That podcast sounds more interesting than the one i listened to about Bob and his allotment . No wonder i fell asleep !
I start injections again tomorrow. Last time i had stomach cramps aching jointa and a sore throat. So will see what happens this time round. I found a microwave heat pack helps and some buscapan medication which the Doctor said was ok to take.
My hair started to come out after 3rd session but ive just had my 4th session on Tuesday. I lost a bit more today in shower but have started to wear my wig more to try to get used it. Im going to order some turban style head wear too for when im in the house to see if cooler.
Wishing you all a good night rest and hope tomorrow is a good day for you all . Good luck to those having treatment tomorrow .
Vornsta, I totally know what you mean about constipation. My poor stomach doesn’t know what to do!!! Seems to settle down after a few days but not fun at the time. I get really achey after my filgastrim injection, totally wiped me out 2 days later!!
first day back in the office for me after second cycle and I’m ready for bed tonight!!
sounds like I need to get in on the podcast action. I listened to one in the past called “my dad wrote a porno”....hilarious!!!!
quick question, does anyone know if second round of chemo will make hair fall out in same way first round did? Mine started falling out a lot just after 2 weeks but has slowed down a bit now. Just wondering if it will have a bit shed again 2 weeks after second treatment??
Thank you for that tip Sara! Hope everyone is ok? I too have felt spaced out and dizzy from ec. Had 1st filgastrim last night, feel even more zombified. Also 1st bm after ondansetron- it is very constipating! Love, Vorns
Just having my 3rd weekly Paclitaxel...listened to an amazing podcast on Happy Place by Kris Hallenga. She is the founder of Coppafeel a breast cancer charity....I would highly recommend it!! 😘
Hi Tracy and everyone
Glad to hear you and everyone are managing ok with the regime.
I had my paclitaxel and carboplatin yesterday so shattered when i got back and really aching joints and strange sensation in my finger tips to the point i could text !
They have reduced my dexamethasone to 8mg once daily now to see if that helps with poor sleep pattern. I was on twice daily previously . They also increased the amount of carboplatin yesterday due to renal function results.
I listened to the pod cast last night but i think i was so tired i fell asleep and slept so much better than i have done all week.
Just feel like ive no energy at all and that spaced out feeling too every small task is wearing me out but luckily no nausea so far too but taking all the anti emetics prescribed as a preventive measure as i tend to previous suffer from nausea and migraines.
When i went for my wig fitting i couldnt believe the choice . Go for it have ones in all colours and love island is your next plan ! Im rather boring i went for much the same as my own hair but my hair is long so i went for more shoulder length incase it got warm but you can put them up in a pony tail if u wish. I did try a short Bob one which i may also get at a later date maybe when hair starts to come back for the inbetween stage.
My own hair is starting to come out quite rapidly now but not from the roots as yet .
Hi Carisma and everyone,
I had my first one on Friday and have been fairly similar with that great feeling in day one. So far no nausea 🤞 that continues and I’m also feeling that strange spaced out and tired sensation. I had a wig fitting today and am get tempted by a glam long blonde do which is complete opposite to my dark locks and would not be put if place on Live Island! Did anyone get more than one for a bit of variety?
Hope your all hanging on in there! Just thought I'd report back one week post 1st chemo cycle. Everything went very smoothly at my session and the following day I felt great, almost on a high. I think it was just relief I got started with no problems. Day 2 - 5 I was pretty much nauseated all the time and had no appetite but since Monday I have felt better as far as that is concerned. I feel a bit lightheaded and slightly spaced out, which is weird and I have absolutely no energy, even the simplest tasks can feel like a mountain to climb. Other than feeling slightly flushed and slightly tingly I have had no other issues. All in all I was expecting much worse so am quite relieved and fingers crossed I continue to feel a bit better every day.
Hi all - Sarah again from the Feb 2019 group
Sorry to hear you had a short stay in the hospital Artycart - if it is any reassurance (a bit late now I know!), i also had a bit of a racing heartbeat the first few days of every cycle, the nurses told me it was because of the steroids and not to panic too much.
I also listened to a ton of podcasts at night, especially during my T cycles, as I was kept awake by achy legs.
Best of luck with your scan and wig fitting tomorrow.
Hope everyone else is getting on OK.
