Welcome back..I remember you from the beginning.
Thanks for the nail tip...looks good but pricey, and less colour to show bad application skills😂
I currently feel great..but am guessing I am on the docetaxol honeymoon period as I only had it yesterday.
My appetite and toilet habits are normal, and I started couch to 5k today...only 8 mins running so not that impressive! Going to see my daughter's boyfriend in Chicago tonight!
When did everyone start t0 get achy and tired? I now realise who mentally peculiar I felt on FEC...perhaps it was nausea...but it didn't feel quite like that to me.
How is everyone finding the contrast so far?
Keep going wonderful women...you have all been so brilliant 😗😗
Hi all, I haven’t been on here since the beginning of this journey, but I still follow it from afar and love reading your updates!
I have just popped back on because I was reading about the nails saga - I have just ordered Polybalm in readiness for my Paclitaxel, H & P cocktail. It’s had full clinical trials and is totally natural - the results look excellent. Someone on another thread was saying how good it had been for her too.
As a quick update: I’ve had 3 x EC and my 2.5 tumour can no longer be felt! Makes it all worthwhile! My dosage had to be lowered after the first cycle, and since then my SE’s have been pretty manageable, with days 6-9 being the ‘stay at home and do nothing’ days. I don’t know about all of you, but I have found that my skin is absorbing creams at such a rate! I am using a face cream that I normally use for freezing cold weather and it just soaks in! Same with hand creams.
My onc has swapped me from Docetaxol to weekly Paclitaxel for the next stage. I am still getting into the gym / walking as many days as I can as it is supposed to help with the side effects 🤞🏻
I’m following your Taxol journeys with interest - have to say I’m not looking forward to the change, just as I’m getting used to the EC...
Keep up the positivity - we’re well on our way through this necessary journey now 💕👍🏻
Ha ha, will look forward to that.
I am feeling very tired tonight. Onc warned me that I would most probably feel fluey and achy (combination of all 3 drugs)...
Good tips about the nails Viv and Shi
Will give it a go as I don't have much in the diary for next week!
I will try and post a pic as I am guessing they will look like a toddler has done them 😂
Glad you made it out alive Helen 😊. Nurse stayed and chatted to me for 15 minutes, but I knew they were checking for reactions...
Was very happy when it passed. Def don't have nausea but they gave me my usual anti sickness Emend tablets for 2 days...
Another lady who was in seemed to have weepy nails but didn't ask her what treatment she was on...
A lady who had docetaxel used this stuff, think it had been recommended by some chemo site. It has nail hardener in it. I bought some Amazon. You can get nail protector to go over it too
Black nail polish saved my nails on my hands and has worked for others. Also some had some other nail treatment, sorry I can’t remember the name of it that helped too. While on t and after, no popping ring plus in cans and watch the pressure of picking up carrier bags, nails have been known to pop off, it’s the chemo, but if it happens let your units know you must be careful against infection ❤️💕💕✨✨shi xx
Just back from the hospital- one good thing is that docetaxol is much shorter.
I am still alive, and mightily relieved! I only told my friend 30 minutes before that I may have an allergic reaction...and the blood drained out of her face! She got me to do some knitting whilst it was going in, and unbeknownst to me was checking me for symptoms! Women (not to be sexist) are so much better at that type of thing...years of distracting children perhaps? (again not to be sexist, as I know some great male parents and some terrible female ones!)
Is the black nail varnish to paint on to stop your nails going discoloured...it looks sore Debs. Or nail drops etc. Apparently some people ice their hands, as it can also help with the neuropathy. I have just read that 92% of people have nail problems on docetaxol so maybe need to start thinking about what to do. Apparently there are no clinical trials about it...one has been registered in Scotland in 2015, but no results have been published, which is a bit lax!
So far feeling like my appetite is much better than on FEC!
It started on the FEC but definitely got blacker after the docetaxel.
Hi Debsthat from side effects of your taxel ? Xxxx
Ha ha, e everyone is very chatty, must be all those steroids. Will be interesting to see if there is any difference next week...😅.
Yes was thinking about your daughter Helen, it would be truly tragic if she killed you off after all this hard work to get rid of your BC!!
My other sis is flying over from Germany in 10 days so she better not bring anything with her...
