I don’t know of this issue is covered in some past posts. But just want to check in anyway.
I take my ibrance and letrozole and do all the things I should do for that side of things.
But I’m just wondering how much/many painkillers some of you are on and about you pain levels etc.
When I was first diagnosed, (had been misdiagnosed for previous 8 months with terrible pain in my spine, ribs, hips and skull), I was told by my oncologist to take slow release oxycodone, (Targin). But I also take panadol osteo. Sometimes I get headaches also, which I think is probably more stress related. But one of the nurses said I should take the panadol regularly, ie: 2x 3 times daily, prophylactically.
Anyone else do this?
Compared to what my pain was like before I started treatment, I think this keep it under control. But sometime I have to take break-through oxycodone too.
I look forward to all your responses.
While I’ve been on this holiday I’ve been walking more, and I find that my whole body is in pain afterwards. So I’ve been taking a little more pain relief.
Also.....I get a bit scared that if my pain gets worse, the amount of medication I’m taking won’t work for me when I need it to.
Timtam.
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I too have awful pain and there’s a fairly recent post from me on this pain hell
I try to not overdo the pain meds if possible as I get constipated
I regularly take cocodamol 30/500 with 800 mg ibuprofen..I do sometimes take 5 mg of ocycodone if I’m riding my horse or walking any distance as an extra med but sometimes it makes no difference ...I remember reading that pain meds work much better if taken regularly
I’ve read about the fentanyl transdermal patches which you change every 3 days...it delivers slow release painkiller...would be useful as I’m fed up of watching the clock to see if I can have another fix of pain meds...can dominate your life!!
Like you I’m afraid of it getting worse and losing my life as it is
I’m actually in a dark place lately but that’s probably due to fatigue from recent radiotherapy and I’m convinced that feeling this way actually increases the pain..maybe I’m wrong but it’s worse since I finished that treatment ...mind body connection...if I’m in a good mood for example out with my chums then pain appears to diminish...I find I’m alone a lot of the time which makes things worse as well
Hi Barb, I wonder if you got steroids for after the radiotherapy? I might have asked you this before but there are so many people in this group I forget who has been given what. They certainly helped me manage pain after radiotherapy on my spine x
Barb. I so so understand around the radiotherapy thing. If you can, just remember, this too will pass..... I had radiotherapy on my spine last Nov Dec. my partner was receiving his bad news of dying and I was his carer. Ugh! I thought I was an such an awful person, cause I didn’t care about or for him properly, as I felt like &*%# myself!
Really. It has passed now. That feeling. The yuckyness. But every time my onc recommends radiotherapy for my skull pain, I say to her, I’d rather die. And I mean it. I will never ever have it again.
You are so brave!
Even though that’s probably not what you want to hear!
By my reckoning it wasn’t long ago that you had it? Yes?
It’s not you. It the treatment. This awful residue of the radiation will pass, let’s hope.
You’re so right about radiotherapy...I certainly would refuse it in the future...just feel crap and very emotional...my daughters wedding is next month and they're all getting excited about it and I feel like running away...just not interested...so horrible and selfish of me but I really am not wanting to know....before the radiotherapy I was looking at hats and dresses etc and planning stuff....luckily I’ve got my outfit so can just pitch up on the day
I just hope I can snap out of it in time...I’m meeting up with this friend (sort of friend!) for lunch...she’s a proper hypochondriac so if she starts moaning about her non existent ailments I’ll probably chuck a glass of wine or food at her....I sound so nasty don’t I??... I’m not normally but just fed up
You are not being selfish at all. You are in pain and dealing with the radiotherapy side effects. It takes awhile to recover from that but you will!!!
You will be ready for your daughters wedding. I'm sure!
I had 33 sessions of radiation with my initial dx after chemo and it took awhile but I finally recovered. Like you very emotional and faigued and yucky!
You are strong and you will get yourself back soon.
I wish I could say something about the aloneness. But I can't as I'm there too. I just keep trying to really spoil myself with the things I love. I recommend this approach. As much as you can. Even if it hurts someone else. DON’T do it if you don't want. And DO do everything you do want.
I hope you feel better. I am lucky that I don't have pain, but I do have a lot of fatigue. I have found though that when I go out with friends or make myself go out shopping to move my body, that I feel much better. I think distraction does work.
Thanks Sandra. I'm on very low dose slow release oxycodone and the Panadol also.... When needed. I feel the same as you, and don't want my brain to be any messier than necessary.
Thanks so much for your reply. It really helps me feel less alone.
Headache are caused by ibrance. It happened to me. The doctor said it was bc the dose was too high for me. It was truth bc one week later that I stop Ibrance 125mg the headaches disappeared.
Wow. It just so happens that since going on the lower dose now.... My headaches have subsided quite a bit. Thank you for bringing that to my attention. Exciting to believe I may not have a headache every morning, and some days a migraine, from now on.
This disease is a bitch. I developed sciatica and have been in horrific pain. It is subsiding but I want an answer- so another mri. I called astra Zeneca about alternate injection sites for faslodex- they said none were studied and administration is for buttocks. That’s really great. I want to scream and punch at the same time. I am due for the shots this Friday but the left buttock is out of the picture for it. My dr has no answer- says let’s get mri done first. I am a nurse and drawing blanks now on this dilemna. Hah! And the treatments have kept it stable. I am so angry about this. Anything outside the box has no answer?! Ridiculous.
Please have them heat up the Faslodex it goes in real smooth..I had a Chinese nurse administer the injection an she kept patting the site an I felt nothing...please believe me, I will not take the needle if not heated up an not room temperature either
I had excruciating pain from my hip and back for a year before my cancer was diagnosed and had nothing for the pain. As soon as my family doctor got my diagnosis she gave me Vimovo which is a naproxen based pain/anti-inflammatory with a stomach pill built on. I take that twice a day. I also started on hydromorphone but when I had to keep increasing my dose to cover the pain she switched my to hydromorphone cont which is a slow release I take twice a day. My pain is under control. I have days where I get normal aches and pains but nothing severe. My only issue is the fatigue that the hydromorphone causes but hay is better than pain. All of my doctors and nurses have said it makes no sense whatsoever to be in pain.
Yes. I think what my medicos here say about “never be in pain”, and keep a “regular dose of painkillers going to keep the pain at bay”, might just be the best thing.
I’m not taking the top dose they tell me, (they want me on 7/15 Targin day and night), as I want to stay in control of my levels. So, 5/10mg Targin (slow release oxycodone) + 2x panadol osteo at night. Then 7/15mg Targin + 2x panadol osteo in the morning, so I feel less pain and can get on with my day. This means less constipation, and more control.
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