I can understand your fears. We go through one thing and then another, worrying about and trying to dodge the side effects.
No one can give you a solid guarantee that you won't end up with any of the very rare side effects. However the chances are small. Hopefully you got your teeth checked and any work needed to be done has been done.
As my earlier post in this section, I have found the infusions ok. I am due my sixth and last for now in Jan. My hip and jaw are still intact at the moment.
Chick 🐥 X
The side effects don’t make for good reading do they!? But I still went ahead.
If it helps at all my experience is as follows. I am 54 er+ & HER 2-, had a WLE and 17 nodes removed with 2 showing posotive. I was diagnosed with endometriosis at 27 and due to it taking so long to diagnose I was so badly scarred that I was put on Zolodex monthly injections and livial HRT for 23 yrs. This has left me with osteopenia (and maybe cancer??? though obvs no one can say that for sure). When speaking with my onc he explained I was being offered the bisphosphonate to protect my bones and also help reduce by a small percentage the chance of recurrence within the bones. He also said that the amount that I would be given is less over the 5 years than they give to some people with bone mets in 1 year therefore the severe long term effects would be very unlikely. My GP also told me she has a lot of patients on these infusions and has seen only 1 case of the jaw being affected an d the person involved had other contributing factors. Although no one can guarantee that nothing will happen I felt the benefits outweighed the possible effects. I had a check at the dentist and she saw no problem and says she has a good amount of experience with people on this medication.
So I had my first infusion and I still have my jaw as it was and all my bones in their one piece! I started to feel the effects of the infusion about an hour after having it and by night time had full blown ‘flu’. I took paracetamol and it lasted about 2 and a half days. After that I had a couple of days feeling bit tired and sickly and then headaches for another 3 days which I was told more likely a virus than anything to do with the infusion. (Not convinced). Next time I will take ibuprofen before and carry on with it till feeling better though as per someone before on this thread I have read it’s the first which is the worst.
I certainly intend to carry on with it unless told otherwise.
Sorry to go on a bit and I wish you minimal short term side effects for the infusion.
I am about to have an infusion of this. On 30 October. Have read side effects and mildly terrified. Can anyone who has been through it reassure me that my jaws won’t disintegrate or my thighs fracture.
Joemic, I get you when you say that you get easily affected because you physically can't do what you want to do.....
The Oncodx (Oncotype dx test) is a test which tests your tumour and determines how likely the invasive breast cancer is to recur and if chemo would be of benefit - it all depends on your score between 0-100 whether chemo is recommended below 18 is considered low risk, chemo is recommended for scores above 25 mine was 40 so high risk.
To qualify for the test you have to be early stage breast cancer ER+, Her2 neg and node neg. I guess you were Her2 + which is why you wouldn't have been told about it.
I hope your tiredness starts to improve, you had so many heavy duty meds thrown at you it's bound to take time to recover. I must admit it worries me a bit too - the fatigue, I'm ok at the moment as i'm off work but worry I'll be to tired to work full time when I return, nothing I can do about it yet apart from hope I'm not too badly affected. I get easily frustrated when I can't physically do what I want to so after effects are a concern.
what is the oncodx test? I finished THCP May 2018 and herceptin Feb 2019. I continue to be shattered in the afternoons, the new normal can be hard to accept....
If it helps I had the Zolendronic Acid infusion straight after my first chemo last week and have not felt any side effects from it - no pain or anything. That is until today but I think the back pain is from the zarzio injection i had last night. I'm having it once every 6 weeks along with my chemo and then tablet form once I have completed my 6 EC.
I worried about the side effects too but I keep up to date with my dental appointments. The onc thought it would be a good idea for 3 years to reduce risk of bc recurrence infiltrating my bones. My tumour was only 9mm but it turned out to be grade 3 and my oncodx test came back as 40, I think my onc is throwing everything at it - can't say i'm thrilled with the experience but at 53 would like to be around a few more years yet.
