Hi everyone, haven’t beenon here for a while, but sadly have just been dx with bone mets. This was picked up purely by chance when I had a chest CT scan - I’ve been coughing badly - and although it showed the chest was completely clear, there were problems with my spine. So had a bone scan and the results are that I have numerous hot spots on the spine and hips and ribs. I have bene put straight back on Femara and am waiting for an out patient appointment for Zometa intra venous drips. Have any of you got any experience with this regime. I am wondering how my veins are going to cope as I have bad lymphoedema in one arm, so only one arm is good for any tests/injections/drips. Any replies would be greatly appreciated.
Hi Birgit,
What a blow! sorry to hear that you have this dx - I suppose it was fortunate that they were doing the scan re your cough that they did find this problem! Do come and join in on the Bone Mets thread " Bone mets - please join in". There are a lot of posting there and I hope you will find some encouragement from it as well as a lot of support from other members. I was dx wth bone mets in 2002 and have been on most of the different bisphosphonates - currently on zometa. As you will need bisphos permanently now have you thought of asking for a port. THis is a device that lies under the skin so nothing is above the surface. They can used it for any iv stuff and taking bloods. The more modern ones also can take the contrasts etc. for scans. Some hospitals do it under sedation, others with general anaesthetic. If you google port there are a number of posts on here about them.
Dawn
xx
Hi, sorry to hear your diagnosis. I was diagnosed with both bc and bone mets in 2003. Still doing ok. My veins are very troublesome and for the last few years I’ve been on a tablet bisphosphonate instead of IV’s, Ibandronic Acid (Bondronat.) So there is an alternative. Good Luck, x
Hi Birgit, re post this on the Bone Mets - please join in thread and you will gets of replies. I am on zometa every 8 weeks and it is a very good drug. Only takes about 40 mins too.
As I say you will get much more response on that thread x
Suzanne
thanks for your replies. I seem to have trouble finding the bone mets thread. I typed bone mets into the search facility, but only seem to get general posts. I have not been on here for so long that I am rather confused about the changed site.
Hi Birgit,
Not sure if you are on just now but I have bumped up the Bone Mets thread for you. If you go to Latest Posts on the list of forums on the left, it should be fairly near the top. If you are signing in later then run your eye down the list of latest posts till you come to it. The other way would be to go to the section called Living with Secondary Breast Cancer - then just to confuse you the first forum in that list is of the same name. Our Bone Mets thread is in there - the same section that this thread is in. Hope you find us soon.
Dawn
xx
Hi Birgit
I am sorry to read about your new diagnosis, in addition to the peer support you have here please do use the helpline for further support and a listening ear if you feel it would help. Lines open 0808 800 6000, weekdays 9-5 and Sat 10-2 and our team are here for you.
The following link will take you to the BCC secondary information page, here you will find further support ideas too:
http://www.breastcancercare.org.uk/secondaries
The thread you were after which Dawn has kindly bumped is here:
http://www.breastcancercare.org.uk/comment/2038631#comment-2038631
Take care
Lucy
Hi Birgit,
You can also choose to have a PICC line if you prefer.
There is also a new drug called Denosumab, which is a 4 weekly injection. I was on IV Zometa and only switch to this new one recently for quite a few different reasons. You might get some flu like symptoms for the first 1 or 2 IV Zometa if you choose to have it. Also make sure you mention to your dentist that you are on it.
I have LD in one arm, too. So dreaded the hunt the vein every time.
I visit/read the bone mets thread often, but don’t post very much now.
Any questions, just ask.
Take care Mxx
thanks girls, have found the thread now and will post on there.