Evening everyone, thank you for your lovely welcome.
I am delighted at Helen's news, she is in safe hands at The Freeman.
Chocolates re your heart, I have been taking 4mg Perindopril daily for the last 18 months or so, as Herceptin had started to affect my heart, according to Mugga scans. My Onc just prescribed the pills with never any suggestion of taking a Herceptin break, so it could be any option for you too, if needed.
Love to all
Helen! What wonderful news; you deserve a decent team - full steam ahead.
Desi - waiting until you feel better after your holiday sounds like a good idea - the chemo will still
kick the little uggers into touch. I delayed my second FEC for a week to go on holiday and it still did its job.
Chocolates - glad your ECG was clear and your BCN gave the doctor a talking to.
Everyone - hope results are good for those waiting and treatments kind to those going through them.
Thanks for your reply Nicky good to have as much info as I can. So glad to hear you have changed hospitals Helen lets hope your new team will get you sorted. To all of you off for treatment tomorrow best of luck I've got my second lot of FEC hoping I shall have the very nice young man who did it last time!! Well every cloud has to have a silver lining!!!
Yay!!! I.m hopping around with joy for you Helen!!!Solo pleased you went to Maggie's and the lovely Karen got it all sorted for you. It must be such a huge relief. Now you can get on with your treatment, concentrate on your future and have a great holiday. Yippee!! xxxx
bill-ben in answer to your question I ended up with atrial fibriallation which was caused by the FEC I had 6 years ago. I've not had iv chemo since but have been on Capecitabine over the last 18 months. It is highly unlikely to get this (or so I imagine after knowing so many ladies who have had this type of chemo) so I was just one of the unlucky ones! It is worth getting the post chemo echo scan done though as this was something that my hospital didn't do and therefore maybe I could have been treated sooner. I didn't have any poblems whilst on FEC (6 cycles) and generally felt OK on it other than the first 4-5 days when I felt a bit yucky - but no more than that. I'm due to start another chemo soon which I will also have with Herceptin and Perjeta so I'm back into the unknown, gulp!
juliemo - good to hear from you and your secondary BC 'journey' with all the new HER2 drugs. Great that you are now showing no evidence of disease in your liver and hope Kadcycla keeps working it's wonders for you with minimal SEs. I think thre was a lady who recently posted on the forum saying she had been on it for 4 years now! Assume she had been part of the original trials, and she was still doing really well. Now I have gone from HER2- to HER2+ I'm still learning about these new drugs as they weren't relevant to my treatment until last year when I had a liver biopsy done and the receptor status had changed.
Hi to everyone else on this thread and hope you are doing OK with new treatments or the current ones are still working well for you.
I started treatment in October last year and had 7 rounds of docetaxal finishing around March time this year I think - so just been on herceptin/perjeta along with letrozole and zoladex since then (and the bone injection I can never spell)! My lungs were clear by my first scan and by then end there was just something small residing in my liver. Had a scary last scan which suggested I had progression but they rescanned to make sure and turned out to just be an infection .. and if anything they reckon liver has reduced a bit. I know its still a trial but would be great to hear of a story of someone being on it for a very long time wouldn't it! xxx
I don't post very often but I do read - just wanted to say that I am on herceptin/perjeta and sometimes I get a fluttery heart aswell. I've mentioned it to my onc but he isn't concerned. I get a MUGA every few months and everything looks okay so I don't think there is any damage happening xx
Hi juliemo.....pleased to hear your treatment is working out...they always seem to be able to pull things out of the bag for us and with all the new drugs on the horizon kets hope there'll be many more available to us. Good luck with it and we're all here to offer you support and answer any questions if we can!
Helen....good luck with rads this morning. Hope no more glitches for you! But cant wait to hear about it when you get back....lol!
Have a lovely day ladies....would have been my dad's 85th birthday today so going for walk to cemetery then taking mum for lunch.
love and hugz all..,,, bev xxx
Hello to everyone, I am new to the site but have read your posts and found so many of them helpful.
I was DX in 2009 and had WLE, 6xEC, rads and Herceptin at the time. Within months of finishing treatment I suffered a collapsed vertebra and got my SDX in 2011 of mets in pelvis and spine.
In 2012, 6 months later, I switched hospital, after getting a second opinion and discovered mets were now all through my pelvis, spine, ribs, both legs and 3 tumors in my liver. Quite a shock to see how fast it had ripped through my body and discovering I was on the wrong treatment.
I had 6x Docetaxel and went back on Herceptin under the new Onc and this sorted my liver and helped my bones.
After 18 months a new tumor appeared in my liver and I was switched to Kadcyla in March this year.
