Zometa/zoledronate and longer term effects

[Alwaysachoice]

Hi Joemic 

What a palaver! Glad to hear the 'shadow' is not new and hope you feel reassured. Thinking of you as you carry on with zometa on 3rd July and hoping and praying you feel well afterwards. 

❤️

[Joemic]

Hi ladies

Here's the update... I had to stop the Zometa infusion (should have been Sat 19th). Just could not get a dental appointment before hand as it wasn't classed as emergency but guess what, they could see me today🙄. Oncologist said I should have a 6 week zometa delay due to potential dental treatment.

However, dental exam today...no immediate treatment needed. I can have a crown fitted if I want but it's equally beneficial to just leave it and see how it goes🤨.

Had an xray and was going to be referred to the hospital as there was a new shadow on my jaw but not near my tooth so not a dental issue. Was told ok to continue with Zometa, really!! is there not potential jaw problems as a side effect?

Wow that was a stressful walk home. Within 2 hours of leaving the dentist I received a phone call from them. Apparently they had had another look at my xrays and had found that the 'new' shadow was in fact there on an xray I had in 2009 and has not changed since then. Told to forget about it and draw a line under it as there is in fact nothing to be concerned about and to book in for a crown.

Anyway, I have decided to leave the crown for a bit and now have my Zometa on Sat 3rd July. Still a bit annoyed that it took over 3 weeks to get a dental appointment, stopping zometa, only then finding out I didn't need to stop it in the first place🙄.

Hope I'm doing right delaying the crown but they did say it didn't really need doing asap, we could just keep an eye on the tooth.

I do hope you are all managing to get your dental check ups.

Joemic x 🙂

[Kitkat23]

Hi Joemic

i feel for you.....I ended up going to my MP ....who in turn....went to someone high up in Public Health England.....and I finally got seen.....this was much earlier in the pandemic....but it still appears to be a problem.

im glad I waited to see a dentist.....they said they would preempt any dental treatment I may need in the next 5 years ( I need 3 years of treatment) ..... so I had 1 filling removed....which they said would probably have come out.....and replaced it.

i am now booked in for 3 monthly appointments for check ups.   
I hope you get sorted.

[Alwaysachoice]

Hi Joemic

How frustrating for you! Have you spoken to your breast care nurse about this? I wonder if it's possible to get a letter from the breast care team to your dentist, explaining the importance of an appointment. 

Let us know if and when you're successful. 

Sending love and a hug. X

[Joemic]

Hi ladies, hope all is well with everyone.

we all know it's been a terrible time for over a year now but I am due my 3rd zometa in a couple of weeks. I haven't been able to see a dentist for over 15 months now(supposed to be every 3), everything has been ok until last week where a part of my tooth broke off, it doesn't hurt or anything but the top part of the filling is exposed and a black spot on another molar near the gum line. I have been trying to get to see my dentist but am told it isn't urgent so will have to keep phoning daily to see if they can 'fit' me in, I explained about the zometa and the need to make sure my teeth are ok but was told there are no appointments and to keep phoning daily. 

Do you think it would be ok to continue or should I postpone the treatment until I get to see the dentist - eventually. It's not as if I can speak to my dentist as I can't get passed the receptionists. It's difficult to phone daily as I'm a front line worker caring for people and if you don't have redial on your phone at bang on 9 any appointment will have been snapped up and I can't leave people half way through bathing, dressing etc to make a call.

I appreciate it's been difficult for dentists but so has it for those of us providing care throughout each of the lockdowns. Just feeling a bit disgruntled really, all the recommendations of keeping up with dental care 3 monthly due to risk of osteocronosis of the jaw and to find 15 months is not viwed as important.

Joemic x 🙂

[Franklynn]

Thank you for your post. I had my first zometa yesterday and today I feel like I’ve been hit by a bus. My muscles are painful as are my joints and I am so cold. My next dose is in 3 weeks so it’s good to hear it gets more manageable x

[Alwaysachoice]

Hi everyone

Just a word of encouragement to all you lovely ladies.

I'm 4 drips down, 2 to go, and taking aromasin (exemestane). 

My wonderful GP has suggested wearing a splint at night for the pain in my hands and the trigger thumbs, which has really helped. I've even managed some hand embroidery this week!

She diagnosed the very painful right upper arm with restricted movement as a frozen shoulder and has given me daily exercises to do. I can undo my bra again! 

She also assured me that my body will get used to the drugs and the pain will get easier to cope with. 

I'd got to a point where I've needed meds for anxiety and panic attacks. All I could see was pain stretching out before me for years. These simple steps recommended by my GP have made me feel so much better, physically and mentally. 

Hoping this helps someone out there. 

Hope we can all find little precious moments of joy in life today. 

