Hi everyone
I’ve been ‘lurking’ on this site for a few weeks since my mum’s sciatica was diagnosed as secondaries in her lower spine. This is a wonderful site and you have all really helped me to come to terms with what is happening to my mum - thank you all so much. I am so worried about her though and I can’t believe how much she has deteriorated in a few short weeks. Her scan results showed some mets in her hip as well, although nothing in any major organs. She had rads to her spine last week and today they are treating her hip. However her mobility and pain have been terrible in the last week. Her onc did say that it would get worse before it gets better but I’m just looking for some reassurance that the rads will help in time. They have suggested chemo for her too but we don’t know what type and when yet.
Thanks again
Lx
Hi L,
Glad to hear Mum has started on some treatment for her mets. Your onc is quite right in saying things will get worse before they get better. That is quite common. You don’t say if mum is having bisphosphonate treatment - usual ones these days are zometa or pamidronate as an infusion every 3-4 weeks. I found when I was dx with bone mets 6 years ago that the rads did help but it took time, also about 3 treatments of the bisphosphonates, then I found i needed very little pain meds and things definitely got a lot better. It must have been very reassuring to know that her major organs are clear and I hope she notices some difference soon.
dawnhc
xxx
Sorry to hear your news. the first time I had rads to my hip/pelvis the pain worsened for about 4 days about a week after the rads. It usually does initially cuase more pin as it causes inflammation bt works about 4-6 weeks later.The biphosphonates really helped with the pain as well.
It is good hat her mjor organs are fine.
If you find out what chemo she is on, you can search this site and you will find other people’s experiences of that drug.
I hope the pain improves - I had to go back to morphine for a while until the rads pain settled down. It was worth itt though as it gave me the movement back in my hip and I could get in and out of the bath which I hadn’t been able to do for a bout 6 months.
Kate
Can only endorse Dawn and Kate’s posts as this was the same for me.
Do you know why she’s having the chemo? Is that for her bone mets? The only reason I ask is because I was put on pamidronate initially for my bone mets and not chemo.
Thank you so much for the replies. The pain has been really bad for her this week and I can’t bear to see her like this. I do feel reassured that she will see an improvement though and at least I can tell her that. I suspect that her onc is breaking things to us gently. She did say that, although it isn’t in any major organs, there are ‘other things going on’ which would be helped by chemo. We have been in such a state that we didn’t feel the need to go into any more detail last time, but maybe we’ll know more when we see her again in a couple of weeks. As for the bisphosphonates they weren’t mentioned at all and we can follow that up with her too. Again, thanks for the great advice and I’ll let you know how we get on. Best wishes to you all - hope you have a good weekend
Lynn x
Hi Lynn
What is you Mum taking for the pain. Has she been seen by the macmillan Nurse as they can advise on what she needs to take. there are all sorts of different types of pain killers she could be taking. I have spinal an pelciv mets and have started taking MST (Morphine) and it has definately helped.
Maddison
I have posted this on behalf of new user Sue
Hi L
I’ve just joined the forum, I have bone mets (3 warm spots) one on the spine, one top of the leg, one on the hip. I’ve had 10 rad to the areas resting now for 2 weeks before starting 18 weeks of Chemo + herceptin. I’ve already one shot of the bisphosphonate.
Its been good to read here that it takes time to work, I didnt know that things sometimes get worse before they get better. I took anti inflammatories yesterday and they worked. Its been great reading others experiences.
Sue x
Hi
Thanks again - mum is waiting for a referral to Macmillan and we have chased it up today. She has tried a few different painkillers but they all seem to upset her stomach and she is eating so little at the moment anyway. For the last few days she has just been taking a mixture of paracetomol and codeine. She can’t take anti-inflammatories at all because of other medication. I’m pleased to say that the pain does seem to be easing a little though and she is managing to move around a bit better. We see her onc again on 30th June and we will definitely ask about the bisphosphonates. She has only had 2 rads and I don’t think there are any plans to give her more? I’m encouraged by each little improvement but the bad days are awful - I just feel so useless.
Lynn x
Hi Lynn,
I have recently diagnosed bone mets after having suffered with really terrible back pain for 6 months. I had 12 rads and they put me on Tramadol. I had to play around with the dose but am now reasonably comfortable taking 100mg pills 2x a day. They make me feel really calm and I sleep really well with very little dreams that I remember.
I have also started bisphophonates and chemo of Taxol and Avastin weekly. I have had 3 so far and actually feel better overall.
Before the pain was controlled I could not do anything - not lie down, stand, walk, sit. I could not concentrate on anything and had very little sleep. I was a mess. It was a relief to be properly diagnosed and receive some active treament. Instead of being told it was herniated discs!
Hope that helps,
Penny
Hi llw35 and others.
Sorry to hear about your mum. I’m glad her pain is starting to ease a little.
My mum was diagnosed with bone mets (spine and hip) in August and she has been in constant pain. She’s on Megace and zometa (bisphophonates). Over two months ago she had radiotherapy to her hip. About a month later it seems to have helped the pain in her hip but she has constant muscle pain, mainly down her left leg, sometimes in her back and shoulders too. Her left knee is also painful. Its very hard for her to move around, even with a walking stick and I just wondered if anyone had any ideas what might be causing this or how to help the pain stop. She saw the onc a week ago who is going to arrange another CT/Bone scan as the last one was back in January.
Thanks xx
Hi again
Penny - thanks and I’m glad to hear that you’re feeling better. Mum couldn’t get away with Tramadol. If she took enough to ase the pain she couldn’t stay awake and she hated that. I think there are loads of options though so we just have to keep trying.
Nipper - Sorry to hear about your mum. It’s awful to see someone you love in pain like that. Just over the last couple of days my mum’s knee has been the worst pain. There’s definitely nothing there because she has just had her scans so we think it’s a side effect of the rads to her hip last week. As her onc said where you feel the pain isn’t necessarily where the problem is. Hope there’s some improvement soon for your mum.
Lynn x
Hi Lynn
When your mum next sees her oncologist ask her to mention that the painkillers upset her stomach because they may well prescribe omeprazole (which sort of coats the stomach - I think!). I take these as ‘cover’ when I’m on painkillers and it stops the lining of the stomach being affected.
Hope things get sorted out soon for your mum.
Pinkdove
Hi Pinkdove
Thanks for the reply - I’ll def ask about that when we go on 30th June, or the Macmillan nurse if we see them first. Her poor tolerance of painkillers is a real worry so it would be great if it helped.
Best wishes
Lynn x
Hi Lynn
It might well be that her intolerance to painkillers is because it’s affected the lining of her stomach. Hopefully they’ll be able to sort something out. Can you ring the Macmillan Nurse before the 30th because it’s a couple of weeks away or even ask her GP?
Pinkdove
x
Hi Pinkdove
Yes you’re right. We’re still waiting for contact from Macmillan and we chased that up on Friday. If we don’t hear anything soon I’ll ring the GP. Thanks again.
Lynn x
Hi Nipper
Fairly new on here but have found the site so helpful. My Mum too has mets to spine and hip diagnosed last Nov after 13 years free of BC. She was in a great deal of pain from her back just after Christmas having had the radiotherapy to her hip which did help. I too felt helpless as she literally couldn’t move out of bed. The Macmillan nurse acted promptly and had the Dr. prescribe a lose dose of Fentanyl patches. This may help your Mum as they stick to the skin to release the medication. The first couple of days my Mum felt nauseaous but that wears off. Thankfully, she has since been pain free .
Hope your Mum has pain relief soon.
Lulu1 x