Fmb......hair loss for me started at day 20, so maybe you won't experience anything yet. Hopefully cold capping will prevent too much loss.
Itchy scalp Millie can be a sign that hair loss is imminent😢
Hi Carole and welcome. You seem very organized so well done you! I don't think I have anything to add, except please ask if you have any questions. I had my chemo last year, so I can at least share my experiences.
Millie...I think your friend gave you some good advice. Your immune system is very low week 2, so I would avoid public places if possible. It sounds a bit extreme I know, but the worse thing to get during chemo is an infection. It is only for a short time.
running ...... I could just about run a bath!! But I do have a few years on you.
It makes me angry that this disease is affecting so many younger ladies - too cruel! But you seem to approach it with such fortitude - I take my hat off to you all!
I am avoiding people generally and in particular days 10-14, the last thing I want is an infection. Unfortunately, my partner is full of a sore throat and cold so I haven't seen him since Chemo morning.... other than a mad neighbour, I haven't seen anyone!!
Hysterectomy for me 3 years ago means periods are not a problem for me - one silver lining!
But I am resigned to losing my hair.
Have a jog around the block for me Milliemoo!!
it is a scary place - but lots of people around you to hold your hand.
You are a week behind me, so I will drag you kicking and screaming to the finishing line...... as long as someone drags me!!
I'm really glad I made up a few batches of soup etc and stuck them in the freezer - they have been very useful.
My one bit of advice would be go with how you feel, everyone's journey is different and although we might all share symptoms and side effects etc how we react to them will be different. Also each trust seems to have a different approach to managing chemo, front end loaded steroids and anti sickness, some not, some with injections after, some not, some injections for 5 days, some for 10 etc etc
So there isnt a right way, I've just tried to go with the flow - you can't exactly fight it! But try and stay emotionally strong.
That would be my other bit of advice..... the unit where you are having your chemo ...... they will look after you. The staff in all the units seem to be unbelieveable and will take great, great care of you during the actual chemo session and also post session.
I hope this makes sense - always here for you
I am due to start my chemo on Thursday FEC-T (3x3), and to say that at times I am absolutely terrified is an understatement. I have been reading your posts over the last few weeks and feel the need to join you all on this journey as .you are all so brave and supportive.
I am spending my days prior to treatment cleaning, washing and cooking in preparation, and reading posts to try and get me as ready as I can be
Any last minute advice is very much appreciated
I think all my senses are just incredibly heightened at the mo!
I have phoned the unit and someone is going to ring me back, I will talk to them about the onging nausea as well.
thanks for the reassurance
The tingling in your hands and feet is a side effect of chemo. You may have a little bit of neuropathy, as it can effect the nerves. I certainly had this in my feet. I think it started about half way through my first cycle. So I mentioned it at my next appointment. The oncologist made a note of it, but didn't seem particularly worried. I think it lasted maybe a month and then went. You should tell your team, as if it gets worse then they could adjust your chemo. But I just wanted to assure you that it is common. Just let the oncologist know before your next cycle.
I can't remember my breast feeling any different, but I do remember it seemed to attack all my weak points. Again, let the oncologist know.
I'm on day 6 now and hopefully coming out the other end.
Yesterday was my first steroid and anti-sickness free day - I feel nauseous all day, but managed to eat and wasn't sick.
I have woken feeling nauseous again today.
There's a couple of things I wanted to run by you ladies......
The first one is just a feeling, nothing I can put my finger on, but my lumpectomy site 'feels' different. Not in a physical way that you touch it, but from the inside. I have felt more 'aware' of it for the last few days. I have checked and it's not swollen, it's not hot, nothing looks different from the outside, it just feels differnet from the inside - denser somehow. I probably sound like a mad woman!!!
Has any one else experienced this??
Also I noticed a slight tingling in the sole of my right foot on Sunday night, it has persisted but got no worse, it is only very slight, not even pins and needles but it is there.
Overnight I was woken with the same tingling in my right hand. I got back to sleep again and it's not in my hand this morning. My foot is still tingling.
I have no contact with the hospital until 48hrs before my next session when they check my bloods. Should I be telling them about this tingling in advance?
Any advice gratefully received!
thank you xx
Chemo certainly messes up your periods! After my second cycle, I had one that lasted 2 weeks, which is unheard of for me. Then I didn't have one at all!
At the end of my chemo, they put me on zoladex and letrozole, so I haven't had a period since. Every cloud........!
