Breast Cancer Now Forum

Hi, I would just like to reiterate what Nikki said - most of us don't really post unless there are problems! So, although I was terrified when diagnosed with grade 3 TNBC in 2013,  I am 4 years on with clear mammos and enjoying my life. It's true that we don't have the reassurance of taking Herceptin or Tamoxifen afterwards but I decided to provide my own kind of reassurance and have been taking low dose aspirin daily for a couple of years now (as there are trials going on at the moment to see if aspirin is effective) and I have also started taking turmeric tablets,  as well as trying to be reasonably fit and watch my weight as this could help. All the best for your chemo/surgery/radio everyone.  Rachel xxx   ... View more

Hi Ali, I finished 4 FEC & 4T two years ago and cold capped and although it felt like torture at the time I'm so glad I did.  I lost about 50% of my hair and it went really thin on my crown but I managed to avoid wearing a wig. One problem to look out for is the fitting of the cap as one time it wasn't washing  tight enough to the top of my head and that caused a lot of thinning to the crown. I didn't wash it for the first 3 days after chemo as the cold cap machine booklet said this was important and I used 0% herbal essences shampoo.  I washed it twice a week and used Batiste dry shampoo in between which was a life saver. I was really careful when combing it and made sure that I held on to the roots to avoid pulling any hairs out which sounds excessive but every hair felt precious!  Please persevere if you can because as others have said, a scary amount of hair seems to fall out each time you wash it but you do have far more than you realise.  And once you finish chemo it does grow quickly to fill in any sparse bits so you soon look like you have a full head of hair. All the best. Rachel  ... View more

Hi Vicky,  That sounds like a sensible plan. I hope that it will make the side effects a lot better for you. Take care.  Rachel  x ... View more

Hi Vicky  I hope the meeting with your onc was productive - was he able to help? Rachel x ... View more

Hi Vicky, I had awful problems with heart palpitations caused by the steroids (dexamethasone) which seemed worse when I was lying down  (I could really feel the skipping bests in my neck). Because of that for one of my FEC and all of my T treatments my onc halved the usual dose  (so I had 10mg for the T treatments given with the T as we were not given them before chemo as a lot of people seem to be, and then my onc allowed me to take half the usual dose at home so I had 2 mg twice a day for 2 days then 1mg twice a day). I also had an EGG to put my mind at rest about the palpitations which felt terrible but apparently weren't and because I was fortunately being treated privately I also had my heart checked out by a cardiologist which was all fine. And as soon as chemo finished so did the palpitations thank goodness. The steroid dose seems to be for a worse case scenario of full allergic reaction so there does seem to be leeway for reducing the dose especially if you do not react badly during the previous chemos.  All the best for your remaining treatments  Rachel        ... View more

Hi Sandra, I had FEC-T over a year ago. My best tip for the T part would be to keep a detailed diary as the side effects will probably be the same after each chemo and you can plan in advance e.g I realised that with Taxotere day 1- 3 I felt okay,  day 4-5 I felt awful and my temperature went up (so I knew not to panic when it went up to 38° each time), day 8 I got the runs (so I would take Immodium the night before to prevent this), day 7-10 was the low immunity period so I would avoid crowded places, food tasted foul days 4- 15 so I really looked forward to day 16 and would cross off the days!! I hope this helps. I must say Taxotere really affected my neutrophils badly but for me the worst side effects was the terrible tasting food - it was so hard to find anything that tasted nice,. For me lemon, balsamic vinegar and watercress with tuna were lifesavers and fizzy water with squash. The other  main problem I had was lack of sleep because of the steroids but my GP was great and prescribed sleeping pills (Temazepam) which I took 7 days after each chemo and it made a huge difference to have a good night's sleep every night. Good luck with everything Sandra and I hope that you breeze through with very few side effects. Take care  Rachel    ... View more