One piece of advice I forgot last time, it is worth keeping a note of how you feel each day during cycle 1 as you'll find that subsequent cycles follow a similar pattern. So, in my case, I felt pretty rough from day 5 through day 9, but knew that from day 10 I'd start to feel better. And in week 3 of FEC I was pretty much back to normal. It was good to know what was going to happen when so I could plan around it.
I hope your treatment is going ok today and that it’s not too hard on you ❤️ I’m a bit further north between Dundee and Aberdeen on the lovely east coast but I was just in Edinburgh a couple of weeks ago with my friend before I got the dreaded news, having cocktails at Tiger Lily’s and shopping 😊 It has all happened so quickly that I still don’t have all the info on my exact condition. I know it’s a large lump so it needs to be reduced if possible before surgery and they told me at that time there were no signs in my lymph nodes but I’m trying not to take anything for granted having been initially told it was DCIS. I’m having a CT scan tomorrow and going to get my wig.
I have very supportive family and friends and workplace too and my two boys who have both moved out of home are very caring too ❤️
How did you get on with the podcast? Is it helping you to relax and get some sleep? I seem to be doing a lot of sleeping just now 😴 Love 💕 Tracy
Hope you are feeling ok and i understand what you mean about your job . It hard when you start some where new but im sure they will understand . You need to put all your energy into feeling better . I love Scotland . We went to Edinburgh for the xmas market and to Glasgow shopping numerous times last year .My partner supports Cowdenbeath Football Team as well as our home team Wolverhampton Wanderers !
So he goes up regularly.
I wonder if its different areas that do the regime in different orders. It seems like chemo is given to shrink tumour to make it easier for surgery. Mine is TNBC Grade 3 with 3 Nodes under Arm.
It still feels so sureal walking into the chemo unit.
Have you got a good support system ? Im lucky has got a very supportive family . My children have been so supportive i have a daughter aged 18 and a Son aged 15.
My daughter is due to start university in September so i need to hopefully be all sorted by then !
Im going to try Podcast again tonight as need to be awake to get to Chemo for 830 am . ( always feel anxious the night before although i cant wait to get it done).
Hope tomorrow is a better day for you and be kind to yourself rest when you need too.
Artycart, TNBC often has chemo first in order to try to shrink the cancer and because it’s our main weapon since we can’t have hormone treatment. If the lump is big or in nodes or close to the skin or chest wall, chemo can make it more manageable to remove later. We also get to know if chemo worked or not, if not like me then there is the option of oral chemo xx
I’m still a bit in the dark as to what will be happening with me after the chemo is done. It will probably be a mastectomy too if I get a choice! and like you I just want to get to that point too although I’m not dealing with the pain you have. I wonder why we are having the chemo in a different order? I’m up in Scotland and had recently started a new full time job before finding out I had tnbc about two and a half weeks ago. I’ve had a bit of a sofa day not feeling too great today but hopefully a bit better tomorrow. Having to have time off work is not me at all... I feel so guilty about leaving them short staffed. I hope you’ve got plenty of help with everything. Xx Tracy
Try the podcast see if it helps. I will try it again tonight. It looks like we have simular regime but the other way round. I cant wait to get the chemo done so can get surgery over !
Did they say what surgery you might need ? They think mine is a mastectomy . I just find it difficult waiting. Pain is driving me insane at moment as just so limiting
I miss doing everyday house work ( never thought id say that !!). Also missing working . There was never enough time in the day with 2 children but now clock watching .
Hope you have had a good day today
Where about in the country are you ,? Im Wolverhanpton west Midlands
Good luck for tomorrow Vasanthy . Ive got paclitaxel and carboplatin tomorrow . I found last time i ached from the injections too
Love Daisy xx
Hope it goes ok Vasnathy. I had second FEC on Thursday and been ok over the weekend until today but hoping it’ll just be the one day of aching again then I’ll pick back up again like last time.
Glad you’ve got the first one down Vornesta and that it went ok. Hope you get some rest. I’m currently enjoying the joys of not being able to think clearly whilst aching from head to toe from white blood cell boosting injection and trying to write coherent work emails. Bring on bed time!!!!
The Calm podcast sounds interesting. I will definitely have a look for that. I am getting EC by cannula into the back of my hand every three weeks then changing to PC weekly for I think three weeks and then surgery if the lump has shrunk down enough. How are you feeling today? Hope you’re managing to sleep.
Hi Tracy and vornsta
Thank you both for all your ideas. I tried the Podcast called Calm last night which tells short stories .it was via the spotify app . I will also try some more audio books too. I havent got a fixed genre for reading i like most things apart from horror / Crime. I enjoy autobiography too. ( Peter Kay being one of my favourites)
Will look into the mindfulness app too thank you Vornsta.
