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March 2020 Chemo Starters

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Re: March 2020 Chemo Starters

Hi everyone! 

Another glorious day 😎☀️ Hope that you are all managing to enjoy some of it! 

Day 8 since 2nd round of docetaxol and definitely feeling more human. Had horrible bloating and chemo belly for 2 days but drinking more water has sorted that and my cotton wool mouth has settled down too. 

Been booked in for a CT scan next week as part of radiotherapy planning although still not clear how many rad sessions they want me to have. But they seem keen to get treatment wrapped up ASAP and believe rads will start 3 weeks

57505E30-02FB-46A4-B21B-774251E5B0AA.jpeg

after my last chemo on 10 June. 

In the meantime, time in the garden! Sending some virtual roses and hugs to all of the lovely women in this group. Take care all xx 

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Re: March 2020 Chemo Starters

Thank you all for your help around T and the reassurance around the anti sickness meds...I too had steroids the day before, yesterday and two more doses today...They did give me a strong anti sickness just before I had my treatment.

 

So, so relieved I didn’t have an allergic reaction as that felt like a very real fear!

I agree so much with you all around his lucky we are to have each other to check in with and share. It’s hard explaining everything to people who aren’t going though the rollercoaster and I get bored of talking about it all and like to try to keep my mind distracted (for as long as I can manage my concentration 😉

I’ve noticed this morning that I don’t feel as out of breath so far with this dose which was very weird for me on the EC.

on the days I can I get on the exercise bike (slowly) and it’s been good to be able to build up to an hour on a good week 🙂 I can’t wait to go out walking properly but that’ll be after radio I think.

 

i think trying t think of how to go ahead with our lives after cancer and in the Covid changed world will take some processing And my counselling head tries to work through some of it gently now...it’ll be good to do some work alongside another counsellor when I can though xx

 

Take care everyone and I hope the pains, pins and needles, tiredness ease xxx

 

 

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Re: March 2020 Chemo Starters

tmmorris 

I totally agree that both of our children are at a young enough age to cope seeing us go through this.I totally share your thoughts on this though it’s just so hard as they shouldn’t have to see it let’s face it.I know what you mean about us being vulnerable though too as I’m forever explaining that we can’t do certain things and that he wouldn’t have been able to go back to school whilst I’m in treatment.he has accepted this and like you we do what we can to be honest where we can be without scary him obviously.i still have little meltdowns about it from time to time but I’ll not worry about that.

what you said about cancer changing you really resonates with me for sure.My perspective on nearly everything has changed without me realising it I guess.All positive though as I’ve not given enough care to myself but have always given it all to others -not from now though.

you are correct about being on here as we all get it and have each other’s back which is really comforting.

sending hugs 🌸💕

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Re: March 2020 Chemo Starters

Check with your teams about tingling in hands and feet when on t, they need to keep check on you do no permanent damage is done to nerves in hands and feet ❤️💕💕Shi xx

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Re: March 2020 Chemo Starters

Hi tmmorriss,

Did your back pain stay throughout or did it ease at all? I took paracetamol yesterday as throughout the night I kept waking up in pain like it was in spasm. I’ve have had baths and I’m using a hot water bottle too! 

Have you experienced any tingling in your hands? Last night and today I noticed my right hand had a weird tingling sensation in it 😕 

I'm glad you haven’t had any sickness, it definitely makes it worse with sickness doesn’t it! 

xx

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Re: March 2020 Chemo Starters

Hi Nicole,

I’ve had lower back pain too with the docetaxel. I was told by my clinical oncology nurse that I can take paracetamol for it if needed providing I check my temperature before taking it. I didn’t first time around but might this time depending on how bad it gets. 

Glad to hear you haven’t needed the anti sickness. I got given 4 before having my docetaxel and the just in case ones which I must admit I’ve taken today as a precaution although I haven’t actually experienced any nausea yet. 