Just been for a walk along the seafront and had fish and chips whilst I can still taste and have some energy... def don't want off food taste in my mouth Chris...🤢
Think I need a lie down now and hoping it might help any childbirth...
Lots of love warriors...
Looks like we have all had steroids overload. No sleep hardly for the last two nights and mind going in to overdrive. I have tailored mine to two on the morning and two mid afternoon as I did think 8 a day was excessive.
Got absolutely horrible taste in my mouth like I have ate some food that has went off , but I suppose there is a glimpse of hope not eating as much as I have the last few day, god got to love those steroids lol
Managed to get out shopping yesterday and long walk with the doggy and hubby, but waiting for the crash next week
Helen/Viv you make me laugh at some of the things you do, but I suppose if we can't have a laugh it would be all doom and gloom
Lisa you just have to find a disabled toilet much bigger
I'm really concerned about the coronavirus as its just been confirmed first two cases in Newcastle, which I don't live that far away from, great always something
Well fellow ladies warriors going out for a walk and to post some letters, going to get that fresh air when I can!
Take care all sending hugs
We are all so different in terms of meds.. interesting how different the steroids are.
I think weekly or fortnightly Paxitaxol (sorry for spelling) may be a milder dose? Apparently it is better that way- so good on your ONCs for doing it like that.
You are getting loads of stuff Debs- you must rattle when you walk haha! My first filgrastram gave me a lot of joint pain- so wondering if that is not helping? I presume the denusomab is for the spinal bugger...so not surprising if you are going to have that for a while....but annoying for you when you have such a long period of treatment stretching infront of you.
My gist from the conference is that great strides are being made for stage 4, HER + and triple neg. Too right too as they are the most problematic initially. Heard one consultant complaining that stage 4 are living for so long now but they are been given extra funding to treat them....poor surgeons, disadvantaged by the successes in new medications. A lot of research is going into de-escalating surgery, and some fantastic cosmetic outcomes...to late for my amputated boob!!
ER+ is more of a problem in the long run, so I really hope they will start addressing it more. As we tend to be removed from the books after 5 years, they are really not picking up or dealing with late recurrence. This is more of a problem for lobular...so part of our group is about promoting replication and publication of this evidence on late recurrence, and then thinking how this can be factored into the NICE guidelines for treatment.
Thanks for the uplifting comments KC- I think we will need more of those as we go along over the next few months.
I am still buzzing on steroids...been on a long walk with one lovely friend and then meeting another lovely friend for lunch who is coming for chemo---I am hoping I will hold it together better for a friend than my partner!! My sister has bought me a snazzy leopard beret to wear!
I do think about coronavirus- am hoping my daughter will be quarantined on re-entry...which will be a nice welcome home!! Thinking about her really- the guilt she would feel if she kills me off!
Yes !!! To coronavirus , I have mild asthma and get bad chests so it's making me extremely anxious plus was diagnosed with a lung nodule from CT with diagnostics for BC, that and being immunocompromised , yeah bit concerned so watching the story closely
Xx KC xx
I'm lucky to get a Neulasta jab (same as filgrastim but just one jab 24 hrs after chemo). I go back to nurse to get it as too much of a baby to do it myself!!
Yes Debs, not sure why I get steroids for so long...
Did you get bad painsxwirh your docetaxel?
Hubby still as man flu, Jake only one arm so hurray for daughter Daisy who is holding the fort for now.
In Chemo fog I agreed to let her go to a festival in Manchester in June with her pals. No doubt that will give me anxiety for a few days...think everyone is taking advantage of my reduced brain cells alrhough I still do all the organising in the household, 😅. Too much of a control freak to let go.
I sm still.in bed, willing myself to get up, just feeling sleepy...
I’m just on FEC T and Denusomab
my meds are
steroids x 8 for day before chemo, day and next day then 1 x 3 times for 3 days
adcal calcium tablets x 2 for forseeable future
Ondansetron 1 twice a day 3 days
filgrastim injection 1 daily for 8 days
Hi All I'm weekly paclataxel but three weekly carboplatin , I think my blast before on steroids was for the carbo no DeX infusion on the day and 3 days low dose steroids and met anti sickness for after , im guessing next weeks pacliataxel will be poss dex infusion , pre meds then 3 days steroids to take home , until I hit the carbo again !! Not sure how the nurses remember all these different regimens !!! , i guess we are all individuals with our own different fingerprint on this BC and honestly ladies you are amazing !!!! Total superheroes 🦸♀️ (hope that's right emoji had to use a magnifying glass lol) dealing with all this stuff that comes our way isnt easy but we will get there 🤗 hugs to all the tired ,sleepy and slightly steroid manic this morning xxx KC xxxx
Helen, I'm on same steroids as you..
