I have got to go for my first Zometa Infusion next week and am crippled with anxiety about it.
I sailed through chemo, surgery and radiotherapy emotionally but this has really floored me. I want to cry all the time and am dreading going back to the chemo ward. I am terrified of the side effects and recurrence, and I feel completely out of control of my body.
It all feels like a step backwards. I’m so frustrated that it just never stops. When you start out you think it’ll be chemo and then done. It’s taken all my strength to get to this point. I have another 4 years to go. I’m so tired and can totally understand why people stop treatment completely sometimes.
I know I have to continue for my family, I just feel so powerless in these decisions about my body.
I’m so lucky to have a good support network around me, and to have my tumour shrink down as hoped. It’s just really hard to think about what I need to do to keep going.
People tell me I’m brave, but you just have to keep going right? For now I will keep on swimming.
Hi @haylo77 I completely get that it just becomes too much and there never seems to be an end to treatment, hospitals, injections, side effects, fear and stress. You are completely entitled to feel as you do and I understand why those who haven’t been through it, telling you you’re a brave little trooper, would be frustrating.
I haven’t been through your exact experience either but I do know what years of some ghastly treatment stretching out before you is like. It completely sucks. Yup, it IS tempting to chuck it all in and take our chances. We just want it to be over. But you and I both know that we have to carry on, at least for now.
Have you thought about finding someone on the BCN “Someone Like Me” programme who you can talk one to one with, either by phone or email? It honestly helps to have someone who understands at a granular level on your side.
Things always seem worse at the beginning of a new phase. Once you’re in to it, it will become just another part of the routine. There will be an end to it and you are doing everything in your power to stop this ever happening again. But allow yourself the occasional dip in which to shout “this isn’t bloody fair”. Get it out of your system and go again.
Since finishing my radiotherapy ( surgery then chemotherapy with Herceptin ( til Sept 2024) I’ve had been very teary. I’m not sure if it’s the feeling of being let go by the oncologists, no more clinics, but under then with Herceptin, MUGA scans and soon like you Zometa infusions ( awaiting appointment), or it’s the realisation of what I’ve been through. Even though it hasn’t finished I do feel a bit more freedom from blood tests, PICC line dressings, chemo, clinics etc. Now I have 3 weekly Herceptin at home so no travelling but also no visits to Maggie’s and 6 monthly Zometa. Not forgetting the daily Letrozole.
I wouldn’t say I sailed through my treatment so far but I took it one day at a time, and dealt with the problems so they didn’t build up. I think sometimes you’re like a mouse on the wheel going round and round and then you ‘fall’ off, that’s when it hits you what you’ve been through.
I have been having counselling for the last few weeks, not sure I’ve really bonded with her so my breast care nurse is arranging clinical psychologist via the NHS. Is this something you have thought about?
Like @Tigress says BCN Someone Like Me or their Moving Forward course may help. I don’t feel ready for Moving Forward as I feel I’m still in active treatment but maybe soon I will.
I don’t think anyone can really explain their feelings, I know I can’t it just happens. Your family and friends have been big supporters of you and sometimes you don’t want to worry them on top of everything they have been through watching you during treatment. That’s why I have tried counselling as it’s somebody independent.
This forum is so good foe all of us to share our thoughts and feeling, so thank you for doing so. Your comments will, I’m sure, help others.
@haylo77
Sometimes it’s not until we get through the main part of treatment that everything hits and floors us. We have used all our resilience and pushed through and then we’re tired, chemo taken its toll, side effects and life changes become obvious and WHAM…
You say four more years but now cancer has been taking most of your day/thoughts/life… but soon it’s only going to occupy a small amount and those four years should be fun, work, home life, shopping and what you want it to be…
I also have 6 monthly zometa. I noticed the other day, this is offered by the community nurses at home in my area-is that something that could be offered to you so you don’t need to go back to chemo unit?
My previous two, I have been in and out in about 45 minutes-that may make more bearable.
