Sorry I’ve been a bit quiet. The day after paclitaxel I felt almost normal and was feeling quite smug that it was going to be easier than EC, but over the weekend I felt awful with some quite severe pain. Aching and pain mostly in pelvis, hips, back, legs, but also some worse pains in and around pelvis/abdomen that often came in spasms - not sure what this was, ligaments or something perhaps?? Anyway, I was feeling very down about it, especially as I had virtually no sleep Saturday or Sunday nights because of it. Called hospital on Monday and they said double up on paracetamol and ibuprofen and try hot water bottles etc.
The slightly better news is that it is subsiding a bit now and feels more manageable, so hopefully it won’t last the whole cycle (2 weeks for me). The other good news (touch wood!) is that the nausea has been much better than on EC and on day 7 today I can still taste most foods whoop whoop! I also have very mild numbness in fingertips, but I’m not finding it a problem at all.
Overall I’ve found it different, but not better or worse than EC so far.
I hope I haven’t worried anyone; everyone will have different side effects.
I think starting a new drug is always hard as with every new side effect you don’t know how long it will last or if it will get worse and that has a mental effect too.
I hope you all find it OK x
Thanks for the advice today re the funeral everyone , I will take your advice and contact my friend and I wont go , I know she will understand .
Glad today wasnt too bad Chris , all set for a long day tomorrow alarm set for steroids tonight and first thing in the morning , I'm carbo and pacliataxel so I'm thinking it may take a while longer with pre meds etc , saw a different onc today as mine on leave , bloods ok so all go for tomorrow , she didnt say much about my veins just it will go with time .
My chemo fog brain has already forgotten who is joining me tomorrow lol but hope everyones day goes ok sleep well everyone
Love KC xxxx
Hi Viv it went ok today dont feel so bad and not as sickly. Hope I'm not jumping the gun. The oncologist had reduced the dose by 25% so hopefully that might reduce side effects a little. The actual treatment was only and hour it took longer because I had to wait for my bloods coming back and time spent with cold cap on. Just going to have to see what other side effects are, the nurse did say bone pain was one of them, not sure of the rest.😣
KC hope it goes well for you tomorrow ❤
How did it go today Chris?
I'm getting my Herceptin / Perjeta tomorrow and have to stay in for 6 hours to check for any reaction. Dozey Doce on Thursday. Starting mega steroids tomorrow too. I am a little scared.
Good luck to you too KC...💕
Guess we will have doce on the same day Helen?
Ps. Hope your daughter is not heading back to China. Saw they are advising against all travel..
Good luck tomorrow KC 🤞
I am getting my bloods done tomorrow... I feel pretty well at the moment so not looking forward to being zonked... But in a way want to get it over with so I know the score. Some people I meet seem to be OK on T... So let's make a wish to the cancer fairy that we will be lucky 🍀🍀
So sorry to hear about your friend. Please don,t delay your chemo, I'm sure your friend would understand. And like the girls said it's theater days that your friend will need support. Thi kgs of you at this sad time, this bloody disease always take the good ones.
Sending love and hugs 😘
Yes I am so bad and taking my kids to the doctors for non critical things 🙈. I think I felt bad as I felt the school nurse was almost telling me off for not having waited at hospital the day before😂.
On a plus note I have parents evening for Jake today and used my 'Cancer card' as I call it and got some of the teachers to meets me beforehand so limit exposure to loads of people...
Sorry to hear about your friend 😔. I understand how you feel but agree with Helen. You will be there to support her in the long term which is more important and you can say goodbye in your own way. I think everyone, inc your bridesmaid, would understand if you didn't go. I wouldn't delay your chemo and I wouldn't try and go after!
It is reassuring for other parents that we make mistakes from time to time!!!
You did try... Its not your fault the NHS is on its knees!!
