March 2021 Chemo Starters

[broca14]

Hi 😊

Lovely to hear how well you’re doing!

I started back at work in October- phased return. I am a neonatal nurse practitioner. I am now back to full time hours. It’s tiring but doable. 
My son gets married on Friday! So excited for that! I bought my dress pre-chemo and found it didn’t fit having gained 1 1/2 stone! So I set about not eating between meals, doing Joe Wicks 20min workouts and weekly Pilates and now I’m pleased to say the dress fits! 😍

Its amazing the difference a year makes! This time last year I’d found out I needed a 2nd op and also chemo. Instead of long brown (with some grey) hair, I have short curly hair!

All the best to everyone, hope you are all doing well!

Cathy Xxx

[Titch53]

Hi Jewels!

 I had my mastectomy a year ago this week, it seems a lifetime ago but sometimes seems like yesterday! Had chemo then caught covid so radiotherapy was delayed but then finally finished treatment 23rd July! Just before final chemo we got ourselves a Romanian rescue dog, Winnie…she’s amazing!

 I’m a supply teacher and started back September, only meant to go back part-time but ended up full time in a school and have been there ever since! 

Hair has grown back curly!!! Never had curls before-weird!

 Yes the support this group gave was invaluable, lots of love to all of you xxx

[Jewels]

Hello all

How are we all doing now we have been given back our lives??

I'm back to work and am thinking Chemo and Covid were so last year.....

My diary is slowly filling with exciting things to do with my family and friends.

I hope you are all on your way to exciting times too.

A friend has just been diagnosed and I was sharing some of my thoughts with her and it reminded me of all the support that I got from you guys and I just wanted to say a big THANK YOU, I couldn't have got through it without the support.

Lots of love to you all

Julie x

[broca14]

Hi Julie/ everyone,

I completed chemo in June, radiotherapy in July and Herceptin in September. I’m still getting the zoledronic acid 6 monthly infusions. My boob is still tender from radiotherapy and I have a sore muscle across my chest that I’m working on. I have been doing yoga and have just started Pilates to see how that helps. I also still have neuropathy in my fingertips/toes and extremely dry skin.

I am on my third week of phased return to work. So far so good. For me a lot of it is about how different I look. My hair is grey and very short instead of brown and long (with some grey) but at least I now have hair! 🎉

It will take time but I’m sure we will all get there.

Good luck Julie looking for a new job. Hopefully your new start is just around the corner!

Cathy xx

[Jewels]

Hello all

I was wondering how you are all doing, it's been such a tough year for us all and hopefully we can all see a better 2021.

Radiotherapy left me with a very sore boob which lasted for a few weeks but paracetamol kept the aches at bay.

Now it's time to build strength and get back to work.  Although my employers have issued my P45 so I've to look for a new job which I am not looking forward to doing as I'll not be able to return with a phased return but will have to go back full time, which at this present time I would totally not be able to do due to the numbness in my fingers and toes.

Love goes out to all reading this and remember to think of the bigger picture and seeing  what the future holds.

Regards

Julie x

[carrie6]

Hi!

I finished my chemo on 5 July and my radiotherapy starts tomorrow. It's a 2 hour round trip so trying to work out if I can manage to drive myself or not. They said side effects could take a week to kick in (including fatigue) and peak in about 2-3 weeks but to have someone drive me for the first visit and see how it goes. I also have letrozole to take for the next 7-10 years.

My sense of taste is gradually returning - I seem to have lost that vile taste but some things have no taste at all. Nails are beginning to fall off now - trying to keep them on for as long as possible with tape. No sign of hair returning yet so I'm keeping my fingers crossed. I still get the fatigue - I have to do things (gardening, etc) in small bites then have a rest. I also have some residual numbness in the tips of my fingers and my toes but it's not too bad - hoping that will resolve itself and I'm not left with it permanently. The side effects really are horrible, aren't they?

Elaine - I hope Covid wasn't too dreadful for you and that you've recovered ok.

Yes Julie, the worst is over and things are looking brighter. We've a long family weekend by the sea booked for September so I'm looking forward to that. Take care everyone.

Cx

[Jewels]

Hello

I finished my chemo on 13th July and it's taken me a while to feel strong enough to do normal things.  The fatigue hits me quite often still.  The chemo was brutal. I've lost all my fingernails and I still have a horrible taste in my mouth that comes and goes.  I still struggle with food due to the vile taste, nothing tastes good at all.  I'm still waiting for a date to do my radiotherapy, my oncologist changed and is not so good.  I also continue my 3 weekly visits to get my Herceptin injection, that will continue until the end of May!

