November 2021 Chemo Starters

[Kate-44]

Kim, what a relief it must be to be back home after the scare of getting covid on top of it all. It really is difficult to differentiate between the symptoms - I had to test myself last week but luckily it was just the filgastrim and round 4. I hope you're feeling a bit better and are on the mend. Sending you extra strength!

[KC57]

Quick update ladies

I made it home yesterday and am so pleased to be home the food was abysmal but thats a different story .

My covid journey hasn't been too bad ( she rushes to touch wood) I feel very lucky I caught omicron rather than an earlier versions as this seems milder and of course I'm vexed, what I found difficult was deciding what symptoms were covid and what were chemo 

Aches both,, tiredness, both, sore throat both , cough I have asthma , body aches I was on figrastim so both, feeling rubbish both

My temp was the only thing that alerted me and I got a temp once !!! 

So ladies be careful ,for me catching covid , well I was terrified as I was having chemo in our original lockdown and so many died , this made the fear overwhelming and my anxiety levels were through the roof, thank goodness to science and those wonderful staff I was ok .

Take care out there lovely ladies 💕💕

[Jukat]

Hey everyone....wishing you all a happier, healthier new year!

It has been such a joy reading your posts today....the highs and the lows...I am riding them all with you.

We had a quiet Christmas, just the 3 of us, hubby, daughter home from uni and me. Was in my 3rd week post EC 2nd cycle so felt good, could taste the food and had a tipple or two. Had my 3rd EC cycle on New Years Eve and am suffering a bit now. The exhaustion is like a fizzing inside my body. If I move anything the fizz comes...and not the kind of fizz I would actually like! My fingers feel like I have had them dipped in a bowl of ice and yet the flushes in the evening are an awful reminder of what I have a few months prior to diagnosis. Funny though, how the flushes have appeared in different patterns on my face! One night I looked like I had a red beard and the next my full T zone was bright red! I have also had some palpitations and my lymph nodes have swollen, with one lot in my neck looking like an egg, though I have been told it's not a worry as long as it goes back down.

I found the whole hair loss thing very traumatising. My Oncologist told me straight that he didn't like the cold cap, it doesn't always work, looks like torture, hurts and takes hours out of your day....and after weeks of reading different accounts to help me decide he helped me in that minute! So I was expecting hair loss and prepared by cutting it into a short pixie style, but then the pain started, like pins in my head so bad that I couldn't lay my head on the pillow without wincing, so I ordered hubby to shave it off and the physical relief was instant, though I think emotionally it will take longer to get over. 

I have also had some palpitations and my teeth and gums have felt very sensitive, though luckily no mouth sores as yet. At this point I feel like I have got off lightly compared to some...though my weekly chemo starts on 21st Jan...a new drug and I am a bit frightened that it will be a whole new set of side effects that I may not manage as well. 

Also hubby has gone back to work today so I am a bit anxious about the whole covid situation....everyone I know seems to have it at the minute and I feel like I want to lock myself away.

So glad to be in your gang ladies...warrior women!!

Julia xx

[KC57]

Hi everyone 

Well my chemo story dosent get easier , after avoiding covid since March 2020 it finally got me , or should I say hubby then me , he was notified by his friend who had lat flow positive result early last week , all hubbys lat flows were neg but he got a sore throat so I made him have a pcr which was positive.

Now I haven't been feeling great due to chemo and filgrastim but I got a temp I rang the out of hours emergency number and was admitted , all my lat flows were neg at home so I was hopeful, however its got me .

It's so difficult to extrapolate chemo from covid symptoms though , so I feel a bit rough ,on antibiotics as a precaution and consultant will decide whether I can go on the trial for antivirals however the nurse said I may be too well 

So my release from isolation is the eleventh , next and last chemo 14th Jan , im a bit of a worrier so glad they are keeping me for a few more days .

So be careful lovely  ladies Kim xx 

[karzo]

Hi everyone, I've been wondering how everyone is getting on over Xmas.

I had my third FEC on Xmas Eve and felt surprisingly ok on Xmas and boxing day. Just the three of us, nice quiet days. Been feeling a bit crappy since then but just the usual crappy, no extra crappy treats like it sounds some of you had. I had the same weird tingling in my hands as cycle 2, and still have that occasionally. I also feel like my heart is racing sometimes plus the occasional hot flush. We did manage a day out this week though which felt like a triumph. Hubby hurt his shoulder and you should hear him complain of the pain... I'm finding it hard to be sympathetic! 

I've been going out for a walk with my son quite often and sometimes my woolly hat is too hot, so I whip it off and show the world my bald head and very thin quiff (I left a stripe of hair in the middle of my head as I couldn't bear to go full bald!). We then joke about how drivers and passersby react. I live in a very rural area so there aren't many. It takes the sting out of it to try and have fun with it, but it's not easy. I keep forgetting what I look like then do a double take when I walk past the mirror!