Hope the wig shopping went ok mine sat in bedroom on plaster head but not sure if I will wear it 👩
Periods 🙃 I'm at that funny age when I have no idea what they are meant to be doing 😕 the last one I had was when I was 1st diagnosed back in July but my body is definitely having a laugh as day 5 it decided to give me the heaviest longest ( still going) I've had in years just when you don't want one😥😣
Just as long as it hasn't affected my blood count 😱
Hi ok perfect you are all keeping nice and warm
Hi anadan, I had my last period just before chemo 1 and not had one since despite the nurse telling me it should happen, it's now nearly 3 weeks late. I'm going to ask about it again tomorrow whilst I'm at chemo 3, but I think they can stop, some ladies on our October thread have still had them.
thanks for the tips, just to confirm, do you take the clarityn with the injections or wait for the joint pain and then take the clarityn?
I'm not a wuss when it comes to pain, but always better to avoid it in the first instance!!
thanks for your help
rabbit I finished my Herceptin in August and you will be amazed at how quickly those injections come around. Chemo is the hardest part of this journey and after that everything else seems easy.
I had my diagnoses in May of last year. Surgery in June, chemo with Herceptin early August and rads in November. My chemo was cut short because my blood counts went too low to continue with it.
I remember feeling overwhelmed at the thought of going through all that I did but knowing that others have been there and come through it all was such a help xxx
Claritin hay fever tablets with take away any bone pain from the g-csf injections
Hi November ladies! I think it does depend on where you are. I haven't been given any injections, maybe some hospitals see how you cope without first (maybe to save them money, but also save you from additional SEs and drugs if you don't really need them).
Lesley, I didn't really suffer from nausea on first cycle I also had meds for 4 days and didn't get any second wave of nausea so you should be ok. I did have some donperidone that they said I could take if I did feel sick, but I didn't need them.
Hopefully I'll be having my 3rd fec on Tuesday 🤞🏻bloods will be ok.
The weather is really miserable here now ☹️ A good day to be snuggled up on the sofa!
Enjoy your Sunday afternoon ladies!
Hello November team, I am just checking in to see how you're all doing?
I am on day 4 post first cycle of the 8 cycle accelerated EC-T regime. Not too dreadful so far (lots of wood touching going on as I write that and I know it probably will get a lot harder but I am trying not to look beyond the immediate). Some nausea, but not unbearable. I have exercised every day, although not felt like getting my kit on and no where near my usual pace/range, I have been so much better afterwards. Getting out for short stretches has also helped even if I felt like hibernating. Sleep has been a bit up and down and it is in the small wee hours that the racing thoughts and anxieties creep in, but I am trying to breathe deeply and not panic when those moments strike. I am cooking and doing basic stuff around the house and also managing to work from home, although I crash out by 9.30 p.m and need to go to bed. Mouth made much more comfortable by Biotene and skin which has flared up/dried out horribly already is soothed by bio oil and heal cream. We'll see what happens, but it is just great to know there is a crew of chemo buddies with invaluable wisdom and support from those who have gone before me. Thank you everyone. xx
I haven't been given injections but a course of antibiotics for 7 days l think my hospital only give the injection if your white cell is low
Or maybe I didn't get them this time as count was ok and if they are painful anyway it would have added to my FM
Will ask next visit getting a rather long list for oncologist😯
Gcsf injections....... these seem to vary depending on which hospital you are at. Like you Lesley, I had 5, but some get more and some don't seem to get them at all. (Unfortunately, I think its down to cost) . They are used to boast your white blood cells, which in turn are there to fight infection. The injections are very effective. I managed to get through chemo without picking up an infection. However, as always, there are side effects, and this seems to be joint pain. Ibroprofen worked well for me. The pain is very short lived. As soon as I stopped the injections, the pain went away the next day. It's just another thing to deal with unfortunately.
I am day 4 now, so last day of sickness and steroid meds ... not sure how I feel about that.
I think the fatigue may be passing as I couldn't get off to sleep that well last night, so I am taking that as a definite positive.
Other than the first evening, I havent had much sickenss or nausea ..... so now I am worrying, is there a second wave about to hit me???
I am worried about these injections, firstly about administering them. It seems ridiculous to get a DN to come around to do them so I agreed to do it and I am sure once I do one I will be fine. But I am also worried about the side effects. Bad joint pain doesn't sound appealing at all!! I am having 5 days worth, is this what everyone else has??
Anyway, I am going to try and get out for a walk and do some washing etc today and try and eat a proper meal rather than the comfort food I have been eating so far.
love and hugs to everyone
Thanks for all the advice my mouth has been a bit sore and was using the Corsodl mouthwash but finding it makes my mouth sting. even when diluted so will ask about the other
It would be great if chemo would cure FM but as its not an inflammatory condition but a neuropathic one I don't think lm that lucky and as I'm having FECT apparently the T bit can make it worst 😥 so as this first one was bad enough going to need something else to get me through
On the upside if it's going to help my IBS that would be great🐶
Wow!!! I'm in an Epsom salt bath just right now. It was day 9 and it was going so well - the fog had cleared and life seemed back to normal. Yay!!!! Or so I thought ...