Hope you get through the rest of the cycle without many other side effects. 

love and hugs to all 

🌹💖🌈

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Re: March 2020 Chemo Starters

Hi Jowels,

Lovely to hear your son made you a card and as you say you can keep it for when you do finally finish your chemo. I’m surprised how my 5 year old daughter has managed to adapt too. Felt a bit sad earlier today as she started talking about her 6th birthday party in October and how she wants a soft play party again. I said we’d have to wait and see what was happening with the virus when in actual fact I know I’ll still be vulnerable due to the targeted therapy and who knows what the virus situation will be by then. I’m relieved the decision to send her back to reception in June has been taken out of my hands as the school has made it clear not to send any children back If they live with someone who is vulnerable. 

I’m lucky as a stay at home mum I don’t have any decisions to make about returning to work. I think you’re right to take things slowly and have a good think about returning to work and changes you might like to make. 

I have no idea what my new normal will feel like as I’ve read it’s quite common for people around you to assume it’s all behind you once treatment finishes but personally I think cancer changes you on so many levels. As well as coping with treatment it’s also made me question what’s important and what I want to do with my life, things I’d like to achieve and places I’d like to visit (when we can finally visit places that is). 

I journal every day which I find therapeutic and hope to get back to some basic level of fitness once my energy levels can cope with it. Wish we’d managed to get a treadmill before the pandemic hit as the fold up one my hubby liked is now like gold dust. He’s set up an old exercise bike for me so hoping to make an effort some day soon. Nice and easy to start off with. I wasn’t a really active person before but miss my daily walks even if it was just for the school run or to the shops and back. 

This forum has been a real life line for me. It helps to talk to others who are going through treatment at the same time and share hints, tips and experiences. My mum friends don’t really understand why I’m being so cautious or how dangerous it could be if I sent Isabella back to school and she brought the virus home. I’ve even been asked how do others cope as lots of people will be in the same boat as me. 

I keep telling myself that hopefully at age 5 my daughter will have other happier memories later on that replace watching me go through cancer treatment and at least she doesn’t have the fear that I could die or how serious a disease cancer can be. We’re kept it simple and as least scary as possible which she seems to be coping with. 

Hope you’ve been able to enjoy some of the sunshine today. 

love and hugs to all 

🌹💖🌈

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Re: March 2020 Chemo Starters

Hi Gem,

I had steroids to take for three days which were the day before, the day of chemo and the day after. Also had the injections for the 7 days. I didn’t have any anti sickness before or after the session, I asked my chemo nurse about taking the rescue anti sickness if I feel sick and she I can but probably won’t need them. I haven’t felt sick since and my session was last Wednesday.
I felt okay the first few days but now I’m contending with lower back pain 🙄 

Hope this helps and you’re feeling okay! 

xx

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Re: March 2020 Chemo Starters

Hi Gem333

My anti sickness meds were also changed when I started on docetaxel. I was told I only needed the 3x a day one and not the stronger stuff as I was taking steroids already for 3 days to help with the docetaxel. I haven’t experienced the nausea yet with the docetaxel but have kept taking the anti sickness just in case. Sounds like we’ve got the same meds. 

Last time my side effects kicked in on Friday after chemo on Tuesday. I was warned the 1st docetaxel would be the worst as there’s late side effects from the previous drugs and early side effects from the new one. I certainly hope so. It seemed to take a lot longer to pull around from the docetaxel compared to the previous ones although I’d been warned that fatigue and side effects are cumulative so will gradually get worse the further we go thorough treatment. Having said that I still had good days before the next cycle was due so there is light at the end of the tunnel. 
Hoping your side effects aren’t too bad.  
love and hugs to all

🌹💖🌈

 

 

 

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Re: March 2020 Chemo Starters

Gem 

glad you had no reaction.Im not on the T but sure the lovelies on here will have an answer for you 

hope side effects are manageable 💓🌸

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Re: March 2020 Chemo Starters

hi all,

sorry underline is on abc won’t go off...