Keep breathing, one step at a time, hoping for good things for us all in 2022

Karen

[Kate-44]

Hi all, 

So sorry to hear of the various trials you've all been having. Although, selfishly, it makes me feel so much better as I certainly went down the rabbit hole over this past week! 4th (and final) round of EC on 23rd took it out of me completely, physically and emotionally. Everything seems to hurt from the veins down to my derriere. Christmas was a write off, and my birthday two weeks before (coming two days after the 3rd round), but I've been ok with that - took some explaining to a few people who didn't get it - but I personally felt super lucky to spend these occasions recovering from chemo and blasting the tumours rather than be on some waitlist for treatment worried sick the cancer is spreading. But it was the final round of the hard stuff and I am beginning to feel somewhat better now. Just need to build up the energy and resilience to face chemo part II next Thursday - 12 weekly rounds of Phesgo and Herceptin every 3 (I think). Been told that regime is a walk in the park compared to EC - not sure that's quite the case when I hear the tales of nerve ending issues - curious to find out and to see what I can do to try and get ahead of the new side effects!

How I admire the courage of those who have braved the shave. I need to do that too but have been too emotional at the thought of it, despite thinking it would be ok when I first thought of it a few weeks ago. I lost so much after round 2 but I've hung on in the hope the loss would slow down - it has, but it is continuous and getting patchier each and every day. I'm down to about 10-20% and what's left doesn't even resemble my old hair - it's almost comical, like a bad toupee flopping in the wind. Also, it means the cold cap is almost unbearable, even if they put gauze on the bald bits like they did with me - stonking headache and felt really sick by the end of the 4th infusion. You have saved yourself that pain so, while I'm sure it was hard and emotional, it was definitely a good decision. Part of my reticence has also been seeing the sebaceous cyst I have on my head stare back at me in the mirror making me feel even uglier. I nearly got rid of it during the summer but didn't want a bald patch! Oh, had I known a BC diagnosis and chemo were just around the corner ... wonder how long after chemo you can have something like that removed? Maybe there will be a silver lining in this after all!

I'm sending everyone the best of wishes for the New Year, and lots of strength for the challenges and milestones ahead. May the grey clouds be fleeting with little rays of sunshine amidst them to uplift our spirits as we keep trooping on.

Kx 

[KC57]

Hi Niks75

This is my first time on Doce as my last chemo in 2020 was EC then pac and carbo weekly which was tough as I got very anaemic and neutropenic , this time I have had the Figrastim with each round so my my white cell  count has remained up theough my red cells are falling 

Doce seems similar to the rest , tiredness, sore, mouth, hairloss, I get dizzy spells runny eyes , runny nose , sore tongue , however I have got the hand and foot syndrome which  I didnt have before my nail beds are sore and just changing color a bit , my finger tips are red and sore but I think this is a specific side effect to doce .

In the Nov 19 chemo starters ,, some were on doce but not everyone had the nail and finger problem , we all react so differently .

I to was worried about the change over in 2019, 2020 as EC was in a pattern however you will get in to a pattern with the doce to.

Hope everyone else is doing ok 

Kim 💕💕💕

[Niks75]

Hi Kim

Bless you feeling that way over Christmas and having your treatment on Christmas Eve.  I felt lucky to get through it and have mind on 29th.   It’s my Birthday on Sunday and I don’t think there will be much celebrating either! 

sorry to hear about your hand and feet, I start the Docetaxel next session (19/1) and I am so nervous of this side effect.  How has it been for you otherwise? The EC, whilst not great, hasn’t been to bad for me so I am apprehensive of changing drugs and experiencing different unknown side effects 😬.

That’s not good about the risk of covid after hubby’s contact.  I am so worried about catching it.  We are all testing via LFT every few days, ok so far but it is such a worry to see how many people are testing positive.  Fingers crossed for negative results. 

Nikki xx

[Niks75]

Good morning

It has been a quiet but lovely Christmas here, I was at the end of cycle two so felt more or less normal, which was great for me and the kids.  (I am a single parent).

I had my 3rd EC on Wednesday.  I had a similar experience re: cold capping.  I tried it for the 1st and 2nd and found ai had so much hair loss and bald patches so decided not to do it again.  I bumped into a lady who I had met on my 1st session (her 2nd), she was going in for her 4th session and had what looked to be a full head of hair, she said it had thinned a lot but it looked normal to me. It reinforces that the cold cap had not worked for me and made me feel confident in my decision not to have it again.  I must say that the treatment without the added pressure of the cold cap was so much better.  

Day 2 was a right off, I didn’t sleep at all the night after the treatment and just felt so hungover.  Today is hopefully a better day.  I have a scan booked for the 12th to see if it’s all working, the lump is definitely smaller to palpate go fingers crossed.

sorry to hear about the heart fibrillations, and the struggle to be heard, hopefully the meds with work well for you.  Is this a side effect of the FEC?

