Thanks for all your posts. I am going for radiotherapy preparation on Wednesday so hopefully it will start soon afterand then I can stop taking the nurofen for a while. Will definitely push for the IV bisphs and keep my fingers crossed that the Faslodex will stabilize everything for a time
Good luck to you all with your treatments
I was dx with breast cancer in July last year and had double mastectomy in August.... then in September was dx with bone mets and in October I had a proximal femoral replacement (glorified hip replacement - they replace a bit more of you thigh bone though) Mymain bone tumour was in all of the neck of my right femur, and I still have mets in my spine and my left pelvis......
I am now on Zoladex and Tamoxifen as my cancers are hormone fed. Also on calcium tablets and Ibandronic acid (bisphosphonates)
Big Scan in April to see if it's all working.
They told me that i shouldn't be weight bearing on my bad side because of the high possibility of fractures to my right hip - so I understand how scared you feel. Once you get your scan and you know EXACTLY what you are fighting it will get better.....
Keep your chin up xxx
Just this morning completed 5 days of rads for mets to the pelvis in particular the sacrum (very low down) also had a one off high dose to the left femur up high near the hip. Didn't ask if I was in danger of a fracture (maybe I should have), but they did send me for xrays just before the rads to make sure things were stable. I am also on IV pamidronate don't think they give the oral kind here in nz.
I was diagnosed with breast cancer September 2007 and had WLE and lymph nodes end September. I was told I would have either Rads or Chemo after. Had further tests in October and told November 2007 that it had gone to my bones. Everywhere where I had aches thats where I had it. So Pelvis, rib cage, spine and other places.
Onc said it had gone too far for Chemo so I am on Tamoxifen and thats all. The IV biophosphonates are tp stop the bones from fracturing.
I think I might ask about MRI scan.
Can't believe your Onc didn't want to give you rads. That is the usual treatment for pain relief and to kill the tumours. Can I ask when you were dx with bone mets? I have been seeing the Onc every three months since dx in Sept 06 and he has been monitoring with blood tests only and waiting for me to let him know when I have any pain. An MRI scan will show exactly what is going on in the pelvic region and with hindsight I wish I had requested one in Sept 07.
My onc didn't want to give me rads but my GP contacted him as I was in so much pain and he agreed to it. I have not had an MRI in fact I haven't seen my Onc since just before Christmas. My next appointment is mid March.
I do feel better than before my operation so I just hope he is pleased with me when I go back.
Thanks for the post. Will speak to the Onc about IV bisphs when I next visit. Will be pleased when I have had rads to help with walking again. As you said previously I have been walking like a 70 year old at times.
Hi Geobar I am having Zolendonic acid in IV form also known as Zometa. There are
other people on here who take the tablet form it would be good for them to comment too. With IV it takes between 15/30 minutes and then you come straight out. I am sure it is this that is helping me. My oncologist told me I could break a bone at any time and this strengthens the bone.
Thanks for your post. Can I ask what type of Bisphonates you are taking as I don't think the Bonefos have been successful. As Dawn said it is probably time for a change to the IV ones. I know that there is a trial which is comparing the IV bisphs with oral to see which are most effective. Have you had an MRI scan to monitor any further progression?
I have an old fractured pelvis. I don't know when it happened and my GP was not worried. My oncologist thinks its part of the cancer, but he was the only one to say that. I think I trust him more. I had rads for 5 days and it helped. I had difficulty in walking and my walking was like "a 70 year old woman" according to my daughter!
The rads and the Bisphsphonates have helped me.
My pelvic mets never went - I had rads to one side initially because of pain, but I find the bisphos - pamidronate controls it very well. After those initial months I had no further progression - in fact the mets in my skull, ribs and collarbone no longer show up on bone scans, althought the damage is evident on MRI & CT. My spine - and most of the vertebrae are involved, and hips (pelvis) aren't good, but better than they were. I am just careful what I do and can get around reasonably well.
Nice to hear from you. Thanks for the advice re bisphs. Will push for a change to IV. Onc has been a bit laid back really rather than pro active, a case of "if it aint broke, don't fix it" regarding doing scans etc to see if any progress rather than waiting for me to tell him when I have pain. ( We have pain on a scale of 1 - 10 every day and live with it ).
Did they heal your pelvis with rads only or was an orthopaedic approach ever considered?
As Belinda suggests - I would ask to be put on zometa - that is the newest of the bisphosphonates and I am told the strongest. The mets to my pelvic area was extensive - started on only one side but in the first 3 months I was on pamidronate it spread extensively to the other side as well, and to the proxymal femur. Over the 5-6 years I have been on the drug there has been some improvement. I know that no two of us are alike - and my bc is not hormone led, but I suspect they had you on bonefos before because it wasnt that widespread. Time for change I think!
Hi again..I'm still a bit crocked..I wondered if your onc was thinking of the sofea trial? It's trial 29 of the breast cancer trials on www.cancerhelp.org.uk
Hope you start a new plan of action soon..x
Am still on the bonefos but think that the cancer is working harder that they are. Not sure if Onc is going to change me to IV ones.He is talking about putting me in a trial for Faslodex where every third person takes Extesemene. Just feel frustrated because am still on Arimidex until he can sort out the trial. Seems he is having problems with the local PCT (no surprise there then) over the funding.
For the first time this week I have felt really down probably due to the lack of mobility. He didn't show me the scan report and to be honest I don't think I wanted to push it.
I have been told not to pick up my granddaughters which is easier said than done. The older one understands she's three and she likes to use my walking stick as a toy but the youngest is only 19 months.
Encouraging to read about the lady who had a plate put in. I have tried looking on the web for info but can't find anything suitable hence the post.
Thanks for your reply, hope your feeling better yourself now
Love Barbara x
I'm sorry to read your news Barbara. I've had a hip replacement but reading of other's fractures here over the years, particularly sternum and pelvic, I (think) bisphosphonates help heal, usually after a course of rads. I remember a lady here having a pelvic fracture and after a spell on crutches and another bisphosphonate the fracture did mend. I think someone else had a plate put in too.
Are you still on Bonefos? Not many of us seem to be..although I know it's used a lot for osteoporosis patients. I wonder if you can change to Zometa or Ibandronate instead?
Was dx with extensive mets to the pelvis in Sept 06 and they were treated with one blast of radiotherapy and Arimidex and bonefos.
Had results of MRI scan yesterday which had shown the cancer is active again in the pelvis plus new spot on lumber region of spine and the Arimidex has stopped working. Onc has always been quite upbeat when I've seen him in the past but he seemed cagey yesterday when I questioned him about treatment to support the pelvis (other than 10 sessions of rads due to start soon).
He says he will have a word with an orthopaedic surgeon to see if anything can be done. When I asked if there was a possibility of fracture he said yes and that scared me. If the pelvis crumbles there is nothing holding you together is there?? Didn't pay much attention in Biology lessons so is there anyone else out there with similar mets (Hip replacement not an option) who can give some reassurance.