I hope you are feeling better now, it's sods law that you got covid at the very end, I was waiting for that news for myself but thankfully I've been OK so far.

Take care one and all reading this.  The worst is now over and we can look forward to planning a very bright and happy future.

Love

Julie x

[Titch53]

Hi Jewels!

I finished my chemo on 23rd June-I didnt do too badly throughout but found the last one a real struggle to recover from-could hardly walk up and down the stairs! Anyway turns out I had an infection-they’re not sure whereabouts but ended up being given an antibiotic drip and further antibiotics, started feeling better but now I’ve tested positive for covid! 
Just when I could start getting out n about I’m self-isolating instead! Was meant to start radiotherapy Thursday too. Have you got any radiotherapy lined up? Xx

[Jewels]

Hello all

Well I think we've all been through so much these cycles.  My first Docataxal cycle totally knocked me for 6 and I ended up in hospital, I think I had every symptom going, but with a reduced dose for cycle 5 I have been so much better for that cycle.  Today is my final chemo cycle, Tick, so today I should also get my picc line removed, Tick, but my 3 weekly visits to hospital continue for the next 9 months for my Herceptin injections.

How are you all doing?

Love

Julie xx   

[ems768]

Hi,

I’m late coming to the forum, started chemo on the 18th March.

I’ve had three rounds of FEC and then this week have had herceptin, pertruzumab, and docetaxel.

For me FEC was awful and by the third round I was on every anti sickness and heart burn med going.

I had a bit of reaction to herceptin, headache and feeling a bit feverish but it passed quickly.

I will be having surgery after chemo.

[carrie6]

Hi!

Yes, I think we're all trying to push our way through all of this. 

Hope you're feeling a bit better Julie. I start Docetaxel on Monday (assuming my bloods are ok), so that's three of us on that. It's interesting to hear your side effects Elaine. 

Take care everyone!

Cx

[Titch53]

Hi Julie and everyone!

Yes I feel at the moment we’re all heads down trying to get through it aren’t we?

Sorry you’ve been feeling rough Julie, I had my 4th chemo, 1st Docataxel last week. Didn’t have a reaction, they do s tester amount first and if that’s ok they carry on with the rest. I presume if it isn’t they give something to counteract the reaction?

I actually felt better the first few days than I had with the red devil, no headache! After 3/4 days though the flu feeling I’d been warned about came. I’ve basically just stayed in bed and rested, make sure you have co-codamol handy. It’s that achey bones feeling and v tired. I haven’t found it too bad as long as you give into it and don’t try to do anything strenuous! 
I’ve used this time to watch a new box set on Amazon -This is us! I feel better today so that’s ben about 4 days of feeling fluey and hopefully will be ok the rest of the time!!

Take care all!!! Xx

[Jewels]

Hello all

We seem to have all gone quiet, this is a tough time for us but we can do it.

I've been so unwell since my last treatment but I also had the 2nd covid jab the day after and I've been on the loo ever since, just can't keep anything in.  I'm hoping today will be a better day.

The PICC line was easy enough to have fitted and the treatment went in much quicker and I felt less anxious as I didn't have the cannula stress.

I also start the Docetaxel next cycle along with Herceptin injections and I believe there is a possibility of a reaction to both of these so not looking forward to cycle 4 already.

Keep smiling girls and look forward to the good times.

Regards

Julie

[carrie6]

Hi everyone!

Welcome to the group Broca - we're a small bunch but friendly and supportive! I try to get out for a walk most days. I live in a village so the dry weather (until the last few days) has meant I have been able to use the footpaths across the fields.

Julie - I had my PICC line fitted last week and used it on Tuesday. I wish I'd had it done earlier. I did ask for it after first chemo (my veins hide too) but appointment didn't come in time. Having it put in was fine. They do it using ultrasound to guide it and then send you down to x-ray to check it is in the right place (mine was a bit high) so I had it have it readjusted and then back to x-ray. I have got a sleeve so I can shower (you can't get it wet). They gave me a request for a prescription I could take to my GP but decided to buy the same one (Limbo waterproof protectors) online direct from the supplier as that was quicker - it arrived the next day. Works really well - far better than the clingfilm and tape job I had to use on the first day! She did say thought that I can't lift anything much with that arm - no hoovering either! She didn't seem keen on me exercising that arm (I usually do Pilates) other than gentle stretches as apparently the line can move (though that may be the vein she had to use in me).