I find I am wishing time away, halfway through the chemo treatment plan, I feel I can be mostly positive but wonder if that’s mostly trying to keep normality for everybody else.  It’s all pretty rubbish really though isn’t it.  But we push through! Xx

[KC57]

Hi everyone 

It's been a tough Christmas , I had treatment Xmas eve , this is my third docetaxel and cyclo and it's hit me pretty hard the sheer exhaustion took me to sleeping and napping whenever I could , but only one treatment to go .

Unfortunately I have developed hand and foot syndrome due to the docetaxel , mainly my hands , my fingertips are red and painful , the skin is going hard and cracking , I don't think there is much they can do i'm already on pyridoxine a vitamin they can give but it makes simple everyday task like tying shoe laces , opening packets and washing hands pInful .

The joy of chemo just keeps giving !!!

My last session is the 14th Jan  just before my 60th Birthday on the 17th so no celebrations just a quiet day I think .

The only other bit of chaos is hubby needs a pcr test as a friend rang to say he was positive for covid and hubby was speaking to him in a building for a short while but of course he didn't have his mask on , I was furious !!! Chemo during bloody covid is no fun , so I will update when we know his results and let him out the doghouse , 

Keep fingers crossed for me ladies 

Love to all Kim 💕

[Pigaletto]

Hello everyone. I sense either we’re all focussing on doing our best to be positive through Xmas or have gone down a rabbit hole as we’re all being so quiet. 

how ARE you doing? It would be nice to hear and encourage a bit of a flow of supportive communication as we come out of the ‘holiday’ period. 

for my part I developed constant heart fibrillations and am now on a BETA blocker. The side effect is that tiredness as it lowers the blood pressure right down. I found I had to push to get it checked, saying ‘I know my own body and this isn’t normal’…..and I’m bloody glad I did! In fact I bought a heart monitor so I could prove it was happening because of course it didn’t happen for the half hour I had an echo cardiogram. 

That aside I gave up and braved the shave. During my second FEC-T the lady sharing the cold cap machine came in and I assumed she must be on her first treatment as she had a full head of hair. Turned out it wasn’t her fifth, which made me realise it definitely wasn’t working for me when I saw myself naked in the mirror all I could think was concentration camp survivor. But I gave myself a talking to and focused on the word survivor. Though my husband came upstairs and touched my shoulder. Whereupon I howled……. And without thinking I said ‘I am in need of tenderness’.    Those choice of words seem to have changed his perception and he is hugging me and looking out for me more. He realises I’m not superwoman and while I can put on a brave face and seem fine with the children around….I need bolstering. 

so I say to you all….ask for tenderness and I hope you receive. I send love and hugs to all xx

[karzo]

@mon1972 thanks, yeah I realise there are probably many of us on crappy treatment schedules, and yours is a double whammy indeed. I guess I've been trying to get my head round things and getting on with it all trying to be positive, and then boom, another change. I guess I should be used to that now eh, that seems to to be the form for us all in this cancer boat. 

I'll be with you raising a glass on NYE. 

Cheers x

[mon1972]

Hi,

I just wanted to say that I’ve also got my chemo weekly, my next one is Xmas Eve then New Year’s Eve etc… it’s sucks I know. But I feel that although this year has been a write off regarding all the lovely things we would do normally, next year us going to be a incredible!

ive managed to prep what I can for the big day, I’ll be the armchair supervisor re the cooking and will join in the games when I can and when I can’t I’ll rest in the chair. This year will be different for us all but nothing will stop me raising a glass on NYE to seeing the back of this awful year and saying a silent prayer that next year will be better for us all. 

oh and I’m booked to have my covid booster on the unit next week after my bloods. Another thing to look forward too but at least I won’t be so afraid to go outside of the house once I’ve had it. Always better to be safe than sorry. Xx

[Shi]

karzo yes do check with your unit about your covid booster ❤️ Don’t worry about delay to next treatment it’s frustrating but happens to lots on here ❤️ Keep focused and don’t let it take your joy ❤️ You are in control even if it doesn’t feel like you are ❤️ Rant away that’s what the threads are for, safe to let rip with everyone who understands and gets it ❤️💕💕✨✨Shi xx

[karzo]

Hi everyone, 

I was supposed to have my 3rd FEC cycle on Monday but the hospital just rang to say my neutrophils are too low, so they need to postpone. So because of Xmas etc it is now planned for 24th ?. We were obvs planning a low key Xmas with just 3 of us in the first cycle week, but there goes any Xmas joy. It just feel like another emotional punch, here we are just managing and accepting that Xmas will be crap, and now it's been largely wiped out. And I'm supposed to have COVID booster tomorrow ... Should I? I'll call the breast nurse. 

I just needed to rant. Hope you are all having a better week x

[LindseyLou72]

That’s awful, it’s isolating enough having to go through this physically and mentally.  A little Empathy wouldn’t go a miss every now and then. I had to ask my husband for a hug last week because he was too intimidated by the whole thing to just respond.  It’s not easy what we’re doing.  Keep posting here, we’ve got you! 