I had my first T today and relieved to say no allergic reaction. Weirdly I’ve only got steroids to take tomorrow...with my gastro tablet and then 7 days immune boosting injections but no intense anti sickness meds...anyone on the same regime? I was so surprised they have given me some anti sickness just in case that I can take if needed up to three times a day but surprised not to have the strong anti sickness - just wondering if anyone ruse has the same? Xx

 

 

 

 

 

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Re: March 2020 Chemo Starters

Tmmorris 

so pleased you also approaching your final chemo.i bet you can’t wait to ring that bell 🛎 

we have got our heads round me having two more -although my 5 year old son was a bit sad as he had made me a card saying how happy he was I’d finished and how brave I was ❤️The card is still up as I’ll get there.Luckily children adapt well but I do hate him having to go through it.Im sure we all in the same boat with all our families.he also is missing his nana,grandad and Aunty.so hard.

i really know what you mean about being out in nature -that’s what gets us through bad times isn’t it and of course seeing the people we love.

i keep telling myself it won’t last forever although it feels like it will.

i wonder how long it will take to feel a new normal after all this.Im in no rush to dive back in to work and I’ll be making changes for sure.Cancer certainly gives you a new perspective.

pleased you got some info from cancer hair care I’m going to get in touch with them too 🥰

hope s/e aren’t too bad and sending hugs 💓💓

 

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Re: March 2020 Chemo Starters

witchhazel 

so sorry you feeling so rough I can totally relate.The mouth thing is ever changing.I started drinking tea after my 3rd ec.But I’ve struggled with thrush each time and I’m on second lot of fluconazole now.

i do wonder if things are just tasting strange until we finish.Im still using plastic cutlery to avoid the metal!

glad you picking up a bit hope it continues

sending hugs 🥰

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Re: March 2020 Chemo Starters

Hi shefgirl

thanks for the info on hair -I’m going to have a look at this.I miss my lovely long hair so much now.

i wanted to say I know so what you mean when you talk about the mental health challenges.I feel I have had little to no supper really this whole journey with the exception of you lovelies on here and my family and friends.I am lucky in that I was able to self refer to community mental health team when I got diagnosed.My counsellor is amazing and has continued to help me via phone consultations for months now.We use CBT and strategies to help me manage.I do a lot of work myself at home but feel that I wouldn’t have managed without her support.I journal every day and my yoga also helps.Especially given I can’t run at the minute.

The look good feel better courses-I emailed them and they said to email them again in June to see what plans are in the process -if you email them they may be able to help.Hope we can access something though as I’ll need some prep and advice when looking at getting back to work (which I’m not rushing ).my job is quite stressful and hard so will certainly be a phased return.

I’m so happy you are nearly finished chemo 🥰 I know you have your radiotherapy to do yet.Do you know if you are to have less sessions due to covid?im hearing this is the norm now.

hope you have some treats for your last chemo -🍺🍷💐🌸

massive hugs ❤️

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Re: March 2020 Chemo Starters

Hi Shefgirl,

Thanks so much for the cancer hair care info. I’ve had a quick look at their website and will be requesting a free pack from them. I don’t need a wig as I managed to get one pre lockdown but some of the other stuff sounds really interesting especially info on how to look after your scalp. 

My GP surgery said that they had a counselling service available when I mentioned I’d been feeling a bit down during a PICC line flush and dressing change appointment. I didn’t take them up on it at the time as I didn’t feel I needed it just then. I’ve had depression before so I know what some of my pick me up activities are that can help. For me it’s making jigsaws as it gives my mind something to focus on. I do really miss going out for walks in the countryside though as my happy places tend to be woods, gardens and the beach. And meeting up with friends for coffee and cake. But for now I’m staying safe indoors apart from medical appointments.

However, having said that, I’m expecting it to hit me once treatment stops and I’ve got time to stop and think about what I’ve been through as from what I’ve read this seems quite common. Ironically I’d put my name down for a Moving Forward course near to where I live for June this year but that was when I got a Ductal Carsinoma In Situ (non invasive breast cancer) diagnosis 17th October last year. Treatment then was due to be a lumpectomy followed by 3 weeks radiotherapy. That was before my lumpectomy showed HER2 positive invasive breast cancer hiding underneath. I’ve since postponed my place until my targeted therapy finishes mid November so that I’ve well and truly finished all my treatment. All physical courses were put on hold until the end of June this year although I’ve got a feeling this might be extended. They were looking at offering alternative online courses where you’d get a chance to share experiences with others on the same course. I’d really like to do the Moving Forward and am keeping an open mind about asking for additional counselling or whatever else might be available when the time comes. 

