Thank you for your sound advice-im thinking put up and shut up at mo-and must admit back pain is subsiding a little thankfully.
Pink Dove- Can I ask -does being BRCA2 mean you get access to different trials -Ihave just found out that I am too but my onc says it makes no difference to my treatment. The Geneticist has now made my onc authorise mammograms and mri scans which he refused before but would be interesting to know if there are other options open to me, in the event of need arising.
I would think that your oncologist would be the best to advise re that. My feelings on treatment are that if you're responding well to a particular one why fix what isn't broken.
I am in that position re Xeloda - I know I can go on a PARP inhibitor trial because I'm BRCA2 but my feeling (and that of my oncolgoist) is to wait until such time as the Xeloda stops working as I'm tolerating it well.
I switched from the daily Bondronat to monthly intra-veinous Pamidronate recently. I found the morning Bondranot regime, already annoying, became useless when I started to get nausea first thing in the mornings and needed to take anti-nausea med. I found the switch a relief with a more relaxing waking up routine.
At my hospital you tend to get Zometa when you've had further progression..so I think it must be the 'best' of the bunch..Belinda...x
So is it wise to wait until the one your on becomes ineffective do you think? So that there are other options if it happens?
I was on bonefos to start with (another tablet form) and then changed to Pamidronate. I have problems with my veins but have had a portacath fitted for the last 4 years and it's no problem at all.
When Pamidronate stopped working (at the beginning of this year) I've been switched to Zometa which is a stronger infusion but also only takes 15 mins instead of 90 mins that Pamidronate does.
I find the infusions much better as I don't have to worry about when to take the tablets especially as I'm also on Xeloda.
Thank you all for your comments - it does give me more info -I am reluctant to change because bondronate seems to be doing its job. Not sure about infusions -sounds painful-and if it involves veins -prob prefer to stay as I am -bit of a wimp with veins! With regard to my painkillers -I can only take ibuprofen (cant Spell it) or paracetamol as other painkillers affect my head really badly -feel very drugged up even on co-codemol. I think I will speak to my onc at next meeting -not that he really seems concerned about my pain -but its worth a shot!
Thanks again for your help
Another thought, I have an idea that ibandronic acid is available as an infusion as an alternative to tablets... worth asking onc about?
Hi Debbie, I agree with Mrs Blue..I too am on Bondronat and wouldn't want to change to Fosamax...what about the bisphosphonate infusions? Zometa or Pamidronate? I was on Pamidronate, monthly infusion, for over 2 years and only changed because my veins are not great and I had several attempts by staff trying to infuse..then my veins would collapse.
I have nothing against GPs -- mine is a great guy who gives a great general practitioner service. But they really don't have specialist knowledge about BC mets and/or our treatments, so you might want to speak to your onc or someone in her/his team about your concerns. I have liver & bone mets, and have been taking Bondronat for five years (was a "named patient" before it was licensed), so I know about the faf of fasting, sitting up & waiting to take other drugs or eat/drink that goes with this drug. A thought -- I wonder if your pain relief might need reviewing, if you're having a lot of pain before you can take your morning painkiller? Again, if I have new or uncontrolled pain, I speak to my onc team or hospice doc/nurse about this, as they're the specialists -- or try your Mac nurse, who will also have experience in dealing with our situations.
Hope you get this sorted out quickly, and that you will be feeling better very soon.
Debbie, I have bone mets and am now on Bondronat (ibandronic acid) and Femara. I had previously taken Fosamax (alendronic acid) for osteoporosis, before I was diagnosed with bc.
Two reasons why we need Bondronat: (1) Bondronat is a much stronger drug, and (2) as far as I know, Fosamax is only licensed for osteoporosis, not for bone secondaries from breast cancer.
I've not heard of weekly ibandronic acid but there is a monthly tablet, I think called Bonviva, again for osteoporosis not bone mets.
I'm also on a daily dose of Bondronat as well as Aromasin. Last time I was at my GP she told me that if I wanted I could go on a weekly dose of Bondronat (or maybe it was Aromasin!) if I found that easier. I'm okay at present with my daily dose so I'll stay as I am, but there have been times in the past when it's been difficult to wait out the time before I could take painkillers. In your situation, I think I'd been phoning my onc.
Good luck to us all.
Wonder if you can help. I have mets to bones and liver, and currently take Bondronate (Bisophonates) daily. This involves not eating 6 hours before, waiting an hour before eating after taking etc. I have a lot of pain at moment in my back and shoulder, and find it hard to wait all this time to take my painkillers, which then take an hour to kick in. My GP suggested I ask my ONcologist about FOSAMAX 70mg which is taken on a weekly basis, and this would resolve my problem. However, as I am currently okay on Bondronat, and having few side effects, or progression of the cancer, I am really reluctant to change my medication. Have any of you taken this drug or switched to it? Your feedback would be most appreciated.
Thanks Debbie xx