[mon1972]

Hi.

I just wanted to say I know how you feel about  having those difficult conversations. My cancer almost feels like the elephant in the room. I’m trying to be practical and make sure things are organised for my family as I don’t want them having to deal with any more crap should things go wrong and I’m not able to do it for them as I always have.
My family thought I was being morbid when I updated my will and life insurance policies but I see it as another way of taking care of them.

I had a bad reaction on my 2nd EC and was admitted to hospital for a time and I think that really changed my outlook (well scared the crap out of me if I’m honest) and yesterday they started me on pax/carbo after having a port fitted and I think having to go though it alone again without someone to hold my hand was really tough especially after my last experience. Thankfully it went ok so just 11 more weekly cycles to get through then I’m onto the radiotherapy. 
anyway I just wanted to say I get the rage. I could howl at the wind most days but don’t because I’m told I have to remain positive at all times not just for myself but for the family. (Just a random thought but even before the big C took over my life i don’t remember being positive all the time! It’s life and we all have up & down days!!) 

Guess I’m having a bit of a bad day too

X

[KC57]

Hi Jad 

This is my second time round for chemo and there is little empathy from the family who say " you did it before " and " it didn't kill you " so "you can do it again can't you " I can't begin to say how much that hurt from people close to me , I didnt want to have to 🤬 go through it again full stop , I am angry that my body let me down .... again  its bloody hard to put a brave face on it , I scream inside and rant and rage but on the outside I'm mum who copes with everything .

I bought a car today on a lease and I had to ask the guy what happens if I die in the next 4 years , I don't want to have to ask those questions but someone has to , my hubby looked away , but I have to be realistic those honest conversations are not happening here and I don't know who's fault it is , both of us I guess 

As you can tell its not been a good day today , I feel pants and my superhero mask has slipped , im tired and fed up .

Sorry ladies just a bad day xxxx

[Jad]

Great to hear an account from someone at the other end. I am so looking forward to summer. I live in Northern Ireland and have some great friends and family. But really miss my girlfriends and family in Yorkshire and the South of England. That's my goal to see all of them at the other end. 

The hat thing is definitely another thing to get your head around after hair loss. And that line, '...we expected this...' made me cross at first but I am getting my head around it 2 days later. 

A big part of me doesn't want to hide that I am going through chemotherapy. Probably because I was so scared of it and I don't want anyone else to have that fear. It has reminded me of other types of trauma we women go through, like miscarriage, we don't talk about it or find a way to accept that this is real life event publicly.  I hope this doesn't offend anyone. 

This chat room shows how good we are at supporting each other. So many people have said, ' I have a friend, relative, colleague who has been through chemo' it's important -just my opinion- to start shattering the screen and making sure we are seen and heard. If you want to that is.

Sorry for the rant, just needed to get it off my chest after this week.

Big hugs everyone - we've got this.

Jxx

[Kate-44]

@karzo Pleased to hear you’re laughing this week, and experimenting with styles, whether they were the look you were going for or not! My hairdresser is looking forward to trying out ideas from Pinterest as mine grows back. Could be a lot of fun and, just think, no haircut or bad hair day will ever seem as bad as the ones we are having right now - that has to be liberating longer term, doesn’t it!

[Kate-44]

@Jukat the lady in the chair next to me yesterday had shaved all of her lovely thick long white hair off and was very stoic about it - refused to go through either the ordeal of the cold cap (brace yourselves for round 3 if you’ve lost a lot on top - rather more bracing this time round even if I remembered the headband for the ears! - I tried to imagine myself in one of those ice baths by a sauna in Iceland, which is where I had hoped to spend a few days this winter!). Anyway, she’s going to turn it into a wig if it doesn’t grow back as luscious. And then said it’s really just vanity, probably more important when your young like me. Made me think all the way home about whether that’s true. People do tend to shrug it off a bit as temporary don’t they? I don’t think it’s just vanity. It’s like you said, it’s part of your femininity and how you express yourself. It doesn’t have to have been long, could have been short, but we take care of it, experiment with styles, dress it up, moan when it frizzes into a mess in the rain… It doesn’t change you as a person but it does play into confidence and how you feel.  Of course it will grow back and we’ll take it on the chin and have a giggle (hopefully) if it come out totally different in texture and colour until it works itself out but no one gets that unchosen and sudden loss -  you have to through it personally. People forget it goes alongside other anxieties you may have either because of other physical changes you’ve experienced or have yet to face which are also so inherent to being a woman. I’m trying not to think too much about what lays ahead, one step at a time, and stop trying to project future feelings until I know exactly what the permanent changes will be. In the meantime, just lovely to go through this with others who get it! 

Where’s Wally! That made me chuckle. I feel I look the same with glasses and a bobble hat. Now have a lovely red woollen hat that sits closer to the head but not sure if it will disguise the chemo hat - find out tomorrow  as I’ve wrapped it up for my birthday tomorrow. I suspect a Russian style hat might have been better and great for the cold snaps of January and February instead - Christmas present to me sorted!

