Hi Carolyn, what makes you think I was referring obliquely to you , haha.
now, its official...Carolyn always carefully reads up on posts before inputtingxx
actually I love kitkats, but was telling Barton that I cant have too much chokky as caffiene irritates my bladder!
so im stuck with a bounty or. Turkish delight, but we whouldnt be feeiding our bc with sugar, should we??
in the chemo suite there are always little bowls of sweeties....and I sometimes succumb, but usually I manage to avoid them. I also get a free sandwich there now and tea and biscuits...feel so well. cossetted, comfy lie back chairs, could be a spa cafe, if it wasnt for the plug ins?
Hi Gang! Welcome Chris! Chris some doctors try to make an educated guess on time others will not commit themselves to a guess. Mine told me it's not an immediate death sentence but he thought I had two years. It's 11 years now!
Carolyn my bones crack and creak worse than my peeps at the senior center where I work. I wish you could see them exercise! I could never keep up! I walk slower than most of them. Btw Friday was a great day at work. It was PJ day. I wore my PJ's with a cardigan sweater for a robe and comfy slippers. Hubby went away for the weekend so I came home and stayed in them. I had a pair of fuchsia Mary Jane crocs. Seriously, they were so light and comfy! I wasn't allowed to wear sandals when I drove school bus. My feet needed to breathe. I would where them to the creek with my dog too. Could walk in and out of the water. My feet swell in the summer and they worked well with that too. They make flip flop types too. I was thinking of trying a pair.
Waiting to hear from Pfizer for delivery of my ibrance. I was supposed to start my next cycle tomorrow. I have 3 extra pills, I could start with them if Pfizer can guarantee shipment by Thursday.
Hubby won't be home from his weekend excursion til later today, so I'm off to see what trouble I can get into. FF
I'm 70 too. They say 70 is the new 50 but i struggle to believe that now. I am on exemestane and denosumab and stable so far. My onc told me that the exemestane would only work for about 18 months but having read here that doctors' predictions are notoriously unreliable I remain optimistic till told otherwise. When it does stop working I have not decided what i shall do. Your wife is so fortunate to have such good support from you. B xx
Hi Chris, welcome to the forum, sorry you have had to join us (on behalf of your wife) we are a friendly bunch and are always on hand to offer help /advice and support......oh and we are a bit of a crazy crowd from time to time, especially the lovely Carolyn (I know you won't mind me saying that Carolyn ) 😁
I am the same treatment plan as your wife, and also be treated at The Christie hospital, different oncologist though as mine is female, she also doesn't say much, I think as long as we are stable they are quite happy with that. I asked her once about "healing mets" and "NED" (no evidence of disease) she said they don't like to use those terms at the Christie and are happy with stable results.
Morning Carolyn, no I have to hold my hand up and say I've never had a pair of crocs! I'm still rebelling and wearing heels, only at the weekend though (not really high ones )
Well a wet and miserable day here in Manchester today so lazy day eating chocolate and watching the TV for me!
Hugs J xxxx
Welcome, and love and best wishes to your wife. Its always a shock to get a bc diagnosis isnt it?
and its so scary...especially if a doctor makes a similar prediction to the one you were given.
when I was initially diagnosed in 2001 with a large tumour in my breast and 12/13 lymph
nodes...some of which had leaked into the armpit tissue...I was told it would
likely 'be back within two years'
well, it did come back - about three years ago! Like many other ladies, I have bone mets,
also liver mets and currently these are well under control.
Most of us have ups and downs, either in our cancer spread or emotionally or both....
But this forum is a lovely welcoming place where we all share support,
so that really helps xx
Doctors have to tell it like it is...but sometimes I wish they wouldnt make
' survival predictions', because actually no one knows! And of course
if a 'Doctor' makes a prediction it sounds like gospel and we often believe it.
Like many others, I am on chemotherapy and am so blessed that it has shamed the
cancer into a corner and I'm leading a fairly normal life around the hospital visits xx
Please come back and join in, let us know how things go, we are all here
for each other X
Hi Julie D,
thank you...im fine xx
how are you? I had felt the forum itself was a bit quiet....but assumed the ladies were hibernating in the cold weather, maybe with a blanket and a hot toddy. Xxx ( or some may take a pile of kitkats with them!)
I;m glad your wife is doing well on treatment and hope this continues for a long while. I have had bone mets since 2010 and am on very similar treatment to your wife (i have Zomeata rather than Denosumab but Denosumab is the newer more up to date treatment) so yes, these treatments can work well for us. x
We haven't haf a man on the threads regularly since Wayne several years back, who like you, was finding info for his wife. Welcome! There are also sections here for relatives and friends and the phone line can be used by you too so if you want any support for yourself (it is hard for partners, we know) then do please use the support here.
Carolyne I still wear Crocs but boring black ones at the mo, so handy just to slip them on when popping into the garden or onto the balcony, so light. I wear flat shoes when I go out, but have never really been a heels lady, wore those 4 inch wedges when I was a teen though!
I'm so glad you both managed to get to Ellies celebration and that it was such a lovely fitting tribute to her.
Moijan, good to see you posting, you've been a little quiet lately and was about to PM you to see how you are doing.
Have a good weekend all xx
Well done Carolyn and Barton,
Ellie was a lovely lady, tho we never met. Glad you could go, as you met her regularly didnt you?
Sensible flat shoes here! Anything with even a small heel puts too much pressure on my already screaming knees! I even had to get Mary Janes bc my toes don't want to work right to hold other shoes on. I want my clogs back!!