It is as has been said a personal decision for each person to make but the worst part I think is that we don't really know if we are making the right decision or not - unfortunately I don't think there is a right or wrong answer but wholeheartedly wish everyone the very best whatever you decide.
Just stepping in here, because this was something a few of us discussed about 9 months ago on a long-distant thread. I refused bisphosphonates.
I'm just coming up to 64 now. Had WLE/lymph node surgery last May - not the best of margins after surgery, and 1 out of 11 lymphs positive. As I had a Grade 3 diagnosis, I was offered chemo as a matter of course. My age and my view on life has been most influential in my decisions - and I refused chemo. I had always said that I would refuse chemo all my life if it were ever offered for any reason, so it wasn't a consideration for me. I had 15 + 5 radiotherapy zaps as I understood the purpose of it in relation to the surgery I'd had. I initially refused letrozole, but then changed my mind and thought it was worth taking a chance - been taking it June to February, but have been experiencing major back ache issues, which has led me to stop for awhile, to see how I go. My dexa scan in the summer made me pretty borderline towards osteoporosis. I refused bisphosphonates, specifically as when I was discussing treatment with the therapeutic radiologist, it was she who said ' the only thing is, get your teeth checked etc as there is the rarity of jaw necrosis ' . . . . .well the slightest hint was enough for me, because I don't have good teeth, and weighing up everything ( particularly being in my 60's ), I couldn't face my teeth falling out !!! I am not trying to scare anyone or be dramatic - but when statistics say that there are side-effects though rare, I work on the theory that someone has to be that rarity? The oncologists have not been happy with my decisions. The surgeon/consultant is much more pragmatic about people weighing up their own personal odds, and has never once questioned my choices. Their MDT meetings must be interesting to sit on the edges of methinks !!!
So it's personal I guess, deciding what sits most comfortably with each of us - and I am one of those people who is prepared to take responsibility for my decisions. I have always made it clear that I am very grateful for their time and trouble - but the final decision lies with me.
My follow up mammogram this month shows no problems it seems, but I self-referred for a bone scan in view of my aches and pains, as with one lymph node implicated, it seems sensible. It's the not knowing about things that bother me most - when I know what I'm dealing with, I get peace of mind.
Hugs aplenty x
Thanks for sharing Jaybro, I have yet to get to the dentist, that was requested by onc, there is a bit of a wait due to high demand and I don't want to change my dentist.
Delighted to see this question raised - and read the responses. Thank you. Zolendrate was given to me with my second EC therapy so I think much of its effect was disguised. Unlike with all the other ‘poisons’ put through my system, I recall having a definite reaction within a minute or so, which lasted for the 15 minute duration till I was flushed through. Then I was fine. The reaction was in my head, a band of ‘burning’ discomfort from my upper jaw to mid forehead that would have sent me running had I not already been given lorazepam for other reasons. I’m scheduled for my second treatment in July and plan to consult with a dentist who has specialist knowledge as I’ve had a dicey jaw since childhood and am afraid this might make me more vulnerable to the permanent jaw damage (which has very low occurrence, btw). I was diagnosed with osteopoenia 5 years ago, so I know this treatment would be of huge benefit to me long term and it’s also an extra in that bone marrow is apparently the first choice for any rogue cancer cell missed by everything else so strengthening the bone marrow makes complete sense - but... I can get a side effect walking into a pharmacy and I have been “one of the unfortunate few who do not respond well to chemotherapy drugs.’ Understatement - so I understand my reluctance. Having opted to know as little as possible from diagnosis, through chemo to radiology this is one area I just have to research as the risk of jaw damage doesn’t bear thinking about for me.
Good luck if you decide to go ahead. Not everyone experiences the same side effects so you just have to wait and see if you are one of the fortunate ones who just feels flu-y for a few days.
That is useful information happyB, I think it could be easy to really question carrying on if the first infusion is the worse.