Hi Josie, I saw your post and thought you sounded like me when I was having chemo. I actually finished my FEC-T over a year ago and also really struggled with the lack of sleep. As it was caused by the steroids my GP was happy to prescribe sleeping pills (temazepam ) and they were a godsend - I got 20mg pills which are double the usual strength but they were fantastic as I could get a decent sleep every night  even after lots of steroids - and everything is so much more bearable after a few hours kip. I was careful  though as I know you can become reliant on them so I only took them for 7 days after each chemo. So it is definitely worth seeing your doctor about it as they can help you.    And for the cold cap  - try to bear with it. It worked for me. My hair really thinned, especially on the crown but it was still there! My tips would be to hold on to the roots when you brush it (every hair is precious and you don't want to pull even one hair out !) and stock up on Batiste dry shampoo -it was my best friend!  And the real  bonus is after chemo finishes as the new hair seems to grow very quickly, so 9 months post chemo my hair looked thick and normal  (albeit with chemo curl so I resemble a poodle!)   Sending hugs to all you July girls Rachel      ... View more

Pas-the-boss - glad to hear everything went well today - I too found the actual experience was far better than what I had been expecting.  It's so good to feel that you have actually started on the chemo "journey" .I hope that you manage to avoid the side effects. Georgina - you made me laugh about the wig - my hubbie was very hopeful about a lovely long blonde wig until I ruthlessly opted for the short practical bob that just looks like my own hair (except it is styled far better than I  usually achieve). I am trying the cold cap, altho' I know that FECx4 will test it and Tx4 may well get rid of any that has hung on - and so I have been told not to wash my hair more than twice a week just to try and help it survive - you can't blow-dry it or do anything much with it as it will be too fragile. I'm willing to give it a go as I know that even if I lose alot of hair, apparently it will grow back quicker once chemo has finished.  Deb - It's good to have a start date - try not too worry about it too much if you can - certainly I imagined that the whole dunking thing would be awful and I would be struck down with all manner of SEs, but, touch wood, it has all been straightforward so far. Best of luck to Katepb and Hg12 for tomorrow. xx   ... View more

FEC-T - 1st  FEC - Day 5 Great news Nikki- I bet that's taken a weight off you mind. Thanks for the flu jab info - I thought I had missed the boat for that but will ask my onc if can have it - one less thing to worry about catching! Another night of a buzzing mind and a very loudly beating  heart and therefore not much sleep but at least I have talen my last steroid - I wonder if they would let me reduce the dose next time as I have had virtually no nausea ?. And I have washed my hair for the first time since chemo - such a fantastic feeling to have clean hair, altho' without been able to even blow-dry it it does resemble a mouse's nest! Good luck to PTB, Ally & Tracey today - hope it all goes well. Enjoy the sun if you can. xx       ... View more

FEC-T  -  1st FEC - day 4 Hi Stars - welcome to DTebbs and any other newbies. Well day 4 now and still feeling fine. Keep waiting for some bad side effects but nothing so far. Did get fed up with not sleeping but took a sleeping pill last night and managed to get a few hours - so feeling much more human today. Sorry for being stupid Sam , but what are the Burgundy Book rules? Good luck for all those with onc appointments and those getting their first dunking this week. xx ... View more

Hi Bonnie, It probably is the steroids keeping us awake - I am having to take Dexamethasone for 4 days  - I thinks it is to prevent sickness/nausea and then I have some back up pills called Domperidone which I can take if I feel nauseous (and these have been really good ).  Neulasta is an injection (or a course of injections) which help you to produce more white blood cells from your bones and so reduce the risk of the dreaded neutrpenia sepsis. Some hospitals give you it automatically but others wait and see if you have a problem with your WBC  levels as I believe that it is very expensive. And of course, as with everything that is supposed to help us, there may be side effects ; I was warned about pain in my hip & leg  bones. Hi Nikki - poor you. Seromas are such a pain (literally). I have still got mine 5 weeks after surgery altho'  it is about half its original size. It felt like it would never go  -  I had to have it aspirated twice but they were happy for me to have chemo just as long as they thought it would need no further aspirations. Mind you it seems to have got a bit bigger since my chemo which is a little worrying after it was decreasing nicely until then!?   xxx ... View more

