Just thought I’d drop in on you guys to see how you’re all doing. Brings back memories from this time last year when this forum was my lifeline. Love reading your comments to each other - so supportive, honest and humorous too. Those of you who are 2 down on FEC-T, one more and you’re half way there!! Such a milestone - once no4 is done that light starts sparkling through at the end of the tunnel ?
Loads of love to you all - keep drinking the water ?
Kim (Jan 2016 starter) xxx
Kim
What a lovely thought. How are things with you now? Does it ever feel over? I suspect coming to the end is not as easy as it might appear
Hi kim
Yes I am pleased to be at no 3 next Tuesday. Can’t quite believe it. However I am anxious about the T. Were you? FEC has a familiar rhythm to it. I almost know what to expect. T is the unknown and we hear it is worse than FEC.?
It is so great to hear from you, you have been through it survived and come out the other side. Wonderful. If you say it quickly 4 more sounds not many, but we all know the cost to us and our families, BUT we have to do it to have the time in the future with our friends and family.
Hugs to you and thankyou for posting.
Hi
I have finally taken the decision to join the forum! I have been reading the the posts from the last month and feel that I already know you all and have felt some support from the group, even though I’m not a real part of it! I am a January 2017 chemo starter and after diagnosis of a grade 2 lump and lymph involvement in December am having neo-adjuvant therapy of EC-T before surgery and radiotherapy, but unlike what seems to be the norm, I’m having the T part of first!
I saw Mooney’s post and wanted to offer any advice or information I can about the T part of the therapy - I have had 2 treatments so far of a total of 8 - and am having an MRI shortly to assess it’s effects on my lump. X
Welcome Blue2
I would love to know about the T part. I’ve got 1 more FEC to go and, like most on here, have found it doable but knackering. How long does the T bit take? I’ve got to have Herceptin and Perjeta during the T bit ( for Her2+) so I have visions of being there for hours.
It goes to show how much treatment varies according to the individual and whereabouts you live. Good luck with the MRI and shrinkage!
Jackie - with Emend, I have 3 tablets. Think it is also given through PICC line with the chemo cocktail.
Hi, Blue. Really glad you’ve joined us. And Kim, thanks so much for posting. It’s great to have a reminder that this does pass.
Yeeeaaaay Egg, glad it happened. Hope you’re feeling ok.
Robin, literally lolled at that thought. I can’t get my cats to pose as they essentially think Bex is a squirrel! So we have to lock her away for her own safety.
Hello, Jackie. I’ve been lucky and not felt sick at all,but Emend sounds like it’s been a lifesaver for you. Ha, obviously not literally, or your insurers would pay for it!
Ebim, I found myself tugging at a random hair on my big toe. It showed no sign of falling out for ages. By the way,I thought you said you’d bought Sambuca for your next round. I was very impressed, wondered if the aniseed was for the nausea?
Scotty, are you doing three FEC then T? I’m HER+ as well, but doing four EC before I move onto the T and targeted therapies. So you’ll be able to give me advice. My original oncologist explained EC in detail and said she’d go through the T etc when it was closer. I’m not seeing the onc team before my third EC (exact wording was “we don’t need to see you because it’s clearly a walk in the park for you!”) But I have an MRI before my fourth and then an appointment so I’m going to check then. My understanding is that the first round of T, plus Herceptin and Perjeta, does take a long time. You get a double dose of at least one of them and they wait to check that you’re ok. So I’m assuming my March 29th appointment will take most of the day. TBH the chemo suite is so disorganised that I can never expect to get out quickly anyway. After the first one, I don’t think it’s too long. Then of course we have Herceptin for a year, and again that shouldn’t be long. But the waiting around may be.
Mooney, caravan sounds fab. I’ve never even slept in one, but have fantasies about them. (I know, but they seem really exotic). Scotty, I meant to post this at the weekend. I grew up in the South West, only moved away at 50. And we lived on the Gower peninsula for a while. But I have to say that I think the beaches in the North East are the most beautiful of any in the UK. That picture looked perfect.
Stefr how are things? Any results back? Still thinking about you, let us know if there’s anything you need.
Have a good day all
Ali xxx
Morning Ali
yes I’m 3 x FEC 3 x T. I’ll see the onc, and probably her bloody ruler, before the first T I think and a repeat breast scan.I rather hoped that meant an ultrasound rather than an MRI. I haven’t had one of those and really don’t think I could deal with that (long totally unrelated reasons). I don’t know much about the T part, especially the Perjeta as we seem to be amongst the first batch to have both targeted therapies following the recent NICE approval. Do we have that post chemo? Not looking forward to facing jabs every 3 weeks for a year. I know they say exposure is a good way to cure a phobia but I think I’ve had enough of the needles now!
The beaches up here are gorgeous. Northumberland especially and they are so empty and clean. We’ll just let everyone else believe its grim up North! Funny how we travel about. I’m originally a Londoner who decided in my early twenties to go to Uni to train as a teacher. Came up to Durham, met OH and never went back! It’s looking like my son will probably be heading to the SW for Uni. Swings and roundabouts!
