Hi Amber,
Lucky lady getting Emend and Neulasta!!! At my hospital we only get those if we are ill on the first cycle, and then get them for all subsequent cycles. I haven’t started my chemo yet, but some of the Valentines suffered bone pain with the injection and needed painkillers. Perhaps you could have a quick browse through.
xxx
Hi, I am new here. Have been diagnosed with DCIS, I think it is invasive as there is a lump under my arm, a biopsy found cancer cells there. I have been told there are 3 lumps all in the same place, total area ~4cm. Starting chemo next Tues to try to shrink things a little.Poss 6 FEC but have not had the results from HER test. Positive for hormone receptive, so could be that I have 4 FEC and 4 of something else. Then an op to remove lump, then radio, then Tamoxifen.
My question is, is there anyone else in the same boat as me I am 38 years young…Any tips and advice is greatly recieved.
Thanks x x
Hi
Linda & Lori, thanks for the replies and info, asked my nurse and she said much the same so will just have to wait and see. Still feel fine tonight but feel there’s a time bomb waiting to kick off.
Linda, just read your post on Valentines, so sorry you re had a rubbish day, hopefully you’re feeling a bit better now and try n put it behind you
take care xxxx
Hi Ladies
As suspected, went to my pre chemo app today and had horendous time trying to get blood - ‘you will need a hickman line or portocath fitted’ the nurse told me. Well surprise ******surprise, I thought, I have been telling you this all along!!! After some ‘words’ i got them to try a few more times and one nurse eventully got blood from a vein I pointed out to her. Too much messing about however, so will need to get line fitted before chemo can start (due to start this Friday). I have insisted that they at least try on friday and then arrange for the line to be fitted before chemo no. 2 - really peed off, as I have been telling them this all along and my surgeon pointed it out at the start of the process however, no-one seems to have listened or prepared for it! (I’ve also not heard a word from my BCN in weeks, which is annoying me as well) - sorry for rant ladies!
Anyway, that all sounds pathetic compared to what some of you lovely ladies are going through
Amber, Lori - hope you are still ok, your posts are really helping me to prepare - thanks so much
Littlescoot - hope you see the Onc soon and find out treatment plans and put your mind at rest
big hugs
Pauline xx
Hi Ladies
Debra, Lori and Amber hope you are all doing Ok, and thanks for letting us know what to expect.
Littlescoot - excellent news that they have got it all.
Zuzy -I have changed my hair appointment on Tuesday from the usual colour and trim to a short cut. I suffer from female pattern baldness and have extremely thin hair on my crown so it is more or less inevitable that I will lose my hair. I think it will be easier to deal with short strands of hair falling out rather than seeing long strands in the pillow or brush !
I have my oncology appointment tomorrow so will give you an update tomorrow .
Take care everyone
Kim.
Hi, I started my chemo on 28th March, but I hope you don’t mind me joining in with the April group; most of the March group seem to be on their second cycle already and as I will have to have 8 cycles, they will be done with it all well before me.
I’ve been prompted to reply to Spudgirl re the Portacath. I had one put in a couple of weeks ago. I opted for a general anasthetic, but regretted that. I’d just started to feel really well after the surgery, then had to recover from another op; with hindsight I’m sure a local would have been easier to get over. The Port itself does show as a lump under the skin, and I still have marks from the incision but these are minor and will fade I’m sure. It took a few days to settle down, but it’s now completely painfree and I only notice it if I touch it inadvertently. I had my first round of EC chemo last Thursday and it was really easy to insert the lines into the Port, minimal discomfort at the time and absolutely none afterwards. I normally end up with a huge bruise on my hand after a cannula so I’m really glad I went with this option. Good luck!
Dear Littlescoot,
they have got it all and the chemotheraphy will mop up anything horrid. The size is not as important as the grade.
I have had chemotheraphy no 2, not as bad as first I feel like I have a hangover but no enjoyment to remember.
i know about fear because I have had a new breast cancer diagnosis in Feb this year resulting in an masectomomy, grade 3 like
you. My prognosis is good like yours will be because the margins are clear.
I am trying the cold cap, my hair is shredding, so fingers crossed!
thinking of you all.
Debra xx
Hi. Have got my date for chemo. I start on tuesday. Also have had my long curly hair cut to a very short pixie. Feel so low and everything seems daunting. I am worried its spread as I had tummy ache last night and felt sick. I get headaches too. Im sooo scared keep crying and feel out of control. Saw the doctor last night who basically said get through each day at a time and anyone could die anytime. xxxx
Hi. Have got my date for chemo. I start on tuesday. Also have had my long curly hair cut to a very short pixie. Feel so low and everything seems daunting. I am worried its spread as I had tummy ache last night and felt sick. I get headaches too. Im sooo scared keep crying and feel out of control. Saw the doctor last night who basically said get through each day at a time and anyone could die anytime. xxxx
Yes, it is true that we have no control of life, however it this case you are in the process of saving yours. Call your BCN and get some councelling put in place, I have two sessions and found it helpful. Your stress related feelings are normal and everyone feels those.
