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
What an awful shock to hear about Marirose. Like many of us I had no idea she was so ill. My thoughts are with her family and friends at this sad time. Thank you Carolyn for letting us know.
I have been a bit more absent of late as I struggle with the after effects of my Kadcyla treatment. Having naively imagined it not to be as debilitating as many chemo's I have been absolutely washed out by it this time around, sleeping for about two days! Very unlike me who can't even fall asleep in a chair! Hopefully things will improve as they did for the last cycle and I can be more active on here.
Also shocked and saddened to read the post about Marirose....she was one of those amazing ladies that gave so much advice and support whilst making very light of her own health. Fly high dear Marirose, you will be sadly missed. Condolences to her family and friends xx
Wow, I didn't know Marirose was that I'll! Quite shocked! She was a kind lady always helping everyone. RIP...Hugs and love FF
I am so sad to read the sad news of Marirose. She was so kind to me and often PM when she knew I wasn't well. This kind , caring , funny lady will be very much missed . Oh Marirose , we never met , but I feel we jad become good friends. My thoughts are with her family . M xxxxxx
On no!! I didn't realise Marirose had become so ill. She was a lovely, warm, caring woman and will be greatly missed. I'm very sad to hear of her passing
Well, a real shock.
Marirose was such a support to everyone, across the threads. In tears of course. But she has her well deserved wings now. I'll miss you, Marirose. Fly high.
Hello Lesley, so glad you have the all-clear! It's great reading news like that! And don't worry, cry if you need to - I can understand how the relief can be overwhelming!
This site is what keeps many of us going - we all appreciate all the support and uplifting stories, and even the shared tears.
I do hope you never need this section of the Forum again, but if you do, know that we are here for you (and anyone else).
I too have very difficult veins, even before cancer I was thrown out of blood donors for being too slow! When recently admitted to hospital they ended up doing a femoral stab to get blood out of me, that was after they had used my arm as a pincushion. The technician who attempted to put a canula in my hand for the CT scan recomended not eating any carbs for two days before and then on the day eating lots of carbs to plump up the veins. I had never heard this before and haven't yet tried it but it may be worth having a go.
Just a quick one to hopefully continue to give you hope and positivity.
I was dx with bone mets nearly 11 years after primary. They are quite extensive : ribs, spine, sacrum ....My Onc gave me a zap of radiotherapy because one tumour was very close to spinal canal and also a zap for pain. Then I went on to Letrozole (Femera). I did question my Onc and ask for second opinion as I felt it wasn't aggressive enough treatment. They confirmed my Oncs choice was good for me and I have been on bonejuice and letrozole and am stable with no significant spread over six years on. So you can see hormones can be very effective. We have several members who have lived for many years with bone mets. Dawn is one of our lovely ladies and has been living with SBC for around 14 years.
There is a term for those with just one met but can't remember it at the mo. However, it does appear that often if you have only one or two mets it often stays that way.
Hi Carolyn - thankyou for your reply - you are so helpful. May I ask (if it's not prying too much) - what bone mets do you have and have they progressed since your diagnosis in 2015 or are they still the same. Mine is a small lesion on my spine. It showed up as suspicious, but not definite on a PET/CT scan. I was then sent for a bone scan, but even that didn't confirm it as a bone met 100%. My onc said the only way to definitely know what it is, would be to do a biopsy, which he felt would be too invasive. He says he is 95% sure that it is a bone met, so is treating it as such.
Not sure if this fits in here, but was hoping somebody would have some knowledge about this. When I saw my oncologist last week - I asked how I was going to be monitored and would they be measuring tumour markers - he said he didn't do them and said tumour markers often gave false readings and were not really appropriate for breast cancer and that he would be measuring my progress through scans - has anybody got any knowledge views on this?