Not sure if watching eastenders tonight was a good idea. Peggy Mitchell was given the news we all live in fear of.
I hope they do a good realistic picture of her illness though and although it's only a soap. ...hits home to all of us I think.
Anyway loads of hugs xxx
All she said it was near bowel, Regarding scan I rang bc after week was told it was taking up to 6 weeks now to be reported which in my opinion is ridiculous as alot can change in 6 weeks. I was informed in patients get reported first so I said could be the difference between life or death. Thank you for replying to my text. Hugs to all. Linda
Spoke to onc secretary this morning asked to speak to onc unfortunately she was clinic explained to secretary my worries. She had a word with onc about my concerns and also whether I was fit enough to go on holiday. What I was told I was well enough to go on holiday and that onc believed the inflammation would clear up by then. Fingers crossed it does. How is your treatment going did you have radiotherapy to neck? When I next get markers done when pick up next tablets 3 weeks and I am going to ring them and if they have gone up again I am going to push for a scan. Watch this space. Onc must hate me I question everything. It is the only it is my body. Forgot to mention whenI asked about high tumour markers I was told some of her patients have tumour markers of 2,000. Yes that may be so but mine react to even the smallest change. When I was first dianoised they were just over 200 so they are creeping back up to that. I am trying not to worry but it is hard. Hugs to everyone must get tea started. Linda
Hi Mint tea...so glad to hear your news..i have skn mets bt recently had pleural effusions (awful) and the fluid was malignant then on top of that ujst had confirmation that its in my bones (spine and pelvis) so very 'down' at the moment. HAve an appointment at the UCH research faclity next week..have been on their radar for a while and there was a suitable trial when i just had skin mets but still had conventional treatments to go at so they wouldn't consider me at the time. Now i'm scared that the progression will prevent me going on trials at a later date or even that i'll be too ill to travel and undertake the trial. I wouldnt be so lucky if i went on a randomised trial i'm sure. Just have to hope the carboplatin will help. I wish you good luck and contined success. x
One of the reasons they are looking at cabazitaxel for BC (think it's used for prostrate cancer at mo) is SE. I was told "won't cause hair loss, main SE is diahorrea". I had one episode of diahorrea each cycle (same day each time) - one dose of immodium and that sorted that. My hair started to thin after about cycle 3 - not enough to be really noticeable to anyone else, but by the end it was very very thin and after I had finished chemo I did resort to hats for about 6-8 weeks. Perplexed the research team as they were not expecting that! Other than just feeling a bit rubbish for a few days and getting a yucky taste in my mouth (another unexpected SE) SES were OK. No steroids and no anti sickness meds under the protocol, and a quick infusion time, so overall I found it relatively easy. I had TAC for my primary and that was tough!
Carolyn-the Concept trial is looking at cabazitaxel versus paclitaxel for secondary HER-.
It is randomised so I was lucky to get allocated the cabazitaxel (which was very doable). It seems the results overall are very encouraging so far, they just need more candidates to be put forward. Interestingly research team told me some Oncs not very forthcoming with thinking about trials - worth questioning if you are in similar boat.
Dear mint tea
Lovely to hear from you and your good news about the liver mets and tumour marker reductions thats brilliant. You go girl forget about cancer and get those holidays booked. Have a great summer.
Dear Sue (angle4cat)
See mint tea is on Anastrozole and she has had brilliant results lets hope it works for you too.
I would ask if you could have your results sooner than waiting so long to to find out the outcome of scans. Maybe your BN could find out the results and let you know. To wait for any results is stressful but to wait weeks is not very good.
Dear Sue (scooby)
Nice to hear from you too and everyone else. Weather really changed here just when you start getting the feel for summer it turns wet and cold again. The heat was not very good for my bones I did suffer but i am not complaining I would rather have the sun and stay in the shade than cold miserable weather that makes you feel worse.
Love to all xxx
Hi Sue. Welcome. Sure one of the ladies will have some sound advice. My SBC made it's self know in March 2015 when my femur snapped. Since then I have been treated with hormonals. Take care. Love to all Sue. xx
I agree Linda. It seems an age to be just watching something. Perhaps ring the onc PA and ask for a telephone consultation. Gorgeous day in the NE. Busy in the garden. Take care ladies. Love Sue xxx
That is the best news, Really made my day. Now yet busy and give the plastic some welly. Enjoy your holiday. Love Suexx
I don't post much but do keep an eye on this thread and have been encouraged when reading others news (as well as chuckling at some of Carolyn's comments) so thought I would post my latest results, in case others find it useful. I was diagnosed with secondaries in Oct 2014 - firstly pleural effusion and then bone mets (found during routine annual mammo and US after primary in 2010) - changed from tamoxifen to letrozole (and stated denosumab) but after 12 weeks "extensive" liver mets arrived so binned the letrozole and started chemo via the Concept trial last April. Chemo finished July and end of treatment scan in September showed liver mets had reduced by over 50%. Started anastrozole then and next scan in November showed further reduction, as did scan in January. TMs had reduced over that period as well. Onc then said "OK, let's move to 12 weekly scans (rather than 8)". Had scan Friday and that showed a normal liver, stable bones and no new disease and Onc does not want to see me until September but just wants me to keep an eye on diet! I've been putting off booking some holidays in case I jinxed anything, but the rest of the day will involve heavy use of my debit card booking some trips now I am free for the summer!
