This has been too quiet x
Yes i noticed that myself. Ive been looking on here for a few weeks now but no recent posts.
Could do with some uplifting…especially on lung mets 
love bev xxx
I have lung.mets too x
Hi bc-lass…its funny but when youre talking to so many people on here you forget who’s got what! You have to keep scrolling through previous posts to find out lol! How long have you had yours?
Love bev xxx
Double whammy last july to bones and lungs. Have thankfully stayed stable with fec then tamoxifen. I also use mistletoe iv. How about you?
Just dx in may this year. 2 opacities found on xray 5cm and 2.5cm. One at base of right lung and the other more central compressing on windpipe. So i have a cough and breathlessness. But theyve recently started me on small doses of oramorph which helps.
I had a routine chest xray in aug last year at a local hosp after being admitted for something else which i was given to believe was clear. It was only when i had another xray in may in same hospital when i was referred by my GP, that it came to light that the August xray had also shown 2 small shadows but had failed to be reported to anyone.
I made a complaint to the health board insisting on a full investigation and have just had a 6 page letter from them admitting a breach of duty of care and admitting a catalogue of errors during my admission. Its now in the hands of solicitors.
So my treatment could have started 9 months earlier and may not have been as aggressive.
Still…can’t change anything now sadly ?
Do you have any symptoms at all?
My next ct scan is 4th Nov so im hoping there’s some shrinkage. The first scan 2 mths ago after 3 cycles of Capecitabine was exactly the same as at dx. Stable but no shrinkage at that stage.
Love bev cxx
I get some bone pain, breathlessness when climbing stairs etc. Had cough but that seems to be down to reglux caused by ibandronic acid.x
I get same problem with stairs…and i cough if i breathe in too deeply! I wonder if these symptoms will worsen with the cold weather? xxx
Didnt really last year for me as far as i can remember.
In a few weeks time it will be a year since I was given my treatment plan for TNBC lobular tumour mass in abdomen, told chemo only option. Capecitabine was doable but by end of 8th cycle (2weeks on & rest week) my hands were very sore & neuropathy was making caring for myself difficult. I am a single lady with some understanding neighbours who will open tight bottles & jars - including the Manuka honey!!
In April I went to France for a week (extra week off) & then given extra 3 weeks to allow hands & feet to heal, a month after the last dose tumour markers were down to 600 - still extremely high but a whole lot lower than where they started at 1,800. Markers stayed down until August, I couldn’t believe how well I felt out & about seeing friends & joined a couple of ‘Knit & Natter’ groups - I had been unwell last summer until my diagnosis. saw Onc last week, markers now 1,200 so restart Cape on 20th, awaiting appt for 3 mthly CT before then.
I never dreamt in April that my ‘chemo holiday’ would be 6 months. So it gives me some hope for the future.
Monica
Thats good to hear Monica! Just shows that you can get on with life and do normal things if you have the right treatment plan in place.
Long may it continue and hope the hands and feet are not too sore for you ??
Love bev xxx
Hi Monica, Bev and BC-lass
I keep looking for inspiring news too. I’m always delighted to see anyone’s good news but particularly pleased to hear how well you’ve been responding to treatment, Monica. As a fellow TN I really need some hope. I have fast growing/spreading skin mets and a sub pectoral tumour, plus I’ve just noticed a new lump today above the sub pec tumour. Desperately need to get started on treatment as it’s all been growing uncontrolled for 3 1/2 months… but I’ll leave that story for another day and thread.
Flo
X
Hi Flo…i really hope you get a good treatment plan in place soon. When are you due to start? I’m sure things will start to improve then. Keep positive…its hard i know at times.
Sending a big hug (((( ))))
Love bev xxx
Oh Flo…what a horrible way to be treated! No-one deserves that! Why are some oncologists so uncaring? Why wait for spread and then treat palliatively? Thats madness. Hope you get to be treated more sympathetically in the future.
Keep going!
Angelina… ive been on Cape since july and found it really manageable. Not too many side effects…slight dry skin on heels and occasional diarrhoea and i went for 2 months before the side effects started. I suffer with breathlessness too and find it really frustrating after being so fit for many years before. You should be fine on Cape though.
I cant believe you had a bad experience with your Onc too…whats wrong with these people? So heartless.
If the Cape doesnt work then there are countless other drugs that probably will. Why tell you that you only have limited time?
No wonder you’re demoralised! You must be desolate and at your wits end…i know i would be. I really feel for you.
Hoping you’ll have more encouraging news and sending huge hug ??
Love bev xxxxx
Bev and Angelina - Glo’s post sounds very encouraging. I hope we’re going to be chatting for many years to come.
XX
:smileyhappy:
Angelina - I know what it’s like when you feel written off, it’s awful. Your poor husband too.
Perhaps it would be worth getting a 2nd opinion? I’m so glad I did after being written off by my local onc. At my referral last week their opinion regarding treatment was completely opposite to the awful onc. My surgeon referred me but my GP also would have done it. Do you have a good GP who you could talk through your concerns with?
Glo - good luck with your new regime. I hope you return quickly to the land of NED.
Hugs((()))
Flo
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