Happy Birthday Val. You are so brave.
i am psyching up for my second FEC onTuesday! Had to wear my wig today my hair is falling out fast now. My wig is fab though hand tied and lloks so much like my hair did. Have a. Nice evening x
Hi ladies re nails - it's the taxol app that makes them dry and brittle and a darker polish protects from UVA as the taxol reacts to it ( apparently!) be careful with the multi vitamins tho I was told not to take any vitamin supplements as they can react with other stuff might be worth asking your oncologist xxx
have a good weekend ladies xxx
Sorry ladies forgot nails. Keep them really moisturised, get them wet as infrequently & for as short a time as possible & only file in one direction. I have been a bit OCD nails, because I feel queasy about the effects of chemo & done them 3-4 times a day. Best is onicolife drops (but expensive c.£15 for small bottle) other stuff my nurse recommended is horses hoof (cheaper c. £6 for big pot & v.good) or dada oil (4.50 tiny bottle). If you are going onto tax after, then they say keep as short as you can stand to avoid knocking them. I'm in cycle 6 of 7 & so far so good, they look & feel completely normal, but you can get a delayed reaction, so keep up the regime after chemo finishes. They can discolour & become loose at the top. The discolouration is allegedly due to reaction with light (I read on line but none of the nurses have heard of this), hence recommendation to cover with dark nail polish/cotton gloves. I guess it's like the hair, depends how much it bothers you as to what you're prepared to do. x
Well done Tina & Red Robin - first one over & done with. RR most of our hair started to fall day 16-21. Don't panic that your cold capping isn't working, you will lose a bit anyway. FECT is hard on the hair & most will lose at least 20%, but just keep in your head that we have over 100,000 hairs & so a couple of hundred here & there won't look any different to other people. Good luck to you both & drink a lot of fluids if you can. xx
Red Robin, we can do this mate! Are you on FEC X 3 and Tx 3 like me? How long did your first session last? I'm petrified of the lot of it! Hair loss, nails?... So not fair.
I went to the salon that provides the wigs in my area and waiting for prosthetics dept to send them my voucher. They seemed very nice there and said they'll take time to match colour, trim and fit to my liking. I'm hoping I won't need it! But, though I greatly admire the ladies that go bald out and about proud, I'm afraid it's not for me. Vain? Probably, but I don't even like nipping out without some make up on!
Keep in touch on here, or if you like private message me xxxxx Tina
Morning all, 💐🎂 Happy Birthday Val! And well done on getting this far, over half way now? Have a wonderful day xxx
What a disturbed night I had!?....... After feeling so cold coming home about 5, I felt really hot about 9. Hubby took temp but it was fine.
Finally dropped off, after laying there thinking about the 'stuff that's been put in me and imagining a crazy 'battle of the cells' going on inside! Like some crazy cartoon! Still after all these months, I can't believe this is all happening to me. I was awake at 2, hot, cold, tummy churning........ Think my mind is just waiting for my body to react to any side effects!? Here we go again, paranoia time. Up a few times for a wee and decided to get up at 8, have a fuzzy head, feels like I've been on the pop last night! I wish!!!
Washing on, catching up on my soaps (of which nearly all have someone with cancer! Ffs!) with cup tea before the medication is started, how many!?! But if it's going to help? Bring it on!
Wishing you all a good weekend, take care, xxx hugs xxx Tina
hi pammy I am 72 today and just finished 3xEC and 3 Taxol I have 6 more taxol to go and radiotherapy.
i am based in West Yorkshire and having my treatment at Calderdale radiotherapy will be Leeds. I really have not found things too bad the nightsweats at the end of the 3rd EC is the worse thing I have had. Changing night clothes and bedding three times a night is not good for me or hubby but they have subsided a lot now on taxol. I did not cold cap due to my chest complaint oncologist did not recommend it. I have a nice wig and wear it most of the day.
i have found the lack of energy hard as I am usually very active and when I was on EC I had a fuzzy head which made me feel I did not want to drive which I found really hard but I am ok now. Cannot wait to get all this treatment over with so we can get off to Spain where we usually spend the
we have 12 coming for lunch today to celebrate my birthday must be mad!!, hope the energy holds up.
happy Christmas to you and yours hope your treatment goes well.