I was lucky enough to go on a Look Good Feel Better course just before the pandemic and lockdown hit and I’m so pleased I did. They were doing one near to me on my birthday 17th February and it was a real tonic. Got an amazing bag full of goodies and lots of beauty tips. Plus it was lovely being able to share cancer experiences with others going through the same sort of experiences even though a wide range of cancers and different stages of our journeys. I came away feeling really positive and able to do something to make me feel better. Now they’ve only able to offer online courses sharing different hints and tips but might still be worth checking out for anyone who’s interested. 

I’m still waiting for the side effects from yesterday’s docetaxel to hit me but if it’s anything like last time Friday onwards will be bad so trying to make the most of the next couple of days. Hope you manage to get through yours okay. Do you have a date for your last cycle of chemo? Mine is 16th June (all being well with my bloods of course). Then my details will be passed to the radiotherapy team for the next stage of my journey.

I was offered the choice of having herceptin injections being done at home once my chemo finishes but I’d rather keep going to the same unit. I enjoy the banter with the nurses and also the other people going through chemo. Plus I want to ring the bell again. That will be an emotional one as it will be the last of my cancer treatment. Should be finished mid November by my reckoning (just in time for Christmas). Just hoping by then lockdown restrictions allow us to spend Christmas with our immediate family. I’m finding it tough not being able to spend time with my 84 year old mum and my 5 year old is really missing seeing Grandma and her Grandma hugs. 

Hoping everyone is doing well or as well as you can whilst going through the treatment. 
Love and hugs to all

🌹💖🌈

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Re: March 2020 Chemo Starters

Glad it went well, tmm! And that you're doing better than on the EC part, Wildspur!

I'm definitely thinking I had an easy ride with the FEC part, the docetaxel/T has really wrecked me. My fingernails hurt - feels like I slammed them all in a drawer, the aches and pains have eased up a bit thankfully so I am getting some sleep, and the fatigue has lifted somewhat. Sunday I went to lie down because I felt as if I wasn't even "there" - does that make sense? I couldn't think, or move.. ended up in bed for nearly 20 hours, not even asleep, just "not there". Things seemed to ease yesterday, I was able to skype my Dad and have a chat for the first time since I got back from the treatment.

 

With the chemo mouth/taste problems, is it something that once you have, that's it until chemo is done, or might it improve across a cycle? Because I am really really missing having a cup of tea...!

 

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Re: March 2020 Chemo Starters

 Morning lovelies! 

Been up since 5am and decided to listen to an inspirational podcast by the founder of Move charity which both supports teenagers and young adults (up to age 30) with cancer with individualised exercise programmes and also 5k Your Way; where each month you can walk, jog or run 5k as part of a group of people who have had cancer or are living with it. I was part of a 5kYW group before lockdown and it really helped my mental and physical recovery from my first lot of BC in 2017. We always went for a cake and cuppa afterwards so very social too! Look forward to the time I can get back to it!! More info on the 5k Your Way website and FB page/Instagram if it might be of interest? 

Also if it is ok to mention cancer-hair care who recently sent me a lovely  free gift set including hat, eye brow pencil and lots of info re hair care both during and after chemo. They are really keen to hear from anyone with hair loss due to cancer. 

I guess I mention these things as I am one chemo session away from finishing chemo (although rads still to come) and I have been thinking about next steps and moving on with this my second cancer journey. 

In many ways, moving mentally forward after treatment is as tough if not tougher than the treatment ( although the fecking FEC and Docetaxol have pushed me at times) yet very little information or help/support is provided around the mental impact of a cancer diagnosis. I wonder if any of you have been offered any help in this area? 