🙏❤️🌻

[Genin21]

Hi Marypeg

Thank you so much for your reply, it is really helpful to know about the bone scan and arthritis. I am wondering if I could suffer a little from that but will check it out. sorry to hear you still have joint pain one year on. 

going to speak to the Onco team again as would like to know what alternative pain relief is out there... the co codamol doesn’t work for me am afraid and makes me very sick. Am taking ibuprofen and paracetamol. 

big hugs

Angie 

[MaryPeg]

Hi Genin21,

I am so sorry to hear about the effects you’ve had.
I was told that the second Zolendronic infusion was usually easier than the first. I DID have the second one but felt like a guinea pig as I wasn't sure if Id have the same reaction.

 It was not as bad and I didnt end up in A&E again!   However, for months afterwards & even now, a year later,  Ive been having terrible joint pain.  The bone scan I had was negative but it did show that I had arthritis that the Zolendronic Infusions MAY have made worse, I will ever know because after the second infusion I stopped having it.  The joint pain could be from the chemo or radiotherapy treatments, or a combination of everything,  Im not sure.  We have to weigh out the effects of a treatment versus the side effects.
Our bodies have been through so very much.  It takes time to get back to good health.   I hope everything goes well for you.  I hope Ive helped to answer your question.

Sending you a big hug!
Mary

[Genin21]

Hi Mary

just signed up and reading all these comments re zoledronic acid.  Had my first I fusion 11 March and 5 days later got terrible pains in bones and muscles specifically chest area.was not expecting this at all, tried coodamol for pain but made me. Auseous so had to stop. Anyway ended up in A & E pain so bad....now taking ibuprofen and paracetamol regularly.  Assied from pain had chills and fatigue, like a flu but it isn’t... COVID negative... i won’t have this treatment again, 8 days on and still terrible aches in joints, wrists, knees, feet...

[Frances333]

Hi Mary

just wondering how you got on with your bone scan results. Really hope they were good.

Take care

Frances xxx

[ARASAY]

I had my first infusion of Zometa 7 weeks ago and I am taking Letrozole every night. I am attributing my increasing muscle, bone and joint pain to the Letrozole. Had no idea to check the Zometa until moments just before looking at this forum. I have a couple of friends that had to get off of the Letrozole because the pain became unbearable. My BCN recommended a daily dose of Claritin. It does help.

[Joemic]

Well ladies

Eventually after having one of those webcam? calls with the GP, he said he didn't know what it was so sent me for an xray. " weeks later had the xray with a further 10 day wait. Phoned the surgery for the results - all normal, spoke to the doc who said he wanted to see me so he could look at it🙄.

Diagnosed with both tennis and golfers elbow - tennis on the left and golfers on the right. Ironic it's named after 2 sports I don't like🤣. Now going to have virtual physio because they aren't seeing anyone in the flesh but my doc wants me to start some exercises asap. He was going to prescribe some more anti inflammatory but I said I don't want to take any more meds, there's always a trade off and I'm not sure I want anymore side effects😬.

Any way I'm quite pleased at the diagnosis in that I thought it was side effects from the letrozole, zolendronic acid or worse.... actually turns out to be repetitive strain injuries from working from home and doing too many extra hours without enough down time inbetween🤣🤣 even though it's down right painful I'm just grateful it isn't anything worse.

Onwards and upwards ladies

Joemic x😀

[LucyLump]

Hi Ladies, thank you so much for your posts. It has been really helpful reading them. I had my first zoledronic acid infusion on Friday and was totally wiped out over the weekend with a temperature of 39.8 and weird pain bizarrely at the base of one finger. I am feeling better today but still excessively tired. Hope you are all doing ok. Hope you managed to get to your GP Joemic. I saw mine yesterday to get an inaccessible tick removed. That had not been in my plan! Xx

[Joemic]

Hmmm, just wondering🤔 on one hand I had no problems with the Zometa infusion, well that's after my veins played ball, they kept blowing😳.

A couple of weeks later and my elbow is painful, not the joint, the actual bone. I'm losing strength in my hand and keep dropping stuff. Just wondering if it's a coincidence or the Zometa.Have any of you ladies experienced this?

I suppose I'll have to ask my gp, if I can get past the diagnosing receptionists that is😂

[FeeFee3]

Enjoy your day!!!!

[yorkshire_defector]

Hi all

I had my bisphosphonate last Weds and despite feeling like death on Thurs & pathetic Fri feel ok today...and I do think its actually improved some of the joint pains I had (thanks to Letrozole), my knees in particular are much improved on an evening post taking my 7pm letrozole.  I do hope this isn't just a short term improvement but am also really glad that I didn't get the side effects that some of you have been writing about and really hope things get better.