Elaine - sorry to hear this round has been tougher. I'm only on day 3 and not much different yet to last time, though a bit more tired I think. I start on injecting the Filgrastim today and that is usually when I take a dip - probably as I have joint problems anyway. I'm not looking forward to starting Docetaxel next round either. You hear of so many side effects. Though the lady next to me at the chemo suite on Tuesday was on her fourth round of Docetaxel so I asked her about side effects - she hadn't had the bone/joint ache much and her finger nails were still ok (she used nail oils not dark nail polish), though she said her toe nails weren't so good and she had been very fatigued, constipated, plus the hair loss. As we keep hearing we are all affected differently. Do you have to take a double dose of the steroid the day before and a few days after? I'm not looking forward to that I've cut my steroid from 4 tablets a day to 1 a day this time. Will you be having Zoledronic Acid too? I am supposed to be having it six monthly but not sure when it starts. Do let me know how it goes on Docetaxel.

So, an update following my 6 hour visit to the hospital. Had a Dopler scan 2 days later and they found a couple of blood clots - one in lower arm and one in upper arm. So will be injecting for 6 months probably. They sting a bit and parts of my stomach are now covered in bruises (the worst bruise is from the one I was given at the hospital!). Still, good that it was spotted! I'm convinced it was from my second chemo - at one point it didn't feel right and they stopped and checked but said it was ok. Also, I cold capped for the first two times but hair was getting quite thin so the wouldn't let me cold cap this time - at least that means I'll spend less time at the hospital and I already have my wig!

We're all around (or over) halfway now on chemo!!

Cxx

[Titch53]

Hi Broca welcome to the group!

Sorry it’s taken me some time to reply -I’m on my 3rd chemo and have found it rougher than the previous 2. Been really tired, off my food etc -starting on the Doctaxel Wednesday, not looking forward to that, anyone else had it yet? 
I like walking too Broca especially as it’s been something we’ve been able to do during lockdown though only locally, nice to be able to go further afield now. 
We have Snowdonia an hour away but think that would be too much for me at the moment! 
Hope you’re all okay and managing to cope with the chemo!

Love to you all!! Elaine 

[Jewels]

Hello all and welcome Broca.

All our treatment is so different but it feels like we are all experiencing similar side effects, the first 9 or 10 days are terrible and then it starts to feel so much better.  I feel like a normal person today (day 16) as I went to the local nature park with my Grandson and Daughter, was so nice to be out in the fresh air.  I've felt very fatigued this time so haven't been out hardly at all.

It is so odd a feeling isn't it that this is happening to you, no matter how many times you visit that hospital it doesn't feel like I'm there for my appointment.

I'm getting a PICC line fitted on Monday ready for my next cycle on Tuesday as my veins do a runner when she comes near them with a cannula, so it may be a bit of a pain to keep it in until the chemo is finished but it will be much easier in the long run.

I hope you are all feeling well.

Julie x

[broca14]

Hi everyone,

I have only just joined this forum, but I was diagnosed with breast cancer Christmas week. Initially thought to be DCIS, but turned out to be invasive ducal carcinoma HER2 +. I had an initial wide excision of the area, then after getting my results went on to have a sentinel node biopsy which was clear.

I then started chemotherapy 17th March. I am having a weekly course of Paclitaxel for 12 weeks, 3 weekly Herceptin and 6 monthly Zoledronic acid. Is anyone else having this course of treatment?
I have now had my 7th week of Paclitaxel and it hasn’t been as bad as I’d envisaged. I love walking and that has been what has kept me going!

Even though I’m going through this treatment, some of me still can’t quite believe it is happening to me - it’s someone else!

Anyway, lovely to read all your stories. Good luck to you all with your treatment 😘

[Titch53]

Hi Carrie and everyone!

Ooh I hope you’re okay and you can have your chemo next week-why are you having a picc line? I’ve wondered what the reasons are for people having them. Is it if it’s a struggle to get a canula in your veins? 6 hours is a long time-hope you’re ok.
Had my 3rd last week and yes has been cumulative-taken me longer to recover, been v tired and taken the extra anti-sickness pills was given few times. I had to phone the unit day after chemo as really wasn’t happy as nurse who did it kept asking how certain things were done? Made me feel really uneasy. I know this must be rare as the chemo nurses are great but there was no water, wasn’t offered tea/biscuits as usually am but main thing was I just didn’t feel confident with her. Had good talk with head nurse (didn’t want to make official complaint as we all have bad days) but told her it’s hard enough going through this as it is. 
She reassured me they’ll talk to her and I won’t have her next time.