PS although I did not want a PICC fitting I was scared it has been a godsend. I hate needles
Thanks for advice Marina, I'm feeling tired now but that could be due to doing nothing!!? Just thinking about how many syringes were pumped into me and what it's all doing to me inside. My head still feels cold, but though it sounds daft, cold inside?!? Also came over hot earlier but ok now. Will be in bed soon xx
So glad it went well Tina. My side effects started kicking in the following afternoon. In hindsite I tried to do too much on the 3rd day. Next time will definitely stay in PJs and possibly bed. Do not be fooled by thinking you are OK as later you will be worse. I know they say drink drink drink but I just couldn't, will try harder next time!
so glad it went ok. I went for my pre-admission prior to chemo next week. Hope you carry on feeling ok.
love and hugs xx
Hi all..... Number one done! All started at about 1 and I was out by 4:20, earlier than expected. I'm on sofa 'chilling'........ My head still feels cold and I've a slight headache.
The unit and staff were brilliant, looked after me and hubby well. Five chairs there and probably four used any one time. I was fitted for cap, and medium decided on as small didn't quite come down sides enough. 'Bob' the needle man was gentle and quick, my Macmillan nurse was there (she's head nurse in unit) and I was looked after by two others (whom I won't name due to rules on here).
I had canula put in first with saline plus anti sickness through it first. Then my nurse came to 'do her hairdressing bit'. After placing towel round shoulders sprayed my hair with warm water until very damp. Then used Dove conditioner combing it through. My system was the Paxman one. I didn't need a headband. My 'riding hat' (as hubby called it!) was put on and the straps pulled down under my chin and pulled tight either side. This felt really uncomfortable at first, but after a while I accepted the restricted jaw movement..... 😜 So, there was no point in taking in snacks as I only managed a choccie biscuit with my cappuccino from the staff! (Hot drinks available as and when wanted, staff asked regularly what we'd like?)
The lowest temp the machine went to that I saw was minus 6. First 15/20 mins was quite uncomfortable and felt like brain freeze, but everyone was right that after that it feels better. Staff made me comfy with a blanket, pillows, hot drinks. The actual treatments went quick! One syringe put on and not long later machine bleeped and another put on, finished about 2:15 then more saline flushed through. My Canula was removed about 2:30. The WORST bit was the last hour. The headwear brain freezing hat has to stay on for hour and half after treatments done. My jaw was hurting so much at this point and I couldn't get comfy, had real face ache! But I just kept telling myself how good it will feel when it's loosened! Hubby put pillow my arm had been supported on behind my head and my nurse came over to ask if I needed anything. Told her I felt cold and she reclined my chair, put the foot rest up, opened up the blanket and tucked me in ☺️ I tried to 'rest/snooze'
I was relieved at 3:45 when she came and to loosen it, I had to sit with it on for about twenty mins still, while I 'defosted'! While she went through my booklet, instructions and meds. Omg! How many?! They've organised district nurse to come tomorrow to give me injection. I've booked my blood test for 6th and round two booked for the 8th, all being well.
So, now I wait........ For any side effects!?........ Usually in next 2/3 days? How long will they last? Pray for none or minimal and that I'm feeling ok for Xmas and the panto on 27th! 🙏🏼
love and hugs to you all and thanks for being there and your support is invaluable! 😚Xxxx Tina
Red Robin I don't know if you tried Trendco. I found them to be really good, although I was looking for blonde bob rather than long auburn locks. I would say they were in Brighton, but I'm not a local, so it could have been Hove. I read elsewhere that you are due to get married soon, no wonder you were having a hair crisis! Really hope the cold cap works for you.