Personally, I found I had to seek out support when I finished treatment in 2018 including a Breast Cancer Now Moving Ahead course and some alternative therapy which my hospital delivered at the time. I wonder what if anything there will be to access during this pandemic? Would be interested to hear your experiences? 

Meanwhile, I am trying to manage the se of the latest round of T .... can’t wait to get to the end of this cycle! 

Looks like another glorious day 😎

Hope that you are all doing ok? 

Keep safe and well xx 

 

 

 

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Re: March 2020 Chemo Starters

Tmmorris that’s great news 😊so pleased you only have one more to have 

nearly time to celebrate for sure 🥳🍷

you are so right finish line is well in sight xx

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Re: March 2020 Chemo Starters

Hi everyone 

Phew! Went better than I expected today. Docetaxel no 2 all done and only one more to go yay! And I get to ring the bell next time. I briefly considered not doing it but then I wanted something to celebrate the end of my chemo journey. Hoping I can get one of the nurses to film me on my phone. 

The herceptin injection was a bit of an anticlimax. Yes it did sting slightly when it went in and I could feel the pressure as it needs to be done slowly over 5 minutes so it doesn’t hurt as much. The nurse was lovely and understanding about my nerves and only injected when I said I was ready and counted down to 3 before doing it. She also put a pillow in front so I didn’t have to watch the needle going in. So all in all 1 down another 8 to go and I know what to expect next time so it’s not as daunting. It didn’t hurt that much and 5 minutes seems to go quickly when you’re chatting. 

Thanks for the well wishes Jowels. It’s so good to see the end of this stage in sight. 

Hope you get answers to your radiotherapy questions Wildspur and your side effects from today aren’t too bad. 

Love and hugs to all

🌹💖🌈

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Re: March 2020 Chemo Starters

Good morning ladies! Just hooked up to pre-meds. Today is Herceptin (number 2) and Paclitaxel (number 4 of 9). After three cycles of EC, this is a walk in the park (so far, touch wood etc). Just tiredness and a bit of a bloody nose. Who knows what is to come. It still astounds me the range of side effects everyone is having. And the way different NHS trusts work. I am actually enjoying coming to hospital at the moment! For a trip out and a bit of respite! 😂 I assume the T you all seem to be having is Docetaxel?? All these acronyms! Taking one week at a time and not thinking about radiotherapy- although I am hoping it will be done over 5 days and not 15. I have a telephone consultation on Friday so will ask questions then. I also wonder how quickly our immune system recovers after the last chemo. I am not going to google! Stay safe. Stay strong. This really has been a test for all of us. Cancer / Chemo / Covid. Not one I will forget in a hurry!

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Re: March 2020 Chemo Starters

Tmmorris 

sending you good luck for today.I share the utter dread of having the treatment.
one step closer to the finish line lovely.

sending you love 💓 and a huge hug and hope you can get home quick and rest xxxx

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Re: March 2020 Chemo Starters

Hi everyone,

Trying to steady my nerves before my 2nd cycle of T and 1st herceptin injection later this morning. I hate needles so the thought of an injection that takes 2-5 minutes is filling me with dread. Better than an infusion that takes 1.5 hours in the current climate so just need to keep telling myself that. Wondering how I’ll find a double dose of side effects though..... doesn’t help I only got about 4 hours sleep last night thanks to the steroids (and worrying about today).  

 

Ju72 - I’m with you on worst pain ever with the T and zarzio injections. I didn’t take anything last time but I will this time if my temperature is okay. My clinical oncology nurse told me that the T makes the pain much worse with zarzio. 

Gem333 - hope your T goes okay tomorrow.   

Jowels - I’m also finding it hard home schooling while on T as my energy levels are wiped out although that might also be the cumulative effect of chemo too which I was warned about.  Hope the fan helps with your hot flushes.  I’ve been lucky so far - no hot flushes and no periods either. Think I was peri menopause when I started treatment.  It must be hard adjusting to another 2 cycles after you were led to believe 4 would be okay.  As you say you’ve got your birthday to look forward to so hope that helps you get through plus we’re always here to chat.  