 Not looking forward to 4th and the Taxol but good to be halfway! 
Take care all-lotsa love! Elaine xx

[carrie6]

Hi Everyone

I think my treatment sessions are out of sync with the rest of you! My third EC session is due next Tuesday (since Monday is a bank holiday). Had my PICC line fitted today - supposed to take about an hour but I ended up being at the hospital for over 6 hours. Short story is they think I may have a clot (hence the pain in my arm) so I’ve now got blood thinning daily injections to self administer while I wait for a scan appointment. Not sure if that will delay my next chemo - I guess I’ll find out on Friday.
Lindsay - how is it going this time? I do hope the reduced dose means there will be fewer side effects than last time.

Julie - hope yours went as well as last time.

Titch - you’re half way! Any sign of cumulative effects? 
Be kind to yourselves everyone!

Cx

[Linds7oaks]

Morning everyone 

Thanks for your lovely messages. I felt good in week 3 of my cycle, thank god, probably helped by the hospital agreeing to reduce my chemo drugs by a quarter and give me stronger anti nausea drugs (aprepetin).

We shaved my hair as even once it was short, it was all coming out. I am now a patchy grade 2. I am going wig shopping today and am hoping for that just stepped out of the salon look too Carrie! I am happy being almost bald at home, we’re all used to it but I just want to look normal when I leave the house.

 I also asked for sleeping tablets as I literally don’t sleep when I am on two doses a day so they have given me 3 nights worth and I slept well last night. Another improvement!

Julie,? I hope your cycle went well yesterday and recovery this week is ok. 

I am worried I might go downhill again this time. I am trying to be positive but it’s a bit of an emotional rollercoaster!

Carrie, good luck with the picc line. It will make it a lot easier. I had a portocath fitted last week which all went really well. I have to be very careful about lifting for a couple of weeks (poor me, no vacuuming!) and it’s still tender and bruised but it made it so much easier yesterday.

Good luck to you all with your cycles and recoveries this week. There are good days and bad days but we’ll get through it together xxx

[Titch53]

Hi everyone 

Lindsay hope things are better for you now!

Jewels hope your chemo goes well today I’ve got my 3rd today-halfway yippee!!

Do you have steroids before EC then? I have them from today till Saturday though know I will have them before the Docataxel infusion on my 4,5,6 cycles.

Take care everyone! Xx

[Jewels]

Hello all

Well today is FEC cycle 2 for me and the steroids kept me awake most of the night again. 

I'm hoping this cycle will go as well as last time as not so bad for me just 2 bad days feeling like a bad hangover and then the other symptoms such as mouth ulcers, feeling cold all the time, funny taste, tiredness followed but I felt mostly ok ish from day 11 to 21. Oh yes my hair has thinned lots too.

Hope you have all been feeling better too.

Have a good day

Julie x 

[carrie6]

Oh my goodness Lindsay - what a time you’ve had of it. How did it go with the oncologist on Wednesday? Hope you’re feeling more yourself this week. I’m now a week past my second session and beginning to feel more like normal again. I am having a PICC line fitted next week as they’re having problems finding my veins. Have also seemed to develop cording into right breast as a result of SNB and pain in inside of left elbow when I straighten it - not sure what that is so I guess I should ring them up! I cold capped again but had already started losing hair and they rubbed the conditioner into my scalp which meant my hair got knotted and loads came out when I brushed it. Oh well - guess it was more or less inevitable! Got a wig referral and went to the shop last week with my daughter and now have a lovely wig - it looks like I’ve just come out of the hairdressers though which is not my usual look!!

Take care everyone 

Cxx

[Shi]

Lindsay 😁great news neutrophils up and you are home safe ❤️ Titch 💃🏻💃🏻 Well us oct17 chemo gang 💃🏻💃🏻💃🏻 Our way through it was the may17 gang who started us off 🤣🤣 back in 2017 we were all jumping in and out of each other’s threads, they were passing their knowledge on to new threads ❤️ It helped us a lot ❤️💕💕✨✨Shi xx

[Titch53]

That’s great news about your neutrophils Lindsay and so glad you were looked after and got plenty of rest!

I’m finding that my taste goes during the first week to 10 days then comes back along with a huge appetite! But not so much for sweet stuff! I thought I’d lose weight during chemo but I’m now heavier than I’ve ever been and that’s with one less breast! Not too bothered though-I’ll work on that side of things when treatment has finished as I think we need all the treats we fancy with what we’re going through!

