Letrozole and BIsphosphonates + radiotherapy

Hi

Its all so much to take in. I waited till after radiotherapy to start bisphosphonates.

My scar still feels lumpy I think it's scar tissue and shooting pains could be nerves healing. I still get tightness and swelling but side effects of radiotherapy which I finished in June, exercise helps.

I am on Letrozole for first few weeks got joint pain but getting better now 4 months in. Be aware about trying to stay with same pharmaceutical company as this can affect side effects as they use different colours and fillers. If one suits you stick with it. My GP puts it on my repeat prescription. 

Good luck and take care x

Many thanks for your reply Janemb. You have put my mind at ease . I have read in other posts about the brand of tablets so I will bear that in mind. I think the ones I have currently are Accord so I will see how I get on with them. I must admit when you read the  possible side effects with BIsphosphonates it’s enough to put anybody off but I am willing to give them a go !
take care

NannaJ x  

Sorry should have said bisphosphonates Been taking since July as had some teeth to sort first. You can have an infusion or tabs . I have tabs as figured if bad effects could stop them where as infusion is in you So far finding them ok taking with big glass of water. Then get showered so upright and by time sorted can have breakfast . Seem a bit tired early evening but not too bad a bit worried about teeth as not great and drugs can effect healing. I had 4 out before starting as heavily filled and a bit loose. Not pleasant but needed sorting . Side effects are a pain but nothing can be worse than chemo can it????? Keep chatting it is a great site and makes you feel less alone and worried xx

Hi Nannaj

It is such a lot to take on after an operation and radiotherapy. I am only just after post-op so have all this to come. I just wanted to mention biophosphates. I have been on them for three years for osteoporosis. Like you I was horrified when I read up about them. The first one I was prescribed was Alendronic Acid, once a week. I stuck it for about six months but it made me so tired, joints ached and I just generally felt quite miserable, I just hated the way I felt.  I had made up my mind to stop taking biophosphates but my gp put me in touch with a consultant and I had telephone appointment with him. He persuaded me that the benefits to my bones were worth trying a different one. I now take Ibandronic Acid once a month and have had no side effects at all after 2+ years.  I think we are all different and react in different ways to medicines. The listed side effects that worried me the most were about my teeth and gums but so far no problems at all. Good luck with your future journey.

Evajean x

good Morning ! 
I’ve had my teeth checked and thankfully no treatment needed so all systems go to take the bisphosponates after my radiotherapy. I might give myself a little more time afterwards depending on the side effects f the radiation. 
My tablets are ibandronic acd to take once a day in the morning . We have to follow advice from our consultants but I also spoke with my brother who lives in the US and he has been CEO of a few of the big pharmaceutical companies both in the U.K. and USA so he has lots of contact with specialists. I needed reassurance from somewhere else about them as not all oncologists prescribe them in the U.K. I put this question to my radiotherapy oncologist   but he said I needed to ask the breast care nurses . 
My brother asked his colleagues and he convinced me that the bisphosponates are a necessary part of the cancer prevention treatment and is widely used in the USA . 
I’ll  give them my best shot ! 
It’s lovely chatting with you. 
NannaJ xxx

Hi Evajean

Lovely  to hear from you and good news re your BIsphosphonates. 
I have been prescribed ibandronic acid , once a day for three years to take alongside my Letrozole for 10 years . 
hopefully I will be lucky with the side effects but I am determined to give them 6 months as I know they will give me some protection . Every little helps . 
I’ve had my covid booster , flu jab …… such an exciting life . My calendar has nothing exciting on it but looking positive towards 2023 ! 
Im off to do my arm stretching now and practice my ‘ breath hold ‘  technique in readiness for radiotherapy on Friday . Busy life

take care, lovely chatting

NannaJ xx 

Hello That's good to know I am on same meds one a day just the same so should be oki did start mine every other day for two weeks just to see how I reacted. But on every day now and so far so good  take care x️

You make an interesting point about bispohosphonates  tablets vs infusion, ie easier to stop tablets.I've done the tablets for a while without major side effects but find them disruptive, eg  going on a group holiday where you can't choose breakfast time etc also running in the morning  I'm afraid I don't take them on holiday or on my main run day. n I started tablets after radiotherapy. I'm also taking Letrozole.

anyone else swapped to infusion?

I'm interested that you only take ibandronic acid monthly. I was only offered daily, which i find inconvenient after 18 months. could it be because it was for osteoporosis first off? Hope your post op journey is going  OK

anyone else taking a monthly dose?

Hi ,

I have just started taking ibandronic acid daily. I have had conversations with the BCN regarding having the infusion instead of the daily tablet. Our trust seem very reluctant to change them. I also queried the weekly ibandronic tablet and also there is a monthly one. My BCN said that the weekly/ monthly ones are for osteoporosis but my pharmacist seems to disagree. The daily ones are much cheaper than the weekly tablets so I’m not sure whether it’s a ‘cost’ thing. I suppose I have to rely on my cancer team to do the best thing for me regarding treatments. In fairness to them they have been involved in the research for using bisphosponates as a deterrent to keep the cancer from spreading which is why at the moment I have accepted taking the daily ones. 

I know it is going to be difficult at times but like Mondaymobster, I think I might not take them when it is not convenient . 
I will give them a few months but if I cannot cope with them I will go back to the oncologist team and have another try at getting the infusion. 

has anybody else come up against this issue please.

take care everybody.