I have only just taken my daughter to the GP for her large bunion on her small toe which she will probably need surgery on... She's been mentioning it for a year or two 😬
I think you should contact your bridesmaid... I am sure she would understand. In fact she would hate the idea of you delaying chemo.... And also arrange to do something with her when you are in a better bit of your cycle. Funerals are a bit of a performance thing... And the real support comes in the months and years after a bereavement.
It is hard as normally you would be there for her like a shot ❤️❤️
Yes I get PICC tomorrow and chemo same day think it's going to be a long day as PICC at 10.30 and chemo at 1pm plus its carbo and pacliataxel so sis is coming with me as hubby gets cabin fever , bloods and onc today
I also have a bit of a dilemma , a good friend passed away last week my bridesmaids husband and the funeral is my chemo day , I'm not in a great place and very emotional at the moment plus he died of CA so it's very close to home and I'm really torn , I dont know how I will feel if I ask to have chemo really early in the day and go , its meeting all our friends and them knowing about me , I'm just a bundle of guilt I feel I should go but also I know I will be a total mess , thats even if I can fit it in or do you think it's ok for just hubby to go ?? I dont want to delay chemo
Xxx KC xxx
Helen your conference sounds interesting, hopefully will get something useful from it...
Hope puking dog has recovered
Good luck for tomorrow Chris, hope you get some sleep on your double steroids, not looking forward to those....
I got a phone call from Jake's school today saying his wrist was sore so took him back to A & E to have xray. Bottom of his radius fractured. I win bad parent of the week award 🤣🙈.
How is everyone else doing?
Debs are your ribs sore from your shower fall? Are your feet still swollen?
KC, are you getting Picc and Chemo on same day??
Had to laugh at the chemo on the bike image...I'm sure exercise helos in general but not sure I would be happy about that extreme.
Lisa and Flou, where are you guys with treatment?
I've had a vomiting dog... Six times on Sat night... She seems a bit better now though xx
Some people/ things have no respect for our immune systems!!
The conference is great so far... But lots to take in. Its clear that the genetics and genomics of breast cancer are much more complicated than they originally thought. Some great strides being made in drug treatments for metastatic BC, as well as Her + and triple negative. Also trying to find bio markers in the blood... Do we could have lood tests to monitor recurrence like prostate. There seems to be more problems with ER+, esp as some people become resistant to anti hormone treatments.
Some great talks on exercise and diet/ weight loss... There are such robust findings I am surprised they don't promote it more as an actual treatment (rather than advice). They showed one patient receiving chemo on an exercise bike 😂... As one advocate said... If you told me to do that when I was having chemo I would have told you to go to hell!!!
Still little research there on lobular... But we are meeting with researchers and clinicians, and there are a few who are really interested in driving research forwards xxx
Viv, hope everyone in your house is feeling better today.
Still got the snotty nose and piggy trotters, and ribs still sore. But hey ho, I’m a day closer to getting rid of all these side effects.
Good luck tomorrow Chris, and every one else this week. Cycle 2 of T for me on Thursday, at least I know what kind of side effects to expect lol xx
Trying to get on top of the house work before the dreaded T tomorrow.
I't's really freaking me out about getting the T as i'm having to take 8 steroid tablets today, which I did'nt have to with the FEC so I keep thinking in my mind is this going to be worse by having to take them the day before and I'm just hoping they can find another vein. Maybe I'm just being paranoid
Viv you really have had your hands full with your hubby and son, hope it gets better, not what you want
KC hope you arms getting a little bit better. I did have some discomfort in my arm more like it was bruised like someone had hit me so can't imaging what it must feel like
Helen I'm lobular so it would really interesting if you can share anything from your meeting with the lobular ladies
God I can't remember the last time I had a drink think I have forgotten what it tastes like lol.
Lisa hope all going well with you, well as much as it can be
I am sleeping for England at the moment can't remember a time when I slept so well, I don't know if it's being off work and getting up what time I want or what, but certainly not complaining that I am getting a full nights sleep, well that is apart from having to get up for the loo with all the drinks I'm having
Well don't know when I will be on next, hopefully the T is not going to be so bad and I can actually function ok.