Never ceases to amaze me the different effects these blasted drugs have on us!

Right back to my 4th pint of the day in my local spoons....

Sam

[FeeFee3]

Thank you so much! You’re right, you think you’re the only one going through this. Things became so painful that I had to ring the breast care team and a month ago I was taken off my exemestane. Yesterday, I was at the hospital - they have put me on tamoxifen now and sending me for a bone scan. I was in so much agony, I had to crawl up the stairs and just couldn’t manage.  I have osteoporosis which they think has been made worse with all the treatment. I can’t do my job at the moment - I simply can’t function normally!  On a positive note, I’ve had another mammogram and ultrasound and there’s no change since my last one in November last year. All clear! Just wish to goodness I could be ‘normal’ again. I have a bed guard now just so I can turn over in bed - something to grab onto to help me sit up etc. I was a 51 year old working mum with 2 dogs that I used to walk miles with each day - to a 53 year old who can’t work at the moment and whose dogs are still living at her 82 year old mums house because she can walk them further than me!! It’s so upsetting. I wish you well and do keep me posted. Thank you 

[MaryPeg]

Hi Jaybro,

Sorry to hear about your joint pain but it all is sounding very familiar as I’m having the same problem.  I had my first Zolendronic infusion in August 2019 & ended up in A&E with what I described as  muscle spasms, joint pain. I was sent home but struggled with knee, hip, joint pain for a couple weeks.  

I had the second Zolendronic infusion in February to see if the side effects would be as bad, they were not, however, I, like you am suffering from constant joint pain.   In the last couple of weeks I began to worry that it could be bone pain. I have now  had a bone scan & am waiting on results.

 I think its the Zolendronic Acid & if bone my scan is clear I will probably be stopping it. I cant answer your question yet as to whether the pain will go away when the infusion stops but I do hope it does. I am just glad to know I’m not the only one with this pain.

I hope this info has helped.

Mary

[BluebellTime]

Hello ladies, I'm really sorry to  hear of the bad side effects you are having but, just to add a note of cheer for new starters, I seem to have been lucky with zol acid. I had 2 doses  during chemo last summer then a 6mth dose in January and fingers crossed so far have not noticed anything, just a bit tired for  day or so. I did get joint pain from the filgastrim injections during chemo so I sympathise with those of you still getting pain. For the record I'm 65 and on tamoxifen. Love Mo x

[yorkshire_defector]

Hi Jaybro

Please can I ask how your side effects are re the zometa IV as I'm due to get mine early July and am wondering how long the side effects may last, do appreciate that everyone is individual but like to be informed of potential outcomes!

I do hope you're doing well, my skin is taking quite a while to get back to normal post rads (now 3 weeks since last one) so am enjoying a bra-free existence!

Thanks Sam X

[Alwaysachoice]

I had leg pain, especially knees, but it improved a lot, so hoping yours does too. I use my hands a lot - sewing, crochet and an allotment - and the joint paint in my hands is the worst to cope with. After 2 1/2 months it's not improving but I travel hopefully! I will def let you know how my review goes. Xxx

[FeeFee3]

Hi, thank you so much for your reply.  I’ve woken up this morning feeling slightly less achy - but my thumbs??!!! What on earth has happened to them? I can’t even fasten my bra!! The pains I’ve had in my legs are identical to the pains when I was on letrozole and that’s why they were changed to exemestane.  I back to crawling up the stairs again. Tomorrow is another day and if the sun is shining, the pain becomes easier to bear. Once again, many thanks. X

[Alwaysachoice]

Poor you! I feel for you. 

The first two days after zometa I felt very sleepy and aching all over. Then I picked up for a week, then the aches started again. I spoke to my BCN who said it was probably the drip and it would subside. I changed to exemestane around the same time as I had the drip. I'm still aching, in my arms mainly. I get the golfers elbow you mention! Also struggling with my finger, thumb and wrist joints. The BCN now says this is probably the exemestane. I have a review in 2 weeks and they may change my meds again. I'll let you know if they do and if the symptoms improve. 

In the meantime, hang in in there! Do what you can, rest when you can, and ask, ask, ask til you get an answer you can live with. Thinking of you, praying for you. 😊🙏💚 X

[FeeFee3]

I had my first zoledronic acid infusion on Wednesday and I can’t believe how much pain I’ve been in. Side effects kicked in around 10 on that night. I couldn’t move off my back in bed, while I was being sick. Trying to move ever since has been agony. I felt like this on letrozole and was changed to exemestane. Every single joint is really really painful. I am spending my time upstairs as I can’t bend my knees properly to get down the stairs. I am taking additional codeine but wow I never expected this. I’ve also got toothache. I had a raging fever the first night which subsided by lunchtime the following day. How long do these pains usually last. My elbow joints feel like I’ve got tennis/golfers elbow and my mouth feels coated. Have others experienced anything like this? Are subsequent infusions as bad?

