I was diagnosed with lobular cancer my right breast in 2015, with DCIS in left breast. Started on Letrozole and denosumab then DCIS progressed and had a lumpectomy in January this year. CT again on the 19/12,so fingers crossed everything is stable.cant have chemo as am neutoopenic. Hope this helps
Thank you Janette and Bon. I find I feel a bit achey a day or so after but it soon settles, like you Bon I just think it’s doing it’s job! When I was originally on Denosumab it was given monthly at my hospital, although my Onc did say not to worry if I needed to miss a dose due to it’s longevity in the body, now 2 doses are given then it’s 3 monthly. Apparently around the time I had problems so did another couple of patients and the policy was reviewed. Interestingly, the Max Fax consultant had said to me that in their opinion 3 monthly was the dose she would recommend, again because of the length of time it remains in the body...years according to them and the Onc who gave me my news earlier this week.
I hope you are both keeping well and any treatments are being kind to you..Kate xx
Good news Kate. Hope you can stay on Denosumab now. Had some yesterday, my bones ache today. I suppose i can feel it doing me good!
Take care Ff. As long as you can see out, don't worry about the detail
Kate21, Bone scan said cancer in t-11, MRI said no sign of cancer, but osteoporosis in T-11 and 12 and broken. Dexa scan of femur said no osteoporosis. Crazy!
I do very well but I'm very careful. I washed windows a few weeks ago and killed my back forcing a window shut. Won't do that again.
Hi FF, thank you, I was treated with Letrozole and Denosumab but cutting a long story short, then got a jaw problem after some dental work and couldn’t have my Denosumab for total of 10 months, consequently some weakness has resulted in my bones..Dexa scan showed borderline Osteoporosis in my spine but my femur was fine, thinking my age is also a contributing factor. I’m back on the Denusomab so hoping things will improve by the next Dexa scan. I’m very lucky with my Oncologist, GP, etc, but she was on holiday and hadn’t met this chap before, very nice but he did confuse me! It definitely was cancer when I was diagnosed October 15, straight to stage 4, my primary has never been found, but I’m just happy, whatever he meant! I remember reading on here about your back, from what I’ve since read sounds like you’ve made a good recovery? Hope you’re otherwise keeping well, Kate x
Magick, I don't really have mets in bones. One time they said I did, then they said no. Last year I broke my back and they gave me a brace to wear until I had surgery. This thread for bone mets has ended up being a place where all of us chat even if we don't have bone mets. My mets are in my lungs and lymph nodes in my chest.
Never heard of Alozex.
Magick, You are doing fine with your English. As you read along you will find differences in my English too. Americans even spell things differently. Ex: We say...The blanket is "cozy". I think I've seen the ladies on here using "cosy". Your English will also improve talking with us. I never did well with languages. I think I would do better if I moved to another country and had to learn.
I was in my younger days learning a good bit of sign language because I had a friend with a deaf brother. I don't remember much. I can still sign the alphabet and a few words.
Have a good day! FF
Kate if they think it's not cancer that's great. Make sure they keep an eye on the arthritic changes. I have osteoporosis from all the cancer treatments. I've lost 2 inches in height. Also last year broke my back and they cemented and pinned it. I'm now on none strengthening drugs. It is called prolia and you get it every 6 months. FF
There wasn’t any mention of infection, only arthritic changes, and my blood results were very good. You too, best wishes, Kate x
I’ve just had my MRI results and while I’ve been NED for almost three years today I was told there is no sign of cancer in my cervical spine (where my mets are) and the scan is now only showing arthritic changes. I said about having been NED (it wasn’t my consultant as she’s away) but he just said again about arthritic changes. Obviously I’m delighted whatever he meant but wondered does anyone know is there any difference? Thanks
You are welcome to join this site. Sorry to hear your mum has cancer. I got my first cancer diagnosis in August 2013 too. When my mum had breast cancer I wish there had been a site like this: I would have joined it. We are a "mixed bunch" meaning we are quite diverse. We can rant, learn to understand different points of view, sometimes even laugh and it certainly helps me to cope a little better sometimes. The site has been a bit quiet recently but there are a lot of people on it. Hundreds of years of experience I guess!