Hope everyone is recovering well this week. Amazed at our bounce backability. Not a word but it should be. It is an awful cliche but you do find strength you never thought you had. Catch up later. Meeting friends for coffee.
My chemo plan is to have 4x EC and 4x T and I don’t know why I’m having the T first, or 8 sessions and not 6, though I might ask when I see the oncologist in a couple of weeks!!! My cancer is er+, her2-.
I had my first docetaxel at the beginning of January and the 2nd last week. The docetaxel infusion bit is fine - as I’m her2- I’m just having the docetaxel and it only takes an hour. I believe there is a risk of allergic reaction with the infusion, so I’m given steroids to take for 3 days to reduce the risk. I’ve been fine with both the steroids and the infusion. The side effects though…! I was scared too after reading information leaflets and listening to others, but you’d be really unlucky to get them all! Although I was convinced I would! Funnily enough, now I’m into the T swing, I’m worried about moving onto EC!! Better the devil you know sometimes - I think fear of the unknown is one of our biggest fears in this whole process.
Before I report my experiences, I need to say that this time has been much easier, SE wise than the first time, and I have some thoughts regarding why! I also have the bone marrow injections to take for 7 days for every cycle, and they give SE of joint pain too, which I think Egg experienced recently. So, my experience cycle 1…day of chemo- OK. day 1, OK in the morning, exhausted and asleep from the afternoon onwards. Days 2 -7 and probably up to day 10 to some degree, brain fog, fatigue and intense joint/muscle pains and joint instability. Then from day 11, OK and I managed to go back to work with a commute of over an hour each way. I’ve had no sickness or nausea, but a funny mouth and no sense of taste for about a week! I have mouthwash prescribed to use 4 times a day which has helped. I havent had any mouth ulcers or neuropathy, but have had diarrhoea! This second cycle has been much better SE wise and I’ve probably come out of the fog on day 5 and I haven’t had much pain or any joint instability and my mouth and taste were fine after about a week and I felt normal again. I did still have diarrhoea though! I think the taste, mouth, diarrhoea and joint pains are the most common SEs. I also have heard that the side effects you experience first cycle are the worst ones compared to subsequent cycles.
What I’ve done differently this time…I have rested in the early days and not tried to do too much! I have young children and in the first cycle I was trying to walk the children to school with my joint pains and instability, be up and about with them, do shopping etc etc. This time, I took to my bed for 4 days and although that was hard, the children have got me back better and sooner than had I not. I also rang the chemo helpline for better pain relief as regular ibuprofen and cocodamol didn’t get rid of the joint pains the first time. This cycle, I’ve been taking regular naproxen with hardly any pain. And finally, I knew what to expect this time so wasn’t as scared.
I am cold capping and have lost probably 30% of my hair already and have a few bald patches, but will carry on. Eyebrows and lashes OK but thinner.
Hi All, day one post EC2. (Oooh get me with the tehnical terms). Could not sleep a wink with the steroids last night but dragged self out of bed this morning to take kids to school, my older son (10) is suffering a bit at the moment as he is a sensitive soul and I wanted it to seem “normal” for him. Tried to big up the fact that my neutrophils came up to 20 with the gcsf jabs from 0.1 so mum has “super duper bone marrow” to cheer him up and give him something positive. Anyway, went back to bed straight after and have just surfaced.
Ali - like you I am ECx4 and then Tax/herceptin/perjeta. I think we are both London so they have same treatment regimes - im at RMH. I asked my specialist why and he said perjeta only licensed if you have it with the tax, and if you have chemo first rather than surgery first. I had been interested in weekly paclitaxel as heard it is kinder regime, but that’s not an option if you want the perjeta funded. Hey ho. He did say if you had a bad reaction to Dox, then could switch to paclitaxel.
A friend of mine in Denmark who had similar treatment 4 years ago told me there they wear cold gloves and socks to stop neuropathy in fingers and toes whilst using Tax. My onc said it wouldn’t make a difference, they don’t have the socks and gloves here but I had googled some stuff about people making their own ice pack gloves and I think I am going to give it a go. I have a job where it would be tricky to work if I did get any of the neuropathy symptoms so anything is worth a try!
This time round I have gcsf from day 5-9. Wonder why some get 5 days, some 7 days etc? We all vary!
Right. I’m going to force myself to eat something now before taking my daily dose of steroids.
Hope you are all having a good day
Egg
Oh and my onc told me the gcsf gives you diarrhoea.(which I got with it) so now I will be swinging from constipation from the anti sickness drugs during day 1-5 to diarrhoea on days 6-10!! Joy!
Ah, maybe that’s the cause of my diarrhoea rather than the tax then?
g
I’ve had 7 days of g=csf jabs from day 3 onwards after the last 2 chemo sessions with no ill effects on the bowels! Never heard of that as a SE. Joint pain on the first and last day of jabs is as bad as its got.