FEC-T, First FEC, Day 3 Hi Stars , Welcome Kate , best of luck for the 4th . Jo, like you I found that the Neulasta jab was fine - I didn't look but hubbie said it worked! I'm only having one  jab  after each chemo so that's not too bad. Gold,  I have been drinking lots as well - my nurse said that the 24hrs after chemo were the most important - but I found it really hard as I did not like the taste of tea, coffee or tap water any more and the only things I can manage now are sparkling water and squash. Bonnie, we will all be thinking of you on Monday - like Elma says, try not to worry too much xx   Pills are still keeping nausea at bay but only 3 hrs sleep last night - an improvement but I am feeling rather zombie -like. Rachel   ... View more

Thanks Barbs, Will let you know how hubbie does with the injection - it has to be in the tummy area and the nurse said it is foolproof!!  This chemo does make you paranoid - I have already taken my temperature 5 times and after worrying about the temperature range I have I did Google it and apparently 37.1  is normal especially in the middle of the day - phew!  I must try to concentrate on normal things rather than worrying about incipient side effects or possible infections otherwise I will be a nervous wreck. Hope everyone manages to enjoy this beautiful weather. Rachel x ... View more

FEC-T - 1st FEC - day 2 Glad to hear that everything went well for Gold, Pips & Jo on dunking day. I'm glad to say that after days of worrying the actual chemo yesterday was fine. The cold cap was awful at the beginning - 20 mins of pain but after that I went numb which was great! Any one planning to try it, I would say that I wished I had worn something warmer as I was very cold despite being given a blanket, and a bare neck was not much fun as the freezing cold water pipes leading to the cap were resting on my neck. Just hope that it works - in any case I think I will buy a wig as my hair looks terrible today and with another couple of days without washing or styling it will be hideous - my children will not be seen in public with me looking like Professor Snape! For the first 3hrs after chemo I felt normal but then queasiness set in - if anyone is given Domperidone anti-sickness tablets to take at home,  it may be worth taking them before bed even if you don't feel too bad; I really should have taken a couple before bed as I woke up after 1 hrs sleep feeling really sick and despite taking my tablets then I didn't get any more  sleep (probably due to the steroids). But at least taking the 2 Domperidones worked really well to make the nausea disappear and I still feel fine this morning. Another bit of advice is try to write down when the chemo nurses tell you  to take your medicines & the minimum gap between doses as there are lots of pills to take - and even though I was told at the time it is hard to remember when you get home especially when the prescription unhelpfully doesn't specify. I have also written a mini-timetable (OTT I know!) but I'm worried about forgetting to take something. I am also having Neulasta & have volunteered my poor husband to give me the injection today (at least 24hrs after the chemo - again a timing that I have to remember!). Luckily he is not squeamish and it will save me having to go back to hospital. One thing I have noticed is that my iron levels (Hb) are 12.5 which sounds low - should I be worried about this? The nurses said that I can't take my usual A-Z vits & minerals so this can only mean iron levels will reduce. Has anyone else been told that they can't take vit/mineral supplements? Good luck to everyone else waiting - hoping it all goes smoothly with few side effects. Rachel xx   ... View more

Hi Barbs, Just to let you know my details for adding to what is looking like a long list of Stars: Dx was grade 3 idc 12mm - WLE on 25/07/13 and SNB (no nodes affected). Chemo will be FEC x 4 then T x 4 and then rads. Ist chemo will be on 29/08/13. Will be trying cold cap. Being treated at Spire Dunedin in Reading. Hope this is all you need. Thanks for organising this Barbs - it is reassuring to see how other people in the same boat are getting on and to, no doubt, compare notes on what seems to inevitable SEs with the chemo. Rachel ... View more

Hello Ladies, can I join the September Stars? I'm actually due to start chemo on 29th August but that's practically September! I was dx with a grade 3, 12mm, triple negative lump which was removed on 25 July (no nodes involved). I have been waiting for an annoying seroma to reduce before chemo can start but it does look like it is finally on the wane. I am due to have 4 x FEC and 4 x T, followed by rads. So far the worst bit has been waiting; waiting for results, for the seroma to reduce, waiting for a start date for chemo. It sounds really odd but in a way I'm looking forward to chemo just to have something definite being done  - I don't like sitting around feeling that precious time is being wasted. I'm in Reading - not sure if any other ladies are being treated here? Rachel ... View more