Hi everyone
I had a bone scan MRI and ct in March which diagnosed bone mets to L4 & 5, i had been having pain since before xmas. Over the last couple of weeks i have a more sever pain in my left hip and buttock to the point where i regularly wake up at night crying.
Can i ask can bone mets spread this quickly or is it likely to be pain from my new hormonals, letrozole.
I have a holiday booked to Florida in 5 weeks with the family and i need the onc to record that i am fit to travel, I am worried that if i say anything to him he will say i cant go.
Any advice would be great.
Thanks
F
xx
Hi Fuzzyface42
So sorry to hear that you’re having more severe pain now – has your onc prescribed any bisphosphonates for you? You can have either IV ones or tablet ones, and they really do help repair, preserve and strengthen our bones. Could you speak to a Mac nurse, or someone at your local hospice about the increase in your pain, rather than your onc, and ask if you can change your pain-killers? Finally, I would caution against travelling to the States without insurance cover for your BC (medical care is so expensive there), so hope you have the full whack on your policy. Hope your pain is sorted soon!
Marilyn x
Hi fuzzyface,
I can only speak of my own experience and would ask the same questionas marilf - are you being given bisphosphonates? I was dx with bone mets in 2002, I was put on pamidronate straight away and was also on chemo as I had a lot of lymph node involvement around my neck & chest area. My bone mets appear to have continued spreading before they stabilised as the scan done 12 weeks after pamidronate was started showed increase. Since then all scans have shown the disease to be stable. I was also put on herceptin in 2004 when my chemo options ran out. The pain you describe is similar to problems I have been having this past year.
Dawn
xx
Thanks ladies
Yes I have been on bonderat since the beginning of April, apart from that I am on Letrozole and Zoladex.
The pain really gets you down as it is always there, however night is the worst, i can’t lye on my back and now can’t go on my left side without increased pain so i keep waking myself up. I do have full insurance cover for the states but it doesn’t include cancellation. I don’t quite know how i am going to cope going round the parks, we have done it before and walked 90km over the week. no way i can do anything near that now. I really want to go as this could be the last time we make that particular trip and the kids are so excited.
I have an appointment with the onc tomorrow so i will mention it to him and see about getting in contact with the right person at the hospice for pain relief. Certainly cant keep going on this way.
Thanks again for your help
take care
F
X
Hi Fuzzy
I too have bone mets and at times have wondered if they have suddenly spread as I’ve had more aches but luckily not so much pain as you. Scans have shown this isn’t the case so I’d hope that is the same for you. Sounds like either nerve pain or possibly from the hormonals? As the others have said, check it out with hospice or another BC specialist with pain. Hope you get this under control asap as I know what you mean about the walking around the parks in Florida - this type of holiday is the only one where I lose weight 
Nicky x
Hi again F
So glad you’ll be seeing your onc today, and hope he can shed some light on what’s going on for you. I’ve been on Bondronat for over 5½ years, and have found it works really well for me – it did take a short while to start being effective, though, so you might just need a bit more time on it now. I have had three episodes of severe bone pain during that time, each time lasting two or three weeks, after which all returned to “normal”; the most recent episode was in January 2008 – by the time I had a bone scan, the pain had disappeared, but the scan results did confirm I’d had a bit of progression in the area where I was getting the pain (hip & sacrum). My theory (for what it’s worth) is that the Bondronat has “kicked in” each time, and reduced the impact of the progression for me, i.e. it’s done what it’s supposed to do. Hope this is also the case for you.
Just one more thought – the USA is generally very aware of disability and ensuring good access, and I would assume that “Mouse-land” and the other parks will have scooters & wheelchairs for their visitors, either free or at a small charge, so perhaps check out their websites now and/or e-mail them for some info?
Marilyn x
Thanks again for all your help. I saw the onc today who doesn’t think that it’s anything to worry about, he said that the bonderat can make the pain worse before it gets better. I am not sure i believe that this fully explains my level of pain but if it means we can go on holiday i will go with it and think again about things when we get back if the pain hasn’t improved. He is happy for my GP to change my pain meds in consultation with the right people, so i will try to get an appointment for asap.
Thanks for the tip about using scooters etc. Don’t really want to but unless the pain eases i may have no choice, kids are excited at the prospect of having somewhere to stash all the bags.
The onc plans to scan me again end of August which doesn’t sound too long so i just need to try and put it to the back of my mind until then. As i only have bony mets which are evident on radiology he doesn’t think doing tumour markers would be useful.
Thanks again for taking the time to reply
take care
F
x
Hi fuzzyface
just wanted to add to the wheelchair discussion.
A friend with back problems (not cancer) went last year to the Disney parks in Florida. He managed to find out that he would need a doctor’s note if he wanted to use one of the park’s wheelchairs.
He also found out , if you are in a chair you do not have to queue for any ride - sraight on.
Obviously this is second hand information so worth you checking it out. I can see why you might not want to use a chair but discuss with your oncologist if it would be a good idea
Ena x
Hi thanks for all your help. I have now seen the the doctor at the hospice and he has put me on oxynorm. They are titrating it to find the correct dose. The hospice certainly seems to be the best place for pain relief, it was good to have a discussion where the focus was pain.
I also saw the onc on Wednesday and he recons that the new pain could be down to the bonderat, the hospice doc is however not so sure as it is also tender. I am going to try and not worry about that and go on holiday. I am due another scan in August and that will show if there has been any progression.
I am seriously considering renting a scooter to get round the parks, thanks for the tips i will check out what i need to take with me before we go.
Thanks again
F
X