It seems as though we are receiving the same treatment Tracy but in the opposite way round. Glad your first EC went ok . Is that administered via drip ? . Are u having surgery after Chemo ?
Sending you best wishes
Thank you for the ideas. I’ll definitely try the app and have a look for some podcasts to listen to. Would especially help at night when I can’t get back to sleep 😴 Good luck with your treatment xx
Sorry to hear about your pain Daisy and your worrying Artycart. Have you tried mindfulness tracks? There are apps and lots of stuff on you tube. I like an app called insight timer which has loads of free meditations and visualisations. Also might be worth exploring the world of podcasts if that appeals. There are sooo many of all varieties- funny, educational, chatty. Like the radio but you choose the content.
best wishes to everyone
You’re welcome. I’ve just had my first EC treatment on Friday which went fine and I haven’t had many side effects so far. But since then I’ve been worrying constantly. Yesterday my heart felt like it was racing and today I seem to have a little bit of a cough... After the EC I will be going onto Pacitaxel and Carboplatin too. It is very difficult to keep your thoughts from running away with you but I think I might try some audio books too! What sort of books do you like? Can you recommend any you’ve read? I’m pretty open to reading almost any genre. I recently read Ant Middleton’s book The Fear Bubble which was interesting and I’m currently reading Two Brothers by Ben Elton which I’m enjoying. Tracy xx
Thank you so much for taking the time to reply. I will get some audio books to try as they may help to try to get to sleep as im struggling with that too at the moment. I end up lying there all night trying not to get anxious as its a round circle.
Hope you are doing ok with your treatment too.
My next on is on Tuesday for the pacitaxel and carboplatin . This will be number 4. Cycle 2 . Im hoping that this one will give me some relief from the pain and shrink it off my nerve.
Im a bit nervous regarding Side effects as was poorly last time but i think it may have been in relation to the fentanyl pain patches instead.
Sending you lots of love
Hi Daisy D,
Sorry to hear you’re having such a rough time. I don’t know if you are keen on them but I find playing games on my phone or iPad helps me to take my mind off things but I will usually combine tv watching with several other things like drawing, colouring books which are quite relaxing or knitting but I get that you’re not into that. Have you tried colouring books? I have some Johanna Basford ones which I can get quite engrossed in because they are quite intricate and detailed... Or how about some audio books? It might be easier to relax if you can just lie there and listen to someone else read to you. All the best with your treatment xx Tracy
Does anyone have any ideas how to keep mind occupied. Due to the pain which only subsides when im lying flat im unable to get out and im usually a busy. I used to love reading but find it difficult to concentrate at the moment
Im not a knitter or jigsaw person . Im finding this so difficult being off work and not able to be mum taxi to my children.
It just feels that im sitting her waiting for treatment for May for treatment to finish .
Sorry if i sound negative i just hoped i would be feeling better . Im on 4th treatment on Tuesday so hopefully that may help to shrink it off the nerve to give me some relief from the pain as its just so wearing .
Best wishes to you all.
Great news artycart ❤️ Always check with your units ❤️ If your wee starts to burn but no temp it’ll need antibiotics not just a bit of cranberry juice ❤️My phone was like the bat phone, I was onto them about anything that didn’t feel right even with no temp, they don’t mind and are happy that you are being vigilant while going through chemo ❤️ Rest up and keep your fluids up, it helps flush things through ❤️❤️ 💕💕✨✨Shi xx
Good to hear you're all ok. Just thought I'd let you know you're not alone with racing heart, I had my 2nd weekly Paclitaxel on Thursday and both times I've had racing heart and palpitations...Onc seemed to think it's due to steroids but told me nothing to worry about❤😘
Good luck for Monday Vornsta😘
Thank you Shi ❤️ All checked out and allowed to go home now... thank goodness says my poor Other Half!