Also, once you start your treatment you will other people you are going through similar treatments.
so, ask about counseling and possibly the cold cap I am hoping to keep my hair.
remenber my cancer came back and I am still here 11 years later at 50 years of age to fight another day.
love and best wishes.
Debra xx
Morning girls,
Fec-t Cycle 1 day 3
Dare I say another good sleep, had my Neulasta injection around 6 last night and no side effects as yet. about at 6 this morning with a bit of a headache and slight sicky feeling so took anti sickness tabs n headex and slept for another couple of hours. Have eaten breakfast and took steroids and the rest of anti sickness tabs and feel fine, Iam also trying to drink lots of fluid during the day. Keeping waiting for a bad day to hit me.
Lori & Debra hope your doing fine, my chemo nurse said the s/e could feel like a bad hangover
Rozz - welcome to the gang it will be good to pick your brains as well
Littlescoot - glad they got everything, this is good, try and think positive
Primrosehill - great you start next Tuesday, the hanging around is the worst, once you know you can move forward and start ticking off the boxes. My hair is a biggy for me too, I have lots. I’ve bought a couple of wigs and have decided to get my hair cut short when I start to feel my scalp getting sore. That way I will start wearing my wig and won’t have the trauma of handfuls of hair falling out. Iam just not confident enough yet to go out with short hair. I felt better about making the decision as I felt I was in control where previously I felt I had no control over anything. So by cutting your hair it’s your decision and you have taken control - go girl ! We are all here to support each other.
Pauline - what a terrible day you had yesterday, these things don’t help us when we’re so near to our start dates. I think your right to insist they at least try, for one youll be mentally prepared for tomorrow and if your anything like me don’t want anything to postpone it now. I just wanted to get it started as soon as. Good luck for tomorrow I’ll be thinking about you.
take care. Xxx
Primrose hill - sorry you’re having a rough time. I really would recommend some counselling. I’ve been a bit of a emotional mess recently and have now had 3 sessions with a good psychotherapist, to whom I was referred by my breast care nurse. It really does help - sometimes it’s just easier to unload to someone who isn’t close and involved. The therapist I’m seeing is also very good at practical, usable “tools” to help people cope with the treatment.
All the best - thinking of you
Wendy x
Sandy - Wendy is right, you need someone to talk it through. I didn’t do that last time, but it meant by the end of treatment I hadn’t really acknowledged anything, so had several counselling sessions after and talked about other stuff too and felt a ton better! I think you’d be better talking with someone now. If they offer me anything like that this time round I’ll just say yes, even if I feel okay.
Rozz - thanks for the info on the Portacath! My veins go into hiding when I have injections (like Pauline I think!) so its always a hassle trying to find one and sometimes end up with needles in stupid places because of it. So although I am not thrilled at the thought, I think it will be better for me.
Pauline - which chemo are you having? I only ask because you have triple neg too. My Onc told me mine and stupidly I thought I would remember it and now haven’t a clue, although I think it began with an A. I’ll ask him next time I see him to write it down, but that’ll be on 15th when I start. It didn’t occur to me that it was that important to know yet, but my dentist says he wants to know.
xx
Hi Spud,
When you saw the oncologist and he told you which treatment you will be having, did you sign a consent form? If so, the treatment plan will be on there and you should have been given a copy of it.
I had my portacath fitted yesterday. The procedure wasn’t the most pleasant experience, but there was no pain at all other than the “sharp stings” when the local anaesthetic was administered - a bit like at the dentist when you get an injection in the gum. I was given the choice of sedation or no sedation. I chose not to have any. I was a bit uncomfortable due to having to lie on my back for 45 minutes with my head turned sideways, so I got a crick in my neck, and I felt a bit woosey half way through. I was assured my heart and BP were absolutely normal and there were no complications. They gave me a bit of oxygen and I was as right as rain again. I took a couple of painkillers last night as a precaution for when the local anaesthetic wore off, went to bed early and slept right through the night. Today I have no pain at all and haven’t needed any painkillers. It just itches a bit, but this might be the dressings.
I hope this hasn’t put anyone off - it really was painless. Once the dressings are off I can bathe, swim, and not worry about knackered and sore veins!
Linda xxx
Hi everyone, met with the oncologist today and have been given a provisional start date of 12th April for first cycle of EC Chemotherapy, I have to wait an extra week has I currently have a boil that is being treated with antibiotics and I can’t start my chemo until the infection has gone. I mentioned that was going to a family wedding on the 31st May and I was told there would be no problem putting back the 3rd cycle by a couple of days until after the wedding, which is great as I really don’t want To miss it.
there was no mention of picc or portacath today…that may come next week.
I visit the chemo suite next week and my BCN will give me a voucher for my wig, from an exclusive wig supplier in the Victorian arcade in Leeds! She is also arranging an appointment with the ‘looking good, feeling good’ charity, which shows you how to adapt your routine and makeup routine to cope with changes to your skin and hairloss, apparently you are given a goody bag full of cosmetics by Christian Dior, Clarins, Estée Lauder etc, it may be worth mentioning it to your BCN to see if she can book you in at a local venue.