Pam sorry to hear about your diagnosis. Not sure if it's better or worse to know what's ahead😬. There are a few people around who had/are having EC. The main issue for me was nausea/morning sickness feeling for a couple of days, a weird spacey/forgetful steroid feeling & low immunity week 2. Most of us felt back to normal after 3-4 days. My advice would be drink as much water as you can the day before, day of & day after chemo. A lot of ladies had quite bad constipation, so might be worth having some senna in. All the best. BBxx
Hi all I'm lesley and usually post in the Nov thread but read many posts from you all. This has given me tremendous support since September when I was first diagnosed.
I just wanted to say thinking about you red robin and Tina today I know you have your first chemo. I remember the anxiety that first time for me but wanted to reassure you both it wasn't as bad as I expected , nor was it for my husband lol - he had worried about it all week!
Yes I got side effects afterwards but they were doable and you might not - everyone is different and there are a massive amount of medications that can help. Always remember each round is one step nearer to the goal of kicking cancers a*s# right back to where it belongs.
Stay strong ladies xxx
Hi, I'm Pam, I am starting my first chemo EC on the 30 Dec. I am a very young 74. I have had a lumpectomy and lymph nodes removed. My daughter went through the same thing three years ago at aged 47. A different chemo but on the same breast, so have a rough idea what can happen. I am a very positive person and know that everyone out there going through this is determined to get back to normal.
Can anyone tell me their experiences having this particular chemo please. EC one. Sending lots of support to you all. Good luck Lozza.
Sorry Tandy didn't see your post till now. The lorazepam is to take the edge off the pain when they first put the cold cap on - some are ok with it but I found it not nice for the first 15/20 minutes and then you get used to it. I had the cold cap every week so the lorazepam helped me a lot but it does mean if you take it you probably won't be able to drive yourself back. I also had a nice sleep every time during treatment and I was there for about 3 hours. I had a portacath fitted and had parecetemol and piriton through the port so if you take paracetamol before they need to know so you don't get it twice. I've also heard Simple shampoo is good - any shampoo that has natural products is good. Good luck everyone on your chemo journey - it may seem daunting at first but it really is doable and have a look on the older threads for tips or post on there if you have any questions - our August 2015 are a friendly bunch and really helped me through my chemo xxx
Hi Red Robin if you've tried some wigs already you will know your head size which is usually average for us ladies. Have a look on site called Wigsway. I was looking the other day and there was some nice human hair ones and synthetic as well and lots of colours to choose from. The only thing is I don't think you can use your prescription towards them but they do start from about 74 pounds. There are quite a few sites I just googled human hair wigs. Also probably best to go for monofilament cap supposed to mould best to your head when hair is gone but bear in mind if cold capping you may not lose all yours. Please let me know how you get on as I'll be worrying about you lol xx.
Hi Tandy, I'm from the August 2015 thread and have finished chemo and now on rads. I used a shampoo bar from Lush called New and I also used their conditioner. I had 12 weekly taxol and have fine hair but a lot of it. My hair thinned a lot but I didn't need my wig or scarves so I was very lucky. I had one lorazepam before the cold cap went on and they gave me piriton and parecetemol with the chemo. Good luck everyone with your treatment xxx
Hi all...... Thanks for all of your advice and experiences. Sitting here feeling quite calm reading up on the Paxman cooling system and hoping it'll work for me. If any of you used this, what shampoo/ conditioner did you use during treatment? Did you buy the paxman stuff?
My scan went ok today and reminding myself this time tomorrow session 1 ✔️👍🏼 I know I probably won't feel as calm/ good facing session 2 but I'll cross that when it comes.
Hugs xxxx Tina
Hi Sam, Marina,
you will get better each day now. Just been into Newcastle having a wig nightmare, the one
I had was too big so new one on its way. My hair is really thin now.
making most of weekend before my next one on Tuesday.
one down girls xxx
Haven't written for a few days as been feeling really rough. All the usual side effects mentioned here and a general sense of not being able to cope. Luckily my other half comes home for lunch everyday too as it is quite a lonely experience. Have been eating well even with the awful taste.
