FF really exciting. It’s all the waiting ha ha. I adore my grandchildren and they really lift my spirits. I’ve had extreme pain these last few weeks. I often sleep in our recliner and it doesn’t touch the pressure points. Getting into bed and trying to find the one position !!! I’m on a much higher dosage of morphine and nerve blocks. It’s because my lower left rib has squashed nerves. Also I’m having radiation on the area next week. I asked for I’ve never been informed about this option it’s only being on the forums that I knew about it. Disgusting really, I think I’m getting so angry because this scenario and many worse things have happened to me and it’s only cos I had knowledge about certain things. I’m thinking of creating a leaflets for people diagnosed with bc and MBC. A good idea?
Morning ladies
Just back from another visit to Christie with Ladybird.
She has now been taken off Letrozole cos more tumours have appeared on spine and hip area. They have put her on Fulvestrant injections and suggest some radiation.
Letrozole worked for 2.5 years but now seems to have run its course.
Anyone here on Fulvestrant?
Love to all you ladies.
X Chris(topher).
Hello Chris and ladybird
I found an older thread under treatments and medical issues which I have bumped up for you. Hope it helps.
I think I read that only a few bigger hospitals in UK are self funding this injection but there are a few ladies here that might be on it.
Sorry ladybird is leaving our letrozole club …but it’s been good for over two years …so time to move on to something better maybe.
Hugs xxx???
Can anyone offer any advice please? After several treatments I am now on Paclitaxol. I have had one course out of six, feeling ok but have now developed a tooth infection. I have potential ONJ so the tooth cant be taken out and I am on antibiotics yet again so the next course of chemo is being delayed until the infection clears. My question is, does it matter if chemo is delayed by a couple of weeks? I am really scared that it is going to run rampant during this time. Has anyone else had treatment delays? Feeling really low at the moment and need advice and reassurance. Thank you. Nanofthree xx
Hello nanofthree
Welcome back …its been a while since we heard from you …as usual I’m as much help as a chocolate teapot with advice about the chemo stopping!!
Hopefully …one of the wise owls reading here will be able to help.
Sending hugs xxx
Hi Carolyn. Thank you and sorry I am here again! I am sure someone will reply to my cry for help! Xx
Hi Maria Louise. Thank you so much for your encouraging words. I will try not to worry! You just imagine the little blighters multiplying like crazy dont you. But you obviously didn’t suffer as a result so hopefully I will be the same. Hugs xx
Hi Kate. That sounds very interesting. Do you need your oncologists approval to take this? Would you be able to let me have the details please? Thank you. Xx
Hi. I hoping someone can give me some answers about the length of time between scans. I had my first scan at the beginning of June when I was diagnosed. I saw my onc a few weeks ago and he said he would see me late November and he would see about arranging a scan. It is going to be at least six months since my first one. Is this normal timescale?
Benten x
Hello Benten.
Just to answer your question regarding scans …I get mine every 8 months … I see oncologist every 4 months. …I think every hospital varies with these things though.
Xx
Thank you ladies for your replies about the scans. I suppose it is getting used to the difference between the intensive months of treatment when you have your primary and how I am being treated now… You feel as if you are never away from the hospital or doctor and your whole life seems to revolve round your treatment with your primary. This time I pop a pill every day and get an infusion every three months, Life on the surface is back to normal. Don’t get me wrong I want it that way and hope it stays that way for a long time. However my mind is on it all the time. When I am at work I can forget about it for a while but when I get home it all comes crashing back in. Anyway enough moaning, off to Tescos. Everybody still wants fed.xx
Morning Benten
Regarding scans hospitals seem to vary quite a bit in my opinion. Is a a bone scan or a CT scan you are asking about?
I can only speak regarding myself I was diagnosed with bone mets same time as primary over 8 years ago. Finished chemo and Rads in April 2010 put on Letrozole which worked for 4 years I did have any scans at all until January 2014 when I complained about more bone pain. Had a bone scan CT scan then treatment was changed. From then I seemed to get scanned every 6 months for 2 years then last year it seemed to change every 4 to 5 months.
Now this year had CT scan in March then another one in August hope that helps you understand more about scans.
Linda
Hi Kate. Sorry, I have also been away tho weekend in the new forest. Wanted to forget about cancer! But home now and thank you for the info. I am not sure about what you can and cant post either. I see you are on letrozole, but even though I am on chemo I am still going to ask onc. You never know! Will let you know. Hugs x
Hello Maria
Two months isn’t long for your exmestance to start working …I think it needs at least 6 weeks to kick in and start blasting the little blighters …
It sounds like you are being well looked after with all appointments but sometimes u just want to forget hospital and get back to normal !!
Hugs xx
Hello ff
Happy birthday for yesterday …glad u had a good time and wow that breakfast sounds gorgeous but huge …I prefer going out for breakfast or brunch as we call it …don’t eat much at the end of day these days …indigestion usually kicks in !
I know this sounds silly but I read somewhere that starving 12 hours a day stops the cancer feeding so much …so I never eat after 6 pm and then don’t eat breakfast to 9 am at least the next day …it was probably a quack article online!!
Well ff …u need to get that back sorted so u can get to the shops and spend your birthday money on some nice new slim woman clothes after all your weight loss.
Sorry about the pudding feet and ankles …maybe just side effects of some of the pills u have taken.
Hugs xxx?
Hello Kate
I must be the most unhealthy person here …I eat too much choc and junk food etc etc but I must say I have been doing this little routine for a year and don’t get kept awake by indigestion or heartburn !
Well just had my flu jab …so hopefully it will do it’s job again …useless info from my nurse but the jab takes 2 weeks to start working so anything like a cold, runs or sickness in that time is not related .
Xxx
Hello Maria
No the ct scan doesn’t cover the boobs …I asked that too …it’s got to be the mammogram for them which is more specialised. I also find that ct scan only covers neck to hips …no legs,arms or head which to me is only half a job !! Bone scans do the whole body and mri is a lot more detailed …
Welcome to the world of scans,anxiety and appointments !!
Hugs xxx
Hello ff
So glad you are getting back into normality in your own bed again …I’m been getting a stiff neck the last few days and so I’m off to buy new pillows as I think mine have reached their sell by date !!
You will soon be pram pushing and need to be fit for that …I’ve got the baby shower on Sunday. .only about 6 weeks now before the twins will be hatched !! Once Xmas is over you will get the best gift of your new grandbaby too …
Hugs xxx
I hate January and February too but yours will be so busy and exciting with the little one …and then before u know it …spring and summer
Xxx
Hi All
Firstly welcome to all the newbies and congratulations to all the nannies in waiting. How exciting . I have been through another round of radio treatment to spine and then bone scan which was good news as nothing else detected and tablets changed to letrozole. Had second zoladex injection today. However, have pain across top of back but bone scan only 2 weeks ago so hoping it is just referred pain or tension as back at work rather than tablets not working. I too feel I am constantly at one appt or another and still need to go back to finish reconstruction and tempted to have lopsided boob forever. Anyway chin up love to all and it’s now home time. Wendy
P.S jelly tot how are you I have not seen you posting lately? Hope all ok x