I’m lucky that there is a Breast Cancer Haven in Leeds that offers a range of complimentary therapies, support groups and counselling which I might consider, depending on how I react to the chemo.
My order has arrived from Anna Bandana, the sleep cap and headband scarf are both lovely and excellent quality. I can definitely recommend this site as it is I also really reasonable.
Debra, Lori and Amber I hope the SE are not too unbearable
Kim x
Hi Ladies
Got a call this morning to say chemo is delayed until Monday at which point they will put in a Hickman line and then do the treatment same day - so not too bad. Interestingly, a portocatch was mentioned (like some of you other ladies have) however, I was advised a hickman line would be better as some of the chemo nurses are not comfortable working with the portocath. Really inspires you with confidence!!! (especially as I am attending the biggest, specialist cancer hospital in the west of Scotland - go figure!) Anyway, just glad it is starting on Monday - and have another ‘free’ weekend to enjoy first 
Spudgirl - yep I am triple neg and cocktail of choice is FEC-T - yummy!
Amber - sounds like things are going okish? How has your appetite been and taste buds? (tried that whiskey and Inr bru yet ? :)) My hair is shoulder length so like you ,plan to shave off once scalp starts to show first signs…
Can I ask a silly question, are you given all the pills for s/e’s upfront and take as and when you need them or do you need to call your own doc or chemo nurse to get more prescribed depending on what you need? Just trying to figure out how it works if you present with a s/e other than the normal nausea etc. Would you go to your GP in that instance ?
Off for a nice glass of red!
take care ladies
Pauline xx
Evening Ladies,
So far so good today has been fine again!
Kim - glad you have a date at least you can plan ahead now
Pauline - sorry you have to wait until Monday, but at least you can enjoy your weekend. Haven’t tried the whiskey n iron bru yet, maybe best wait a few days. The first day I wasnt really up for much to eat but been ok since and taste buds are fine so far. I’ve been really trying to drink plenty so don’t know if that has helped. I was given all meds up front and have taken all the anti sickness ones as prescribed whether or not I feel sick. it seems to be keeping the sickness at bay rather than wait til it happens. I also have strong ones that I could take if I felt really bad and just want to curl up n bed but fingers crossed I haven’t needed them.
i expected it to be a lot worse, each day I wake up and think is this the bad day so fingers crossed, you should have seen me this morning when the steroids kicked in, the housework got blitz no problem.
Debra & Lori hope your s/es are not too bad
take care xxxx
Hi everyone,
I got confirmation today that I will be starting my chemo on 10th April (6x FECT). Whilst feeling very nervous I’m pleased to get things moving so I can have my life back sooner. I’m going for blood tests on Tuesday so have booked an appointment for a wig fitting on the same day - there is a wig shop at the hospital. It’s a shame that I’ll be losing my hair as I really like my new Pixie crop. I’ve always had long hair. I hope you like your new cut Zuzy.
I went for my prosthesis on Tuesday and one of the staff at the Macmillan centre showed me how to tie scarves. I couldn’t believe how easy it was. I now feel as ready as I’ll ever be. Hats and scarves bought, wig appointment booked, dvd from ‘look good feel better’ ordered and number to hand to book a makeover session. All this and the fantastic tips and advice from everyone on this forum has made me feel like I have more control over the dreaded hair loss business. Let’s hope I can stay this positive after my first cycle 
.
Littlescoot - I had similar feelings when I got my results back following my mx. I had 3 tumous, 1 was 65mm grade 3, the others grade 2. Even though my lymph nodes were clear and the tumours were removed with clear margins, I was more shocked by the grade and size. It does scare me that it was so aggressive in case it comes back, however I am trying to focus on the fact that the chemo should destroy any trace of anything that may have been missed and as my cancer was hormone dependent, Tamoxifen should reduce the risk of recurrance. It’s easier said than done, but try to focus on getting through this battle. The other might never happen.
Hi AAA’s, I know there are rather a lot of you already, but I was hoping to join your group to get and offer support as I start chemo (FEC T) on 12th April. Had a bilateral Mx on 26th March (IBC 27mm right and 7mm left with lymph involvement). I’m feeling really apprehensive, but trying to keep a brave face for my family, especially three teenage children! Am planning to use the cold cap and haven’t had my past-shoulder length hair cut yet, so probably under-prepared on that front. No wig either, but have spotted a Raquel Welch one online that might work…! Good luck to anyone having treatment today, Katie
Hi Katie, welcome to the group!!
A few AAAs have started treatment recently and there are a few more due to start over the next week or so. I start on Monday and am also on FEC T so I’ll keep you posted on how things go.
I haven’t cut my hair either and given it will be gone in a few weeks my intention is to just leave it for now and shave it off when the first signs show. Not planning to wear the cold cap myself as I love the heat and dont think I could handle it!! 8)
Feel pretty organised for Monday, just need to book app for wig which I’m trying to time for when I will have lost my hair. Looking forward to a good weekend before the fun starts…
Hope all the AAAs who have started are holding up well - big hugs xx
Pauline xx