Hello all, hope you’re all keeping well and looking forward to warmer days
l was diagnosed with TNBC in November 2022, all my active treatment is now completed, however my treatments (also my age 42) has put me into peri menopausal state. My Oncology wants to put me on Bishosphonates for 2 years l have the choice of either in the form of tablets or as a IV. Has anyone else been on or is currently on Bishosphonates and wouldn’t mind sharing their experiences also what options they choose, did anyone have any side effects? Starting any new medication gives me great anxiety, any advice would be much appreciated.
I had infusions every 3 weeks when I was having chemo. When I finished rads I went on to daily tablets. They were an absolute pain - how you have to take them. First thing in the morning, you have to stay upright, no drinks for a while, no food for longer. They interfered big style with my lifestyle - 7am swim meant I had to take them at 6am. I was waking up at 4am!
I was switched to 6 monthly infusions when I explained the problems the tablets caused me.
Just 1 infusion left to go in 2 weeks then that’s me all done and dusted apart from anastrozole for the next 7 years.
IMHO bisphosphonates are a drop in the ocean compared to all the other treatments thrown at me!
For the first 2 or 3 I felt like you do after a Covid/flu jab - bit achey after a few hours but an early night sorted that out. No problems/side effects at all after that.
OK so you have to go to hospital, have bloods done but that’s so much easier than the blooming tablets had on my lifestyle. I tend to get my bloods done the day before. For the infusion - usually in and out within an hour. I’m lucky I am 20 mins from my local hospital.
No brainer choice for me. Good luck with your decision.
I have been on biphosphates for 6 years due to a diagnosis of osteopenia probably caused by my meds. I had a review last year and the osteopenia, originally in all my bones, is now only in the left side of my neck, so they have definitely worked for me. I have had no side effects. I will continue on them until I finish with Tamoxifen next year.
I chose an IV since it seemed to be more easy on the system from what I’ve heard. So for me, I get one dose every six months for a total of four doses. My first dose went fine. Some mild side effects but nothing to write home about. But just that one dose dropped my ALP levels 35 points so for me it obviously is making a huge difference which I’m glad about.
I have them through 6 monthly infusion, and have had 4 so far. Personally I don’t have very many side effects. A bit achy but nothing horrendous. I usually have mine on a Friday and don’t plan much for that weekend in case I feel a bit rough, but so far so good.
A friend of mine had the tablets and found them a real faff, as someone else on the thread mentioned, the need to sit up after, nothing to eat etc.
xx
Hi,
Im on the infusion every 6 months for 3 years…2 down & 4 to go.
Was sick (vomited & fainted) after the first but no issues on no.2.
Ive got a bit of a needle phobia so asked if i could have the tablets instead. Oncologist said they switched a lot of ladies to the tablets during covid to avoid them having to come into the hospital but that evidence/studies (she didnt say which one/s) that infusion is more effective than tablets.
Good luck x
Hi i was on ibandronic Acid for just short of two years.
Im GranC and my story in on here, as is another from a lady with the same issues.
It should be in biphosphonates forum.
However, in the end the final decision lies with you and how you feel.
Good wishes to you
Thank you all for your sharing your experiences/ journey and information on Bishosphonates 🩷 your all amazing xx
I was thinking of starting on the tablets as lm due to go on holiday soon but now lm not so sure the last thing l want is to be dealing with the side effects while away. Of course everyone reacts differently but it’s not a risk im willing to take specially if im abroad. I wasn’t able to start my Bishosphonates sooner until l had all my dental issues sorted first hence the delay. Reading all your responses sounds like this treatment is not soo bad considering all the other treatments l have endure over the pass year. Xx
I have been on ibandronates for about 2 years due to osteopenia. I only take them once a month, and I’ve had no side effects. I had a choice of weekly or monthly. Monthly is much more doable! Dexascans have shone much improvement since I started the treatment. I’m also on Letrozole…another good reason for the Boniva.
I started on the infusion drip yesterday - Zoledronic acid (Zometa) - 6 monthly for 6 sessions over 3 yrs
Minor side effects - a little tired & early night.
I have enough tablet# to take on @ daily basis so the IV route was a no brainer
Hi ladies, I am 5 years from my mastectomy and lymph node clearance surgery. Had chemo and radiotheraphy, followed by 6 monthly infusions of zolodronic acid for the next 3 years. After the first infusion I had terrible diarrrhoea for about a week and really was not looking forward to the second infusion. However I had no further upsets after that and no other side effects apart from general tiredness. I think all our bodies react in different ways. I now have to take Letrozole for 10 years. (Side effects on that are not so good for me, but that’s another story.) Wishing you all well Take care.
