Bisphosphonates for breast cancer.

[Dolbycat]

I am currently in the last week of Radiotherapy as the final stage of treatment for TNBC following Chemo and mastectomy surgery (including lymph node clearance). I had a review yesterday with my Oncologist about moving on following Radiotherapy. As I am triple negative there are not many preventative options available, but he has advised me to consider Bisphosphonate tablets to help prevent the cancer from spreading to my bones. Having read all the info he gave me, I have made an appointment to see my Dentist next week as advised and I am going to ask to be prescribed the Bisphosphonate tablets at my next Oncology appointment. I was wondering if any of you lovely people have been prescribed these tablets, and your experience of taking them. Hope you are all coping well with your treatments and finding time to do things that make you happy.

[Debs1962]

Hi

I take them as when I was diagnosed with breast cancer in 2015 before I started letrozole then scan your bones dexa scan for osteoporosis, I was shocked to find out I was had osteoporosis as was only 52, so now I am on them as well as calcium and vit D, I haven't had any problems with them, I take once a week which is 70mg I think, you maybe given a lower dose.

It is worth getting them to check your vit D levels as there is a link between low vit D levels and cancer, also bad for your bones, I have had mine checked recently and considering I have been taken vit D for 2 years my levels are still on the slightly lower side, so I now take a bit more vit D.

when I was diagnosed my husband asked the consultant if I could be out on the alendronic acid because he had read about the research regarding it protecting the bones for cancer ( he is very up on medical research) so was pleased when I was having it.

Good luck Deb x

[Dolbycat in reply to Debs1962]

Thanks Debs. This is very encouraging to hear. I have been on Fultium- D 800 vitamin tablets for about a year now and they are checking my levels again before prescribing the bisphophonates. I researched the drug but was concerned about the side effects. Hope you are well and thanks for your reply. x

[Hidden]

Congratulations on coming to the end of your radiotherapy. I was diagnosed Letrozole, and like you I had a bone scan (a year ago ) got my 1st appointment with the bone specialist today to see what’s going on, been taking Alendronic Acid and vitamin D, as recommended by my consultant, so will let you know the out come. Good luck .xx

[Dolbycat in reply to Hidden]

Thanks Parker, it will be helpful to follow your progress. I have 3 days left of radiotherapy and will be ringing the bell to signal end of my cancer treatment on Friday. It's been a long haul but looking forward to taking back control. Good luck with your appointment today hope all goes well. x

[Linkj]

Hi Dolbycat

I have invasive Grade 3 her 2+ve BC and started Bisphosphonate infusions with my Chemo. I had them every 3 weeks then 6 and now 12 weekly,still by infusion. They will reduce to every 6months for 3 years. As far as I know no side effects but next week is my first one without chemo. There was a lot of publicity about them recently on Woman’s Hour and in the papers saying what a cheap effective way they are of preventing bone metastasis. I believe they are only prescribed under NICE guidelines if osteoporosis or post menopausal women taking oestrogen suppression, I.e. anastrozole but results are looking so effective that they want all BC women to have them. They are cheaper by infusion but with cost of going to chemo unit cheaper by tablet unless you are going already with Herceptin say. My Dentist knows all about them and I had some dental work before starting, if any future problems I am meant to skip an infusion and time it, not sure when in the cycle.

So good luck with your treatment and great that you are getting them as the evidence is strong.

Lin x

[Dolbycat in reply to Linkj]

Thanks Linkj this information is really helpful. I had my chemo first in my treatment plan, but now they are recommending the Bisphosphonates in tablet form as I am triple negative and post menapausal. The research I did was quite positive and relatively new research to prevent the chances of the cancer spreading to the bones. Every little helps so it seems the right way to go as my primary cancer was aggressive inflammatory stage 3. I have a dentist appointment booked to sort out my teeth now my main treatments have finished. Good luck with the rest of your treatment, hope all goes well for you. Take care. x

[Linkj in reply to Dolbycat]

Hi Dolbycat, good to hear that we are having the best. I had a mastectomy, followed by FEC-T and finish my radiotherapy on Friday. Fairly tired but celebrating with fish and chips Friday night with dear supportive friends. We are taking a bottle of champagne as I feel like celebrating and fish and chips with champagne sounds mad enough for this whole mad process !!

