Hello ff
I’m not sure but I don’t think we have wild chipmunks in the UK. …but the pet shop sells them as pets and they are very popular. Not for me though …hate anything like that …hamsters , gerbils etc etc.
Don’t work too hard …it’s hot here so maybe a nanna nap for me now with my lovely relaxed feet !
Hi All
Got a stable result today and the pain in my hips is bursitis so all good to go on hols yippee. Long may it continue. Sending best wishes to you all that your treatments are working. Enjoy the weather here and across the pond x
Hello Hayes wen
Whoop whoop. .good results but we mustn’t forget bursitus is very painful too !
Enjoy a holibob …remind us what treatment you are on again? I forget who is taking what these days !
Hi silver lining
In answer to your question yes I do have regular appointments wirh oncologist you should to. At first back in 2010 after I finished chemo and only on Letrozole it was every 3 months. Now I see oncologist every 2 months since October last year when I started. Capecebine.
If you are not getting regular appointments I would ring oncologist.
Linda
Hello silverlining
When I was on letrozole only for bone mets .I saw oncologist every three months …saw nurse monthly for blood test and bone injection. I had ct scans every six months.
Now have progress and on exmestance and evelimous so see oncologist monthly.
It’s very hard to work out new pain …medication , cancer pain or just old age !
The one thing that never convinces me is bone pain is healing pain …my old oncologist said no such thing!
At the moment I have very regular appointments and will have a scan after three months. I’m not sure how that continues. I would like to be scanned regularly to know what’s going on! My breast lump has shrunk on Ibrance so it’s not so upsetting looking at it.
Hi all
I am on letrozole and palcocilib have had 6 cycles. I have denusomab for bones and zoladex injection monthly too. I see my Onc at Guys every 4 weeks as they check my bloods but I also have private health care through work so get all my scans and results quicker. I have also had 4 lots of radio to hips, pelvis and spine again done quickly as private. I am very lucky in that respect. Breast care nurse on nhs is virtually invisible so do sympathise but overall nhs is excellent. I have also had masectomy but no recon yet as keep changing treatments but hopefully will get sorted at some stage. I was also straight in st stage 4 so took a long time to get over the shock I was told it is like ptsd. Anyway enough said enjoy the day I am on a sweaty train but at least I have a seat x
I am only just starting on this journey but so far am so grateful to the NHS. I wonder if it varies from hospital to hospital. We shouldn’t be intimidated. I think we can ask politely for explanations of decisions and if people want a scan ask for one and if it’s no ask why not. At the moment I completely trust my team and am grateful for all they do. I’m rambling! Speak up politely!
Yes Silver,
i have whole body mri’s every three months…I don’t have cts- unless they decide to cross tabulate—-
mri and ct slice sections differently sosometimestheyhave cross checked. My bc is creeping along so that’s why.
when I was a primary…was not given either…but we’re-talking 2001
do speak up, as Kate says and take a hubby, buddy, or someone with you to help…they can help you feel stronger in that situ.
best of luckxx
Moijan?
Oh, and sometimes it’s monthy onc appts especially if having chemo
Silverlining, happy Sunday, I’d just repeat what others have said, no appointments in 7 months is crazy! You do not have to have progression to get an appointment or scan, your Oncologist should be checking that your treatment is working! Waiting for pain is nonsense…
It is very hard to be assertive when sitting in front of the specialists, I feel that I just want to escape. Why not try your Onc’s secretary or BCN (if you have one) and insist on more regular monitoring before your appointment, no one is going to fight our corner as well as we do ourselves.
I don’t have bone mets but as a comparison, I’ve been nearly 2.5 years on a drug trial with appointments every fortnight and scans every 2 months, just in the last few months this has changed to every month with scans every 3 months. I know a trial has to have strict monitoring but with all my other treatments it’s always been appointments every 1-2 months.
Thinking of you x
Hello ladies.
I don’t have bone mets but have recently found out I have liver mets. I’m 44.
Originally diagnosed with bc last April. Er+ her2-
Mastectomy and full lymph node clearance. 7 out of 26 nodes infected. Fec-t followed along with 15 sessions of radiotherapy. I’ve been on tamoxifen since December.
I recently had a ct scan in preparation for a diep reconstruction and unfortunately they spotted cancer.
My oncologist called yesterday to say he’s sending me for a biopsy to see if my original bc status has changed.
I’m relieved that it hasn’t spread anywhere else yet but very worried that there seems to be a lot of it. He was quite vague when I asked how much. The most he would say is that less than 50% is affected. ?
I was really hoping for surgery but can’t see that happening now.
Anyone else been in a similar position?
He did mention giving me cdk46 meds instead of chemo.
Angela
Good morning ladies
Well at silly o clock in night I was playing Mahjong on my kindle and something tickled my nose. …it was a flying type spider and he sort of came down from the ceiling on a web! Well little blighter got sprayed with fly killer very quickly …what is it with me and spiders. The pied piper for spiders here in Devon that’s me. .ugh.
???
Thanks silverlining.
I was hoping there’d be more of a break before I had to move onto the secondary forums, but I’ve never done anything by halves, so hey ho.
While waiting for my next oncology appointment ive emailed a couple of prominent liver met specialists.
I’ve been reassured to be advised that Letrozole and Palbociclib have a very good chance of getting me into remission. So for the good of my mental health, this is what I’m choosing to believe.
Yes, I have a very good circle of family and friends. Although, it’s them I worry about the most.
I’m so pleased you had such good results. You offer so much help and support for everyone. Glad you had a good holiday.
Palciobiblib (I call it Ibrance as I can’t spell or pronounce its other name!) has had a lot of good results. You can read about it on Inspire as it’s popular in America
Hiya nicky
Glad u have enjoyed another holiday and the liver op paid off …what great results today …very wise to wait until after hold bob for results too.
Assume you are just on a hormone now for maintenance care for bones with denosumab jabs. Must be nice after all the chemo years.
Xxx
Thanks for the replies ladies.
Nicky, I’ve been looking through your old posts and they’ve definitely given me hope.
How fantastic that your liver mets are now stable. Long may it continue.
I’ve heard that only her2 positive liver can be treated surgically, so it might sound absolutely ridiculous, but I’m kind of hoping they find it’s changed to that once they do my biopsy.
Angela
Great news nicky long may stable mable reign!!! Xx
I’m also pleased to have the Stable Mabel label after getting good scan results after 3 rounds of palbociclib and letrozole for extensive bone mets. Such a relief. Long may it last.
Hey Nicky, welcome back to the Stable Mabel club!! fantastic news, I’m so pleased for you, glad you enjoyed your holiday too.
Silverlining, as others have already said, far too long between appts, I’m in the stable Mabel club and on hormone treatment with now vertually no pain but still scanned and seen every 3 months.
Feelthefear, that is not good from your onc, pain is the worst thing, apart from the fact it blo-dy hurts it’s also what it does to you mentally, for the “mind games” are the worst thing!
Oh Carolyn, you and spiders ? haha, I must be the only one who isn’t fazed by them, I’d rather have them than flies I hate those dirty horrible things!!
Hugs Janette xx