Breast Cancer Now Forum

Hi Helen I have been on Kadcyla for over 2 1/2 years now.....more than 45 doses so far! I have not really had any side effects worth mentioning (tiredness, weak nails, vision a little blurry - all minor) It has never affected my blood count.   It is given via I.V. infusion, so a trip to the hospital every 3 weeks and as the drug is so expensive the chemo ward have to wait until I am physically in the hospital before it can be requested from pharmacy. I go the day before to my G.P. for bloods which are faxed direct to ward. The first dose is given over a longer period and you have to stay in the hospital for a couple of hours to ensure no allergic reation. Subsequent doses are given over 30 mins, although due to wait for the drug being dispensed I am usually on the day ward for a couple of hours each time.  I don't mind the wait, am just so glad to get the drug.   I have secondaries in my bones and liver, although my liver has been tumour free after the first 3 months on Kadcyla and my bones are healing - I have Denosumab injection 6 weekly. For me, this drug has been fantastic and I live a pretty normal life I am 53 now and have been living with cancer for 7 years.   Good luck with your treatment,    Julie x ... View more

Hi. Chocolates I got your pm but having trouble replying so posting here. thank you so much for letting me know about Helen, not been looking at site recently so was not aware she was in hospital. Texted her last week and all fine? its my treatment day next Wednesday, but I can go up on Friday to see her, I will text her tomorrow. Her Onc is a xxxx! Makes me so cross, because they are lovely at the Freeman really. The person she needs to talk to is Karen. she was SBC nurse, wife of my onc,but now runs Maggies centre and only SBC for BUPA ( in theory anyway, never lets it stop her) she is the one who sorted Cap in September for Helen. Rachel, her sister, was going to take her over to see her last time Helen was in. But Helen resists. Nag her 😀 hope all well with you and everone else on the site julie xx ... View more

Hello ladies, as we are all worried about, and thinking of Helen, I just wanted to say that I visited Helen yesterday. She was pale, fed up, but sitting up in bed, and we chatted for 2 hours. Twice during that time a Doc came to see her and he arranged for the CT for yesterday afternoon as all bloods etc clear of infection so they are unsure what is causing temp spikes. She had also seen 'our' Onc Geordie, earlier in the week. The one person who she hasn't seen or heard from is her own Oncologist and this has rightly upset her. Although she hasn't had scan feedback yet, she is on new antibiotics so something is happening. Hopefully this will do the trick and she will be sent home in the next day or two. I am sure Helen won't mind me sharing the above, as she knows everyone worried. She is in good hands but feeling poorly when temp is up. Love and hugs to you all Stay strong Julie x ... View more

Helen that's brilliant news so pleased for you xxxxx ... View more

Hahaha!! Helen you fox! Those blokes just can't leave you alone!   Can't understand what you have got hidden under those clothes that radiographers love so much??? If your bra is underwired, then fair do, they like it off - but trousers too?? Were they punk rock style covered in zips?? with your pockets stuffed full of coins? Maybe its on your notes? 'loves to get her kit off???'   I just don't get it. I NEVER get asked to undress. Mind you it's pobably a case of you have still got 'it' and I lost mine a long time ago hahaha!   Oh dear. Poor you. Sorry to hear you had such trauma. And have just caught up on the previous posts and see you have been poorly. Hope you are feeling a little better and you and you lovely sister managed a giggle about today (((((o)))))   I was at hospital this morning for my Muga (heart scan). 2 stabs at my non existant veins then in breezed a lovely nurse from the next clinic to play 'pin the tail on the donkey' - I am the donkey - with my port. Instant success. So thats  CT AND heart scan injections into this lovely contraption now. Bliss! Love and hugs to all xxxxx   ... View more