Just let you know I got scan results yesterday. It took 5 weeks. I was informed tumour markers are now 110 which I queried as being very high for me as they used to be 15. She also said scan showed inflammation near my bowel.They are not sure what it is but onc said I would now be scanned every 3 months to keep an eye on it. I dont know about you ladies it seems a long time to see what is causing it.My next appointment to see onc is 2 months then from that she will request a scan. Normally tskes about 3 weeks to get appointment then about 6 weeks to report it which in affect means from one scan to another takes about 5 montbs between each scan. I feel alot can happen in 5 months. What she also said she would not change treatment from bloods alone. Anyway enough about me how are all you ladies today? Linda
Welcome to the bone thread you will find lots of help on here.
I am not familiar with anastrozole or arimidex I am no longer on hormone tablets as they do not work for me anymore. But I am sure someone will be along to chat with you about it. Don't be alarmed if your chemo did not work first time it happens but if your new treatment holds or reduces the blighters then it will be a good thing only time will tell. But if they stop working there will be lots of other treatments to fight them.
Sending you cyber hugs and love xxx
I had a wool duvet when I went to university back in the 70s - so nothing new! Any duvet made of natural fibres: wool, silk, feather, down, is cooler and more breathable than polyester. We have a lovely 4.5 tog Hungarian goose down quilt (and a super king bed) so are generally OK using it on all but the coldest and hottest days of the year.
I am lying around at home "resting" as my platelet level was too low for chemo last Friday. Hoping a good rest from commuting will help.
Hi everyone I'm new to this group but reading the threads for a while. I was dx with BC sept 15 mast followed. Had 2 chemo then ct scan dx with bone mets in jan changed chemo had another 5 just had another ct scan more bone mets and liver mets. The chemo didn't work! Now on anastrozole to see if that will slow it down. Has anybody had first lot of chemo not work?
Thanks Carolyn.I thank god every day for the quality of life that I still have. Relatively mobile. Although I don't walk too far these days. You should have loaned me your husband for the weekend. We could have gone wild among the plants. Mine is a superstar carried all my purchases and pretended he was loving it. Sue. xxx
Sue . you are not alone ..I seem to have lost confidence when Im out too. Its probably as we are not 100% mobile and not independant.
I used to be so active and confident in going swimming on my own etc etc . I hate having to rely on hubby to do so much around the house that I always used to do. Always did the decorating , heavy diy stuff without any problem !! I cant drive either and as I have been driving since 1970 its really quite a loss.
Never mind we must be content that we still have some quality of life to do simple things.
Hello ladies. Gorgeous day in the NE. Just back from a long weekend at the Malvern flower show. I loved it. Before I went I felt sick with anxiety. This for someone who was responsible for the care of 1000 plus students. Why has this wretched diisease made me loose confidence? Determined to get the old me back. Well some of me anyway. Love to all. Hope all scan results are good. Sue xxx
Funny face. You and your brother are in my thoughts and prayers.I would hope his family appreciate how difficult it has been for you too. You can remember him in your own way. Sue xxx
My oncologist leaves at the end of May too and I feel like I have been in safe hands. I meet my new one in June .
Just go with your instincts if you are still getting the side effects. Maybe ask about the injection which is a lot quicker and less side effects maybe. Although I do get aches and pains for a few days but never quite sure if its the injection or the mets really.
I had the same thought this morning so decided to contact my BCN and contact oncologist to ask if these side effects were normal.
I have now just been told that my Oncologist has left. I am devastated. She was so wonderful and now I have to meet a new one. I hate change!!
My BCN does seem to think that the tingling and numbness is from the zometa but if it gets worse has told me to go straight to A&E due to where my bone mets are on my spine, very close to spinal chord.
Oh funnyface what terrible news, so sorry for you! But as Carolyn has said you need to take care of yourself.
Life throws some rubbish things at us sometimes but it's how we deal with it that matters and stress does play a massive part in our wellbeing! Take care sending you lots of cyber hugs ((()))
Hope everyone is okay, it's another gorgeous day here in Manchester.
Hugs Janette xxxx
Girls I will be back in a few days! Having a very tough time! My brother committed suicide yesterday. So many mixed emotions! The hardest part is he has been a mess for many years and wouldn't speak to me, but he is still my brother. I also don't know if his wife will allow me to attend his funeral. I feel bad for his kids they are all young adults, but he has put them through h**l! FF
I've just recently bought a low tog wool duvet and I've found it brilliant. I no longer keep waking up bathed in sweat and it's so light. I bought a wool pillow too.
I hope you have all been enjoying the lovely weather this weekend.
As you all know I started my Zometa infusions just over a week ago.
And I am getting some tingly and numb sensations in my hands and some lightheadedness.
Has anyone else suffered with these issues after bone infusions??
I was feeling really well before I had the infusion, now i feel crappy, which is very frustrating.
Any advice ladies??
Hugs to everyone
Karen x x
No haven't heard about wool quilts but sounds good. I love my feather duvet as it sort of hugs me but in a cool way. I have a very low tog... and then a throw in case it gets cold. Always have the window open a little bit too.
Will be looking forward to hearing about your shampoo results. You will in the grand national next year with all that hair flowing.......
I've just bought simple shampoo for my thinning hair but saw an advert on tv for regains which is for hair loss which I might try.
My sons dog had a leg op but it wouldn't heal.. vet prescribed manucur honey (spelling wrong) and it cleared up within a few days. Might help ladies with skin Mets or Rad Burns.maybe vets know best!!!