[Niks75]

@Pigaletto and all the lovely ladies

Hey, thanks for your reply (I return mine from Dorset too!)  I had heard about the nail polish so done that since the 1st cycle.  So far so good. 

I had my 2nd EC on Weds, (I too got my period, the joy 🙄).  I am cold capping and have lost masses of hair.  No bald patches as such but so very thin and still falling daily.  I was in two kinds about continuing but have been told that it helps with the regrow that?  I have one more EC on 29th and then move on to Docetaxel, is the hair loss less harsh with that drug?   I found it very traumatic after the biggest shed which happened when washing my hair.  At home I wear soft turban type headwear and outside I wear a woolly beany hat, thank goodness for the season we are in! I can’t imagine what I would do if it was the height of summer! 

I didn’t react to the injections last time, had some niggly pains but nothing major. I feel tired again this time (day 2), a lot better than the 1st cycle so I am hoping this is how it will be. 

it’s so nice to be able to share the journey with you ladies.  

hope you are all feeling ok today 

Nikki xx

[KC57]

Hi Lindsey

Rough night here to , sorry to hear about your pain if its due to the filgrastim it goes pretty quickk after you finish it , within s day or two , take regular pain killers and let your team know how it's affecting you and hang in there you're not alone , i'm awake with this ruddy itch !

Sending hugs Kim 💕

[LindseyLou72]

It’s about 4am and I’m struggling with the pain, I’m so pleased you’ve written up about this.  Thank you 🙏 Like you I’m questioning the reaction, wondering how long it’ll last.  It’s very reassuring to know someone else is going through the same.  

[karzo]

Hi everyone, 

Yes the hair loss is strangely emotional, even when you know it's going to happen and why. I've lost most of mine but couldn't face the shave, so my husband did a no.1 at the back, and I kind of chopped off the length at the top. So I look like either Kim Jong Un, Jack Nicholson in The Shining or a baby orangutan. I was crying last week but this week I'm laughing about it. I'll probably shave it off this weekend. I'm in second week of cycle now and feeling relatively good. 

Keep breathing everyone, sending strength

Karen \ Karzo

[Jukat]

Well what a relief!! I thought I was being overly sensitive over the hair loss and that my couple of traumatic days of crying and feeling down over my shedding more than the cat were just me being dramatic....and no one really understands it do they? Friends and family have said 'well we expected that didn't we'.....but that really doesn't help...it's still a shock and just another part of my femininity that has been stripped away. To add insult to injury I went for my blood test this morning and popped a hat on to catch hair and noticed in the mirror when I pulled up at the hospital that I look like where's Wally!! Just gets better doesn't it!

Julia xxx

[KC57]

Hi Kate 

I have  only been given the filgrastim for 5 days each round but you described the pain perfectly , it also makes me itch which is driving me CRAZY 😖! I'm struggling this 2nd time round more than when I had chemo in 2019/20 literally no energy whatsoever I seem to be running on empty , I to have had a racing heart which on my fitbit looks like I have done loads of exercise lol 😆 

We are getting through it ladies step by step with big girl pants pulled up high 

Love to all Kim x 💕

[Jad]

Hi LMitchell

I lost lots of hair yesterday so it's been an emotional week. Lots of people tell you it's going to happen but until it actually does you don't know how to react. It was almost worse than when they told me I had breast cancer. 

I am opting for chemo hats there are some nice ones out there. I have a wig on order so hopefully that will be here soon. I also think I am not planning on being out and about that much and we can get away with winter knitted beanies and hats at this time of year. 

Always trying to look for the positive. 

Stay safe and well, big hugs

Jxx

[Kate-44]

@KC57 - great to hear someone else’s body didn’t like the filgastrim! I’ve never experienced pain like it - it seemed to radiate out from the small of my back and went in waves and I could barely walk. I thought it was an adverse reaction after treating myself to a glass of wine until I read the chats on another forum (even though I’d been told alcohol in moderation was fine with the meds I’m on, I’ve tried to eliminate it entirely given I’m having EC every two weeks and need to stay as hydrated as possible).

I started aching after the 6th injection round one but it was after the 7th and final one that the crippling pain really kicked in. The doc gave me codeine for it - they gave me two weeks’ worth of pills which had me worried how long the pain hangs around for - luckily just needed to take them for one day only. Started getting aches after the 5th injection in round 2 but taking painkillers as soon as the niggles started worked an absolute treat and kept the aches to a minimum and far less intense. 

[Kate-44]

Hi @Pigaletto,

Thanks for the nail tips. I hadn’t really paid attention to those but bought cuticle oil yesterday and some nourishing polish. I’ll put a dark layer over that too. Never been good at putting it on - perhaps I’ll become an expert by the end of this! 