Take care everyone sending hugs
Hi Helen its Chris Tuesday , I should have been but its wednesday for PICC so they swapped my chemo for that day so its bloods and Onc Tuesday PICC and chemo wednesday , think they might keep my day to Wednesdays now as I'm 3 weekly carboplatin but weekly pacliataxel 😕
💕 KC xxx
KC, I 'm too scared to drink incase it makes me feel rubbish.
Also scared of chemo on Wednesday as both my arms are sore and worried it's going to be painful this time...
Hope you are doing better Debs...😊.
And hope you are doing better Flou...
I am in Wednesday for Herceptin and Pertu### and Thursday for docetaxel...I think I am dreading the double dose of steroids for 3 days and potential lack of sleep.
I had a fab day today. Hubby has been puking all night and day so really not wanting his sick bug. I have locked him in spare room and he has separate toilet...then my son fell on his wrist at football this morning so had to take him to flippin A & E to check for broken wrist... we waited 1 1/2 hours in treatment room, he then declared that it wasn't that sore anymore so I decided to just leave and go home!! Bad parent but it's all good now 😂
Glad your meeting was good Helen, def a good distraction from T!!
Jake has parents evening on Tuesday, want to go but scared of all those bugs. Shall I go?
Anyway night night warriors
Good luck to everyone having their T this week. Is it KC and Chris first? Then Viv?,
How are you feeling now Flou?
Whereabouts are you Lisa?
Really enjoyed meeting my lobular women at the patient advocate meeting. Talks start tomorrow so am hoping to learn lots. I am absolutely knackered... I didn't realise how much my brain has been pickled by chemo!!
But a fantastic distraction from the dreaded T!!
I understand clots are a risk on T so Debs you do right to get checked out SHI is right we should report everything I know my Onc writes it all down and,Helen you are right peripheral neuropathy can be a big issue and mustn't be ignored , I have 2 friends were it has become permanent, and I really dont want that !!!,
I've had a couple of really tired days I slept most of yesterday , had some wine the night before and I dont think it agreed with me , I dont drink much anywY but will be staying off it now !!!, arms are still sore but will discuss with Onc on Tuesday .
Hope everyone is doing OK xx KC xxx
From talking to people on the chemo ward...they get taken off T if they get neuropathy for too long, especially in the hands..so it is taken seriously. But I assume swelling isn't the same as lack of feeling?
Trying to think how you can position yourself...I had my ribs broken a few years ago and had to sleep propped up. You could still put a pillow under your feet to allow a bit of drainage!, My main symptom is rib pain on FEC..probably my veins...but it only seems to be on the left,so it's manageable.
Hope everyone else is OK?
Debnits that’s good you’ve been getting onto your team so they can keep you safe ❤️ Just mention the feet, I know others have had a bit of a time on the t and their feet and fingers have took a hammering from it, your units should be watching closely to ensure no perm damage being caused by the t. ❤️❤️😘 💕💕✨✨shi xx
Helen elevated feet sound great, being waited on sounds even better lol but I can’t raise my feet because of my ribs, so I’m stuck just sitting with them up for a short time before I have to move again.
I’m on day 18, I’ve been back to triage twice since day 1, once with tonsillitis, thrush and mouth ulcers, so they’re aware of my cold. 2nd was after my shower event, where they checked my bloods.
Havent mentioned my feet, as it was on the list of docetaxel side effects that they gave me, but will give them a ring tomorrow just to have a note on my notes .
Next chemo is on Thursday.
