since August, she just seems to have got worse and worse and she hates living at the moment.
Thank you for your any of your thoughts.
Best wishes to everyone. x
Hi
She really needs to push for the result of the CT and bone scans and tell all of this to the oncolgist, Zometa is a fantastic bone strengthener and it is the best drug out there. Are they looking at her tumor markers to see how things are going? Which shoulder has the pain ? The oncologist should be able to have a full discussion with her about the treatment and various options,
A small part of this could be part of a viscious circle - less activity means more weakness and difficulty getting around ? To be honest I dont think it is that - I am just throwing out ideas. There is no doubt that long term hormonal treatment casues stiffness and aches and pains, but I dont think it should be so bad that she is really suffering from it… my own difficulties with hormonal treatment I would describe as not being able to get going in the morning very easily.
I am sure the physio was trying to help - but it doesnt seem that useful…needs to be the medical team who can rule out further spread and who can talk about different options. I was diagnosed with bone mets in November, and I do get flare ups but the zometa has done a good job in helping keep things going.
Again I am just throwing out ideas here - is your mum depressed on top ? its hard liviing with the real physical difficulty a secondary diagnosis brings and then - well its obvious this isnt easy…does she need to talk to her GP about how she is coping ? It would be great if you could meet with her breast cancer nurse and maybe a macmillan nurse to talk these things through.
I hope these thoughts are some use to you and your mum…take care.
Cathy
Hi Cathy
Thanks for replying. Yes indeed, it could be a vicious circle. Its her left shoulder where most of the pain is. Yes, Mum is very depressed, but she is already taking anti-depressants which she started 3 years ago when she was first diagnosed with primaries. She has also been introduced to a McMillan nurse who was lovely but didn’t know what to suggest. She takes paracetamol and ibuprofen for the pain which only takes the edge of. Doctors have suggested co-coldamine ?spelling? before but it often as unwanted side effects.
x
Hi Nipper
I don’t know if this will help but my mum has bone mets too. She has been in a lot of pain and, as you say, it seems to move about. We’ve tried a few different painkillers and nothing seemed to help much but she is now on fentanyl patches which have worked really well for her - no side effects at all. She could hardly walk but now she is getting about much better and is almost pain free. There seems to be a lot of different options for pain relief so maybe her GP can come up with something suitable for her. I hope things improve soon for you and your mum.
Lynn x
Hi Lynn
Thanks for the reply. Just found out mum has gone into hospital. Scans showed more spread of cancer. Its now pressing on her spine between her shoulders. Also now in liver. She’s having radiotherapy to shrink the bit on her spine. Thanks again for the suggestion. I hope to speak to the doctor myself at somepoint and ask about patches. x
Hi Nipper
I’m really sorry to heear your news and I hope your mum gets the right treatment soon.
Best wishes to you both
Lynn x
Nipper ,
I am sorry to hear this - but at least she now knows the real situation and can take some action (not be given useless advice like sit up staight). Will she be starting chemo for her liver ? I hope your mum can get some help here,
love to you both
Cathy