Breast Cancer Now Forum

Hi, No I moved onto capecitabine after progression but that didn’t work for me so am on taxol which hasn’t been too bad. I’ve been MBC since December 2014 first to bones then liver ( primary was in 1999) so feel I’ve done well to now only be on my first IV chemo.  Hope the treatment works well for you  Debs xxxx ... View more

Hello Di, I got 2 and half years on this combination and that was with a dose reduction of the Abemaciclib due to a rash. Main side effect was tummy issues but I took loperamide as a preventative rather than “ wait for the explosion” and also learned which foods to avoid. good luck it was an easy treatment and kept my bones and liver stable. Debs xxx ... View more

Hi Lou, My tumour markers are unreliable as they always read more or less the same as a person who doesn’t have cancer. We can only rely on scans. I too have 3 weeks on and one week off. Just had number 12 infusion out of 18. Take care Debs x ... View more

Hi Daisy, so sorry to hear pax not working. Did scans show progression or just tumour markers? My scan has showed shown stable so I’m carrying on. Cape didn’t work for me but there are ladies who have years on it so hoping that will be the case for you too. Take care Debs x ... View more

Hi Noz, I believe they work in different ways so there is reason to be hopeful that Abemaciclib can work even though Pab failed. What are your consultants views on this? Are you in the UK? The reason I ask is that when I progressed on Abemaciclib I was told that NHS/NICE  rules meant I couldn’t try Pablociclib or Ribociclib because I already had been on Abemaciclib. I really would still like to try one of the others. Take care Debs x         ... View more

Hi Daisy, Yes please keep me up to date. I thought it was about £5000 so that’s a much better price. We have to be as proactive as we can and keep ahead of the game. Take Care love Debs x ... View more

Hi, I was on it with Faslodex but stopped working a year ago. I went on to capecitabine but I only got 6 months out of that am now on Paclitaxel. I’m 7 and a half years stage 4 ( primary was 1999). Hope you do well on Abemaciclib  Debs x ... View more

Hi Louise, I recently had my 9th infusion and the peripheral neuropathy which started at about number 6 has really ramped up. Numbness pins and needles in fingers and toes and weakness in legs. Going to have to mention how bad it’s been when I go this week. I don’t want to come off this chemo as finding it ok apart from this. Maybe they will reduce dose a bit. Had CT scan yesterday and got MRI to skull next Friday. Good luck with your scan results take care Debs x ... View more

Hi Daisy, Ive read a lot about the Guardant 360. It’s very expensive however the main drawback is that whatever mutations it shows in our cancer, we can’t access the drugs to help us within the limitations of the NHS/Nice guidelines. We would then have to look at self funding our own treatment. I wish I had private medical insurance. If you have any  other info/thoughts on it I would love to know.  Take care   Debs   ... View more

Hiya, I had to have a dose reduction due to rash and diarrhoea. The drug still worked for 2 years. I took loperamide every day as a preventative rather than wait for “ it” to happen. I also found there were certain foods that I had to absolutely avoid. If you google FODMAP (   fermentable oligosaccharides, disaccharides, monosaccharides, and polyols )     it tells you what foods to avoid for IBS sufferers and it seems this is similar to what Abemaciclib does to our gut. It was a game changer for me and it’s not a diet as such it’s just what to avoid. Example I could eT blueberries raspberries strawberries but not apples or pears as they break down differently in the tummy causing diarrhoea. If a food is high FODMAP then avoid if low FODMAP then it’s ok.  Hope this helps Debs x ... View more

Hiya, Ive had 8 Paclitaxel 3 weeks on and 1 week off. Started losing hair after 3rd round and nearly all gone now. Main side effects are fatigue and tingling/ numbness in thumbs and toes. Thankfully no nausea.  Hope it works well for us  Take care  Debs x ... View more

Hiya, well ive had 7 lots of Paclitaxel and another 2 then I will have scans. Already got scanxiety about that! Fatigure and breathlessness is quite bad have been given an inhaler, hair nearly all gone, numbness in toes. However my appetite is ok and I dont feel nauseous thankfully. So it’s doable at the moment. Take care Love Debs xxx  ... View more

Hi Jayne, You really have been through the mill! Now vivid too. Hopeful your symptoms will be mild.  Onwards and upwards has to be our mantra... rest , eat well, lots of water, you will soon be strong enough to get back on treatment. sending you a big fluffy hug 🤗   Love Debs xxx ... View more

Hi Andy, The bone strengthening meds your wife is on will do the trick regarding fractures. prior to this new generation of bone meds I think people could get fractures just my turning over in bed! So she should be ok barring a proper fall or accident. I would encourage gentle exercise like walking on the days she feels up to it and I also do gentle yoga ( lots on you tube). Take care Love Debs x ... View more

Hiya, please try not to google stats they are so out of date as they take years to collate the info and new meds come along in that time. I myself have had bone mets for 7 years now. A lot of the newer meds weren’t around when I was diagnosed with bone mets. Following chemo your wife will have access to anti hormonal treatment and targeted treatment. Yes she will always be on medication and there is a lot of info on these boards for you to read. wishing you both well take care Debs x ... View more

Hi Louise, I will be having scans to see how Paclitaxel is working after I have had 9 infusions so 3 more to go. Already got anxiety about that! Regarding tumour markers mine are always the same as a person who doesn’t have cancer so they have never been of any use to see if treatment is working or not. We have to rely on scans.  Have enjoyed my week off chemo, no hospital visits. I’m glad I made the choice to have the week off. Take care Love Debs x ... View more

Hi, Im on 3 weeks then a week off and feel my body really needs the week rest. Main side effect is extreme fatigue and breathless. This improves slightly on the week off.  Love Debs Xxx ... View more

Hi Jayne, So sorry to hear you are in hospital. Hope the IV antibiotics get you up and out of there soon. take care  love Debs xxx ... View more

Hi Louise  Yes I am weekly, 3 weeks on then a week off. I had the choice of the week off or not but my oncologist said it’s good to give the body a break on the week off. I think everybody tolerates it differently. I find the fatigue builds up over the 3 weeks so am happy to have the following week off. I also treat myself a bit more on the week off like a glass of wine or two 😁 . Take care love Debs xxx ... View more

Hi, I will be having my first scans on this treatment next month. Oncologist wants me to have had 9 of the 18 infusions first. So hope it’s working. I believe Docetaxol is a harsher chemo with more side effects maybe. Is this one we could go on at a later date? I’m not sure really how they decide which one to put us on. Capecitabine the oral chemo didn’t work for me at all and this was the suggested next option. Fingers crossed it works well for us  Debs xxx  ... View more