Hoping all goes well today as I’ve noticed a slight kink in my PICC line and they couldn’t get blood out of it on Friday.  Luckily the nurse managed to get it the old fashioned way using a butterfly needle.  

Love and hugs to all

🌹💖🌈

 

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Re: March 2020 Chemo Starters

Thanks for the pic...

I’m up to have my steroids before round 4 tomorrow...Then bloods, PICC flush and dressing change then COVID swab...what fun the day before chemo...groan...

 

Glad you’re ok (ish) does moving about help or make the pains worse? 

Big hugs to everyone...I’m praying my body takes the T ok tomorrow xx

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Re: March 2020 Chemo Starters

Hi gem 

IMG-20200525-WA0017.jpeg

 these are the tablets I've been prescribed and told to take even if I dont need them. 

Witchhazel,  I'm right there with you on the aching. First of all had chronic back pain and now it's in my ankles / legs . Worst pain ever , cant get comfy to sleep . Never had shin splints but I'd probably say it's a similar feeling which lasts all day. Paracetomol seems to ease it a little . I've also got the lack of taste , even water doesnt taste right. But so far this seems to be my side effects ( other than hot flushes ) and trying to pull back my sleep. 

Hope everyone else is coping ok with side effects and feeling well in general. 

Good luck to all having treatment this week . 

🤗😘

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Re: March 2020 Chemo Starters

Gen - As I understand the "green zone", the idea is that any case that could be virus-related goes to the county hospital so it (hopefully) keeps the other hospital a safer space and allow them to restart more routine work.

Nicole - I was anxious about the T as well, as they seemed much more worried about allergic reactions than for the FEC part, it was a relief to get through it.

Having felt ok for a couple of days I'm now really struggling with aching ankles - I've sprained them both badly in the past so they're wibbly at the best of times. I was advised to try taking the zario later in the day, as it was making me ache a little on FEC, but don't think it's helped! I'll have to try the paracetamol I think. I've also started experiencing the problems with taste (or lack of), which has the unfortunate effect of making me want to eat anything and everything just to find something I can taste!

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Re: March 2020 Chemo Starters

Gem 33 

thanks lovely 💜

oh sounds lovely being away from main hospital with covid.especially the cupas and sarnies.My unit is in main hospital and I dread going in there but what can we do.

Got my head round having another 2 like you say we want to do all we can to prevent a recurrence so got to bite the bullet I guess.My birthday in July so I’ll be finished chemo by then so that’s my focus now.

hope t is ok for you and your nails stay ok 👍 

how is everyone else doing?

im back on my yoga after this cycle which I’m enjoying.Thrush is still a pain so on 2nd lot of fluconazole for that.Im finding that the fatigue is getting worse each cycle so pacing is a must.Hard to do with our little boy and his schooling though.We are looking into getting a new fan for our bedroom for my flushes as they really bad.Thought they were bad when I had fertility treatment,god they are awful now.Ill find a way to get on with it.

hope you all have nice bh isolating plans 🌸💐♥️Sending hugs xx

 

 

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Re: March 2020 Chemo Starters

Sorry for all the typos!

 

its actually not my brain but my very old phone!!

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Re: March 2020 Chemo Starters

  • Sorry it got away...

Jowels; sorry for the 4-6 change that’s tough mentally! I’m on a 6 cycle 3 EC (done) and 3 T (to go) even though I had a successful lumpectomy with clear margins and lymph nodes. They say the chemo and radio is to prevent a recurrence and I keep trying to remember for this bit of my life I’ll hopefully have a longer lifetime!

 

and yay- not just me that hates medical, PICC stuff!

 

Witchhazel: yay! So glad it’s a shorter time. I hope you’re still feeling ok- well done on the cannula / my veins weren’t up to it and are still complaining after round one!