Debnits have you checked with your unit about your cold? What day of your cycle are you on? Please keep safe and tell them about your feet too, just to be safe, sorry to be a mother hen, but chemo is not like normal, you have to check everything, it’s not being neurotic it’s being sensible and vigilant and your teams will thank you for it. ❤️💕💕✨✨shi xx
Pig trotters for feet are not sounding nice. I suppose you will have to lie with your legs elevated and be waited on by your family...silver linings I suppose. Sounds like T has not treated you well...hoping round 2 is better.🤗
Going to my conference tomorrow for the initial part where they show us how to understand research findings. I hope it won't be too hard for me as I am researcher...though I feel like my brain is full of cotton wool at the moment!
I am also meeting my lobular group there which will be really interesting and exciting..I have only had contact with them online. I am really hoping we can make some changes to screening and self examination..too many women with lobular get diagnosed late with large tumours and have mastectomies (which means more surgeries and more cost).
On another note...i am now pleased that my daughter is in the Phillipines near the volcano rather than in China near coronovirus. Although she will be flying back there in a few weeks...you couldn't make it up really 😂
cant believe I didn’t wake till 9 am this morning. Can’t remember the last time that happened lol
Any hoo still have a cold, this one has lasted since day 1 of this cycle. Still have very sore ribs and now can tick another side effect off my chemo bingo card.
swollen feet, they’re. It sore just uncomfortable but look like little piggy trotters. Fingers seem ok at the moment.
Hope everyone has a good day, we’re a step nearer to finishing this chemo lark lol xx
Debs, that is brilliant news about the shrinkage! I was so pleased to hear some more good news, it feels like light at the end of the tunnel xx
Viv and Debs hope you feel better soon and I hope your veins get sorted too KC x
Re. hugs etc., my mum is refusing to hug me, but my good friends still do. They know to stay away if they have a cold or virus. The thing I am less keen on is if I go to work for a meeting and there is much hand-shaking. The antibac gel comes out as soon as they’ve gone...
Hello Igemr, congrats on finishing your chemo!
First paclitaxel all went ok yesterday. I had IV anti-nausea, IV antihistamine and the steroids and paclitaxel through a drip for 3 hours. The antihistamine made me drowsy and I dropped off during the treatment.
Side effects so far have been almost total insomnia (steroids, but I don’t have to take any more so fingers crossed it’s one night only), a bit of tiredness, sore mouth and loose bowels (after the EC constipation I’m not too upset about this yet!). Overall I’ve felt better than after the ECs, but I’ll report back any new side effects if and when they arise.
Hi all you amazing ladies!!!
I’m one of the secret people who just read things but never actually post!!!
I finished my chemo last week 😊 and have two unworn hats which I’d really like to give someone. Please PM me and I’m happy to post to you.
Thank you for all being so brave and sharing your experiences. You made me feel less alone and this group has been a source of comfort and strength.
So sorry that your all having your problems with one thing or another.
I have actually felt the best I have felt this week since starting the treatment, but hey ho not after next Tuesday as will be getting my first T, so not looking forward to that. I think the idea of some new poison being put in to my body sends me in to mind overdrive. Out of you all that have had the T how did you find it?
Love that picture of the dog Helen.
I have anti biactol gel by the front door, in the kitchen and the down stairs loo, I know a bit overboard, but can't be to careful. All of my family have had the flu vac and take their shoes of when then come in. My hubby even paid for our dog walker to have the flu vac
Have a good day everyone
going by your picture i believe you could have " cording " in your arm.
does it feel real tight like guitar/piano wires and you can actually see and feel it??
i had this from my inside wrist to top of my arm.
Had to go for physio, lots of stretching n massaging exercises but it worked.
i did google it too.
get it looked at the sooner the better. Good luck. Mini mad xx 💖💖
Got called in for another scan, was worried when they wouldn’t tell me a thing last week except results go back to whoever ordered it x.
Anyway just got bsck
xx we have definite shrinkage of breast tumour and 5 lymph nodes less inflamed xx
KC, my arm is still sore from 2 weeks ago. My veins in both arms are suffering, feel really tender to touch and ache when I stretch them out. Onc told me it was the dreaded red stuff and nothing to do a out it...😔. Causes schlerosis of the veins in some people, like us I guess.