The first it wasn’t prescribed, then my vitamin D/calcium was too low and they wouldn’t give. Maybe ask your nurse to check all necessary bloods and prescriptions a few days before so no anxious delays.
As others have said, counselling, moving forward course, someone like me…they could give you additional support to get through this difficult period.
I finished chemo jan 23 and it’s been hard to build up strength, get through fatigue and woolly brain but I think I’m getting my life together/back/better… hold on in there
X
Thank you all for your kind words. I am going to look at the Someone Like Me and also have a GP appointment tomorrow so will ask and see if I can have the Zometa somewhere locally. I feel much better after discussing things with my family and think some focus on my self care will also start making me feel more in control of things. X
@haylo77 I share your sentiments. I am Stage 3, ER/PR positive, HER2 negative. 28 lymph nodes removed. I am currently on Letrozole and abemaciclib. My recent bone density scan has revealed that I have osteoporosis in my hip and femur. Sigh… Like you, Zomeeta was offered but i haven’t committed to it yet. I am so dreading it… It’s one thing after another… I am so scared and terrified of the side effects of Zomeeta. Please do let us know how you are doing after your first infusion. Hugs to you.
First of all, welcome to BCN and for your first post. We are here for you!
I will have my 6th and last Zometa next month. I understand how you feel. A fellow survivor advices me to take Paracetamol 500mg the day before… if it wasn’t in the morning the day itself. I can’t exactly remember now as that was 2½ years ago. She said it was to mitigate the flu-like symptoms one could experience. She only felt that the first time and never again so maybe that might help you as well. For the rest, I cannot say my symptoms are from Zometa as I had chemotherapy (EC & Taxol), radiotherapy and am under Letrozole (halfway now).
Remember to keep hydrated, to exercise, to eat a healthy diet (Mediterranean Diet is the healthiest). Make a list of the things you enjoy and start with one first. Take time during the week to do that, at least once… if more, even better. Listen to your body and rest when necessary but don’t sit too much as it will only make your body hurt more. It’s all about a balance.
I know, it’s not easy… but it’s the gift we should give ourselves. Best wishes!
Something else I forgot to ask in my previous answer. Have they done a bone density test test? That needs to be done before Zometa and you should be prescribed with Vit D3. I take 100mg/800 IE/UI but it might depend on each particular case.
Yep, i was doing fine, now i’m feeling anxious again, thinking allsorts.
As i said in my last post, my infusion has been delayed, have left 2 messages, as to trying to find out why. As you say, it’s like taking a step backwards. Feeling in limbo !! And to top it all, got cardio test tomorrow. Sorry bit of a rant.
So, i can totally relate to how you’re feeling.
We just have to keep going don’t we.
I’m too worried about side effects.
Don’t ever feel like you’re alone, cause you’re not.
Take care. x
Just wanted to extend some understanding and hopefully positive thoughts. Like you I did the whole gamut of surgery/chemo/radiotherapy and weathered it quite well. I sailed into Zoledronic and had a horrid reaction so I have abandoned this form of treatment. However, I want to tell you that I have only ever met one other person who had a severe reaction as it is extremely rare. Most people don’t notice a thing, a handful have some mild affects only. Your chances of being absolutely okay with it are high and if by some remote chance it doesn’t suit, it’s not the end of the world if you decide to give it a miss. Like all cancer treatments, it’s a percentages game and you would only lose a minuscule amount of extra protection.
Three years on I am fit and healthy with a mane of hair and nearly good as new. I am banking on you to be the same. All the best to you.
Great help suggesting paracetamol. I will remember to take some once I get my date.
I was told by a locum oncologist that I should have a dexa scan before the infusions and chased it up two weeks ago. The locum has gone back to Spain and the new consultant who I’ve never met (via a nurse) said I didn’t need one as I was having the treatment. I queried it saying I was told needed one to get baseline on my bones now, they said they would take it back to the consultant. I also remember them saying it was the GP who would organise.