Lin x

[Lorraineam]

I have recently started on these (8 days ago). The reason is that there is an area in the skull which they aren't sure is cancer or not, so are erring on the side of caution. So far I have had no side effects from them.

[Dolbycat in reply to Lorraineam]

Thanks for the reply Lorraineam, I feel the same about accepting their advice. Good luck with your treatment. Take care. xx

[Lorraineam in reply to Dolbycat]

You too x

[chromodoris]

Hi. I've not had the treatment yet, but my oncologist has included bisphosphonate infusions every six months for three years as part of the treatment plan. He is co-author of a paper regarding this and seems to think there is a definite benefit for node positive cancer. Good luck with your treatment and well done for getting this far.

[Dolbycat]

Thanks Chromodoris for your reply. They have recommended I take the tables for 3 years and the consultants seems very enthusiastic about the research and positive effect the tablets can have. Good luck with the rest of your treatment. Take care. xx

[blue_sky1]

I take alendronic acid after being diagnosed with osteoporosis at the age of 55 and have had no problems with it at all. GP mentioned there was researched showing a beneficial outcome re likelihood of bone metastases,so that's good new. Best of luck xx

[Dolbycat in reply to blue_sky1]

Thanks for your message Blue_sky1. I am feeling quite encouraged now to start the tablets. Hope you are keeping well. x

[Surviver]

Hi

I hope you are going to be okay what I had was nothing compared to you

I had lumpectomy, lymph nodes removed, radiotherapy and on tamoxifen for 5 years with the view to staying on it for another 5 years

Loads of awful side effectfrom the tamoxifen, small price to pay I'm alive.

Please let me know how things go with you, thinking of yyou

Big hugs

Janet xx

[Dolbycat in reply to Surviver]

I am doing ok thank you. I have decided to go with the advice and try the new tablets to help prevent the cancer spreading to my bones. I think this is the sensible thing to do as anything that help is of benefit to me in my situation. I hope you manage to get your side effects under control. It can be difficult to decide what to do when the side effects sometimes out weigh the benefits, I have had this happen to me and it was horrible. Good luck and future health. Take care. xx

[Susan-o]

Hi. I was diagnosed with TNBC in 2015, had the chemo (terrible time with hospitalization after every treatment, anaphylactic shock with change of chemo, blood clots on the lung, and continuing peripheral neuropathy). Now had 1st clear year but diagnosed with osteoporosis. Have so far been given 2 sorts of Bisphosphonates but had to stop both due to diarrhoea. Even had 'accidents' whilst out. Due to other things going on gp not willing to try any more oral treatment so now waiting to hear from my endocrinologist. Would have helped if the gp had written when they said but its been well over a month now and the letter has only just gone. Also getting over spiral impacted fracture of left humerus done in Feb 2017 (due of course to OP) - after having 1 year off because of BC only to then have to have another 9 weeks off was depressing. Only started to drive again 2 weeks ago - from supermarket to home = 1 mile and arm was very uncomfortable). I do want to have Bisphosphonates but, unless the diarrhoea can be controlled, I don't see how I can. I can't live by taking Imodium every couple of days for the rest of my life. Sorry for this extended moan - not having a very good day today. Good luck with your Bisphosphonate treatment - I hope you have a much more positive experience than I have. Xxx

[Dolbycat in reply to Susan-o]

Thank you for sharing your experience, it sound terrible for you. This can happen sometimes, I know that I have had a bad reaction with other meds and had to stop them. I was prescribed something for my peripheral Neuropathy which made my legs swell like balloons, yet other have had a good result. I think the prevention of OP is very important to me , so I am willing to give the tablets a go. Good luck with your situations, I hope they find a solution. You must be devastated to be off work again. I am not rushing back to work just yet, I have endured 8 months of treatment and put my body through hell, it needs time to recover and get back on track. Hope you are blessed with some good health and recover your health to start enjoying your life again, take care. xx