Morning Ladies, just want to say a quick Hello to all of you, especially those of us who are so unwell at the moment. Bev, I don't think you should suffer like that for so long? Sounds like you are having an extreme reaction to chemo and/or injection?  Can you contact chemo ward for advice again?   My hospital gives me a chemo record book, with a traffic light system for all possible side effects. You are in the red in my book, with is classed as contact hospital immediately for advice?   I think the thing is, we all have different pain thresholds, but obviously nurses and doctors can't assess if we are 'wimps' or not? Without seeing you, they could be making general assumption on expected discomfort level? If you are the kind who can tolerate a high degree of pain without complaint then let them know.  Sometimes being brave and just bearing it  just makes it harder for ourselves?  Stay strong everyone Julie xx (The other one. haha) ... View more

Morning ladies, hope we are all feeling well today  and thoses of us with low counts are recovering x   Helen , I hope your sisters 1st chemo went ok and she is resting and conserving her energy. Nice to hear from you Dawn, I have read many of your previous posts and gained a lot of strength and comfort from the knowledge you have shared.   I too am funded from cancer drug fund, as you say, Kadcyla is too expensive (greedy drug company! Grrrr!). It is just given on chemo ward as normal, we don't become NHS 'outsiders' lol. We, the patients, don't apply for funding. The Onc does it all so it has no impact on me, other than knowing about cost implications and slight worry over future of funding after general election. My Onc assures me it won't be a problem as it would be too unpopular to cancel the cancer drugs fund? Who knows?    I am ER+ and HER2+, but Herceptin did not really work for me. It slowed growth down but I had progression in bones and liver in under 12 months on Herceptin. How I envy you ladies who have had years on it. For the first 6 months I have had no SE from Kadcyla. After the last couple of doses I have had 48hrs of hot flushes and flu type aches and pains. All minor really. Doc told me on Monday that this is good. He said that the less cancer cell's I have, the more it affects the rest of your body with SE. All encoraging really. Dawn I really hope you, and any other Kadcyla ladies do as well on it as I have so far.   I am 51 and have had a blue badge for 3 years, as you say Natalie, never thought I would be in this position either, but hoping for another 3 years at it. Stay strong everyone love and hugs Julie xxxxx ... View more

Thanks everyone x Yes it's amazing really.   So will risk poisoning my healthy liver with a large glass of celebratory plonk tonight! Haha xx ... View more

Hi to all of the lovely ladies on here. I don't post often, but like others, try to read and keep up with you all as much as possible. Just want to share my good news from Onc review today. I have been on Kadcyla since March, due my 12th treatment on Friday. Scan in August showed liver mets have gone and last weeks scan was the same. Or as the Doc said, 'it's a scan of a perfectly healthy liver' I have no symptoms from my multiple bone mets, which means they are getting the good news too.   Would never have believed I could be in such good shape again.   Stay strong ladies Love and hugs Julie xxxx       ... View more

Hi everyone, I have been shamed into posting by Helen's angry eyes too, although I often read the thread, I rarely post. (DX 2009,WLE, 6xEC, rads, Herceptin, Tamoxifen. SBC DX 2011, liver and bones,Letrozole then 6x Docetaxol plus more Herceptin. Moved onto Kadcyla March 2014, due my11th dose this week ).   Would just like to add to the veins and ports, I had a Hickman Line in 2009, which was in for 9 months and I detested it lol. I was so happy to finally have it removed and be 'normal' again without that dangling tube. I managed to finish Herceptin first time round with my one last good vein, and then resisted having any kind of port for second chemo and further Herceptin even though it often took multiple attempts to canulate me. Finally relented to pressure last year, but was saved in the nick of time by introduction of sub cut Herceptin (hooray!) only for it to stop working for me within 3 months (boo!). So back to I.V. for Kadcyla. Anyway, I reluctantly had a power injectable port installed earlier this year and can't believe how much I love it! C.T.'s were always painful due to the dye and treatment always a trauma, but now it's all so easy and pain free. Port itself is low down in my boob, so can't see it in clothes or a bikini and has just made things so simple. Would totally recommend one. Julie x   ... View more

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  Julie xxxxx   ... View more

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 ... View more