Claire ❤️ have your questions ready maybe in a little notebook and write a few answers down if you want while speaking to a nurse, I used to do that when I saw my oncologist, found it helped just having something to refer back to when thoughts were having a 🚀 moment ❤️ please be kind to yourself and do everything your own way ❤️ you are in charge even if you don’t feel like you are ❤️💕💕✨✨Shi xx
Yes I will ring the nurses. Just to have a bit of reassurance would be lovely. I have read oh the forum that some ladies have suffered with low neutrophils on numerous occasions and are still on the treatment which is what frightens me the most ( oncologist stopping it). I will ring tomorrow , xx💖🤗🤗
Claire.Giles142 ❤️ step by step and day at a time, do please speak to a nurse on here by phoning the number, they will be able to offer professional support and guidance to you and help discuss everything through with you professionally and medically trained ❤️ be kind to yourself and be gentle with yourself ❤️ little steps ❤️💕💕✨✨Shi xx
Thank you Shi, I have been looking at the website and it’s excellent 😊 thank you again. My anxiety is very bad, as I have weaned off my citalopram due to drug interactions, so I am finding my panic attacks on the rise again. So I really appreciate your help and advice. Xx🥰💖💖
Claire.Giles142 ❤️ do have a look at the Breast Cancer Now website there is so much that breast cancer now can help be a lifeline to you for support with nothing being local to you ❤️ breast cancer now and everything it does is with care, support, kindness and is here for you as much or as little as you need. 👫👭💕💕✨✨Shi xx
You are so kind, thank you Shi, I do hope to hear from others who are in the same situation as I am. I fully appreciate that there are many many ladies suffering this horrible illness but I live miles from any support groups so just having this online forum will be a source of comfort and hopefully some well needed reassurance
thank you 💖💖💖
Claire.giles142 ❤️ there are also threads for secondary so do please reach out in them too, there are forum members who will also reach out to you too who will be able to offer support and guidance ❤️ there is also the someone like me option too if you ring the number ❤️ take it day by day and step by step ❤️ research and treatments and trials are changing things all the time so do check if you are eligible for any trials too if you want to when you know what treatments you have ❤️💕💕✨✨Shi xx
Thank you so much Shi for your response. I feel very confused and worried about this and I really appreciate your reply💖💖 I will definitely do what you suggest 🤗🤗
Claire.Giles142 ❤️please do post in the ask the nurse section too or call the bcn number if you can and speak to a nurse ❤️ I can’t add anything other than your oncologist might give you injections to do to boost wbc but I can’t say for sure which is why I am directing you at the breast cancer now ask the nurse option. I didn’t want to not respond, please do keep reaching out on here, everyone cares and will reach out even if we are unable to answer query, everyone’s here ❤️💕💕✨✨Shi xx
I too have recently been diagnosed with secondary bone mets in spine and hip, and a slight uptake in multiple myeloma in blood test. I am also in shock as my original breast cancer was 2019 when I had a mastectomy and sentinel node involved, so partial auxiliary node clearance. My oncologist score was 4 which was so low I didn’t need chemotherapy only radiotherapy.
So when I started having pain in spine (suffered with fibromyalgia for last 25 years but knew it was a different pain) my oncologist suggested a bone scan , then an mri due to hot spots on bone scan and then pet scan and blood tests. These shown bone mets .I will have a repeat pet scan after three to four cycles and a repeat of the blood test to see if treatment is working 🤞🏻🤞🏻.
ihave now been on Abemaciclib 100 mg twice a day( lower starting dose due to mild cyclical neutropenia ) and fulvestrant injections for a month, and have just had the third loading dose of faslodex but my white blood count is down to 2.7 and neutrophils at 1.34 so I’m hoping that this neutrophil count will rise on the next bloods( 10 days time instead of mid cycle.)
Has anyone else had this problem so early on in the treatment as my oncologist seems happy to continue with the dose that I am on, and I dread him reducing or even stopping the treatment. Does anyone know if it’s a temporary decline in the white blood count( everything else seems okay) and will this readjust when my body gets used to the drugs?
I really need some reassurance that this treatment will work as I have a lovely husband, daughter and two beautiful grandchildren that I would love to watch grow up .
please anyone , some optimism would be much appreciated.
thank you xx🤗
So pleased to have been of some help, I have found reading about others experiences here very helpful. I just thought I would mention that I had constant pain which wasn’t helped by over the counter medicines even cocodomol. I was trying to take it only when I felt I really needed it. My breast nurse said for me it was best to avoid codeine at the moment and that paracetamol had a cumulative effect and worked best if you take 2 tablets regularly 4 times every day. I was sceptical but gave it a go and it really helped me. Take care Lyn
Thanks Lyn. Great to hear you are doing so well and enjoying life. GP said it was most likely to be anxiety but tbh you’ve reassured me more than she did.
I’ve spent today resting which I haven’t done for ages mainly so I could be near a toilet. Hope I can persuade myself to do more of that - I’ve been rushing around trying to keep busy so maybe that’s partly to do with it. I’ve been so tensed up these last few days but today, maybe because I’ve rested, I feel a bit calmer. Just wish the nausea and pain would go.
I hope your future scans go well for you and your anxiety lessens. You’ve been a big help.
Thanks once again.
Hi, I was diagnosed with bone mets in February I am 64. Then of course you have to wait while they do further scans biopsies etc and during this period I also became quite unwell. My pain got worse and I had a lot of stomach and bowel symptoms. I convinced myself all sorts of horrible things were going on but after I had all my results and treatment plan the symptoms went away. It was all just physical symptoms of anxiety. Now I am feeling well and enjoying life. All my symptoms came back when I had my three month scan and although I tried to believe it was anxiety again they continued until I got my results. So just to say that a lot of your symptoms could be anxiety and I am sure you will begin to feel better when you have your treatment plan. In the meantime be kind to yourself try to do small things that might give you a little pleasure and rest lots.. Take care Lyn
I had my primary 20 years ago with mastectomy and lat flap and chemo which was awful. I couldn't take Tamoxifen or Arimidex and was put on Megace for 12 years. Long story short Megace kept undiagnosed migraines ay bay until I was seen by a neurologist who diagnosed the problem and changed my meds. Since then I've been a new person healthwise.
Now this whammy. I have a scan on Friday and then seeing the oncologist the following Friday. I'm not in a good place right now - have known I have mets for just over a week and at first think for the first few days I was probably in shock and dealt with it well.
Since then I've gone downhill physically and mentally. I have been diagnosed with sciatica and a hiatus hernia in recent years so hoping against hope that the pain and stomach problems which I'm having right now are really because of those coupled with anxiety but inevitably thinking the worst as well.
Has anyone else felt like me? I just need a bit of positivity - right now I'm thinking I feel so ill and sick I'm not going to be able to even get to the scan on Friday. I've gone from a happy, mobile 68 year old to a feeble, sickly, quivering wreck in just over a week. My husband, family, and GP friends have all been amazing and my GP has prescribed sleeping tablets and antibiotics because I also have a UTI.
I think the positivity on this site is wonderful so hoping someone can help. Wondering if anyone felt like me when they first found out.
Any help appreciated. Thank you. X