 

loved Crystal Tipps! My hair is a very shoddy comb over but I’m learning to love what I’ve got and am mostly learning to stop comparing myself to myself 6 months ago...a work in progress but that’s ok...my wig is my new hair and although I know it’s not mind I’m learning to see it as mine,

whars a ‘green zone’ we moved to the private hospital in Plymouth after my round one, the posh hospital is lovely...we get cups of tea and sandwiches!! Makes it a little easier...

 

I get mad for carrots too and cucumber!!

jowels I’ll have to look up my oncotype I have no idea - got to have genetics test during all of this - hoping that comes back negative - I do think mind is stress related if I listen to my gut, something I need to figure out how to change (work related - child protection work with no supervision and working with children with very complex special needs in a mainstream school-environment / never felt too stressed but think it’s a massive factor. Never time to eat. Wee, drink or breathe...could be something to do with the cancer telling me to stop!

weirdly on EC my nails are lovely and I’ve painted them since day one...hope they stay during T...himmm we’ll see

take care everyone.,,I hope you all stay rested...love Gem xxxx

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Re: March 2020 Chemo Starters

Hi incredible bunch!!

ove spent some proper time reading through posts and I think we are all bloody amazing!! 

Ju72- yay! Well done for getting your 4th one done! I’ve got my 4yh and first T on Wed so nervous and forever hopeful I’ll be ok too.

I’ve had to take Zarzio/ filgastim for 7 days since cycle two - our oncologist wanted ‘belt and braces’ with Covid but so far I’ve been ok with it- no aches and pains but I really think it affects my sleep patterns. I wonder if it’s because o take it late as it has to be over 24 hrs from when j get back from chemo - so I normally do it at 8 ish - anyone knjevwhats best?

 

Ju72 what tablet did they prescribe to prevent oral thrush?

and thinking things through here I’m not sure how I’m going to manage homeschooling a 13 year old and T (I could just manage on EC) and aware of the cumulative effect of chemo too...

 

Jowels-I hope the hot flushes have passed x

tmmorris/ hi, wow, I didn’t realise people could be allergic to the blue dye!  That must have been awful on top of everything else!

At our hospital we are allowed to ring the bell and yes I understand the guilt feeling you may have- I am going to ring it though as a sign to myself that I’ve finished. 

Also, sorry about the cellulitis / I hope it’s eased? Thanks for sharing the pic, that will help the rest of us to notice things we need to. Do you know what caused it?

I’ve ordered some Imodium just in case - how’s the Zarzio been for you on T? Is it different than on EC/FEC? Great to know about the paracetamol before and also my lead chemo nurse said anti histamine (if you’re used to taking them) can help!

Jowels; oh nightmare with the asthma meds too...and hot flushes!!

I’m weirdly still having periods which have been the worst of my life but thank God it’s not going to go into chemo week this time! 

and Jowels I reckon we all have up and down days...as someone said we’re all bobbing in the sea at the moment and riding the waves as best we can...one step in front of the other is what I try too...when my brain spins off to another place I try to retrieve it and be in the moment I’ve its a good on it plan something nice or go to a memory if it’s a tough one...

Nicole07: yes I’m nervous because of the allergic reaction potential with T but trying tk trust in the process, the oncology team and the massive amount of steroids they give us to reduce the risk - fingers tightly crossed!

 

 

 

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Re: March 2020 Chemo Starters

Morning ladies 

Thank you jowels and tmmorris for the well wishes . 🤗

Hope your side effects have eased and jowels I hope you've got your head round having the 2 extra sessions. Although still not nice to have the goal post moved as I've said previously. 

Hope everyone else is feeling well no matter which chemo cocktail your having. Taking once cycle at a time and having the end in sight as being your focus. 

4th one down for me , the T wasnt so bad yesterday.  Haven't slept great but to be expected with having the steroids for 3 days , last day today.  Yay 👍

Just waiting on the side effects to kick in. Which I'm sure will happen in a few days. I was prescribed more tablets to take from day 5 , one to stop oral thrush / white furry tongue and another which I forget what that's for and of course the filgastim injections at the same time. Lucky me lol I shall mostly be laying on the sofa and having a few rest days till I know what I'm facing. 😱

Anyway hope you all can enjoy the sun today , so far the wind of yesterday seems to of eased here. 

