Hi,
Feel a bit guilty as the main times I seem to write are when I need help, but believe me girls I do read the forums and I do feel like you are all my friends.
Currently on xeloda (cyle 6) and things are going well have just had results of ct scan that shows things to be slowing down and holding at the same as it was. My problem is that about a month ago I fractured 2 small bones in the pelvis (right where you sit) Xrays confirmed that the fracture was the result of tumor that was already there. Now because of where the fracture is they tend not to intervene surgically just rest and painkillers and the radio should help with the mending. I also understand that radio can sometimes make things worse before it gets better, and I only had radio which was a one off dose on tuesday, but things ache, sometimes worse than other days. So has someone got words of wisdom out there.
Hi
Sorry to hear about your pelvic fractures. Having had an initially undiagnosed fracture in my pelvis when I fell off my bike 16yrs ago when I was young, cancerfree and fit, I can sympathise with the pain of not being able to sit. This morning I can sympathise as I fell asleep sitting up without using my pressure relief cushion and my pressure sore which were nearly healed look all inflammed and it’s painful to sit and as I’ve bony secondaries in my left hip and pelvis, I’m stuck how to sit!!!
Enough about me though - I’m afraid you will not be pleased to hear about my experiences of rads for cancer but from everybody I’ve talked to or read here all have Increased pain after rads. Very few get away with pain relief straight away.
I’ve had quite a few different rads to my bony spread in 3 vertebrae, left hip/pelvis and shoulder blade. Sometimes I’ve had a one off dose but on the first occasion on my hip/pelvis, I had 3 doses.
I found that the pain did increase quite dramically somewhere between 4-7 days after the rads and by this I mean ended up having to take oromorph for pain relief. It was worse for about 3-7 days and I remember thinking at the time this was the wrong thing to do because of the dramatic pain increase but the pain went and auddenly I had no pain and I had all my range of movement back. It did take the 4-6 weeks that the rads cons told me aboout for me to really feel this was worthwhile. This was especially true when I had the pelvic/hip rads as I’d been in so much pain from the secondaries that I couldn’t believe it when it got even worse after the rads. However, previous to the rads, i had been unable to lift my leg up at all so couldn’tdrive as I couldn’t lift my leg up to put my foot on the brake and clutch!!! 4-6 weeks later I could lift my leg and it wasn’t painful anymore.
I’m sorry not to give you better words of encouragemtn but you’ve just got to hang on in there, take painkillers and if the pain worsens and your painkillers aren’t working then please see your GP, BCN or conc to get stronger tablets. It will be worth it in the end.
You mentioned about the rads as treatment but you didn’t mention if they were going to give you a ‘bone strenghener’ regularly now onwards. This helps to build up bone and stop the bony mets spreading.- biphosphonates. They can be given by infusion 4 weekly or there is an oral tablet which I know nothing about as I was on a trial and had the infusion rather than the tablet. I’m on zaledronic acid or zometa and have had no side effects. Pamidronate is another commnly used infusion. Some people do get achy bones and feel a bit flulike for a few days. They also tend to give you calcium tables to help strenghen and build up bones…If your onc didn’t mention this to you, then you should chase it up. It often takes about 3-4 infusions to feel the benefit though.
Sorry to have rambled on for so long. I hope it’s useful and I haven’t scared you or make you worry more. Hope the pain doesn’t last too long and you can get back to sitting comfortably again.
All the best
Kate
Hi Kiwi, hope you’re able to enjoy the warmer weather (at least I hope it’s warmer!) where you live right now. My hip fractured and I was then diagnosed so had a replacement and rads to kill stray cells then and also had rads to the sacrum this year. My sacrum pain got much worse before it got better so hang in there. A friend had similar fractures to you and things improved over the weeks. At one point she could only walk a few steps with a frame but she’s so much better now and no longer needs a frame. I guess you’ve been having bisphosphonates for a while? but agree entirely with Kate’s advice in her post. I’m on cycle 13 of Xeloda…I hope we both get a long time with it. Love Belinda…x
You’ve both echoed what I sort of knew to be true that things could worsen before they got better. Yes I am on pamidronate having it 6 weekly but didn’t know about taking calcium tablets, kate so thanks for that will chase that up.
Yes, Belinda the weather is warming up quite a bit here temperatures are getting to 24 most days, so looks like christmas will be a hot one.
thanks again just knowing others are out there makes things better.
Hi again Kiwi…I read (somewhere) that calcium tablets help make bisphosphonates more effective. I know on your infusion day you are meant to leave at least a 4 hour gap between infusion and calcium tablet as the tablet can inhibit the take up of the bisphosphonat. Over here I get Adcal D3 tablets I know others have Calcichew.
I was last in NZ in November 2002…don’t think I could go through that long flight now but we had a great time. Enjoy your warm Christmas, hopefully you’ll be feeling more comfortable by then…x