Think I'm coming out of it already (chemo was Friday).
One thing I felt was that everything bothered me, and if the rubbish had been closer I think I would have thrown all my clutter out! Certainly making me evaluate things.
Hope everyone else is coping and not too many side effects.
are you having FEC or Taxotere? I had FEC on the Tuesday and was wide awake all night, on the wednesday I was ok and on the Thursday had really bad heartburn and constipation. I got Lansoprazole fro the doctor and they fixed the heartburn in a crack. It was the awfulmtastenand ragingnthirst that were the worst. I am day 16 now though and back to normal,although my hair is dropping out fast. I decided against the cold cap.
it wasnt as bad as I expected it to be but not looking forward to the next one on Tuesday.
Hi Tina it is all totally overwhelming, but all you can do is take it a day at a time.
The whole thing is a long journey. I got diagnosed with widespread DCIS in July. I had a double mastectomy in Sept and recovered really well. I found out after that I had 13cm of invasive BC hence chemo and radio. The oncologist weren't sure whether to give me chemo so I did the Oncotype test and found out I had a 47% chance of recurrance. I have been set against chemo but at the end of the day you have to do whatever gives you the best chance of making sure it doesn't come back. Chemo is daunting as are the side affects, but I've decided that I'll deal with them if and when they happen, and enjoy the days I feel good like today.
I had my first round yesterday and so far (fingers crossed am ok). The cold cap was damn cold but after 15 minutes you kind of adjust. Just make sure its as close to your skull as you can make it (i tied mine down with a scarf 😉
I picked myself up a wig yesterday, and although I would like to think I wont need it its good to have a back up. Good to know though, I met a lovely lady yesterday at chemo who was on her 4th round using the cap and still had her hair. So it does work for some people.
Anyway sorry for the rambling. Good luck. And good to be on a forum with other women who are going through the same thing. Wishing you all well x
yes you are on the right page. How are you managing, are you having any side effects? I have my second FEC on Tuesday 22nd :(. Not looking forward to the horrible taste in my mouth over christmas.
Hi Tina I don't know if it was our posts you read (feel bad now!), but I am still glad I have kept my hair for the last 3-4 months, even if it doesn't look perfect anymore. If you don't give it a go, then it's definitely all coming off, I'm afraid, so surely worth a try? Make sure you take 2 painkillers an hour before & if there are any machines request them. I got the bald patch because the nurse suddenly decided to put a small cap over a medium inner & it sat up, with not enough scalp contact. If that hadn't happened, I would still be fine, albeit that hair has thinned a lot. Have faith & don't wash your hair too much at the beginning. Sounds scuzzy, but it needs washing less anyway as you go along. Also regrowth is supposed to be speeded up by 1-2 months, so worth it even just for that perhaps, if the cap doesn't bother you too much. Good luck & don't think of the whole nightmare, just face what happens week by week. I am on the last few treatments & still playing golf 3x a week & my nails are fine. All the best xx
Hi guys, have read all your lovely sensible (cos I'm needing sensible right now!) replies to Red Robin. Though earlier I felt quite calm about my MUGA Scan Thursday and first session chemo FEC Friday....... But I've just read lots of posts on another thread about the use (and many failures and give ins) of the cooling system. I've got a letter from hospital to go for a wig, but worrying again about the hair Loss! I'm hoping I'm going to be strong enough to put up with the cool cap! Praying I'm one of, what seems like, minority who manage it and keep all or most of my hair!? Reading all of the side effects is scary stuff..... Then told "carry on with your life as you normally would"..... Yeah? With no hair, crap skin, mouth ulcers, nausea, brittle/no nails, etc etc...... Oh and don't worry if your tears are red..... Ffs!?
