Hi @jessybessy - I will be amazed if you don’t think it’s easier than chemo. So many people are jittery before that particular op and then come out the other side pleasantly surprised. Then they come on here and reassure the next ones. You’re going to be ok. Rooting for you. XX
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Is anyone taking Alendronic Acid as well as Leterosole and AdCal? I was told last October to get a prescription from my GP but did nothing about it because I felt I was already too overloaded with chemical poisons. But I’m starting to wonder if I’m being stupid.
Hi @magl
I’ve been told I’ll be having zolendronic infusions in the future, however I have in the past had alendronic acid. I was diagnosed with inflammatory arthritis in my late 30’s and was on steroids for a couple of years. I had a DEXA scan which revealed I had osteopenia so for 5 years I took a bisphosphonate, initially the alendronic acid but switched to ibandronic acid which was a monthly tablet after I struggled with unpleasant heartburn (common side-effect). It was manageable monthly but a real nuisance with the weekly tablet. My subsequent DEXA scans have all been normal which is just brilliant.
My lovely Mum had osteoporosis after the menopause and sadly had several fractures as a consequences, so I know first had just how useful these drugs are. X
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Thanks MrsJ. I usually complain that doctors set out options then say “It’s your choice” even though I have no medical knowledge. On this occasion I’ve been told what to do last October and haven’t done it. Before all this started I prided myself on not taking prescription drugs but now I’m taking bagsful. This morning I’ve signed consent forms for a knee replacement that’ll happen months into the future but in the meantime I thought I’d better think about my bones. I had a DEXA scan to provide a baseline when I started on Letrozole and it showed I had osteopenia rather than osteoporosis but I’d obviously rather the bones didn’t deteriorate any further.
@magl I have Zolendronic acid infusions as part of my treatment and I was 54 at diagnosis, soon to be 56. I was told it not only helps treat or prevent osteoporosis or it’s precursor, osteopenia but also can help prevent cancer from coming back in the bones.
It is part of the bisphosphonates group of medications. I would assume as your Dexa scan said you were osteopenic that is why they prescribed. If it’s anything like my GP they would have received a letter and not processed it. If you want to start taking it give them a call but you may have to go back to your oncology/surgical team for another letter.
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That’s very useful NB. I was already heartened by the news from MrsJ that it can actually reverse osteopenia. I wish I hadn’t been so stupid now. This afternoon I started jumping through all the hoops in pursuit of a GP appointment. I’ve got through the triage process and now my request has been sent to the “doctors’ hub” rolls eyes and I’ll see if they’ll deign to see me. I know they were sent a copy of my letter saying I should take 70mg Alendronic Acid once a week but, as you say, they’ve never contacted me about it.
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Fingers crossed they read the letter and issue a prescription without too much fanfare.
Let us know how it goes
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You haven’t been stupid @magl.
I’m a firm believer that when we make a decision it was the right decision at the time. We have so much to process when we start this path and for much of it we are guided by the professionals to take the best route for us. We are allowed to pause along the way and decide if we want to veer in a different direction. We can back track and when armed with more facts we can make an informed decision and if it’s the route they advised us to tread, then we head down the original well trodden path.
As @naughty_boob said, it’s not just about the osteopenia, it has other benefits. I’m hoping that it will make my bones make old bones!
From my experience GP surgeries do not always act on Consultants letters, the onus is on us as patients to chase things up as safely like the rest of the NHS they are overstretched. Hopefully it will be straightforward to get a prescription given your circumstances 
x
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@naughty_boob . Any advice you can give me on calcium and d3. I was Looking into supplements a while ago but now have the bone pain due to letrozole. Ps. Changed my time taking letrozole and its helped slightly but feel ive aged in last 2 weeks with aches and pains
@hlc I was prescribed Calichew D3 by my team and take one every day. It may be worth talking to your team and asking if you need to be prescribed them.
I have an ongoing prescription for AdCal-D3 to go with my Letrozole. It’s just about the only drug I take that has no side effects. Just a lovely lemony flavour.
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Can gp prescribe or will i need to speak with oncologist
GP can prescribe. The oncologist gave me the prescriptions for the first lot then told me to ask the GP for prescriptions for Letrozole and AdCal. I asked for them online on an econsult form and explained why I needed them. The GP signed it off straightaway.
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It’s probably best to get the oncologist’s say so. If you rang the breast care nurses they might arrange it. Have you had a DEXA scan? If you’ve had one and you were lucky enough to have a normal reading they might think you don’t need extra calcium at this stage.
Hi @salbert . Trust you had a good parent’s evening and enjoyed yourself. So we really really pushed for the blood test yesterday and they wouldn’t budge saying that the blood test taken 12 days ago was sufficient. And then we requested and pleaded some more, the technician then agreed and we got the bloodworks done finally! And we were right, many indicators were not as up as we had hoped, but thankfully just enough to get the Kadcyla infusion. We spent the entire day in the hospital from 9am to 5 in the evening but thankfully we feel that something was done as per protocol. We have absolutely no dates on the radiotherapy plan and the teams don’t know anything about it too. So we just will have to keep following up. Keeping our fingers crossed and hoping that Kadcyla is kinder than EC-T. Taking one day at a time for now.
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I’ve been given an appt but it’s on the same date and time as my next Trastuzumab injection so I’ll have to ring up today and go through it all again.
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Thank you just had number 4 on friday just trying not to have to many wobbles, my legs are aching and my mouth is bothering me but its just dry. I keep telling myself i will be finished next month 
hope you are well xxx
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I’ve noticed you have asked about levels in lymph nodes and many of us haven’t heard of it.
I found this from May2024, I believe they are still active on the forum so you could post on the thread.
It might also be a good idea to call the BCN nurses to talk it through 0808 800 6000 Mon - Fri 9-4 Sat 9-1
Hope it helps
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@hlc are you on zoledronic acid? If so you probably won’t have a scan as they will say they are treating you already. That’s what I was told. I asked for a baseline scan and was told no, not protocol in this trust. Probably just about money.