Just came back from my oncologist appointemt, which this time left me speechless, as she told me that judging by the MRI my bone mets have become harder and she does not want me to have any radiotherapy at the moment unless I have pain, which I do not. Although I do not understand exactly what she means that they are becoming hard, I agreed as I do not want the rads. She thinks that the Denosumab is doing its job. However my Liver profile showed a bit up, so she was thinking it might be due to Letrozol. Anyone else on the same page?
It would be such a relief for me to have a piece of good news after all the issues I had.
Snap …my oncologist described my bones as like honeycomb when dx two years ago …not sure which description is better …cheese with holes or honeycomb but at least denosumab is doing some repair work …still confused as it’s injected in tum but how does it know where to go ? Does it have sat navigation to holey bones ?
Hugs xxx
Hi all, just thought it would be useful on this thread to say that when I had my whole spine radiated the other week they took xome pictures through the radiotheray machine because they weren’t sure whether the latest chemo was working or not and I was told later that it actually showed the new bone growing over the damaged bone and sealing up. Amazing as I have loads of cancer in the spine and significant osteoporosis. Apparently it takes 18 months for new boneto totally replace old. Now that has to be good news for us “bonies”!!!
Love to all and have a good weekend, just bought myself 2 nice presents on amazon to celebate.
Hello Ramade
Thanks for that info about the new bone growth …must be honest never thought too much about it before …obviously our bone juice is doing the job .
I don’t think anyone has ever mentioned this on the threads before …so thanks …
Hope u feeling betier after the rads …xxx
Well …I’m fuming …got a parking notice for illegal parking in a public car park …but I have my parking ticket here as proof ( always keep them ladies) and am a blue card holder …
I have e mailed the company twice with copies of my ticket but no reply …there’s no phone number to contact either …the firm is Smart Parking …just wandering if this is a scam ?
Xx
Hiya Maria
Your poor love …my oncologist retired last year too and I always felt in safe hands with her .
I don’t get tumour markers done but 6 weeks isn’t that long for the exmestance to get chance to start doing it’s magic …fingers crossed that your scan results will show as stable when u get it.
Try not to panic too much ( says old worrier knickers here!)
Hugs xxx
Hello Kirky
It just says parking charges notice …there is a photo of my car …with my hubby sat in it …I can see the ticket on windscreen and my Blue badge! We actually paid for 2 hours of parking and stayed 30 minutes !!
I smell a rat !!
Hi girls! Thanks so much for the info! My spine looks like Swiss cheese according to my lovely husband ? Don’t know whether the denosumab and exemestane (now added everolimus) are doing their job until next ct in December…
have oopherectomy tomorrow and although feel calm, anxious at the same time! ?
Can’t recall which thread it was now, but regarding Cadbury’s flakes - I found some and carried out some research for you… Sainsbury’s sell a pack of 9, and also packs of small Twirls( 2in each). Twins are flakes covered in chocolate …
Sadly I’ve had to chomp my way through about 5 flakes and 4 small packs of twirls…because I needed to make up my mind…
The research was quite tedious (???)
And unpleasant - but I’m happy to report the twirls do taste that little bit nicer Xx
Moijan( burp) oops…
Thank u so much for being such a good friend and researching the Cadbury Flakes. …but it must have been very hard to do and eat so many in the interest of “testing” … I think u will agree now that they don’t taste so good as they used to …I’m partial to a Twirl too but even they don’t taste like they should …bring back proper Cadbury choc …
I’m afraid my taste buds now prefer Galaxy and Terrys choc …but this morning only Rennie tablets are my best friend …had 2 glasses of wine yesterday and I’m suffering …maybe McDonalds will help! !! Ha ha …self inflicted not looking for sympathy !!
Hope everyone had a lovely weekend xxxx
Poor Ladybird’s in pain. The worst I’ve ever seen her with. She had a radio zap to the pelvis after Letrozole stopped working and she has been crippled with pain in hips and legs ever since. She goes for buttock injections again on Monday and Denosumab at the same time. Sounds like a fun day out!
Her leg pain is bad first thing in the morning and gets better as the paracetamol kicks in.
You are not alone!
Hugs
Chris.
Poor ladybird …pain is horrible and makes life very miserable. Just wandering whether the rads maybe have increased the pain temporary and it will settle. …I was told it can be 2/4 weeks after rads before they kick in.