I have an appointment soon with the breast surgery team and will take it up with them to find out if I can get one.
During chemo I had to ask what my Vitamin D level was as I was feeling very tired it was borderline deficient so I was prescribed it at a high level with a year at a standard dose. I was taking it myself before BC and was told to stop all supplements and my levels plummeted.
Like you, I was told no dexa scan needed but vit D supplements/checks prior to infusion.
I had cold symptoms after first but to be fair I had Cole prio and asked if I should delay. Didnt notice on round 2. Round 3 due this month
Totally get where you are coming from and the side effects are worrying but zometa is like 10 or 15 minutes and not like chemo at all. I’ve just had my first dose and was fine. Think I’m on it for 3 years ( gets a bit confusing with all the different meds!) I’m also going back to the chemo lounge every month for goserelin injections. I find it quite upsetting that none of this was explained from the start. I thought when I walked out that chemo lounge after my last chemo, that was it. Little did I know! I know it’s difficult not to worry but you really won’t be there as long and it is different when you’re not actually having chemo. Hopefully you won’t find it as draining. I never realised how ill I felt on chemo and it’s quite bizarre being in the lounge and feeling so ill. Good luck
Hi @haylo77 - I’m with you in this. I naively thought that after chemo & radio I’d be back in the saddle and ready to face the world but I was wrong. I’m on Letrozole & Abemaciclib, the Abemaciclib floored me for about 7 months and still gives me bad weeks occasionally. I’m on max dose and refuse to let it beat me because I know the more I can take the better the outcome, in theory and that’s how I personally view it. I know some people prefer quality of life over possible risk reduction and everyone deals with it how they feel best so I’m not saying mine is the best approach, it’s just mine.
I too have Zoledronic acid infusions - I’ve had 2 and due my 3rd in June.
What I would say is start taking paracetamols regularly a few days before your first one. It did wipe me out but just like flu so manageable and only lasted a couple of days. 2nd one was absolutely fine and I had no problems with it at all. We will reach the end of it all and til then it’s head down and plough on, however you can. You got this.
Please don’t worry about Zometa. It’s just there to help strenghten your bones. I had one in January (about 15/20 mins) and didn’t need paracetamol or anything. Tired out for about three days with a few aching joints but that was it. So thinking of you and don’t let it worry you at all.
Hi Tired, I don’t agree with the pre-paracetamol idea at all. No point in taking it beforehand and didn’t fint it any help at all afterwards either. Just my opinion …
Welcome, to the forum, as others have already mentioned we are all here for you.
I feel you have had some excellent advice, from our lovely ladies on the site, so I’m not going to add anymore except making notes always helps, cup of tea with that special friend goes a long way. Wishing you well going forward. Keep posting letting us know how you are feeling.
I had my hopefully last clinic this week after 5 years and expected to feel euphoric. But I didn’t because it’s annual mammograms for another 4 years and they cause me massive stress every year . And have to have Dexa scan again as on Letrozole for 10 years . The sad truth is once you have had breast cancer it’s never 100 per cent over nor is there any ‘all clear ‘ as it can come back decades later . I normally push this to back of my mind but had some issues recently with sciatica and was convinced it was SBC . I will probably be OK in a couple of weeks . We would all like to forget about it and go back t to the person we were . Unfortunately we can’t. So most of the time I am just profoundly grateful to still be here and do the best I can
@Susanmanchester That’s great news your last clinic after five years but can imagine if feels odd. I’m still having Herceptin and Letrozole and will be due my first annual screening in July a year after my surgery. I already feel a little side lined at times so can’t imagine how it must be for you.
I don’t think people who have not had cancer can imagine that it does take over your life even when it’s no longer there because of the fear of coming back. Saying that I had someone throw back at me that they had had a brain tumour so why was my cancer important! They even took their hat off to show me their scar can you imagine if I flashed my scars at them! It was a bloke. I was in tears and had to walk away. I was also very surprised that they were so nasty and had no empathy.