Debs, so sorry you still have a cold, that is rubbish. My whole house has had one so hard to avoid...Hope you feel better for round 2.
I am terrible for hugging people but make sure they have no bugs 1st. Usually people say 'I have no bugs' and then grab for a hug!!! I haven't yet managed to say 'don't touch me', ha ha. My onc had a cough and kept coughing on Tuesday night and then went to shake .y hand. I got the anti viral gel out as soon as I got out...😂.
I make everyone gel before they come into my house though, or wash their hands...
Will try probiotic stuff today and hold back on the chocolate...
I was telling my onc how much I hate steroids and he said 'no steroids, no treatment', 😂. He is actually a lovely man but blunt with a very warped sense of humour. Apparently 1% of people have reaction with docetaxol with steroids and nearly 20% have reaction with no steroids...
Helen, when is your conference?
Ouch KC...Your poor arm. Are they actually managing to get a needle in? I think this is happening inside my body where the PICC deposits it. If I run for the bus i get a short period of throbbing pain in my torso which is probably my blood pushing on the vein walls.
Hot water bottles and water to hydrate? I don't think there is anything that we can do to prevent the evil effects of the E. I am hoping the docetaxol will be better in this respect.
Sorry to hear this round has been bad Debs...hopefully you won't get a virus next time...you need to spray people with bleach before they enter your house!
How does everyone cope with people trying to kiss, hug, shake your hand? I realise it is really rude to repel people when they go in for a hug so I have been trying to prewarn people. It's crazy as people immediately want to hug you more but it's the worst thing they could do, I think I will have to be stricter...as it is no joke ending up with a virus for weeks.
Hi is anyone else having problems with really painful veins? they are tight like bits of string and not getting any better, its both arms but other arm its veins on top of arm and if so any remedies?
PICC next week
💕 KC xx
still can’t shift this cold and ribs hurt like billy-o xx
bet I feel better by Wednesday ready to do it all again on Thursday lol
sorry you picked up a virus x how you feel better soon xx
love the pic Helen x
hope everyone has a good day xx
My poor old dog! She is at the stage where she gets sad when I am not at home...so me being ill has been a bonus for her! Her face is a mixture of abandonment plus wig wearing!
Viv..i tend to cheat and use Optibac for antibiotics...I did so after my operation. I am sure other brands are available...but it really works. If not easy to get hold of (amazon do it for 5.99 if no shops nearby) then lots of variety of fruits and vegetables, lots of fibre and reduce sugar. I also sometimes have vegan kombucha or keffir ...but those yoghurt drinks are ok too xx
Good luck today Lisa...I am sure you will be fine....my ONC seemed to think that people finding the second round better than the first round of FEC was due to reduced anxiety about having a new drug. It's impossible not to be a bit nervous and look for side effects though! There about four or five of us following behind you next week!,
I'm sure you will be fine 😊 nerves are normal I'm sure, who would have thought we would be anxious to let go of the old red stuff lol i'm there next Wednesday fingers crossed all will go great for you 🤞
The dog pic made me giggle looking after my sons dog from Sunday for a few days though I think Monty might rip mine to shreds if I try that photo lol
💕 love KC xx
Good luck Lisa, sure it will all go well!
Just remember to rest as my Onc always tells me...
Love the dog, ha ha, great photo Helen..
I was enjoying my extra days but seem to have some sort of virus which has knocked me out a bit.
Was also going to ask you Helen, since you are more of a nutrition guru, what's good to eat after antibiotics to get my flora back in sync?
How are you feeling Debs?
I had meeting with Onc on Tuesday, he was very excited about my shrinkage and then told me the hard part was still to come, 😂😂.
How is everyone else?
