Breast Cancer Now Forum

Hello everyone, gosh what a time we're having. I hope things are starting to settle down for everyone. An update from me, because I've been very not-present on the forum for all sorts of reasons. So I finished chemo 6 weeks ago, had a mastectomy and lymph node removal two weeks ago and got the histology results two days ago. Micrometastases were found in 2 out of the 10 lymph nodes removed, and in some of the breast tissue - tiny tiny but it meant the chemo hadn't quite eradicated everything. So, I will have radiotherapy to the chest wall and clavicular lymph nodes (is this a thing?) as planned, and start on Kadcyla in the new year. 13 courses 3 weeks apart. A bit of me wants to cry. A bigger bit of me thinks, well the chemo has done its job, surgery has helped, and radiotherapy will help even more. Kadcyla seems to be better tolerated than some of the awful chemo I had before (docetaxel, epirubicin) but anybody with any experience let me know if that's wishful thinking... Also started on Letrozole today and will be having bisphosphonates from February. My scar is healing and I'm back doing my exercise routine along with LCHF diet to try and manage the diabetes. I have lost 5kg (hurray) but how much does a breast weigh? So, somewhere in the next couple of weeks I have to manage my birthday (60 on Saturday - I know, I don't look it but give the Letrozole time), Christmas, a son in London who's isolating, the 3 year-old twin granddaughters who are beyond excited and there are still 9 more sleeps. Love to everyone for a peaceful and pain free holiday Jennet x ... View more

Hope you’re recovering well from the operation @Kaisa  rest well and be gentle on yourself when you can - thinking of you  ... View more

My experience is the tiredness is cumulative and I’m not bouncing back from docetaxel in the way I did with earlier cycles. I’m on day 15 of cycle 5, the second of docetaxel and I have the sixth and last one next week. Still having upset tummy and diarrhoea… …but at least an end in sight. Hope everyone is coping ok.  ... View more

Oh @sharlea that’s not okay. It really isn’t. This whole thing is difficult enough without the people caring for us making it worse. Nursing is a really tough job, lord knows I couldn’t do it and I’ve been really lucky so far with the nurses looking after me. A big ticky box form sounds very sensible, even if you shouldn’t have to do that. Checklists are well evidenced in health care for improving outcomes and avoiding errors. Hope your chemo is going okay xx ... View more

Hi @sharlea I just wanted to respond to your post about nurses forgetting the injections. Of course you’re upset about it. It seems as though they weren’t being methodical and they should have double checked you’d got all your meds before you left. Each time I’ve been for chemo the nurses have checked the meds for each patient in pairs at the computer, then gone through it all with me, and I’ve asked for a print out of my bloods and meds which they’re happy to give, so I go through it with my husband when we’re home. So it might be worth asking for a print out. Hope you’re coping well with the chemo snd your feet aren’t too sore x ... View more

Hi @Kaisa you're right, it's good to have support from 'fellow travellers' and to know we're not alone, although much better if none of us were on this journey! Wishing you well with your next treatment and surgery. I started the docetaxel, along with Pertuzumab and Trastuzumab injection on Tuesday. Starting to feel the effects now - aching tiredness, and sickness (which I didn't really have through 3 rounds of EC). Two more cycles of this and then surgery - mastectomy and lymph node removal. My cancer is ER+ PR+ and Her2+. I have a lovely oncologist who told me I was doing brilliantly at my last appointment. Quite how she knows that I don't know, as I haven't had a scan since I started treatment. I am due an MRI after round 5 of chemo so we will see then I guess. I would like to get it all removed but apparently this is the best course of treatment for me right now. My surgeon is a little gruff - she is a specialist in reconstruction but at the moment I'm not thinking that far ahead. Ah well, hope all goes well for you x ... View more

Hi @katenonip I hope you managed a good sleep and that things are looking a little better. Menopause can be really difficult and especially if it’s sudden - I agree there should be more support. I found this forum helpful https://www.menopausematters.co.uk I had to stop HRT overnight, having been on it happily for 5 years. Nobody has talked to me about the consequences of that - hello mood swings, night sweats, brain fog, aching joints. Hard to know what’s a symptom of cancer and what’s hormone changes.  You’re not alone, at any rate, and I hope you feel better soon x ... View more

Hi @sharlea and good luck with chemo this cycle- I hope it’s getting easier each day. im Day 8 round 2 - one more of this EC and then Pertuzumab, Trastuzumab and Docetaxel from September for three rounds. And then we’ll see if it’s having any impact…hopefully there are effects as well as side effects!  cold cap definitely hasn’t worked but I have resisted shaving. My head looks like a badly plucked hen but thankfully I’ve never been a vain woman and I’m finding pretty scarves in charity shops (I go when they’re quiet - my son said, do they give you a discount in Cancer Research? But no they don’t and neither do they insist on masks). im realising that I can’t wait until treatment finishes to get on with my life. There will be a time when ‘this is all over’ but meantime lots to get on with. Hope you’re all coping with this cycle and I can recommend punching a cushion when it all gets too much cxx ... View more

Hi @katenonip I hope you’re feeling better today. I had my second round of EC on Tuesday and am just exhausted but otherwise fine.  Hair all over my pillow so the trauma of cold-capping might have been in vain, my oncologist said I won’t be having any scans until after the chemo- how do they know if it’s working then? Bit annoying if I get to round 6 and it hasn’t done anything… strength and hugs to everyone xxx ... View more