Magick, I'm from the USA and I belong! Also we have had family members join before. How long has your mom had secondaries? Where did it come back at? Mine came back in my lungs 13 years ago. Welcome! FF
Sorry not to have replied earlier Riversidedawn - I thought I had already but obviously not .....which is another thing I'll put down to chemo brain..again ! I don't appear so far to have had any SE from the denosumab . The everolimus and exermestane are the tough ones for me. Even the BC nurse said they can be hard to tolerate but I was crying at the time so maybe she was just being kind to me !. After a scan 2 weeks ago they discovered pneuminitis in my lungs so have had a 2 week break to clear it up as caused by the treatment. Now I'm back on it at a reduced rate and so far so good....although worried that it will only be half as effective now!
Good wishes to everyone on this thread, Gill x
I've been diagnosed with bone mets last week, 5 years after primary. Getting anastrozole and zoledronic acid infusions, is anyone else on this?
I keep crying a lot as well, not sure if its shock or the anastrozole.
My bone mets (and lung) were discovered in August this year after I broke a rib back in Dec and it wouldn't heal. Eventually a nuclear scan showed up the secondaries ! I had BC in 2002 and in the other breast in 2014 and am now devestated that this has now happened. My treatment for the last 3 months has been Denos umab injections, Exemestane and Everolimus which I've found nearly as tough as the chemo back in May 2014. I had a ct with contrast scan today and see the consultant next Tues for a comparison to see if the treatment is doing anything positive. I found the BCC forums really supportive before and although I never wanted to be back here it's a relief to read your threads and understand I'm not alone !
My bone mets were found accidentally after another unrelated procedure. You are so lucky you're getting scanned. I had gone to doctors severat times complaining of various pains but at no point did anyone suggest it might have anything to do with the breast cancer I had years ago. My pains are quite sharp - like being stabbed repeatedly rather than dull aches.
Some ladies have not known they have got bone mets, I was one of them. A routine mammogram showed a local recurrence then a subsequent bone scan picked up a couple of mets in my spine. I now have quite extensive bone mets but that was because I was doing so well a few years back that my regular scans got spread out too much so the changes weren't spotted as quickly as they should have been. On that occasion I did have a ache in my thigh which felt more muscular than anything but it turned out to be more bone mets. Some ladies have had a spontaneous fracture, others have reported having aches which were then checked with scans. It's not always obvious and unfortunately some GPs dismiss a lot of our concerns whereas they should take them seriously especially where there is a history of BC.
I hope your scans do give you the answers you need and that it isnt bone mets. However you have found the right place to come should you need further support.
You may get many different replies to your question, but they are slow coming in. I limped a bit but have limped a long time since an old injury. After the first primary it was assumed to be the tamoxifen. At the second primary I had a CT scan and bone mets were diagnosed then and apparently were from the first primary.
Your scan will hopefully be reassurring.
I was diagnosed with bone mets almost 6 years ago just 7 weeks after my primary diagnosis. Also had shadows in my peritoneum . I went onto Letrozole and Zometa which kept me stable for about 5 years then my TMs started to increase - scans showed more obvious infiltration in the peritoneum but my last scan also showed some differences in my lower back and the Onc told me that he suspected infiltration in my bone marrow.
I was put on cape and have just started my third cycle and my blood results have been very encouraging. I didn’t ask much about the bone marrow suspicions and am wondering if anyone here has any experience of this....or can point me to a site that has some information.
I am finding that I have lower back pain and am wondering if that is the cause. Have an appt with my GP next week to ask about pain killers.
Mrs timps, sorry you've had to join us but you will find this forum amazing. i can only tell you that when my scans are looked at and there is any progression at all my treatment is changed. Do you have a sympathetic gp or a breast nurse you can talk to?
Mrstimps, Some drs are more aggressive than others. They also go by how you feel. My oncologist will go and look at the scans herself if she isn't sure. If you aren't comfortable with this maybe a second opinion would be good. FF
Hi Linda so pleased for you that is great news. last time we talked we had both started on e/e,didn't work for me but glad you had a fair time with it. i imagine taxol is chemo, i recognise the name as a heavy 6 month dose years ago after my primary.Hope things keep going in the right direction for you.
love and hugs
Following a meeting wth the surgeon yesterday, it now seems that she would definitely like to do surgery in the New Year! Am currently gettng herceptin injections which are working very well, but she doesn't want to leave me undefended should I need to stop the herceptin for any reason. Surgeon and oncologist seem to have different opinions