I’m two rounds down on EC and doing the cold cap too. I lost quite a lot of hair after round 2 - it’s been an emotional week to say the least as I didn’t expect it to come out so quickly. I’ve taken to wearing a lovely hairnet these past few days to catch the hairs - was spending a lot of time with the lint roller and hoover. A friend who went through this not so long ago said to expect another big hair dump after round 3 - that’s today for me - it then may slow down. Reckon I lost at least 60% last week so psyching myself up for it all going or possibly braving the shave to avoid a patchy look. Now trying to focus on the positives. With each hair that falls, the stinging gets less and I always thought it looked quite a relaxing experience when men run those electric shavers over their bald heads, so maybe it won’t be traumatic after the initial shock. I also have an array of hats, super wide head bands and turbans (apparently all the cool kids are wearing those so perhaps people will just see a woman having a mid-life crisis trying to be young and fashionable rather than a chemo patient).

Another tip I have for the cold cap - wear a hairband. Boots sell them in packs or two for a couple of quid and they’ll help stop your ears and forehead freezing. I was wondering why round 2 felt harder under the cap and then realised my error as I pulled the hairband out the bag when I got home! Not making that mistake again.

Kate

[LMitchell]

hey J

Welcome. we are similar but I am only having EC, 6 cycles, every three weeks. Due my third this Friday.

My second was 20%reduced and I was much better. My hair has all but gone, and I am piling on the weight. I don't have much energy and envy all those who are able to get out for a walk. I have promised myself when I am well I will get fitter. but for now just baby steps. but overall I am not doing too bad, only tired, not other yucky symptoms to deal with. I have a small thrombosis on one of the veins running parallel to the PICC line but nothing to worry about apparently, on anti coagulants.

Hope you all have a good week. love and hugs

[Pigaletto]

@Niks75 I forgot to add….definitely do the ‘look good feel good’ free online session in nail care, skin and hair care. Invaluable tips like painting your nails dark so UV doesn’t react with the chemo under your nail bed. Simple solution. 

[Pigaletto]

Hello @Niks75  it looks like you, me and ankther are all on the FEC-T regime? I had my first on 24th, and 2nd next Friday.  I was super anxious before first but it turned out to be easier than I thought physically, despite some weird side effects like getting my words jumbled, but I took all the drugs and it was fine. I did have a racing heart at one point but just rang the ‘sos’ line as they said it is always better to check in. I also couldn’t imagine giving myself the Filigrastin injections but when a friend said she had done this for years for colitis I knew I could too. I’ve never been so happy to have tummy fat!! Point being either way that you barely feel it. After a cannula it is nothing and it really is easy once you’ve done it once in front of your visiting district nurse (you can ask for one to help you). 

I have a 16 and 13 yr old. I can but share my experience which is that I have been 100% honest so they know they can trust that I’m not hiding anything. I’ve explained what to expect with my treatment and I filled the friedge and freezer with meals for that first week. They have stepped up with keeping house tidy for our sanity and we are getting through it as a team. I am staying positive but also am not afraid to hide when I’m finding something hard. They are learning that life does throw curved balls but we get through them not by hiding or covering up our feelings but by welcoming help and support and getting through them together. 

I wish you all the best and am sending hugs galore and love to everyone here  (from Dorset….) 

[Jad]

1st treatment Nov25 

Hi Everyone

I hope you are all as well as possible?

I had breast conservation surgery on the 10th of October to remove an oestrogen receptor primary tumour, DCIS and 15 lymph nodes which came back with 11 including cancer cells. Grade 3, stage 3.

I am on a 3 x EC and 3 x Doc, 21 days apart cycle. Then Radiotherapy (not sure yet how long between 1-3 weeks) then Tamoxifen for 10 years. 

The first week has been a bit of a rollercoaster - first night nausea, then my neulasta injection which sent my body into an acute high - with a crash on the Sunday like the worst hangover ever, only I hadn't enjoyed the party the night before!

My sickness has been well managed by the meds (although my husband has become a pharmacist in training as chemo brain meant I really couldn't get my head around the instructions). No temperature spikes so far, but headaches, lots of headaches.  Very interested if anyone else with headaches suffered from migraines previously?

Going into week 2 feeling not too bad, a bit spaced out - but I have felt like I am living in a bubble since diagnosis so that's nothing new!

Take care everyone - we got this!!

Jx

[KC57]

Hi all 

 

Well I had my 2nd cyclo doce cycle , bit wobbly today and taste gone again , flushed no tired .

My hair was falling fast this week so I braved the shave , noticed my eyelashes are bailing to , think i hated that the most , lizardeyes yuck . I prefer the chemo hats to my wig , it cost a fortune and was soooo uncomfortable,when my hair grew back last time I kept it short so a blonde Bob isn't me anymore .

My next cycle falls 24th Dec just on Christmas but hey ho its got to be done ,at least I have been told it's only 4 cycles I have to have , oh and I got my silicone prosthetic last week and it's comfortable us a free bra so a small perk .