Hi @sharlea  @I’m having round 2 on Tuesday if my bloods are ok tomorrow. EC (2nd of 3 cycles) and my hair is coming out in handfuls so not at all sure whether to stick with the cold cap. Hope the next round goes well for you, and for everyone having chemo this week Its helping us to get better xx ... View more

Hi @Em77  I think this is pretty much all we can do. Be careful, encourage other people to be careful too - but life goes on.  ... View more

Hi @Em77  how are you doing? i wondered what everyone is doing in terms of going out, shopping and eating and the like. i received an official letter telling me I’m clinically extremely vulnerable- jolly good but no real advice about what to do. In a meeting this morning a colleague said he’s not going anywhere because his wife is CEV and he doesn’t want to put her at risk - well my other half has been doing the shopping, and sometimes I go with him to get out of the house but mostly I’ve been going on walks where there aren’t many people. Should he be doing a lateral flow test when he comes back home?  i want to see my granddaughters who are 3, and probably little vectors of infection. Their mum (my daughter) is worried about exposing me to bugs - how are other people managing all this? ... View more

Thank you @simplyeve  for really helpful post. I am putting off thinking about surgery and reconstruction as it won't be till after chemotherapy and I start the 2nd of 6 cycles next week, but I've been told it will definitely be mastectomy as my cancer is in the lymph nodes and an ill-defined mass in my breast rather than a lump.  But my breast surgeon is an expert in reconstruction and I have plenty of fat to choose from (my sister in law couldn't have reconstruction because she doesn't have an ounce of fat on her - this won't be my problem). I am back at work today - three zoom meetings and my husband is muttering things not-quite-under-his-breath about people who try to do too much. But I am taking my hat off (carefully, as my hair is starting to come out) to all the women with this bloody disease who are also managing children and mothers-in-law and elderly parents and pets. My kids are adults (so they tell me) and doing a bit of looking after me, and my elderly parent (I have only the one, and my husband doesn't have any) jetted off two days ago to France where he is staying till the end of September. So I have it easier than many and am looking forward to a bit of normality with work. Love to everyone and a big hug to anyone who needs one this morning. It is blowing a hoolie outside so my daily walk will have to wait xx ... View more

I think my operation will be around the same time as you @Mum2boys  after all the chemo. Hoping the chemo might shrink the mass - that’s a possibility they said. Also it’s okay not to feel positive all the time. I know you’ll know that, but I’m fed up of total hogwash about being positive and better outcomes. Some days I’m positive and these forums really help…other days I’m a grinch. This is a long haul - keep going! ... View more

Hi @Mum2boys @I just wanted to say you’re not doing anything wrong, this is going to hit us differently at different times and our circumstances are different. I’m continuing to do bits of work as and when I can - I’m freelance so no sick pay is one reason but mainly because it helps me maintain some degree of normality when the rest of my life has gone haywire. I’m so glad that my kids are adults (so they tell me); how those of you with small people to look after manage is amazing. And there have been days I’ve stayed in bed all day. I’m going for my second round of chemo (EC) next week- one more of those, then a different regime for 3 cycles (docetaxel, pertuzumab and something else), then surgery, then radiotherapy. I’m trying to decide on reconstruction right now. Is anyone else at that point? ... View more

Everyone is different but my regime (EC) was IV drugs on the ward (epirubicin and cyclophosphamide) then dexamethasone for 5 days at home, plus anti-emetics, plus filgrastim injections Days 2-5 Questions are good - best way to make sense of all this. ... View more

That is fabulous fantastic news. Well done you. Keep going x ... View more

Cold cap might be welcome coolth. I'm glad you said that about putting on weight...not that you are, and I am sure you're not, but just people say to me on Zoom calls 'you look so well!' meaning 'why aren't you thinner?' It's disheartening because my diagnosis of diabetes coincided with the cancer diagnosis (two for the price of one, really) so I have been trying to get blood sugar under control along with chemo and steroids, and basically feeling like not eating anything. And still the blood sugar is high. The diabetes nurse suggested I might be stressed....well, yes, a tad. Good luck for Friday x ... View more

@DAB72  re the injections, I was worried about them too but actually it was not a problem at all. Provided you have some fat - this hasn’t been an issue for me! Tiny tiny thin needle, over in a jiffy.  ... View more

Thank you @Kisekae I am finding it so helpful to read other people's accounts of their chemo journeys so thought I'd post where I'm up to. Day 8, and I was congratulating myself for not getting sick at all, then yesterday nausea started. Is it delayed like that for others? I took a metoclopramide and that has helped.  Did the last of the filgrastim injections last night - now have a lovely bruise on my tummy where my technique was a bit cack-handed! The worst for me at present is the tiredness - my legs are made of lead and as I posted early, our house has five storeys so forgetting my book by the bed (at the top) when I want it to read outside is a real annoyance. Fortunately I can't carry the hoover upstairs either - housework has gone to pot for a little bit. Today I am feeling a bit more like myself and am doing some work, running a meeting and I think not talking complete gibberish. Next round of EC is 3rd August which I am rather dreading but has to be done and I am telling myself it will be one third down, two thirds to go... Anyway, if you're on day 1-8 of chemo, my experience is that it gets better. Resting helps a lot - I'm taking frequent breaks throughout the day, especially in this heat. Keep going and love to everyone xx ... View more