Hoping im going to be ok and well for Xmas!!!! Xxx Tina
Hi Red Robin
im from the November chemo thread so not far infront of you
Obviously we cant tell you what to do but as others have said Radiotherapy is targetted and chemo is aimdd at getting anything thats gone off elsewhere either into your breast too small to see or other pargs of your body. Im 36 I have a 7-8cm lump and am having neoadjuvant chemo which will end in March then a mastectomy plus a full node clearance so in theory everything should be gone after a that, I am still having a month of radiotherapy which wil more than likely include a booster week and I see that alongside the 18 herceptin injections I will have into 2017 as sort of insurance. I can honestly say then that I have done everything to stop it coming back.
I only got diagnosed in October and honestly things seem scary now but just deal with one step at a time and it does start to feel easier x
And plan for SEs but dont expect them all some lucny people (like me) get hardly any , make sure you loom after your mouth and skin for sure , try keep a routine for bedtime waking up etc and unless you are absolutley exhausted try not to nap for more than an hour or it really does throw you out for sleeping at night.
Enjoy your good days get out when and where its not too busy and try and get some fresh air and even a small walk everyday.
Love to all
Red Robin So sorry to hear about your diagnosis. We've all been there & know how devastating it is. I don't know if you are aware that the different treatments do different things. Surgery gets rid of the tumour, chemo goes on a search & destroy mission for any cancer cells that are floating around other parts of your body & radioT blasts the site in case there are any residual cancer cells they've missed. I believe radio reduces your chances of it recurring in the same place by a big % (for me 42%), so well worth having, I'm from August & if you have a look in our thread, one of the ladies started last week & tells us what it was like. It's obviously your choice (& I really feel uncomfortable with the idea of radiation too, so really sympathise), but with young children you should defitely have a good think/chat with the doctors before refusing it. Also, if you're in a spin, phone up your Macmillan nurse or the helpline. All the best. xxx
Hi Ann, Ele,
they are lovely replies.
this is my second primary breast cancer totally unrelated to the one in 2008, just bad luck. The first time I had a lumpectomy and radiotherapy. The radio therapy really is nothing to worry about. You go have four tiny tattoo markers so they can line you up with the machine, they look like pencil dots. Then each time you go you go in the room, they line you up with the machine and two mins later it is done. You don't feel anything. It is tying going every day and you do get tired and your skin goes dry but really don't worry about it.
I had my tattoos removed at the end or rather three of them as I couldn't even find the fourth one 😏
Hi Red Robin chin up were all in the same emotional turmoil as you are in the beginning and its awful. I had mastectomy October with node involvement and at first no chemo but things changed.I have second of FEC-T on Wednesday and 1st cycle wasn't half as bad as I'd imagined honestly.l lost loads of hair at the weekend and went out on Saturday night with 1 of my wigs on. I cried loads before I went out but was determined to carry on as normal. I stayed up till 3 15am and cried like a baby when I finally went to bed and my hubby rallied me round with his positivity in me. On Sunday when got up I felt totally different as I realised this is just the next crap step of the journey. As things start to move for you in treatment you will feel better and just try to concentrate on each step as it comes along.Honestly it does get easier everyone on here will tell you the same im sure. I have to have rads to my chest wall after chemo to make sure it doesn't come back or so im told but I don't think about it yet because that comes later. After that I will be having node clearance but it's months away so I don't think about that either. Just try to remember all the experts involved with you care about you and will do what they think is necessary for you.I have got so much trust in my team and you will start to feel this too. I don't know the fear of needles but I was terrified of going under anaesthetic for my op but I came out good at the other side and now it's forgotten until the next time. If you let it be known you have a fear of needles im sure the nurses will do their best to make it easier for you. I'm sorry this is such a long post but all my memories of when I first started this journey came flooding back when I read how you are feeling and it touched me. We will all be here for you so calm down and try to look forward to a nice family Christmas you will be fine trust me xxx.