Bisphosphonates

Hi have a read on my profile for my story at present I'm two year in to the three year bisphosphonate . So 4 down Two to go finishing 2022 .

No 4 was two weeks ago the first one without any other treatment involved . Easier to define any SE ...a bit fluey , and a short bout of constipation after first week all minor and manageable . 

One thing I did find this time  was I had injured a tendon back of knee and was getting a lot of leg / bone pain . The extra leg pain disappeared after the infusion ..could have been coincidence but infusion had been deferred for a month because of dental treatment . 

Personaly I would go for it as the benefit seems to outweigh any problems . You're right in saying it's used for post menapause I'm 72 now . 

Good luck feel free if you have more questions 

Thank you Margaret! Xx

Hi MollyBee

I am having Bisphosphenate infusions too,  one every six months for three years. I had one in February and the next one is next week. No particular side-effects to report. It is to reduce the chance of later recurrence in the bones. It has been a standard treatment for osteoporosis, before it was used for us BC ladies.

I am 65 and have had same as you: neoaduvant chemo, lumpectomy and radiotherapy. I am HER2+ & oestrogen +, so also getting targetted treatment with Herceptin and Perjeta, and Letrozole[for 5 years].  Each one of these individually ups my chances of survival. My Onc explained it all and gave me the % extra chance of still being around in 10years from each.

I am so grateful to be getting all of this evidence-based care on the NHS. Given that I am eligible for it I wouldn't dream of turning any of it down!

Take care and all the best to you.

Wallydug

Hi, I am on daily tablets of Ibandronic acid, since March. No side effects. My bone scan showed Ostepenia SO am hoping this will slow or reverse. It may be worth getting a bone scan first.  I am on AI's as well. Good luck. 

Thanks Wallydug, great to hear. And I totally agree with the sentiment that we are incredibly lucky to be able to have world class treatment on the NHS. 

Good luck to you too

MollyBee xx

Thank you so much Netax2. Very best wishes and good luck to you too

MollyBee xx

Hi are you having daily tablets or infusions? I have just started tablets - for 3 years - after lumpectomy, 16 sessions of radiotherapy (7 to go) and starting Letrozole. There is quite a strict regime for the tablets, empty stomach, 200 mls water, remaining upright for at least 30 mins. Have not quite got the hang of all that yet

Best wishes to everyone

Mondaymobster

Hi there. I’ve not started yet, but I think I’ll be going for infusions as I have another drug to take for MS (go me) that requires a full stomach twice a day. Could get a bit too complicated if I go down the tablet route. Hey ho! 
best wishes to you 

MollyBee xx

Hi, I'm on the infusions every 6 months for 3 years too. Had my first one when they discharged me from oncology about 6 weeks ago. No particular side effects to report. They did say your bones may be sore for a couple of weeks but I didn't experience that - I think that is more likely if there is repair to be done. I am mid-40s and regularly run alongside other strengthening work so think my bones should be fine.

I did wonder why I was going on it as it seemed to be to prevent osteoporosis and I hadn't had a bone scan, but oncologist told me they do it as preventative nowadays when you're taking hormone therapy (I chose zoladex and AI so now post-menopausal) plus the double effect of it being used to prevent cancer coming back in your bones. That won me over!

I had to have bloods done and a dental check before getting it done. Although it is good for your bones, it isn't good for your jaw if you have to have something done to it, so they like you to have nothing lingering in your teeth around the time of the infusion.

It was very straightforward, pretty quick and not really noticeable side effects. I thought I had very slight chills for a few days about a week after, but so slight that I barely registered it until I remembered I'd had the infusion.

You have to take high doses of vitamin D and calcium for 4 weeks afterwards, which they give you.

Thank you for the info! I’m definitely going to go down the infusion route I think. 
This community is great for being able to link up with others. Love it! 
x