Not really looking forward to the next few weeks still not sure how I'm going to react 2nd time round 

Lots of love to all 

[Pigaletto]

Hi @karszo ,

My period also started yesterday. I'm with you - the bloody irony.

Meanwhile, every time I take a hat off I anticipate a chunk of hair with it.  I am so sorry about how you are feeling. As my husband said, chemo is shit-stick whichever way you look at it. 

I tried something yesterday which worked quite well. Maybe you could? 

Like you I also bought a couple of bamboo chemo caps to have ready and thought they just scream 'cancer'. So I put the black one on and put a beret over the top. The result, you'd never know I didn't have hair.

The other thing I've been recommended by a friend who went through this a few years back, is to buy a volumiser. See here: https://www.headscarvesbyciara.co.uk/volumiser-base-hats-bands/volumising-base-hat-1 It looks more natural, as though you do have hair, under a cap/scarf/bobble hat.  

If it helps at all it did occur to me that one advantage of it being winter is that we will not look out of place wearing a hat.....unlike if it was summer. 

Sending love and hugs - Charlotte

[karzo]

Hi @Pigaletto and everyone,

Glad to hear my experiences help! I find it helps me as well, just to get these things out there. I haven't replied sooner as I've been struggling a bit with the hair loss this week. It was falling gently last week but this week it's thinning really fast. I had a shower and it came out in masses, too much to go down the plughole and that was with a relatively short cut. I've got a head cover from Etsy, but of course when I put it on, it just yells 'cancer' at me, and it really knocked me sideways, such an external visual reminder. It's like coming to terms with it all over again - I've been able to hide a smaller boob and a PICC line, but my hair ? So I'm thinking about the shave now. It felt a bit like giving in, but perhaps I need to consider it as taking a tiny bit of control. 

The other issue for me this week is that I got my period on chemo day. WTH! What is my body up to. I'm 51 and was still regular, and it was the right time, but seriously. My hair is falling out but my body still wants to have a period. Thanks oestrogen.

Thanks for the tip on nails, have begun with the coconut oil, had not heard of that one. I'm doing. Look good course next week so I'll share any top tips!

Strength to us all 🤯💖 

[Pigaletto]

Hi Karen @karzo 

I have heard of others having the same symptom, but have not myself. I just wanted to say that I am just behind you with FEC-T and had my first on 24th. Next one is on 17th Dec.  In a sense you are taking footsteps I am following, and in the spirit of having a hand hold I appreciate you posting......it helps me. And while I know we might all have different side effects, having a heads up of possibles on the same regimen is useful. 

By the way, has your hair started to fall out yet? (I'm wondering if it is 2-3 weeks or longer before it starts?) I tried the cold cap and got on ok with it thanks to a tip from the chemo nurse to take two paracetamol and hour before (it takes the edge off).  But we will see to what extent it works. I have thick hair, so fingers crossed.

A final note to all.....I did the 'Look Good Feel Good' online nail care session yesterday and recommend it. I asked why we are recommended to wear DARK nail polish. The answer is because the chemo drugs react to UV through the nail, causing it to lift off the nail bed. So get your polish on, spread it around/beyond the edges of the nail before your treatment. Wash your hands when you get home and any on the skin will just wash away.   The other top, top tip is get nail or any kind of oil (coconut, olive etc) and rub it into your fingers from tip to the first joint where your nail bed actually starts growing. Do this three times a day and it will make a massive difference to nail health. 

There were so many women on the session who'd never been told about wearing dark polish and were on the session having already finished their chemo but with nails in terrible condition. So, let's get the word out.

[karzo]

Thanks Julia and everyone, 

Second FEC done, finished by lunchtime but by 8pm I had this weird tingling under the skin from elbows to fingers, and knees to toes. Anyone had that or heard of it? Kind of like ants crawling under the skin. I rang the chemo helpline who thought it was an allergic reaction to one of the drugs and told me to watch for an anaphylactic reaction like tongue swelling .... Holy moly, just as I was trying to sleep!

Felt the usual sick/rough in general but just taking it easy off work. 

Hope you are all getting through, hugs, karen

[Beth.Dragonfly]

I had my first infusion of Taxol (along with herceptin)- weekly for 12 weeks. It went surprisingly well and only minor aches for 1 day. Other than that I’m feeling pretty normal. Waiting for the other shoe to drop….expecting more symptoms each week as it builds in my system. Preparing for hair loss since most on the regimen seem to lose it.  Hanging in there. 

[Jukat]

Hi Kim

The flipping itch is a pain in the rear!!!! I had it bad during recovery from one of my surgeries. My skin at the time was falling apart (dressings allergy) plus a large area was completely numb so I had to watch that I didn't over itch in those spots 🙄

My sister bought me a back scratcher and it was like my best friend....I just lightly rubbed it over the really bad itchy bits and it was bliss 😌 ...I did also take anti histamines but they didn't seem to do anything.

Hope you find some relief soon.