Scan last week showed the liver tumor has disapeared and I feel fine on Kadcyla with no SE and a full head of hair
Love to all xxx
Hi all you ladies out there haven't been on here for a bit just don't know where the days have gone but have had quite a few visitors to stay! It's interesting to read how many different sorts of treatment we are all on how do the doctors decide who gets what even some of us with the same secondarys can have different drugs? I was interested to hear you are on FEC Nicky. I am due my second lot on Thursday this week. Do you mind if I ask what effects it had on your heart? I have mets in my spine ribs liver and just to go the whole hog brain as well. I've had my brain zapped and am now being weaned off the dreaded steroids (only 5 days to go yippee) but don't know what symptoms go with what!!! Luckily the FEC hasn't made me sick just totally changed my taste. I even hate chocolate now and only want fresh fruit and veg and nuts to eat. None of all the naughty stuff I used to over indulge like butter biscuits cake etc. which cann't be a bad thing! But I do sound a bit wheezey have alot of weakness in my legs (though this is probably the brain mets). It's not knowing what symptom is being caused by what! I reread all the paperwork I was given which said that the drug in the FEC mixture that starts with C cann't remember the full name can irritate your bladder. My bladder has misbehaved several just thank god for the Tenas!!! Has anyone else experienced that. Would really appreciate hearing anyones FEC experiences. Hope you all have a good day
Wow - what a busy thread we are! Sorry if I forget anyone but have just read back on lots of the posts from yesterday, so theres a lot going on!
Helen - your BCN does talk a load of rubbish! I was on Cape for 18 months and just had to see onc for blood results and then get my tablets from the pharmacy - no chair needed! Also I went on several holidays whilst on them so, again, there is no reason at all for you not to take them whilst away. So worrying that she is meant to be helping all the BC patients in your hospital but she doesn't seem to know what on earth she is talking about, grrrrrrr. Hope you have a better day and don't need to keep chasing them up.
Tink - great news about FEC - I was on it 6 years ago for my bone mets and a local recurrence and had great results. Do watch the heart and blood side of things though as `I have had huge problems since then and am only just getting sorted out having gone to a specialist unit in London - sounds like your onc is on top of things though.
Tracy - as said above to Tinks I had FEC 6 years ago and found it quite do-able. I tended to have 4-5 days of feeling a bit rough but took all the anti sickness tablets to make sure I wasn't too bad. Then I seemed to bounce right back up again and felt good for the rest of the cycle. I also worked during my 'good' week/10 days although it was very part time and found I could still get on with doing most things but maybe felt a bit tired at times.
Hi to everyone else on this thread which is being so supportive right now, as it always has been
Take care all
ps have edited this as I've just found the paart on this thread about the letter from Faraway/Sara's GP. I also have had the same type of letter but, having re-read mine, it was worded really well and certainly didn't make me think I was at the end of life! I think if I had just had my secondary dx rather than 6 and a half years ago I might have felt a bit different about getting one but, as it is, I do feel that I will have my health needs more understood now. Especially as I hardly ever see my GP so I'm not too sure if they know what's going on anyway!
Bundy glad you managed to get to the hospital, good luck with rads hope they help with the pain and your mobility.
Helen,good luck with the GP tomorrow, lets hope he can not only put some pressure on but better still get you away from that place and the so called BCN. Thank you, and you too Chocolates for thinking of me today. I disn't manage to get to the funeral in the end I decided that as I was already tired and achy such a long journey would be too much. Liz's sister contacted me tonight to let me know it had gone wel and there were so many people they had to stand.
Roxy good to hear you are feeling slightly better, keep chomping the ginger biscuits!
Tinks good to see you posting here, I'm always pleased when FB girls continue to use the BCC forums, good to hear that on the whole things are moving in the right direction.
Hope to chat with some of you Tuesday on Livechat, I found that when I registered for chat after the overhall of the site it didn't seem to work but then I realised I hadn't scrolled down and ticked the agree to terms box! so keep your eyes open for that.
Love and strength to you all xx
Hi there ladies. I have been off the air for these last few weeks, so have spent a little time tonight catching up. Hope everyone is getting on with getting on. Last time I posted I was awaiting a PET scan and wondering how on earth I was going to physically get into the car to get to the scan. I managed - wheeled office chair and a lot of ingenuity got me there. Before the results came back, I ended up in hospital with high calcium - 10 days in hospital, and have had this last week at home trying to get rested. Both the high calicum and the PET scan showed extensive spread to the spine, so no real shock, but I had secretely hoped it would be something else entirely. I have recieved one blast of radiotherapy to the upper spine, now waiting for an appointment for the lower half to be done. I want it all done now! But there seems to be a lot of waiting. My onc says we will see how radiotherapy goes and then maybe look at a chemo trial (gem carbo?) I will have to do some research. My pain is being managed better now. I get about with a zimmer frame, and have made a few adjustments at home to manage. take care everyone,
I agree with Pam - I have always found my oncologists secretary very helpful. If you have no joy from this then I would visit the hospital PALS department and complain to them. Whilst nothing to do with cancer I needed to complain to PALS about hospital treatment for my mother in law years ago but they sorted out the problem for me in a day so it is worth trying this route to. Dont give up - we are all here for you.xx