Hi Vornsta, nice to meet you though I’m sorry it’s in these circumstances. I just had my first EC yesterday. It was fine and I had antisickness capsule half an hour before. So far haven’t needed to take any of the tablets they sent me home with. Good luck for Monday and let us know how you get on xx Artycart
Definitely echo what Shi says! Have to listen to your body and don’t push yourself too much although I’m also a firm believer in keeping as active as your mind and body will allow. Also, big learning curve for me has been to accept support from others and ask for help when you need it!!
keep in touch x
Sending ❤️Artycart, always right thing to do getting checked ❤️ Please let us know how you get on ❤️Hi vornsta, pace yourself and listen to your body, always use your rapid response number even if no temperature and something doesn’t feel right, if you antisickness meds don’t work don’t struggle, tell your team they will tweak your meds ❤️ The feb thread are amazing and 👭 getting through together, keep focused and take it one treatment at a time ❤️💕💕✨✨Shi xx
Hello everyone! I start EC on Monday at Guys. Feeling pretty scared to be honest 😳 I have er+pr+ her- had smx plus diep recon and they found cancer in 4 lymph nodes. I am trying fasting pre chemo. Good luck to all those undertaking chemo 💪🤞
Thank you both for your advice. I’m currently lying in a hospital bed getting checked out. Think it’s all ok so hopefully be able to go soon once I’ve seen the doctor. Thomaschix - Hope you’re feeling better soon xx
👍 always ring rapid response if something feels different even without temp 👍 better to check to be safe 👍 I know normally no one likes to make a fuss and just carry on regardless but chemo is different and being vigilant and being aware will help you help yourself and your teams get you through safe 😁 and you’ve everyone on here for ❤️👭❤️ Fabulous craft photos 👍 very talented ❤️ 💕💕✨✨Shi xx
Glad to hear all went well with your first treatment yesterday. I had my second FEC on Thursday and thankfully it went a lot smoother than my first but feeling pretty wiped out today.
My philosophy is anything you are unsure about then phone up. That’s what the team are there for and in my opinion it’s better to check and it be nothing than not to check and be something you should get help with. I think all the meds they give us have more of an effect than we realise so hopefully it’s just a normal side effect maybe with some residual anxiety from what’s a pretty stressful day!!
hope you have a quiet day planned. Hugs xx
I had my first chemo EC yesterday. It all went well... but last night my heart felt like it was beating faster than normal. Is this something I should be calling the helpline about?
PS - Grest artwork Sarah,
I like your figure paintings combined with the stitching. And the wire work ring is great... I used to make chain maille bracelets which is very therapeutic to do xx
Sounds like we have a lot in common Artycart 🙂
I used to make a ton of jewellery, still have all the kit and would like to get back into it one day. I mainly did chain maille, and other stuff with silver or copper wire. I got really into etching and metal stamping at one point.
(I uploaded these pics on my phone, apologies if they look huge on a computer screen!)
But nowadays mainly I paint (mostly acrylics with a lot of mixed media/collage stuff going on, and sometimes some embroidery in the mix)
I also make little books and comics
Sorry for taking this thread rather off topic!!
All the very best to those of you still to have chemo #1, and I hope that those who have already taken that plunge aren't feeling too rough from it.
I am a jeweller but I also paint and do loads of other arts and crafts. I haven’t been offered anything other than cannulas and my hospital told me that is what they use. I will ask though as I’m having longer than most chemo. What type of painting do you do? I have done lots of water colour, some acrylics and I also love drawing with any medium.
Artycart - fellow dabbler in the arts here, *waves*
One of the things I was really worried about before all this started was if my right hand wouldn't be so dextrous if I got lymphdoema, as I paint a lot of quite small, detailed things, and would be lost without it
Touch wood, so far, no problems. Make sure you do all the arm exercises they give you after surgery.
What kind of art do you do?
Oh and if you have the option of a PICC line or portacath (I had the latter) rather than cannulas for the chemo, go for it, saves them having to fight for a vein each time
Aw you’re too old for my groups so don’t worry about missing out! I’ve got once for people under 50 and one under 40 but they let me sneak in!
Paclitaxel usually goes with Carboplatin but I had Docetaxel. You’ll only need Cape if you don’t get a good response to chemo and even then sometimes they only give it if nodes are involved too. The tablets really aren’t that bad it’s just a bit unpredictable how I’m going to be each day which is frustrating. Definitely go to Maggie’s there are loads of things there plus tea and cake!