Julia xxx

[Jukat]

Hi Karen, glad you are starting to feel better now 😘

I had my first cycle of E&C 10 days ago and I think I have got off lightly.

The first few days I felt great...loads of energy...just had a lot of flushing, eyes red, skin changes....then I had about 3 days where I couldn't get off the couch (I refuse to go to bed!) I just felt exhausted....after that, the last few days I have again had bags of energy but then hit a wall in the afternoon and needed a nap! I have felt a bit of sensitivity on my scalp but as yet haven't lost any hair and even though they warned me that the Filgastrim would cause joint pain...all my usual joint aches have disappeared...I even found I have more mobility in my arm (I had 3 surgeries on that side and was still improving movement). I think the most annoying side effect has been the loss of taste....anything I put in my mouth tastes like wallpaper paste 🤢

I had also heard that each cycle can be different in the severity of side effects....but I am really hoping that its the same next time round as it will be Christmas and I may feel like having a glass of bubbly!

Hope your second cycle goes well and you have a mild experience.

Much love.

Julia xx

[KC57]

Hi Karzo and e eryone else 

I'm still on a bit of a roller coaster ride following my first chemo ( 2nd time having chemo) following my breakout of mouth sores at the beginning of last week  , I've developed an allergic reaction to something and am itching head to toe and its driving me crazy , I have no idea what I'm sensitive  to though.

My taste still isn't back and my hair was coming out fast as well , so that's been buzzed off and my chemo hats and bandanas on , trust me to make that decision on the coldest days of the year lol 

If anyone is interested there is a lovely funny and poignant piece written by Heather Lagemann called the "11 stages of losing your hair" , it made me smile and cry a little but rings so true

It's my 2nd cycle on Friday , again not too sure what to expect , just so pleased that mask wearing is picking up , not pleased about the new covid variant , but I guess this is the life we are living now 

Hope you are all ok and coping well 

💕 Kim xx 

[karzo]

Happy Sunday!

How is everyone doing? I'm going for my second cycle of FEC tomorrow. My hair is starting to fall out quite a lot. Otherwise I'm doing ok, been for a long walk today as I've been feeling "normal" for the last 4-5 days. Hoping second round is similar, but I get different opinions with each nurse or doctor I speak to.

Hugs to us all 

Karen x

[KC57]

Hi everyone 

Well after my first dose of doce and ccyclophosphamide ,  it hit me pretty hard, I guess 2nd time round for me for chemo may make myresponses a bit different , I was starting to pick up then had to start the filgrastim injection  to boost my white cells and neutrophils and ohhhh my body did not like that, they finished a few days ago but yesterday I woke with lips full of cold sores and sore mouth and nostrils , I was besides myself .

I rang the unit, who wanted me in to assess me , so bloods done , inflammatory markers up but rest of them not bad , I was there a couple of hours but saw a doc who prescribed me mouth washes x 2 and cream, reassured me and told me to get in touch if things didn't improve.

I guess what I'm trying to say is don't suffer with side effects ring your units , they were great, understanding and very helpful , so we are not alone there are good people wanting to help 

And we have each other to laugh and cry with Kim  💕💕💕

[Shi]

jukat yes in Oct17 when we weee all going through chemo we all were 😳 with botty block from the steroids and meesh had us all rolling with 🤣🤣🤣with a tip she thought would help 🤣🤣🤣 it really broke the tippy toe politeness we had all been keeping till the and there is still not a day go by when we don’t all speak and 🤣🤣together. Something that was meant to harm resulted in beauty ❤️ And thanks to breast cancer now it gave us this and you are never alone ❤️💕✨✨✨Shi xx

[Jukat]

Bum buttering?....had to check then that I was on the right forum! 🤣

Thank you Shi xx

[Shi]

Jukat, used to start taking senokot day 4-5 after chemo because steroids blocked me up. Everyone is different so find your own routine if you need them ❤️ Some used movicol and most of us had crates of anosol 🤣 not funny but we had to laugh about it, discussing piles and botty block techniques and our oct17 famous bum buttering tips from our meesh 🤣 💕✨✨✨Shi xx

[Jukat]

Hi all

I am on day 4 of E&C and feeling ok so far. The most dramatic thing is my skin flushing, which my steroids say is a common side effect. It doesn't last all day and just looks like I have been enjoying the sun! And my axillary clearance scar has gone a dark pink colour? My temp has been spot on through all of this. 

Feel like I am stood on a cliff edge though, as I know so many say after this point it is down hill. Up to this point I have carried on as usual, washing, cleaning, ironing....don't know how long that will last, which is a bit scary....just got to go with it I suppose.

Little question....is it ok to take to take Senakot or do you always have to get meds from your doctor?

Keep on fighting lovely ladies!

Julia xx

[Niks75]

@louby_lou69 

Thank you for your reply, I have just popped over to your thread and feel reassured at common side effects.

I can’t wait to feel normal even if that does mean cleaning!

Nikki xx