Continue resting and hope everyone

else is fine! Shi I’ll do that dance anyway!!😂

Elaine Xxx

[Linds7oaks]

Dear all 

Good news! My neutrophil count is fine now and I was discharged yesterday feeling so much better. Such a relief to be home and me again! 5 days of bed rest along with lots of drugs did me so much good and I am so happy to be feeling ok again. 

As you say Elaine, my oncologist will surely adjust the second cycle as I can’t go through that again! I am seeing her on Wednesday so not long to wait.

How long are tastebuds affected? I can still only drink water and some things taste really odd still.

 Thanks for your support everyone,

Lindsay x

[Shi]

Lindsay ❤️ Hows that neutrophil count doing🤞 March gang it’s time for you all to do the neutrophils blood dance for Lindsay 💃🏻💃🏻💃🏻💃🏻 (This is something May17 chemo thread started and has worked like a charm when anyone’s got low neutrophils) so Lindsay pick a tune and everyone will be doing the neutrophils blood dance for you 💃🏻💃🏻💃🏻👭 💕💕✨✨Shi xx

[Titch53]

Oh bless you Lindsay! Sounds horrendous but at least you’re in the best place and being looked after! I knew you meant wig..I speak  ‘autocorrect’!!🤣

Right well I’m sure your oncologist will do everything in her power to avoid this happening again-it must be a tricky thing to work out with so many people reacting in such different ways but I reckon your reaction must be on the extreme side but nothing they won’t have seen before. They won’t let a repeat of that happen.

Try to enjoy being looked after while you’re in the hospital and you are getting nearer the finish line everyday though sometimes it feels like we’re dragging ourselves towards it with rather than running! 
Lots of love-Elaine Xxx

[Shi]

Lindsay ❤️ Sorry you’ve found yourself with a casa nhs stay ☹️ The good thing is you are being taken care of and getting everything you can to ensure all safe. If you are on 3 week cycle your neutrophils can go nadir days 8 - 15 and then they bounce back, it happened to me on first chemo, had 6 days in casa nhs. My onc reduced dose to 80% for remaining ones and all ok, had my fluconzole to head off thrush mouth, kept vigilant if my wee burned with no temperature ( that was a uti that landed me the 6 day stay) and just kept ringing the rapid response line if I was unsure of anything. Sending 👭👭👭 and hope your neutrophils bounce back soon ❤️💕💕✨✨Shi xx

[Linds7oaks]

Apologies for the typos and odd phrasing in my previous message! I am using dictation and sometimes it throws a bit of a curveball! Try to use your imagination as to what I might mean .... For example the week lady is the wig lady 😂😂😂

[Linds7oaks]

Morning all,

Unfortunately things got worse for me . I felt increasingly dreadful over the weekend, so much so that I could barely sit up or do anything. My eyesight went back to normal after a few days, that’s interesting that your oncologist and NICE said it can be an on common side-effect Carrie. On Tuesday I called the emergency chemo line I’d been given and they said that I need to increase my anti-nausea meds but as I had a temperature I had to go via A&E. Because I was in such a bad way when I got to hospital, they put me on IV antiemetics, IV antibiotics and IV fluids. They then admitted me and I have been here ever since. Blood test showed that my neuro fill levels were practically non-existent so they have to keep me in until they are at a safe level to go out. They also want to get the blood cultures back from the lab to see whether there is an infection or not before I go. I also developed a horrible lumpy itchy red rash all over my chest and neck so they have given me more steroids and antihistamine and that has helped. I have been on fluids, antiemetics and antibiotics via a drip ever since and I’m feeling so much better now, thank goodness! I’ve been well looked after in hospital in a private room getting lots of rest so it’s really not been too bad. I am just so worried what the next cycle will be like. My oncologist is aware that I’ve been in here and I will meet with her next week to review things I am really hoping that she reduces the chemo dose as I honestly don’t think I can go through this again, it was so hideous.

I am glad you’re coming out of the yuck Titch53, and starting to feel yourself again. I am too and it’s such a relief. My tastebuds are affected-I’ve gone off anything sweet and anything I can drink is water, not even my beloved Yorkshire tea. I can cope with that, after feeling so bad the minor side-effects are totally bearable. I’m even feeling okay about losing my hair, after the way I felt. I am meeting with the week lady on Wednesday and I think I will shave it as I’m not sure I’ll be brave enough to cope with the clumps on the pillow.

has anyone else signed up for the someone like me service? I have spoken to my volunteer a couple of times and it has been so useful. She is such a lovely lady who went through the same kind of breast cancer resided in the same treatment and has given me so many useful tips more than that just so much kindness and understanding. My best friend has done the 100 km challenge for breast cancer now in March and raised almost £1500.