I don’t think your dog looks any more impressed with wearing a wig than the rest of us! 😂 (super cute dog though 😊❤️)
It’s my first paclitaxel today and I’m feeling nervous...
Great news about the shrinkage and that you are tolerating the T well. Great that your side effects are minimal.. We need all the good news we can get in this strange journey!
Hope you are feeling better Debs xxx
I am trying to distract myself before next week... Really enjoying the taste of food and company, and going out before the dreaded T day!!
I went away for the night on Sunday... Out of the house for 5 minutes, and the wig is already on the dog 😂. She is now the only person who has worn it
please don’t think I’m really fit - honestly I’m not 😂 but I do like/need the thinking time I get from running.
I’m putting my lack of side effects (so far) down to acupuncture & immunity boosting potions, plus some meditating which I’ve found more time for lately.
If anyone’s interested here’s the link to my justgiving page, even I don’t know all the people who donated as friends have shared it with their work etc
I’m so impressed with your running! I have to admit to not being a runner, but I’ve done a few charity 10Ks in the past and at the moment I’m struggling with a bit of walking let alone running. Do you have a fundraising page you can share here?
That’s also brilliant about your MRI; it’s really good to know that this sh*t can work!
I too am going to book a holiday to celebrate end of treatment, family all want to go to Peru so better start saving now......
I'm on same treatment as you, how large was your BC? Mine was 6.5cm so any shrinkage is exciting, 😂
Glad to know you got through H/p/t with no adverse affects, gives me hope!!
Well done for running, I am not sure I would make it to the end of the road. Do you think fitness affects our side effects?
Hope everyone is having a good Sunday 😊
It certainly looks like we all hit a low around the same time - and a dripping nose! Who knew??? I went for a run in the frosty sunshine but it’s once I started my nose is way ahead of me 😂.
Every year I do RED January where you run every day to raise money for Mind, this year I’m splitting what I raise with Breast Cancer Now and it’s already over £1000 which is just amazing plus lots of lovely friends have done days for me when it’s been too tough! Aren’t people amazing???
Like Viv I had another MRI last week and visually compared to October there’s almost nothing showing on the scan except the marker - needless to say it makes what we’re all going through feel more worth it, some validation. I’ll have the actual measurements at my next meeting.
After 4 x EC I had my first of 4 Herceptin + Pertuzamab + Docetaxel session on Friday and although it took 5 hours including all the flushes inbetween to check for reactions I have to say I’ve felt great since - none of the wooziness or tiredness of the previous ones so fingers crossed.
Like KC I should be done by mid March with op & radiotherapy after then the Herceptin continues for a year. I just can’t wait to book a holiday - that’s how I’ll celebrate moving on from this and of course I’d love to be part of any meet up we could organise amongst us 😊.
I don’t chip in much on here although I do read and take lots of laughs and inspiration from all of you warriors on here, I just felt I wanted to share where I’m at right now too in case it’s useful.
Wishing you all a strong & positive week xxx
My nose was sore for weeks when I first started but it did improve but has started to deteriorate again a bit , I think those membranes are so delicate they damage so easily.
Totally agree with all about being fed up I had a bloody good cry on my own on my birthday morning in bed , we are halfway through but for some reason it doesn't cheer me up and I'm normally the most annoyingly positive person you will meet , however sometimes you need a cry to feel better I guess.
My chemo finishes end March if all goes to plan , I was told 4 week break for surgery ( lumpectomy hopefully ) which will likely stretch to 6 knowing the NHS, then a break for healing, then 3x weeks of radiotherapy 5 days a week , then limbo !!!! Think that's when I will need support 🥴
Really looking forward to hearing what you get out of your conference Helen it will be interesting . Food wise I can taste this week but on the bad week went out for fish and chips which tasted so rubbish you wouldn't believe but the mushy peas were like nectar and I could taste those !!! It was so bizarre lol
Happy Sunday everyone 💕 KC xxx