 I’m 53, had a lumpectomy in December 2019, lymph nodes removed in January 2019, followed by 6 chemotherapy cycles and then 15 radiotherapy sessions. It seems I’ve reacted badly to everything concerning the cancer. I really don’t know if I can cope with going through this treatment again in 6 months time.  I’d be really grateful if anyone is able to offer advice. Many thanks 

[Alwaysachoice]

Ji Jaybro

Yes, we'll all have different experiences but you're right, it's helpful to know someone is empathetic.

As I'm over 50 I take a B vit supplement every day. I have a plant-based diet so it's doubly important. So I know it's not that for me. I'm glad you've got a good GP. It's so important as they are our first line, aren't they?

I think we have to expect some side effects but not put up with horrendous aches and pains. At the moment I'm just trying to be content until I feel I've reached a point for intervention.

I hope your symptoms subside soon and you feel more like your usual self again. xxx 

[Jaybro]

Thanks for YOUR post. The thing is, we know everyone is different and everyone’s experience will be different but there’s always the hope that someone out there will recognise our experience. My first zometa was given with my second EC treatment and I was always so ill that I just didn’t notice!  Certainly I had no muscle or bone pain in the first 6 months so that may give you hope. There’s no reason to suppose you’ll share my experience - and I don't even know if I’m right. I’ve seen a great GP now and he’s testing me for X, Y and Z with a view to treating the symptoms at least - but we’ve already established my B12 level is low and that can cause symptoms like this so maybe I’m pointing the finger in the wrong direction again. I’m just a bit desperate lol.

All the best for your treatment x

[Alwaysachoice]

Hi Jaybro

I had my first Zometa infusion two weeks ago, about the time I changed from Letrozole to Exemestane.

I'm almost 63 indefinitely post menopause! 

I was in a lot of pain for the first two days and felt very sleepy, then felt fine until a just over a week ago when the aches returned. They are not nearly as bad and I'm up and doing, but my legs feel like lead and my feet, hands, back and arms ache. 

I spoke to the BCN who said its more likely to be the drip rather than the exemestane, and it will improve over time. I didn't want to think that this is the new normal!!!

I've read a lot of posts by women who say the first one is the worst and they've had almost no side effects with subsequent treatments. I'm going to persevere - were so good at that aren't we?! - as I feel it will benefit me more to have the treatment than not.

As to a solution, I'm just going with it. I'm resting when I feel I must and trying to be active when I can. I'm trying to go for a short walk each day (not always up to it) and trying to do some of the physio exercises.

Thank you for your post. I feel less like I'm the only woman on earth whose side effects are dragging on a bit!!! xxx

[Joemic]

Hi Jaybro

Darned frustrating trying to work out what side effect is from what meds🧐.

I had the infusions when I was having chemo but was changed to the tabs once chemo was completed. I didn't suffer any painful side effects when on the infusion but have noticed that I have a terrible ache, not quite painful but certainly very uncomfortable, down my left shin, a painful left hip and right shoulder🙄. Spoke to the bcn when I had my appt but she dismissively said 'yeah that'll be the letrozole' but then followed it by saying 'we see you next in 2 years when you stop the chuffing horrendous bisphosphonate😳', not filled with positivity after that but she wouldn't elaborate any further after that, just kept saying we'll see you in 2 years, the onus is now on you to check for recurrences and phone us if you notice any differences😬

I guess your pain maybe due to the infusions, did you notice whether the pain is worse after the infusion but then starts to taper off the longer between infusions you go? If it does you may have a link between the 2.

Sorry I can not be of any more help, but I am also intrigued as to others experiences and hope things settle down for you.

Joemic x😊

[Jaybro]

Hi friends

I think I’ve been a bit naive (or single-minded in my dislike of HT). I have quite bad joint and muscle pain now but I have been off HT for over 2 weeks and the pains continues to worsen. The pharmacist has suggested it might be caused by the zometa infusion. Looking back, I can see that the pain began quite soon after my second IV but I changed brand of anastrozole at that time and have assumed it was that. In the last month, it has become quite a problem and this ties in with having had my IV in mid-January.

Has anyone else experienced severe joint and muscle pain (initially hands and feet, now knees, elbows and hip) as a result of zoledronic acid IV and have a solution?

Is it something that goes away after you stop the treatment or permanent damage?

Obviously I’m reluctant to stop the therapy halfway through as I’m quite high risk for another 2 years but I really don’t know how I can function like this for three more treatments over 18 months. I was very sprightly before all this BC treatment took its toll 😞 I’d love to hear from others how they’ve coped x