I hope you all stay well lovely ladies. Good luck to anybody starting treatment soon.

Best wishes, Lindsay x

[carrie6]

Hi Everyone

Just had my phone check up with a senior nurse and bloods are all fine so all set for second chemo session on Monday. I'm hoping that I follow the same path as last time and after a crap first week will start to feel well again. Had a few hairs start coming out when I brush my hair since yesterday but going to continue with cold cap. Anyone had any hair loss elsewhere? 

Lindsay - I hope you're feeling better by now. Make sure you keep a note of how you're feeling and when you have your next pre-treatment check in they'll ask about your symptoms and look at adjusting your side effect medication. That is just what happened with me - I'm getting something for indigestion and a mouthwash for dry mouth, plus been told to start taking my constipation stuff from first day. I had a bit of blurred vision on one day - I mentioned that and he said an uncommon side effect was that it affected your eyesight - though I'm on EC. I couldn't see anything on the side effect info I'd been but I looked on the NICE website and visual impairment was a rare side effect. My eyesight seems to have returned to normal now.

Elaine - I made a mistake on the first two days and only took 1 of the steroid tablets twice a day instead of the two twice a day I was supposed to take, then on day 3 I realised and switched to two and then couldn't sleep. He said they are to stop nausea and since I didn't get any nausea to just try one this time and switch to two if I need too. He said everyone's different (of course!) and some people might not need to take any.

Hope everyone is getting on ok - or as ok as it can be.

Cxx

[Titch53]

Hi Lindsay

I’m really sorry you’re feeling so rough-I know everyone reacts differently and although I think relatively I’m not doing too badly, generally I do feel pretty crap! I had a really bad day yesterday where I felt just toxic. The taste has gone so everything tastes horrible but I’m coming out of that first week yuckiness and beginning to feel a bit more human. Have you got an appointment with your oncologist before your second dose? I had one the morning of my 2nd chemo and he went through how I’d reacted with the first. I’ve got another appointment with him before my 4th. Definitely speak to someone at your unit. I know they want to get us through this as unscathed as possible. 
Don’t know about the eyes I’m afraid but there seem to be so many side effects!

Hope things improve for you xxxxx

[Jewels]

Hi Lindsay

I've only had 3 days of steroids but gave up trying to sleep whilst on them. The few days after I finished I continually slept. 

I have the mouth ulcers and rang the chemo line to be told I should've been given corsodyl mouthwash in my pack or to go ask a pharmacist or call my Doctor, very unhelpful indeed, plus I've not been given a pack of anything apart from the tablets I needed to take. 

I think I'm feeling more like the old me today apart from the mouth and being cold all the time.

Have your eyes settled down now. If you give specsavers or somewhere similar a call they may well see you or offer some advice.

I hope you feel better soon as feeling this out of sorts really does get you down.

I'm going to make an effort today and go out in the car.

We will have a good day today!

Julie x

[Linds7oaks]

Hello all,

Things haven’t been going so well for me. Since Friday, I felt really rough. I feel really weak and totally yuck. I’m usually really positive person but I’m struggling to say anything positive at all at the moment. my sleep has been really affected, I have been awake so much in the night which is like torture but one good thing is that I did sleep better last night now that I have finished the steroids. I’m really hoping that I start to feel better soon. If I don’t, I will give the hospital a call to see if there’s anything they can suggest.

I’m really hoping that I start to feel better soon. If I don’t, I will give the hospital a call to see if there’s anything they can suggest.

One strange side-effect is that my vision has been blurred. This doesn’t seem to be common and I suppose it might be unrelated to the chemo. When I called the emergency chemo number they told me to get it checked out at hospital but to be honest the doctors at the hospital didn’t seem to have any idea why it might be, so suggested I went to the optometrist! 

All in all, my first cycle has not got off to a good start. Sorry to moan on, but perhaps some of you might have some tips or have been through something similar.

lindsay 

[Jewels]

Hello all

Well the side effects have been mainly the huge hangover effect!  My head has been banging and I just want to sleep, I can not be bothered to do anything and I'm so cold.  I'm feeling brighter today though, so far so good.  