Hi All.... I have recently had my second infusion of zolendronic acid. I tried the weekly tablets of alendronic acid but found I was quite wiped out for 3 -4 days each week . After the first infusion of zolendronic acid I had bone pain and didn’t feel well for a week , a bit fluey then fatigued for about two weeks. I was rather apprehensive when I had my second infusion but the only side effect I had was tiredness for two weeks. No pain and didn’t feel unwell.
I had read that after the first dose subsequent doses are easier . I found this to be the case.
Thank you for replying. My phase return starts at the beginning of May so I will probably be working when I have my first infusion. I have let work know so that they are aware. Remember to be kind to yourself over Easter.
I'm on a phased return but as a teacher, I am off for Easter - thankfully!
Pain was manageable after a few painkillers but I have been tired too. Not sure if that is from the infusion or the fact that I've only finished radiotherapy a couple of weeks ago or simply that I'm knackered after chemo, surgery and rads! Ha. What a journey.
I will still have it in 6 months time as there aren't any other options for triple negative.
Hope this helps,
Thank you for sharing Beckett. Can I ask whether you're working? This treatment has been offered and I am unsure how it may impact on working. Clearly, disrupted sleep and pain is not good. I do hope you feel better soon.
I had my first infusion yesterday. I woke at 2.15 (13 hours after treatment) and I can honestly say I was in agony! Every bone in my body hurt.
I've had some painkillers and feel much better.
Next time I will start the painkillers before treatment and continue for 2 days.
I'm not easily upset but this took the wind out of my sails!
Hello Anxious Soul,
I am currently receiving this bishphosphonate as infusion every 6 months for 3 years. So far, so good and infusion no. 5 due in August.
I have not noticed any specific side effects from this. Mind you, if I get any side effects these days, I tend to blame everything on the Anastrazole 😁.
Seriously though, when I weighed up the pros and cons for myself, accepting Zometa/Zoledronic acid infusions over 3 years was a bit of a no brainer. I had a DEXA scan and was judged oesteopenic. Hence, Zometa made me feel more relaxed about taking the Anasty. I saw it as dealing with 2 birds with one stone. I. E. Helping protect bone density as well as helping to reduce recurrence in the bones and adding 1-4 percentage points to the NHS predict score.
I also prefer bishphosphonate infusions rather than taking a tablet, as the latter can have increased side effects for the oesophagus, especially if they are not taken correctly. However, infusions are more invasive and require administraton in the chemo dept. for me. I don't mind this but for others it may have negative connotations. I quite like it as always get bloods checked etc and see it as a bit of an informal follow up!
The side effect you are concerned about, I. E. Oestonecrosis of the jaw is a worry as there seems to be a higher incidence with bishphosphonate infusion. However, the incidence seems relatively low and is more likely to occur after a dental procedure such as an extraction and where Bishphosphonate treatment has been for 5 years or more. A thorough dental check up is usually recommended before starting Zoledronic Acid treatment and ensure good oral hygiene during treatment. On saying that, I did all the right stuff and ended up with a mega abcess! No problem though apart from having root treatment which went fine. Typical of my bleeding luck though!!
There are also other rare serious side effects such as spontaneous fracture of the femur etc but I have decided to take my chances. As far as I am concerned, healthy diet, exercise and maintaining a healthy weight is also part of the picture of trying to ensure the best results.
Take care and hope you make a decision you are comfortable with,
Chick 🐔 x
Thanks Wab, are you experiencing ongoing fatigue? My next appointment is 11th June so I have some time to weigh up whether to go ahead. I wasn't expecting this, I thought my treatment had ended but alas......
I have iv once every 6months my jaw feels a bit tight but I've got changed sensation on right side. It may be me looking for it been very tired which isn't unusual. I have bad wind and very loose no2s this time not sure if it's a coincidence. Hope this helps 😊
The above drug has been recommended for me. Anyone on this? Just curious about the side effects people may be experiencing, I am aware that there is a risk for jaw problems....(: