Breast Cancer Now Forum

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 🙂 ... View more

Hi Emily Welcome to the forum even though none of us want to be here. I'm a fair bit older than you but if you look on the section for going through breast cancer treatment, you will find a heading for younger women and families. You may find some people to connect with on there. If not don't worry there are plenty of people on here to share your concerns and answer questions etc.   Joemic x 🙂 ... View more

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 🙂 ... View more

Hi I went back to work a year ago, initially on a phased return then just as I was about to return full time covid hit and I was instructed to work from home. Strangely I ended up working many hours extra per week 🙄 , that floored me for a month after we went back into our workplace - even though I was back to working my regular hours. After that I am much more physically fit (I guess the lack of exercise during lockdown wasn't helping). I can get through the week no problem and have learn't to work through the aching muscles and joints (side effects from letrozole or zometa I don't know). It's difficult at first but in my case, with sheer determination, obstacles can be overcome or at the very least minimized, I refuse to let bc and it's treatment spoil my life (easier said then done some days). I hope you manage to get through your tiredness and feel more like 'you' soon. Good luck   Joemic x 🙂 ... View more

Hi Kerry37 I wasn't 'officially' told my diagnosis at my first appointment. I was sent for the mamogram and tgen an ultrasound biopsy. I knew they were looking at something suspicious with the way they had the ultrasound on one particular area for quite a long time. Anyway after the mamogram and ultrasound I saw the consultant. He said that on a scale of 1-5 he had me down as a 1 initially but after the tests he said I was a definite 4. So he told me without telling me. It was confirmed at the next appointment (the following week) along with the grade. I suppose it really depends on the consultant as to how much they'll say. Good luck Joemic x 🙂 ... View more

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 😀 ... View more

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 😂 ... View more

Hi I've been on Letrozole for 7.5 months now(wow that's gone quick), I had nothing for 3 months and then just got an aching shoulder and an uncomfortable left hip which has nearly sorted itself out now. I have the odd hot flush but have not had anything that I have needed to take painkillers for. In fact I barely register my achy hip now, so don't worry side effects if any can be very mild and don't intefere with daily life. Joemic x 😊 ... View more

Hi Jennie I am one of those and to be fair I was a bit surprised. I finished chemo last Aug and was told my immune system would be ok in 3 months - here I am 7 months later with a letter. My letter came from my G.P on behalf of the NHS, it might be worth checking with them what their advice to you is. The letter basically says the NHS has identified you as someone at risk of severe illness if you catch covid-19. It recommends you stay at home for 12 weeks. What you need to do if you get symptoms and other general advice. Hope this helps Joemic x 😊 ... View more

Hi I wouldn't worry, if your work sent you home they obviously think you are high risk. I think the amount of chest infections you get puts you in that bracket. If you are isolating then you cannot be penalised for it. Hope that helps a bit. Stay safe Joemic x 😊 ... View more

Hi They look a bit like an electric toothbrush but have a water chamber attached. They come with different attachments and you put it near your gum line and between your teeth and it shoots water to get rid of any food debris that brushing misses; you can also put mouthwash in it. If you look up water flosses there are many brands which are much cheaper than waterpik. All I can say is it's working for me. Joemic x 😊 ... View more

Hi Jane I finished chemo in Aug last year and developed deep ridges and my nails started lifting on a couple of fingers. I kept my nails short (to stop them getting snagged and lifting more) and massaged oil into them twice a day. My nail beds have fully recovered but I still have ridges although not quite as deep. My 2 big toe nails were the same, although they didn't fully lift, they are still a bit of a mess because they take much longer to grow so can't cut the dead bits off very often. Hope this helps a bit and hope yours recover quick. Joemic x 😊 ... View more

I've been on Letrozole for nearly 6 months now, I had the Teva brand first and had no side effects, Accord brand for my second pack and again no problems; I've had the Sun brand for the last 4 months and a week or so of starting that one I started getting a painful hip and shoulder which I still have BUT whether it is related to the Sun brand I don't really know (it could just as easily be related to my bisphosphonates) and I won't know until I end up with yet another brand from the pharmacy. I think it's pot luck what brand you get from my pharmacy but I haven't enough evidence yet to ask my GP to state any particular brand. I hope you find a suitable brand Joemic x ... View more

Same here Anniej and I bet we're not the only ones 😬 . Wonder how many ladies are grabbing a mirror themselves 🤔 . Nothing wrong with it and it would be useful if people felt comfortable enough to say, it might help others realise we're finding the same side effects, just another thing we have to put up with and get used to.   Joemic x 😊 ... View more

👍🏻 Jaybro, so it isn't just me then, mind you I'm not entirely sure when they decided to do a vanishing act 🤔 , I think the last time they were there was when my pubes were growing back🧐. I'm just wondering what else is going to disappear into the ether 😳 . I could do with some shrinkage from my bottom and belly but no doubt that won't happen 😂 .   Don't know what planet I've been on but had to google the Gwyneth Paltrow bit - can't say I've noticed any changes to the way I smell (although the outside gets itchy when washing and stops as soon as I've done) but I think I'd really worry if I started smelling of bergamont and citrus 😬 .   I guess we'll have to wait and see if anyone else has been affected and if they grew back...or not 😳   Joemic x 😊 ... View more

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 😊 ... View more

Hi I've not since returned to work following active treatment so maybe some of what I have found may help you. I had 2 surgeries, 6 rounds of chemo and 15 rads. I finished on 4th Oct, I gave it a further 2 weeks for any skin reaction to reach its peak and a further 2 weeks to recover and returned to work on a phased return on 4th nov. I did q day the first week, 2 days the next then 3, then 4 and finally back to full time hours on the 5th week. I suffered very little fatigue during my treatment but oh boy I hit it big time upon return to work, it was a godsend that I had a phased return. My job is very similar to yours and believe me it is so difficult initially, you're trying to return, catch up with what you've missed, still keeping up with the kids not to mention other things like cooking, washing etc. I had a bit of chemo brain going on too, very frustrating especially when you have a job which relies on your memory so much. Colleagues reactions can also be wearing, not that they intend to be but hey your heads a mush.   What I'm saying is it is an incredibly taxing time when you return even if you (like me) are so looking forward to it. Because I had been off so long I had accrued all my yearly leave allowance so have not yet, apart from once, worked a full week. The one full week I did was not successful - although I fulfilled the hours, the fatigue and subsequent meltdown was not so good. I still won't be doing a full week until after the Easter holidays due to bank holidays and rest of my leave. I am shattered at the end of my day and thats 8 hours, I honestly couldn't do 12 after 8 hours my judgement starts to falter and I get too tired to think straight, you will need to think seriously how many hours you can cope with in a day as you need to be on the ball. Being at work is different to being at home, you don't realise how much easier it is to pace yourself at home (even with kids) than it is at work until you do it. If I were to do it again, I'd have taken a bit longer off before returning - you're very soon back into the role and people soon forget what you were off with. If you can afford to take as long as you can, your body and mind will thank you for it. I'm thinking about dropping a day but am going to give it a bit longer before making that decision. In my opinion 12 hr days are a no no for quite a while. Sorry for waffling and hope you find a suitable solution for yourself, occie health should support you with this. Joemic x p.s I am still enjoying being back at work 😊 ... View more

Hi Sunflower I doubt very much that they would be wanting to force you back to work before you are ready. I work in the public sector and part of the managing attendance process if we are off work for more than four weeks we are referred to occupational health. I was in regular contact with my occupational health throughout my time off for surgery, chemo and rads. They were there to support me and at no time pushed me to return. When I was ready to return after 9 months, they were the ones who insisted I had a phased return and monitored how I was coping with it. One of their main roles is to support people back to work when they are ready (not force it) as at the end of the day they want people back to work not push them so they are off again. It's natural to be worried about something we have not had to face before and to be fair I do think referals to occie health have been used as a threat against workers which is a real shame as I found them very supportive as have many other people I know and hand on heart I can't say there is anyone I know of in my organisation who have had a negative experience with them. Try going in with a couple of questions i.e. ask them how they will help you return to work when you are ready, ask them what the procedure is you need to follow and if you feel able ask them if the meeting has been organised to force you back to work before you're ready, at least you'd know then.  Above all else remember you are a tough cookie to have gone through everything you have so try not to worry about the meeting. Joemic x 😊 ... View more