Also, reading on the threads. .not from experience as I’m still a letrozole lady, but I think the buttocks injection Faslodex ladybird is having can cause a lot more bone pain too …it’s so unfair that something that is prescribed for bone mets can increase pain …
I had a lot of bone pain a few weeks ago …it’s better now but just took a couple of paracetamol at night and a hot water bottle …rubbed in ibuprofen gel too. I tried to ride the pain during the day by gently walking or focusing on a book or crossword rather than pop too many pain killers. …I find ibuprofen very good for actual bone pain but please be careful as they can be quite dangerous. …
I haven’t been on for a very long time. I have been suffering very badly with depression and anxiety. I am trying desperately to find something I can take to help me whilst being on my trial. I have also been having some worrying side effects so I had a brain scan 2 Mondays ago, I also had a CT scan as part of my trial (3 month check), results tomorrow which I am very scared about.
I’ve also been suffering very badly with night sweats (and hot flushes to a lesser extent) which are stopping me sleeping, I probably get 3 hours a night now. I haven’t slept a night through since mid-July.
Sorry to return with such a morose post, it’s taken me a long time to be able to even write this xx
this illness is such a bu*g*r! Isn’t it? Ladybird, haven’t had your kind of pain, but I do get pain…was on a tube today, suddenly was reminded I have rib mets…Have also had a strange pain down the front of my shin…I even went to chat to the venous cons briefly this am in case it could be a new DVT which he said not. The pain is very real thou. Jelly tot. I expect you’ve had your results by now, hopefully good ones? Again, I’ve been where you are, and Babsy, I can quite understand how much of a relief stopping treatment can be…Lots of ladies have mentioned this and there’s a lot to be said for quality of life.
anxiety and depression and also sleeplessness are so common amongst us…Cancer does this…it is insidious, silent and very crafty…;…trouble is, the drugs do these as well
we can’t prescribe or advise, but my go gave some amytriptiline tablets for sleeping and these seem to help.
i checked in a couple of months ago having not been on this forum for a good few years. After 9 years on herceptin and tamoxifen I have progression in my sacrum. Had a blast of radiotherapy and this has helped with the pain. The plan is that I am going to start Kadcyla and denosamub. Is anyone else on this thread having Kadcyla as I would like to know how you have got on with the drug. I would have preferred to have stayed on herceptin and added an AI or a chemo such as capecitabine. Have been advised that this cannot be done due to funding and that I will not be able to back on a herceptin combo after Kadcyla stops working. As a consecquence I feel that I have fewer options open to me.
so first things first, I have been taken off the trial drug, apparently depression and suicidal thoughts are now a known side effect so they don’t want me on it any longer.
CT scan results weren’t reported on but the oncologist said from his untrained eye they didn’t look worse.
The scariest results however were those from the brain scan. It’s come back as “abnormal”. The onc said they didn’t present as brain mets from breast cancer but there are “lesions”. I am so scared. He wants a neurological specialist to look at the scan.
I have no idea how to process all of this. Firstly being off the trial, what the heck is my next plan, secondly if it is in my brain, how on earth do I deal with that. I feel in complete limbo. I have to wait 2 weeks for my next appointment.
Oh jelly tot
I will be the first of many to reply …I don’t really know what to say but it’s trial and error finding the right treatment plan and hopefully your oncologist will be doing that …all the waiting around is the worse bit but try to focus on something nice in the meantime …
Hugs xxx
I just wanted to add my hugs to you . Like you I have only started the journey this year so we must take hope from others that we have lots of treatments. I seem to get low when I am alone or with my husband and kids I have a different face for my friends and at work but everyone is right in that we must enjoy normal and treat ourselves. Wishing you the best Wendy x
Hi Jellytot, a few years back I had a brain MRI…was clear of cancer but showed some blocked tiny vessels…as others have said…keep an open mind until the scan is properly assessed…might not be cancer, other things can cause lesions in the brain…try to keep an open mind, and also try to distance yourself a bit until you actually ‘know’ the score… our minds[mine included!] are absolutely brilliant at focussing upon worst case scenarios [wcs] my mind has an honours degree in this and it’s usually way off beam.
lots of love…try to focus on today nothing is changed from last month…until you are told otherwise.