The injections are fine, just tried not to think about what I was doing and to think of the good it was going to bring me.

I'm struggling to concentrate today so will keep this short.

Speak soon 

Julie x

[Titch53]

Hi all!

Lindsay -I really hope you’re feeling better and the wobbliness has gone! The constipation is a nightmare isn’t it and if you suffer with it anyway. I’m taking Senokot in the evening for the first week, so far so good. 

Carrie the wig appointment went really well -I’d already looked at their online selection and screenshotted a couple I liked (I’ve always had a short pixie style) and the lady dealing with me got excited as she had exactly my colour for that style in stock so I got to take it home that day! I basically walked out of the shop wearing it!! I drove straight to my best friend (we stood outside!) as I knew she’d give me an honest opinion and she couldn’t believe how close it looked to my real hair! I’m not wearing it in the house -just for going out to appointments and stuff but it’s really comfy, doesn’t itch which is what I was worried about!

Good luck with your appointment!! Oh and I’m a supply teacher so will just go back slowly and work up to my old workload slowly! My boss at the agency is great! And you’re a fellow Welshy too!!!🏴󠁧󠁢󠁷󠁬󠁳󠁿

Strange question but does anyone know what would happen to us if we didn’t take steroids for those 3 days after EC? They seriously make me retch -in fact I deal with injecting myself in the stomach  better than I do with taking steroids!!🙈 

I seriously need to stop being a baby!!! 

Hope you’re all okay!! 
Elaine xx

[carrie6]

Hi All

Hope you're all managing to enjoy some of the bank holiday weekend - shame about the weather comapred to earlier in the week!

Lindsay - hope you'll start feeling better soon. You're on a different chemo regime to me, but my worst days were 4/5 due to oral thrush and constipation. I'm feeling pretty much normal now. It's so great that you were able to donate your hair to Little Princess Trust - at least something good out of all this.

Julie - it's good to hear it's going well so far and good luck with the injections - fingers crossed you have no side effects. 

Elaine - it's reassuring that you're feeling similar to last time as I did wonder how the cumulative effect would work. How did your wig appointment go? I have just asked for a wig referral as I don't have high expectations for the cold cap (if it does have any effect then it will be a lovely surprise), though I will keep going with it. Just waiting to see what happens in the next couple of days. I'm also aiming for September as back to normal - we need to have something to focus on. But teaching is such a full-on job - hopefully you can start back part time if you're not quite there by then. I hadn't realised you lived in Wales - I am from a Welsh family, but they're from South Wales and I am now living in England.

Do any of you have a PICC line? Apparently my veins like to hide and with only 1 arm they can use I'm in danger of cording of the veins, so it's been suggested that I consider one.

Cxx

[Linds7oaks]

Hi all 

I hope your second cycle continues to go well Elaine. How annoying to miss out on the party but still have the hangover! 😂

Julie, I hope you feel ok with no anti nausea drugs and the injections go ok. I have to start the injections tonight too.

I feel really rubbish today unfortunately. I feel nauseous and wobbly, despite the anti nausea drugs. I am prone to constipation at the best of times, so I have been taking plenty of my normal constipation medication to try to relieve things. It wasn’t working... until this morning it really did (so sorry, way too much info!!). So this is probably not helping how I am feeling. Hopefully it will pass as it’s disappointing when I was feeling so well. But there will be good times and bad in this whole process...

Best of luck to you all, I hope you get to enjoy your Easter weekend,

Lindsay xx

[Jewels]

Hello all

I'm doing much the same as you Lyndsay. I feel fine just can't sleep either. 

I'm going with no anti-sickness tablets today so will see how that goes. My next lot of drugs are on Saturday, day 5 to 10, where I have to inject myself to help repair the white blood cells.

I'm feeling much calmer. The experience in the chemo suite was good. I did get a sandwich and cuppa for lunch. 

As I'm having FEC-TH treatment I just had the 3 drugs FEC which only took about 2 hours all together in the chemo suite.

Elaine it's really good your symptoms are the same this time and an Easter egg, what a bonus. 

Have a great day ladies Julie xxx

[Titch53]

Hi all!! 
So glad your first one went well Lindsay!! Fingers crossed you’ll continue feeling ok! I found my first night was the worst and then I improved so no downhill after 3 days. Had my 2nd round today and feel the same as last time. Basically feels like a hangover but without the good time the night before!!! 
On the plus side the chemo nurse gave me an Easter egg!!!😁

Hope the rest of you are all ok!!