8, 8 ,8 for 3 days (starting day before) then 2, 2 2 2 2 for 5 days. I think dosage for Paclitaxel is def different Lisa. Not sure why we are are different to you Debs?
Ha ha, I did come across as very manic too don't worry!! I am constantly hungry though, cooked tea last night but waiting for my crash...
On a plus sign I took my 1/4 pull of Levomepromazine last night and literally only woke up once to go to the toilet. Night before I did the same and managed about 6 hours sleep with an hour awake at about 3.
They make me feel dopey in the morning but oh so worth it!!
Good luck today, you will be fine!!
I was given a single large steroid dose via IV just before the infusion and had no other steroids either before or to take home with me. I’m on 2 weekly paclitaxel. Like with you all, they said the steroids were to reduce risk of reaction / anaphylactic shock.
I had my 2nd docetaxel and another Denusomab Viv
To day is my last 8 steroids day then 3 days of 4
seems I might still have to keep going back even after chemo for the Denusomab injections possibly monthly for 6 months then every 6 months for upto 5 years!
will check that one with onc in 7th.
dont mind the stomach injections it’s the looong wait that gets me xx
That is what I had on FEC...and also only starting after the Chemo shot.
Are you on docetaxol or another regime, as everyone seems to be getting a slightly different cocktail and my mind is like a sieve!!
So nearly three times the dose is a bit of a shock, especially before the chemo... They said it is to prevent anaphylaxis and other allergic reactions... Which sounds a bit scary!! Once the first one is done it will be a relief xxxx
I'm only prescribed 2 mg three times a day for 3 days post chemo maybe the different regimens we are on ??
💕 xx KC xx
Absolutely buzzing off my face on steroids 😜
I feel I was telling lots of 'funny' jokes in my singing group tonight but a few people asked me if I was OK so I reckon I am coming over as a bit manic rather than hilarious!!
Have also been running up and down the stairs alot as I kept forgetting what I was meant to be getting but was just enjoying running up the stairs... I am guessing my crash next week is going to be horrific!!
Also had 4 people round for dinner...I don't think this is sustainable.... Can you imagine if we were all in the same room 😂
This feels like my 'last supper' before the T.
My Onc has told me I should taper the steroids.. So I am doing 8, 8, 4, 2, 2...anyone else tried this. I think going 8 to 0 would be tough
.... Anyone else tried this?
I really hope everyone is OK over the next few days... Just need to keep on going 😘😘😘
I seem to keep forgetting to reply to everyone in one message.
Hope you are feeling better this evening. I am getting doce with H/P every 3 weeks.
Ha ha, Lisa, that's very funny. Lucky I'm just in a room with 3 beds and large bathroom. I wasn't allowed to go till I had my flush!!
I am feeling fine tonight but think everyone does the 1st night! Waiting for what tge next few days might bring.
Apparently I talked way too much over dinner, think I asked my daughter about 10 questions in a minute. I blamed chemo brain, the rest of the family said I was always doing this...😔. I am trying to blame my annoying behaviour on BC but no one is buying it..😅
Helen you're next!!
Viv, I needed a pee during the 3 hour paclitaxel infusion and I had to take my drip with me... I duly wheeled the whole contraption down the corridor then spent 5 minutes embarrassing myself trying to get the damn thing through the toilet door. In the end I gave up and slightly shame-facedly wheeled it another 30 yards down the corridor to a bigger loo!
Bless you Flou, let’s hope it’s “first the worst” and the next two rounds aren’t so tough. How old is your son? Mine is 12 and has the kindest soul but no clue - a few weeks into chemo when I was feeling particularly bad he looked at me in surprise and asked “are you still poorly??”