About 10.30pm my lower back started to ache and then wham!!!! The pain just hit me, a bit like a contraction pain in waves, there was no relief from it. I tried going to bed but this pain wouldn't be ignored. I ended up taking an ibuprofen and phoning the hospital. I spoke to a very nice doctor who explained that it was probably due to the injections - I have had 8 & have 2 left!! He said I could take ibuprofen & codeine 3 times a day, drink plenty of water & a bath may help. So here I am ...
Guess I'll be having a lie in tomorrow 🤞💫☄
Thank you I will have a look at the course
I'm already on amitriptyline, pregrabelin and codine maximum dose so will ask oncologist if the is something I can take for the breakthrough pain
At least pain has calmed down now but just can't face having to go through another week like the last😞 and I don't feel safe to drive yet as concentration is shot which as hubby doesn't drive feel I'm just stuck in doors🏠
Will try to finish knitting my hat for when my hair goes as not sure if I want to wear the wig 👩
Hope everyone is doing ok at least I seem to be getting my taste back 🍰🍫🍬🍩 so chocolate here I come😊
I've found this forum a lifeline, we're on this journey together. The whole chemo thing seems a bit of a roller coaster ride 🎢 and although we may be having different symptoms there seems to be someone who can help or make you laugh 😄
It's good to connect to ladies who are going through the same tough times and understand ☄🤗
No worries Sue, I'm happy to try and provide any help I can to help ease others SEs through this assault on our bodies. The last thing we want is to hear people suffering if we can offer some tips to help. Our thread has quite a lot of ladies and we're a very chatty sharing bunch so even if I haven't experienced some of the SEs I've read and supported them through theirs! Hope you have a great day! 😊
Afternoon everyone - hope you're managing to enjoy the weekend. Weather doesn't inspire getting out for a walk. It's day 9 for me and from yesterday it seems as if I have come out of a fog 😀 🎉
Lesley and AnnaKarenina, hope you're both doing ok and have been drinking plenty.
Anadan, our hospital has a MacMillan unit attached for help and advice for wigs, scarves etc, maybe see if your local MacMillan 's can help you or advise you where to go.
Otter, I'm glad you're feeling as if you've turned the corner and you have more time for your application. Hope you have some success with your oncologist as there is enough to put up with.
Welcome TrishJune, I have a teaspoon of manuka honey daily as well as mouthwash (without alcohol) and so far so good 🖒☄🤗
Just wanted to say hi and see how you all are?
Thank you to Meesh and Chaffinch for popping in. It is so helpful to the new Ladies. Sometimes they come up with issues that I didn't encounter myself, so I don't always have the appropriate advice, so thanks.
Hi Otter, sorry to hear your FM is causing issues, hopefully the lady from our thread will be along to help soon. Have you tried bathing with Epsom salts as I know others have recommended that for aches caused by chemo? Sending you 🦄🦄✨✨🦄🌟💫💫🌟⭐️✨🦄 🤗🤗🤗🤗
Hi Trishjune, sorry to see you here but the forum is brilliant for support, advice and laughs along the way. I haven't suffered with a sore mouth, but I know some other ladies have and have advised to use a soft kids toothbrush with some diflam mouthwash which they have got from doctors or chemo team. It might be worth calling your emergency number as they maybe able to provide you with something. Others have recommended gargling with salt water or with water mixed with bicarbonate of soda. That may help you until you can get something else sorted.
ive just been following my normal cleaning routine of electric toothbrush (but on slow setting), airflosser with corsodyl mouthwash (which some others also recommend for sore mouth) and corsodyl mouth rinse after.
Hope that helps and hope you get it sorted soon. ✨💫💫⭐️✨🌟🦄🦄🦄✨⭐️⭐️
I'm new and any tips would be gratefully received. Had my first chemo 10 days ago and doing OKish but if any one has tips for mouth ulcers I's be very grateful.
Thanks I'm starting to finally turn the corner on this 1st cycle 🤗
I think I will have to talk to the oncologist about how they are going to manage the rest as I don't feel just cause the unit doesn't understand FM I have to basically suffer as otherwise it will be hard to put myself through this as the Onotype was borderline and I'm still finding it hard to accept that I really need Chemo
I know giving up isn't really an option but end of February seems a long way off if I'm going to be so unwell and in unbearable pain all the time
Work have at least given me a week extra to complete my job application as not had two brain cells to rub together
Hope all you ladies are having a better start 🤗🙃
Hi November ladies, good to hear you're all coping ok.
Anadan, you may want to think about the wig sooner rather than later (even if you don't end up wearing it). If you can get an appointment whilst you still have hair they have more chance of matching it to your natural hair.
Otter, hope you're doing ok, I do pop on here every few days to check how you're doing! 😊😊😊