Elaine xx

[Linds7oaks]

Hi, my first cycle has gone really well so far. Far better than I had hoped, although I was advised side effects can appear from day 3. But all I can do is enjoy it while I feel good. I slept terribly last night due to the steroids and my face was a bit flushed but that’s about it at the moment. I was in yesterday and today as I am on TCHP, which is immunotherapy and chemo.

How did your first session go Jewels?

We cut my hair really short at the weekend as I am not going to cold cap. It looks horrendous from the back so I am avoiding looking! The good thing is that I have 38cm to send off to the little Princess trust, a rare positive at the moment!

Hope you’re all doing well.

Best wishes 

Lindsay

[Jewels]

Good luck today Lyndsay. I hope we have as good results as the others have had so far.

Slightly anxious, I have a banging tension headache but am glad it's now starting. 

Have a good day ladies

Julie x

[Shi]

Carrie yes oral thrush quite common usually fluconzole prescribed for this, might be worth mentioning to your team before next chemo to see if you can have in your meds bag ready for next time if it flares up again ❤️ 💕💕✨✨Shi xx

[carrie6]

Hi Elaine

i think we’ll be getting used to these minor panics. I had something similar on Friday and my tongue was slightly white - so that was oral thrush and fairly common I think? Rang the onco line who told me to get a prescription from my GP. All sorted very quickly. If in doubt, ring them! 
Hope you’re feeling better soon and all goes well on Wednesday.

Cxx

[Titch53]

Spoiler

I’m panicking a bit this morning! Got a bit of a sore throat this morning and got my 2nd chemo Wednesday! Don’t know if sore is the right word..hurts a bit when I swallow. Just hope I haven’t caught anything off my girls now they’ve been back to school! Oh well..I’ll find out as have my blood test tomorrow!! 😬🤞

xxx

[Titch53]

Hi everyone 

Just a quick one but Carrie you were asking what route I’m taking re hair covering. All routes really, I’ve got lots of nice caps (Search chemo headwear Amazon, some lovely ones there but am also trying to support small businesses) Today I have an appointment at a wig place in Chester (I live in Wrexham, Wales) Had a £90 voucher but will probably have to add a bit, always had short pixie cut and they’ve got some lovely styles. It’s mainly for when I go back to teaching (don’t know if I’m being over-ambitious but I’m hoping to go back September?). I also want to have a go at some of those scarf tying tutorials on YouTube! Might as well try and have some fun with all this!

Have a good weekend everyone!!

E xx

[Jewels]

Hello all

I have been reading the ticking off breast cancer book by Sara Liyanage, it’s really informative. 

I also read on a Bee cushion on amazon, “Bee Bold, Bee Brave, Bee You” and I thought of us with our soon to be bald (bold) heads and us needing to put on our big girl pants and be brave and not forgetting that we need to be kind to ourselves.

It is really encouraging to hear that you have not felt as bad as you thought you would, I’m feeling anxious for my first cycle on Tuesday but knowing you have not found it as bad as expected makes me feel so much happier.

Have a good day all

Julie x

[carrie6]

Hi all!

Been feeling surprisingly ok - I know it's only the first round but I'm keeping positive. Managed a walk each day - and a pilates session yesterday - and feeling a little bit more tired than normal, but not too bad. Have been going to bed earlier and waking up earlier - though that may be the birds who seem to be trying to nest in our guttering!

Had to do my first injection for bone marrow neutrophils boosting today which I was dreading but luckily a friend who'd just done Covid vaccinator training offered to do it for me - but I intend have a go at doing it myself before long.

Elaine - I think you're just over a week ahead of me so looks like I'll know in just over a week's time if the cold cap is working at all. It's good to hear that you took control and felt ok about it, and Sinéad O'Connor is a great look!. Are you going down the scarf or wig route or leaving it bare? Hope your treatment next week goes well and you are able to celebrate your daughter's birthday.

Hope everyone's having a good day?

Cx

[Kiti]

THis is Kiti from America. I'm putting this out there for whoever may need it. I have been battling the strangest side effect from my chemo (TCHO). My face broke out in spontaneous subcutaneous eruptions. I feel like I am back in high school due to the severity of it. 

The Cancer Care folks here say it's common but it is painful. I'm getting antibiotic face gel to put on it. I have been self treating it with castor oil on the surface. I am told that it can also happen on the scalp. So I may have gotten the good end of this. lol.

Sounds like things are going well for many of you and that is great to hear. I am awaiting my next chemo round on April 1. 

So to all and sundry: Have a good week.