Hi Scotty
I had a breast MRI before starting chemotherapy and it wasn’t as I expected. You lie face down, looking through a hole in the couch with mirrors placed such that you can see the radiographer viewing window, and with your boobs dangling into ‘buckets’! You can’t see the equipment or be even aware that you are in an enclosed space. It was comically noisy though, but had headphones on playing some easy listening which was probably the worst bit!!
Thanks Blue2. Sounds weird!!
It’s easy to be positive one year later!! I think it takes a while after treatment to get life back on track and stop continually worrying about what might happen, but eventually I worried less and less. I generally don’t worry now. I was ER+ so have to take hormone therapy tablets, but they aren’t affecting me too much so that’s ok ? I haven’t been signed off from oncology yet or the breast surgeon, so I still feel looked after rather than abandoned!
Now on to her the dreaded T part of FEC-T!! Well, I certainly didn’t miss the general feeling of dizzy hungoverness of FEC so I preferred the aches and pains of T!! Bear in mind there’s the cumulative effect of the previous doses of chemotherapy still in your body, so you are going to feel progressively more rough. I survived the aches and pains (which were worse during the days I had my injections) just taking paracetamol (although I made sure I was prescribed cocodemol just in case I needed something stronger. The other thing is that T lulls you into a false sense of security - the side effects kick in a couple of days later! But with each one, you’re closer to finishing - you’re doing great! You’ll get there! ?
Blue2 - welcome to the best forum!
Xxx
Can anyone remind me what that condition is called when your chemo arm is stiff, sore, itchy and inflamed? Is it phlebitis or something? And how do I get rid of it? I’ve tried hot water bottles. It’s gone on for ages and I’m worried it will still be here next week when I’m meant to have bloods and third chemo. Thanks!
Good morning chemo buddy, sounds like phlebitis Robin. Have you thought about askiing for a PICC line or port? I found that after my last chemo the vein I had to my 1st chemo through was very sore and inflamed. I had a portacath that was too bruised to use so had to my first intravenously so pleased I had the port. It’s the epirubicin that does it. I would ring the unit and talk to them about it don’t leave it to the next chemo. The may fit you PICC line beforehand. There is some cream that I have heard some people use Hir…something. I will try and find it for you. But definitely ring unit and suggest PICC, it will save you lots of hassle in the future.
Hope all else going reasonably well for you. I am feeling OK. Apparently according to my friends I don’t look ill!!!Not sure what to make off that feel a bit of a fraud. But I only present myself to some people when I look OK- hunker down rest of time.
love and hugs
Mooneyxxx
Morning all, hope everyone is still smiling wherever you are in the circle of cycles! Well day 2 2nd cycle for me and so far just tired. For those who have been cold capping hows it going? Nurses suggested to use again yesterday which i did as they felt i still have good coverage. However it is shredding like crazy- i have now added bathroom plug unblocker to the essentials on the online shopping and the children are fed up finding the come dine with me hair in their tea ? well more come dine with me hair clusters tbh! So am i just putting of the inevitable? Can’t decide. Mooney where in suffolk might u go - thats where i grew up love the coast line and varoius forests. Hope u havexa relaxing time. I went to holkham (Norfolk) at xmas between surgery chemo - wonderful chilled out time.
Warm hugs to all xx
Hi Scotty,
I’m only having Tax (Docetaxol) and cyclophosfamide. I’m ER+ and HER2-
I totally agree with Blueash.
On my first I did have nausea, but that was negligible after TC2.
I was fine days 2 and 3, but then Tax seems to leap out at you when you think it’s all fine.
I had the joint pains, they were like shooting pains, rather than prolonged aches.
They have been easily controlled with Paracetamol.
Horrible taste in mouth (mint imperials have helped with that)
The worst is the fatigue…I can wake up feeling fine, but after doing minimal jobs, (washing dishes, putting washing in), I feel the need to lie down.
I, too, am fortunate that I’m retired, and my hubby has been an absolute rock, taking over everything down to walking our 8 dogs.
I tend to “hunker down” too. I stay indoors, and when I do go out, `people say how well I look!
I will emerge when it’s passed - last time it started to get better by day 8.
By week 3 I was well enough to walk the dogs by myself.
Re the MRI.
My experience in Spain may have been slightly different, but yes - your boobs go into two holes, while you lie face down.
I was told it would be quite noisy, so when they gave me headphones, I thought “how kind. Music to while away the time”. Unfortunately I had no music - they were just to drown out the noise.
The worst part was that for me it took 45 minutes, which is a long time to be face down, unable to move.
But as everyone will tell you - we are all still here to tell the tale.
xxx
OK.
A simple question.
Anyone have/had a thrush like vaginal irritation after chemo?
I’m on TC.
It seems worse week 1 after chemo.
Thanks ladies.
Love and hugs to all.