If you are on Facebook there are a couple of TNBC groups but they have people who are stage 4 so it can be hard going sometimes. But you can ask anything at all there and you’ll get plenty of replies xx
Ah that’s a shame. I will need to look for some groups in Aberdeen. I know Maggie’s Centre have BC group meetings and it’s a lovely calming place so will probably try that. Sorry to hear you’re having trouble with the chemo tablets and don’t feel too great. It’s to be expected I’ve been told. I think I will be getting those too after the two courses of chemo. First EC then Paclitaxel and... can’t remember the other drug. So far I’ve been told that they hadn’t seen anything in my nodes but at this point I’m not able to deal with all the detail of my situation. I’ve just turned 50 and found the lump while on holiday for my birthday in November. It’s quite large about 4.5cm and a mixture of DCIS and TNBC. I’ve had a bone scan and due to have a CT scan next week and those are the results I just don’t want to hear... I will be trying the cold cap tomorrow. Met a lovely lady yesterday who was using it and said it wasn’t too bad once she got past the first ten minutes and warned of icicles on your head afterwards!
Thank you for the advice about the cannulas. I will try to stick to one arm and see how I go. I’m an artist and I’d like to keep my right arm fairly pain free if at all possible. Tracy 😉
Aw you’re a fair way away, was hoping you could join my two groups in Edinburgh but it would be a trek! I’m ok, my stomach keeps objecting to my tablets and it’s worse the week I don’t take them! Can get a bit tired and down but I have a lot of other rubbish going on too so who knows which it’s down to.
Yes the first one is daunting. With FEC they have to push it into you in big syringes so you have nurses with you all the time. Are you doing cold cap and are you using a cannula or PICC? My veins were never great but having chemo has made them even worse! If you can take it I would recommend having it all in the same arm if there is any suggestion it’s in your nodes and you need a clearance. I now can only have blood taken from the bad side, nothing put in so no injections or cannulas for scans and no blood pressure. I got sore veins and decided to try to use both sides equally to give them a break, but now they’re both pretty rubbish which isn’t great when I need bloods tests every three weeks before my oral chemo! Was hopeful the chemo would wipe out the cancer in the lymph nodes but not to be.
I’m not sure what groups are up in Aberdeen. How old are you? xx
I hadn’t twigged by your name but it makes a lot of sense now! I’m a wee bit south of Aberdeen. I was down in Edinburgh with my friend just about two weeks ago...love Edinburgh. How are you now? I’m have my first chemo tomorrow and I think I’m ready but still lots of unknowns at the moment x Artycart
Artycart just reading through, where are you in Scotland? I’m in Edinburgh as you maybe can tell by my name! xx
Thank you to all you lovely ladies who have posted your experience a year on .It is so helpful and makes this difficult time much easier knowing that there is light at the end of all of this.
Im having trouble sleeping and developed a cough which doesnt help . Had a chest xray but no told dr will let me know if any problems. Currently trying a vaporiser to see if helps.
Its really weird seeing everyone post their stories a year on. I had a therapeutic mammoplasty as my first surgery then a full axillary clearance and margin shaves after that as they found DCIS surrounding my tumour. I think us Feb 19 girlies have been through every scenario between us so just ask away
You could also enquire if a therapeutic mammoplasty would be option on the op front too when the time comes, just another option you could consider, they take it out and reshape boob, just wanted to let you know ❤️💕💕✨✨Shi xx
Edinbird, I've never seen that photo of you with the cold cap on before, it's ace 😄
Hi Daisy D
I did exactly the same, got my long hair cut off a few days before starting chemo. They said it would make the cold cap work better (closer contact with the skin and follicles I guess?), and also I figured if it was going to fall out, I'd be less upset seeing short hairs fall than big clumps of long hair.
As it turned out I didn't much like the short hair cut, and so when I did give up on the cold cap and go bald, it wasn't that traumatic, as really I felt like I had already said goodbye to my hair when I had the preemptive haircut.
As for lumpectomy vs mastectomy, there are lots of factors in that decision. But one is down to the size of the lump and how big your boobies are. If it is a big lump and your boobs are not super big, they don't always have enough left to work with.... the position of the tumour matters too.
Because mine was biggish at 3cm my surgeon said she would have struggled if I had smaller boobs (I was a DD cup before the surgery, now I'm a C).
She still wasn't sure even going into surgery if she could successfully do a lumpectomy so i had to sign a thing saying if she couldn't I was happy for her to proceed to mastectomy straight away without waking me up to check and rescheduling for another time.
So the very first thing I did when I came round from the general anaesthetic was peek under my gown to see whether or not I still had a boob!!
In your case, given you don't yet know how much it will have shrunk by by the time you have finished chemo, I don't think it would be unreasonable of you to ask them to reassess after chemo is done to see if a lumpectomy could be an option.... or at least explain better why it isn't....