Another 1 ticked off for you , I'm hoping my new PICC will stop all the fiddle faddle with the cannula though it's a bit sore at the mo end, still hot and flushed anyone else felt like that with taxel ? Hands and feet bit swollen and hot , I'm sure so done said they had this to ? I can remember sod all at the moment lol
💕 xx KC xx
All done xx had issues with the cannula, it kept bleeding back, then slipping causing drugs to stop. that’s a bit sore But all done and sorted for a few weeks xx
Hope everyone else is coping ok too xx
Hope all goes well today you do make me smile .
I'm day 1 post pac and carbo feeling rough flushed , hands tight , temp borderline unit advised keeping an eye on it , then I panicked as PICC didnt seem to have a cap but nurse reassured me it was ok , steroid jitters well in force today so know how you feel , how of often is your doce? Sorry you have probably said but I'm still foggy lol
💕 xx KC xx
Love the toilet run scale Helen. We should keep a little score amongst us, ha ha.
Just in getting my docetaxel and have passed the magic 10 minute mark for reaction so am waiting for it to run through. Made the mistake of having a cup of tea beforehand and am so bursting for a pee.
I'm on my own today (well hubby here) so no one to share my steroid rants. Think the nurses are avoiding me...🙈
Hope you are all well....
Sounds like we having a week of docetaxol craziness (plus some other drugs thrown in).
Debs...I cant believe you can go from making raw cauliflower dishes to making amazing works of knitting art...you obviously bounce back well!
What you are experiencing sounds like what my reg said was the usual differences between FEC and T...basically less nausea and more bone aches/ diarrhoea.
At the conference, the clinicians were joking that they had worked out how to stage diarrhoea....stage 1 is when you can't go on a long journey, stage 2 is when you can't go on a short journey, stage 3 is when you can't leave the house and stage 4 is when you can't leave the toilet....so feel free to stage your diarrhoea...I personally am looking forward to it after the constipation...unless I g on a short journey and then find out I am really stage 3 or 4..it is sometimes hard to gauge these things.
I am feeling pretty good at the moment- apparently my neutrophils are really good (23 I think- but have no idea what that means!!), so starting steroids tomorrow for my infusion on Friday...I dread to think what I will be like pumped up on steroids without any chemo, but I am guessing I will be insufferable. Loving the image of Viv and a women lying in bed and talking at each other hyped up on steroids!!
I think the general gist with exercise is that anything is good, and to find something you love. Most of us are trying to walk every day, and I think that will do a huge amount of good in terms of recovery. Also, the fitter you get before your surgery, the better you will recover and heal. If those of you who are neo adjuvant can get some exercise in between chemo and surgery, then it should help. Obviously in the long run, a mixture of cardio and resistance and flexibility is the best. I was talking to Liz O'Riordan at the conference...she was an Oncoplastic surgeon who is a breast cancer survivor (and has written a book on Breast Cancer which is very rated). She said to me that most people with breast cancer do not die of breast cancer (esp as survival rates have improved greatly)...she said most of us will die of heart attack or stroke in the long run (cheerful I know)- but the message was, that exercise and improving your heart health is probably the single most important thing you can do in the long run.
Anyway, next week I am aiming to exercise by running from my bed to the toilet a few times a day. Anything more than that is being over ambitious
Just back from my H/P. Went in at 9.30 and left at 5.30...all went well, had to sray for 6 hours to check for side effects but got my lunchand a few cups of tea. On a total steroid high and basically have a sore throatfrom talking so much, ha ha. Competition between me and lady in bed next to me 😅
Your chemo fog story made me laugh a lot Debs, was telling my daughter about it.
KC glad you have someone to talk to, haven't been to my local Maggie's yet but have one of those feel good things booked in 2 weeks.
Guess you must feeling a bit down today especially re funeral and stuff...
Flou, good to hear from you and happy down days were short lived.
I was speaking to 2 ladies today on docetaxel... both on same treatment as me. One called taxol 'bone crusher' because of pain for a few days but still went to work. And other lady is on 4th cycle and has had no pain. So total opp effects. The only thing they agreed on was bad taste, lack of appetite and diarrhoea in week 1.
Helen and Chris are you guys sorted for tomorrow?
