Infusions

Its probably bisphosphonate infusions. I start ribociclib after my radiotherapy and also bisphosphonate treatment which is zelodronic acid.

Is it just a one off, please. I read that you said  you started treatment, which included the infusion, wasn't sure if only one lot or regularly, if so, can I ask how regularly that would be, please. Sorry but not had anyone go through it with me, yet, although I am sure they will do when I go there. Thank you for your reply

I will be on ribociclib for 3 years and the infusions every 6 months for 3 years. I was given an option of an oral tablet, but I figured that I was already taking enough orally, so would be easier to have the infusion once every 6 months. 

Thank you so much for your reply. When they say infusion, I take it that means a line to put in. Sorry if I am being a bit thick, just a bit of a shock as only thought I had to have the ribociclib tablet, so new to me.

Did you/ do you have any side effects. We are supposed to be out all day, the day after and now I am worrying in case I have a reaction to it. Thank you again 

Hi Countrylass,

It’s likely to be Zelodronic Acid, to strengthen your bones, as you’re taking Letrozole.  It’s also to prevent any microscopic remaining cancer cells invading them.  

I was a bit hesitant to add yet another thing to the mix, but as my oncologist said, it adds a further 1% cure rate, and helps to prevent osteoporosis going forward.

For me, it’s one infusion every six months or so, (my oncologist says it’s not time critical, give or take a month), for three years.  I’ve had one already, and the actual infusion only took an hour, but there was a bit of faffing beforehand, with an ECG, and some other bits, that might not apply to you.  

The best piece of advice I received (from someone who’d already been there), was to take Panadol two hours before, and then continue as if you have flu for a day or two, as the infusion can cause flu like symptoms in some people for 24/48 hours.  However, after the first one, it seems symptoms are minimal for the remainder.

My line was in the back of my hand, which is not usual, but I’d had so many blood tests in the previous weeks, they didn’t want to risk collapsing a vein by using the usual place.  My nurse was so good, I didn’t even realize the line was in.  I could have kissed her!

I’ve just started my fourth cycle of Ribociclib, only another 32 to go after this one!  If you want to ask anything else about my experience with Zelodronic Acid, please do. 

Pollyanna x

That's so kind if you, thank you, and it's definitely answered a few questions I had.

I take prescribed vitamin C with D included to strengthen my bones, as had a bad fall, a couple of years ago and they confirmed I had osteoporosis.

But I also have to take alandronic acid with those tablets, these ones are once a week.

I am sure they will sort it out but think, maybe I will ask them to change the appointment to a few days later as will clash with another event we have which cost quite a bit of money, by my niece, for my birthday. 

I hope your treatment goes well and wish you a full recovery that gives you many healthy years, ahead. 

You helped me with my queries and I am very grateful to you

Thank you very much

I haven't started ribociclib as yet or the infusions. I start radiotherapy on Thursday and this will follow. Ive just had meetings with the medical oncologist who has explained this to me already. This is probably what youll have at your appointment. Always good to have the knowledge beforehand, so youre not completely bombarded with new information. 

This has helped me also. Thank-you! 

Your reply was so helpful and certainly useful.

I phoned the Breast Clinic today and they said I don't need to have the infusion as already on Alandronic Acid and if I were to have the infusion I would be overdosing on it.

They hadn't picked up on the fact I was taking this medication.

So my sincere thanks to you for your info and  and help, which is very much appreciated.

Vest wishes to you and wishing you good health in the future x

Hi CountryLass,

Thank you for your response and kind words. Glad to be of some help.   I’m delighted to hear that you can now enjoy your day out with your niece without concern, having spoken with your team.

Someone was very kind to me in sharing their experiences during the early part of my treatment, so if I can, I try to repay the favour, by posting here.

My very best wishes to you too, and Happy Birthday!  I wish you many more happy and healthy ones.  Enjoy x.

As an aside, I posted about Ribociclib and Letrozole a few weeks back.  Give it a read, it might help you feel more comfortable about giving this drug combination a go.

Pollyanna x