Hi @Gemini111; so sorry to hear about the spine biopsy test. Were you PIKA positive previously or is this a new discovery? How long do you think you will be on Piqray? Do keep us posted how your scan went. You mentioned starting Metformin? Does it help to rid of other adverse symptoms? Take care and thinking of you.
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Hi siggi
Yes I have just recently found out that Iâm PIKA positive. Metformin is usually started as the Piqray causes high blood sugar levels( itâs one of the side effects) blood sugars have to be monitored closely, also comes with the usual Nausea, fatigue, diarrhoea but high blood sugars are the main symptom.
I will keep you all posted as to what the scan shows and to how the new regimen is going. Keep well everyone xxx
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Hi Gemini111
Just wanted to share my experience of Denosumab. I was diagnosed de novo MBC in bones & nodes in Dec 2012, followed by in liver & lung later on. I started on Denosumab, a month after it was licensed in the UK (Dec 2012). I have had it 3, 4, 6, 8, 12 & 24 weekly over the last 10 years finally stopping it in July 2023 which was when I broke both my femurs. A surgeon in the Netherlands (where 1st femur break occured) told me they donât let MBC patients take it for longer 7 years, a surgeon here said 8, because it begins to work against you after so many years and you can get spontaneous breaks as I did. Apparently it stays in your system for a very long time. I never had any problems until the femur breaks.
Wishing you all the best with your treatment.
Helen
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Thank you for that advice it is really reassuring to hear that it can be tolerated reasonably well over such a long period of time. Itâs also lovely to hear that your doing so well as I have been feeling quite low recently and this message came at just the right time xxxx Thank you Helen and I wish you a very happy and healthy 2024 xx
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Hi @helen44, so sorry to hear about your femur fractures How are you doing now. What sort of treatment did you have to help with the fracture? I am 66 years old, taking Letrozole and Abemaciclib. My most recent DEXA scan showed that I have osteo in my hip and femur⊠sigh⊠my onc has recommended Zometa. I havenât started yet as I am still undecided whether to go for it as I have read some adverse side effectsâŠ
Hi Siggi
So sorry to hear you have osteoarthritis in your hip & femur. This must be an added complication in your situation. Zometa is the IV version of Denosumab, most oncologists advise Denosumab so it might be worth a discussion with your onc.
When I broke the femurs I was only given daily injections for 50 days after each break. These were to stop blood clots. I have had a lot of physiotherapy since April (time of 1st break). Now I feel pretty well, I am walking almost normally & I can manage stairs easily. My only problem is that I can only sleep on my back because of the metal pins in both hips. I am told this will ease though not sure when!
Wishing you all the very best with your treatment. Helen x