That chemo fog made me laugh I walked out the unit and forgot my drinks bottle then had to go back as I left my coat !!!!,, well I'm just waiting for hubby to pick me up been here since 10am it's now 5.50 , am bushed but havent done much , well PICC line in , it was all a it more techno than I thought but will be a big bonus it's just a tad sore but will settle.
I had the new meds u fortunately I get the 3 days of DeX to complete which I didnt realise , but hey ho back in eight days for another pacliataxel 😕 just keep having to remind myself about why I'm here !!!
I popped in to our well ness counselling centre beautiful area free tea and coffee nice and quiet and you can have an choc chat with a counsellor and they do more formal follow on treatment if needed I will pop in as I'm all over the place with tears at the mo .
Hope everyone else who had or is having treatment is doing ok , not looking forward to the achey joints but diarrhoea will be a novel e perience lol
Love to all 💕 xxx KC xxx
Lisa, Epsom salt baths helped with the aches and pains of feeling like bones in a vice, please do double check with your unit just to be safe. Debnits 😂🤣😂🤣 yep chemo fog 🤣😂🤣😂 you just have to go with it and share funny stories on here together 👭 💕💕✨✨shi xx
Hope everyone is coping with any and all side effects.
Had my blood tests earlier. I told her the trouble they had last time, sticking both arms and still only managing 1/4 vial each.
She looked and said..I’m going to use a babyfine needle.
First time! Still bruised but she got what she needed.
Have Steve’s thermal gloves ready for tomorrow so my hand/wrists are beautiful for the cannula lol .
side effects with the T I think I’ve ticked off each common side effect lol
Had major chemo fog earlier in the week, forgot a friends moms name ( known her 20 odd years) I got upset, she got upset for me.
Put soup and tomatoes tins away in the bathroom cupboard!
Forgot to cook my cauliflower and dished up raw cauliflower cheese!
couldnt remember how to knit.
yesterday was much better though. Finally finished this set... Both my year 1 teachers are expecting within 2 weeks of each other and very kindly decided to give us one of each flavour.
This set is for Baby Cooke, a baby blue set is on the needles ready for Master Walters
Hope you are all getiing on ok 🙂
Viv and Lisa, yes I'm on Docetaxel, Herceptin & Pertuzamab - had my first infusion 2 weeks ago and was absolutely fine until day 4/5 when all my energy left me and I was literally sofa bound for 5 days - very tough as it's not happened to me before so wasn't really expecting it. My energy levels came back Day 6 and I've managed 3 days in my office this week!
Other side effects: my rash hasn't gone away and if anything is worse, plus to roof of my mouth is very sore (like burnt) so eating is very difficult. It's been my first real low point I'm moody and tearful so I've explained to my poor son how I feel - bless him. I'm trying hard to focus on having just 3 infusions left but the side effects day to day make that difficult. Needless to say I take a lot from reading all your posts so thank you 🙂
On a brighter note, yesterday I went to the Look Good Feel Better session in Leicester and it was really great (when truth be told I wasn't really in the mood). I met some lovely people at all different stages on their journey, swapped stories and tips AND got a fab goody bag - love a freebie! I'd thoroughly recommend it to everyone.
Take care all xxx
Glad to hear you're doing Ok. Yes I did hear that a few people get bad pain but generally lasts only a short period. Hope it's the same for you. One of s-e of H/P/T is bad diarrhoea so that will be pleasant, ha ha. Just going in now so will let you know how it went. Anyone else on H/P? Think Flou?
Didn't get my walk in this morning so will miss that bit if stress relief.
Have my kindle, ioad and snacks packed for my 6 hour stay.
Hubby's not puking anymore but has now got man-flu...
Let me know how you get on KC, thinking of you today too
Viv, good luck today and tomorrow - you deserve it after puking husband and Jake’s wrist - very inconsiderate of them both 😂
Also good luck KC. I agree that you shouldn’t go to the funeral and I’m sure your friend will appreciate you and everything else you do when you are up to it.
Hope you are feeling OK after yours Chris.
It will be good for everyone to get this cycle done and dusted.
Debs, hope you are feeling better too.
Helen, that’s interesting re the diet/ exercise - it gives me the incentive I’ve always been missing to get a bit more fit! What did they recommend?
There seems to be a lot of us lobular ladies here, more than the average I think based on percentages? All of us with large BCs.
Hello and hugs to everyone else xx