Falling is scarey! I always feel I'm going to be broken or split somethin open and need stitches! Thankful you are OK, Bonariensis! FF
I am absolutely with you...live in fear of a fractured femur( broke my wrist xmas 2015)
Just as a cheerful aside...have any of you ever had dizzyness when bending down or looking up?
that happened to me on Tuesday, bent down/ forward to look at a small chip in the paint of my recently bought new(er) car...stood up and if it wasnt for grabbing my wing mirror...would have fallen flat on my back! Had a mddle ear infection about 5 years ago and ever since have had to be careful not to turn my head sharply!
anyway..I managed to drive home feelng absolutly fine and later realised it may be due to another( oh joy) blasted wee infection! Looked it up...can cause that...so am hoping the keflex will cure the b*****r.
am glad you are ok tho Bon. Were you wearing some cast off killer heels from Carolyn?
Oh crikey, Bonariensis! I bet that was a fright! I live in fear of falling over since diagnosed with bone mets, and having compression fractures in 2015. I am so glad you are OK, but please take things easy for a while - shock, etc, can come out later.
I hope the bruising isn't too bad but no broken bones so that's a good thing.
I know what you mean about the sensible shoes Carolyn. Did you watch the Ab Fab movie? There was a scene where Eddie's mother, June Whitfield, was with her (elderly) chums and Eddie and Patsy commented on them all wearing wedges! The most comfortable strappy things invented for sore feet! However I'm about 30 years younger than June Whitfield so that's not so good. 👠
Denosumab has turned me into the iron lady. Yesterday I was out putting up posters for the village panto when I fell over (or as it's called when you reach my age, 'Had a Fall'). As my chin hit the tarmac I thought 'Goodbye denosumab' but no, everything seems to be OK apart from bruises and scrapes. There may be a few questions today about the state of my face. The panto is called 'Beans' and is on the 27th and 28th at Blackawton Village Hall.
Love to all particularly those waiting for results. B xxx
FF, brilliant news.
I do try to follow this tghread regularly but its sometimes so bsy i lose track so apologies to anyone i could have responded to and havent. Best wishes to all, especially those witing for scans/results. x
Thanks ladies! It was very hard to post about being happy, when we are all so upset over Marirose! I decided she would want me to be happy and post. We carry their torches with us!
Nicky, I don't know about you but I hate having to adjust and find the new normal! Why can't we just be normal! Whatever normal is!
I already posted it elsewhere, but I also had immunotherapy at Hallwang, now more than two years ago. I had breast cancer and i am Male. That is very rare but just as bad. I have been in complete renission for 2 years now, so I can only speak highly about their treatments, they are indivual and unique for every patient.They performed a tumor-associated antigen test and Next Generation Sequencing on my tumor tissue in order to find the best targeted treatment for me, as these tests show genetic modifications or expression of certain surface markers found on cells. So, in your case a totally different expression pattern could show up, which means there is a different medication or vaccine for you. That is what I like about their approach-it is not one drug for all, but really individual-based.
I also Love that they Know what they do and keep up with research. The doctors there have a profound research background and knows their stuff. I have been to clinics that offer you some Kind of vaccine or so-called immunotherapy without understanding the rationale behind it. I also recommend getting Information from Hallwang Facebook site, they are actually the only clinic i Know that posts real scientific data from ongoing trials and not some opinions or weird data of unkown origin.
So I can only recommend the clinic to you!
Hello Nicky, sorry to hear you are so tired on Kadcyla - I hope you can "get used to it" like you did on Cape. I know nothing to do with chemo is easy, but, as long as we don't have severe se's, we all tend to accept the little things as the new normal - I hope it gets to that stage for you but is still effective.
Good luck to all who are having tests, results, se's, and just generally struggling with things.
Hugs to all. Barton.x
Just wanted to say "so happy for you FF!" Free treatment for a year must be such a relief, long may it continue to be effective for you.
Nicky, I'm thinking about you and everyone having new scans and treatments, wishing you strength and positivity.
Carolyn, it's so hard when a good friend on here passes away, it makes me feel sad and I'm not a regular poster like you. I'm in awe of all the community champions giving so much of their emotional strength to supporting people on the forum, it can't be easy and you do a fantastic job xxx
Hey FF, that's brilliant news. I've been following your tale about all the forms and how much strain financially and mentally this is for you - but not having the energy to reply! What a relief especially as it's been so effective for you - long may it continue.
Thanks Janette, Helen and FF for your kind words. I must admit it has surprised me how cr*p I feel! I chat to another lady on the chemo ward who has been having this for well over a year so had expected to feel just like she does - a bit tired for a day or two then up we get again! I'm hoping it might be a bit like starting on Capecitabine all those years ago when I felt rotten the first few cycles and then tolerated it very well- other than the usual hand/feet soreness. I live in hope!
ps Good luck with the MRI Helen, all very confusing - I know what you mean. I'm having another liver biopsy done next week to see if the little critters have changed sides again! Not looking forward to it but it will give a more up to date picture of what's going on - the last one being in 2013. See you later this month x
Hi Girls, A bit of good news! I was approved by the manufacturer of penicillin (ibrance) to get my drug free for one year! They said first they will give my name to a company to see if they can find a grant for my copay. If that isn't found then Pfizer will assist me! They said either way I will pay nothing and its good til the end of the year! I don't know what would happen if some how it is still working at the end of the year r! Will deal with that next year if I need to! FF