Just another quick mention about thermometers. Had to send hubby out to get an in ear one today as appartly I was on the verge of hyperthermia if we had gone with what our mouth thermometer had said, the nurse was very understanding and did say it's a good idea to get an in ear one so off he trotted to boots and spent a lot of blooming money !!! Bah !! It is expensive isn't it !
Hi, have been completely whacked out last few days but starting to feel a bit more with it today , slept every such a lot over the last few days , today went out in sandy (wig) and kept fiddling with it, have a feeling hats may b more of my thing , hope all of you are also ok?
Ahh I have bought a cheap one also. Perhaps I should try it out to see if it works. Have you got a start date for your chemo yet James’s?
Good grief that is a lot of money for a thermometer. I hope it bathes your forehead if you have a temperature!
Just starting to get a few things together for the start of the chemo. Thank you for the tip about Manuka honey, that will go on the list. I have heard that pineapple is good to eat during chemo. Does anyone know if that can be tinned (in juice) or is it better fresh.
Whats the story with tha Manuka honey? What does it help with? Is there a best brand and how should I take it?
Wow Kirsty, thats amazing well done you, oncologist told me exercise really helps with the side effects so I'm hoping to carry on if my chemo ever gets going!!
i got the excercise sheet so I’ve started today. I’m trying to balance rest and activity, I think because of what I do I have a mortal fear of incapacity. Reading all these stories has really made me reconsider the cold cap and if I’m braver than I think and up for the shave!!
All you ladies are awesome...so resilient it blows my mind. Who’d have thought a forum could give so much strength.
I got my CT results yesterday and there is a shadow on my liver! They think it’s a benign thing called a hemaginoma but will discuss if they want to investigate it any further at the MDT meeting. I briefly felt the bottom drop out my world but then thought well the rest of the CT was clear and these growths are common between 30 and 50 year old woman and they can be fed by eastrogen which has definitely not be my friend it seems. So just trying to stay positive till I see the onco on Wednesday!!!
This bloody disease...xx
I've been ating manuka honey every day since started as well, which was a tip from the forums. When I shaved my head (well hubby did it lol) I went for a number 4 on the clippers, so like a really short pixie hair cut, so when it was felling out was just wee short bits, as I was also told going right to the skin with a number 1 may irritate the scalp. The folicles really hurt for a few days after cycle 2 treatment, when they are dying off x
Hello everyone, I am from the November starters thread and on cycle 4 now of a planned 8 cycle accelerated EC-T treatment schedule. I wanted to wish you all the very best and share my experience too in the hope it may be helpful for some of you.
I should start by saying I am a complete wuss and worrier too, so the apprehension some of you are feeling is familiar and, I think, probably normal too. I felt so much better once treatment had started. I hope it will be the same for you. I was dreading it and had visions of being completely incapacitated, but like KirstyH, I have managed. I exercise most days, even though I am far from an athlete and sometimes it is tougher than others, but then that was true before chemo! I work through the cycle too for the most part, although I know I am incredibly lucky to have a job that allows me to work at home when I need to do so.
I had a portacath fitted after discovering that my veins are a bit rubbish, although it has yet to be used. I am not great with needles either, but I have managed for the most part to survive cannulation and the assorted needle contact until this point. I always tell whichever poor person has to come at me with a needle that I am anxious and have been met with nothing but kindness and understanding. Don't be afraid to share your fears, whatever they may be. It is okay not to be okay.
In terms of side effects, some cycles have been tougher than others, but I have learned two things along the way. The first is that everyone is so different and there is always someone who can help (on here and in the clinical team) with whatever happens. I had trouble with nausea early on and a combination of top tips from wise women here and some tweaking of medication by the oncologists made all the difference. It recurred on my third cycle, so when I go back next week before cycle 4, I will be sure to mention it. Don't be alone with anything. The second is that these threads are wonderful. I can't tell you how much the community of people going through this pesky process and walking alongside me has helped - I've laughed, nodded in recognition, got great advice and felt such warmth every time I log on. I can see the sense of camaraderie is already building here - enjoy it and draw strength from it.
Finally, the all important hair question! I didn't cold cap (I am a wuss remember) and my hair was cut short after cycle 1. By cycle 2, it was pretty much gone, so I went for the buzz (not shaved as my hairdresser said it would be kinder on the scalp). She said it would all vanish soon. It never did! I have a covering of velvet hair that seems to be growing not disappearing. I have a wig (Petunia the Pretend Hair) and some great hats. It was immensely and unexpectedly emotional when it went, but I did adapt quickly and now I barely notice when I look in the mirror. So far, eyelashes and eyebrows are hanging on, but when I move to Paclitaxel, that may change apparently. I am about to do a Look Good, Feel Better course in a few weeks, so I hope they will teach me how to hide the 'no brows-no lashes' look if need be.
If you have any questions, do ask but in the meantime, I wish you all the very best for the coming weeks. You can do this, I promise. xx
The arm exercises do get easier quickly - like you Jamesy I was exactly the same thinking thats so easy then the first shot after surgery at them is an Ouch moment.
Rosie I'm OK thanks - just very taken aback by the change of plan but hey it could be a good thing 🙂 Hope you hea; quickly after the snb.
Kirsty I absolutely love you...I’m sitting here and bit sore and pitiful after my sentinal node biopsy this afternoon and not really loving the patient feeling but as soon as I read your post I was so uplifted. I too love my exercise and being able to has really helped me deal with all this craziness lately, to hear someone say they’ve kept it up is music too my ears...thank you for that little ray of hope.
Shocked I do hope you’re ok, a change in plan woul throw me right out too.
ive got anathestic brain did you start chemo this week Mrs MG? How are you doing? Xx
Thank you so much to mrsMG and to KirstyH for the advice and lovely positive posts. The nurse at my pre chemo assessment was very reassuring also and said while it might be a rocky road, they would be there to support us every step of the way. She also said it was a very lively and friendly unit with lots of interaction between the patients as well as the staff.
The pink wee sounds interesting and what with my hubby’s super orange wee (also due to medication) our loo is going to look like a tequila 🌅
Well the tumor was stil HER2 negative so off to Calafornia it goes for the Oncotype DX- just had a call from the hospital and I've got to go back in tomorrow - something to do with clinical trials. I now have an appointment on the 17th which is when they expect the results to be back for the test. So it looks like it'll be a few weeks now before they decide if chemo will be effective now - wish I'd known this before Christmas when I was told that I definitely needed chemo but I know they are doing there absolute best to provide the correct treatment.
Hi ladies, I am from the December thread, so thought id pop in to say hello, as it helped us december starters when others from earlier threads dropped in! I have had 2 cycles of FEC so far and 3rd next Thursday, then onto Tax with herceptin & Perjeta for the next 3 as I am her2+ as well. I am 34 and this has all been such a massive shock, I was terrified of becoming so ill on chemo and scared I wouldnt be able to work or exercise as I do loads of training/running, so this was a big worry for me. But to give you some positives, I have not really had any side effects from FEC so far, and have managed to be at work full time, only missing treatment day each time so far, I have also been out running quite a lot, just taking my time. I know every one is very different in how they respond, so I know I have been very lucky, but it just shows it is not always as bad as expected! I expected the worst and therefore was pleasantly surprised when I felt fine. Just listen to your bodies and you will know when you need to rest or if you are ok to do things. I also shaved my head on day 18 of round 1 and it felt much better getting rid of it myself, before it started massively falling out.
I still have a long way to go, with surgey next then rads, then hormone tablets but the time has passed surprisingly fast as well. Good luck to you all on starting, stay strong xx
Hi Mrs MG - your first session out of the way (you are well and truly on the road to beating this now)
I am still a bit taken aback by the complete turnarond in yesterdays unexpected meeting with the surgeon - have been overanalysing everything as usual. I'm 43 so was told the same as you last time I saw her in that they like to throw everything at making sure they have got rid at our age especially with one of the lymph nodes being affected. I guess I should be very graeful that the team are making sure the treatment is right for me it did fell a bit like a backwards step but thats not necessarily a bad thing if they get the treatment right.
So this morning I shall wait by the phone for results to see what the next step is - guess I'm posting in the wrong place now as well.
Attended pre-chemo assessment today and due to have portacath inserted next Monday and then first chemo the following Friday. Having six cycles of fecT together with Zometa (bone strengthening stuff), I’m not really quite sure how to start to prepare for this.
I am now completely confused as instead of meeting with oncology today as expected my surgeon saw me again - it seems things have changed since I saw the surgeon before Christmas when i was told I would be having Chemo as 1 lymph node was positive - now following a meeting with oncology they want to check everything again and for some reason my Her2 result hasn't come back following my surgery - wasn't even aware it could be different from the biopsy results which were Her2 negative.
So now I have to wait for a phone call to let me know my Her2 result tomorrow then if its negative they want to consider Oncotype DX which will take 3 weeks then they will decide whether chemo is right or not for me
I'm not quite sure what to think at the moment it was a completely different meeting to what I was expecting
Hair starts to fall out near the end of the first cycle and beginning of second. It can shed pretty quickly, so be prepared as it can make quite a mess. It is upsetting when it happens, there is no getting round that, but you sort of get used to it.
Thanks Mrs MG I have my oncology meeting tomorrow evening so will know more about whats coming. Was thinking of getting something totally outrageous wig wise - well its something I hope will be once in a lifetime!!
The catheters all scare the life out of me II'm such a wimp) so well done you today.
I'm starting chemo on the 10th January and my chemo discussion is on Friday. I'm having T and Carboplatin as I have Muscular Dystrophy and I hope to meet others on the same or similar combination.
I was diagnosed 8 September and have had 2 WLE, one infection and SND. I have been offered chemo, (1.5% benefit) then full clearance (which I don't think I will have at this point) RADS and Tamoxifen for 10 years.
In preparation I am having my long dreadlocks cut off on Saturday and collect a short wig the day before. I'm telling everyone I've just had my hair cut off as I'm keeping things low key and private.
It will be interesting to see how I get on.... I had terrible morning sickness and usually have side effects from all medicines.
Good Luck to all and I'm hoping I can pair up with someone to compare side effects on a daily basis X