Take care lovelies xx

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Re: March 2020 Chemo Starters

Hi everyone,

 

Nicole07 - I was allergic to the blue dye too! Ended up with an unexpected overnight stay in hospital. My side effects from T hit 3 days afterwards. Hope yours aren’t too bad but things easy if the fatigue hits. 

Ju72 - hope all goes well for you tomorrow with your T cycle. 

Jowels - so sorry to hear you’ve started with hot flushes on top of everything else. Like you I only think ahead one cycle at a time otherwise it would be too daunting. I keep telling myself just 2 more to go. 

Has anyone got to their last cycle yet? I’ve seen a bell at my chemo unit but not sure if we’re allowed to ring it with the pandemic. Although I did read a couple of articles after googling ringing the cancer bell where people criticised it because some people having chemo will never get a chance to ring it because they’ve got secondary cancer. Made me reconsider if ringing the bell (if allowed) is a good idea. I’ve chatted to quite a few ladies who are having palliative chemo treatment while I’ve been having mine and there is a slight feeling of guilt. Any thoughts?

Hope you’re all enjoying the sunshine. 

Lots of love and hugs

 

🌹💖🌈

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Re: March 2020 Chemo Starters

Shi 

thank you for this I’ll give it a try 😍🥰💕

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Re: March 2020 Chemo Starters

Jowels don’t know if this will help drinking cold water helps stop my hot flushes, chemo put me though menopause at 46 (45 when diagnosed) worth a try maybe? 😘💕💕Shi xx

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Re: March 2020 Chemo Starters

Ju72

good luck for starting T tomo lovely ❤️
hope side effects are manageable.

🌸🌻🌼

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Re: March 2020 Chemo Starters

Tmmorris

so sorry about your cellulitis,so pleased it’s on the mend.We could do without added stuff to this all.

Im learning fast that everything comes with a side effect jeez,I’m rattling on top of my usual asthma meds!

ive started hot flushes plus plus now-hideous.I started these when I was having fertility treatment so I recognise them.Consultant said they may or may not go after treatment-great!!🙁 I mean come on I’m only 40!!

was on a right downer last night-but I’m focused on getting this done now so will get my head down and focus on next cycle and not think about the one after.Think it’s the only way.My body is crying out for a rest but keep telling it it’s just time then I’ve done all I can before radiotherapy.

thank you for your kind words ♥️🌸

good luck for your second T next week.

 

hope everyone is ok,sending you all 💕

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Re: March 2020 Chemo Starters

Morning lovelies 

Hope everyone is well and coping with side effects ok. 🤗

Thanks for sharing your experiences of T 

I start my T chemo tomoro and hoping I have minimal side effects to deal with. My liver seems to of calmed down this round . Might be due to me taking vit d3 and eating oily fish. Although did have a few cheeky voddys at the weekend. 🍸

Anyway hope your all enjoying the beaut weather , and are feeling well. 

Take care 

Julie x

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Re: March 2020 Chemo Starters

Thank you all for the well wishes and all your kind words and advice.

My first T session wasn't as bad as my overthinking made it out to be! I was concerned when the chemo nurse previously told me that there's chance of an allergic reaction to the drug. Which made more nervous by the fact I was allergic to the blue dye used in surgery! But all was okay, thankfully! 

I'm assuming I feel okay now as I'm still dosed up on the steroids which end after today, so a little apprehensive of what's to come next! 

Hope you're all okay and enjoying the lovely sunshine ☺ 

xx

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Re: March 2020 Chemo Starters

Hi everyone,

Hope everything went ok for everyone on T cycles this week (and of course everyone on FEC). I’ve got my 2nd T next week. Spoke to my clinical cancer nurse and she recommended loperamide for diarrhoea which I got on prescription from my GP (although I haven’t needed to use it yet but don’t want to tempt fate). I was also told that zarzio causes more pain with the T cycles and I could take a paracetamol a couple of hours before my zarzio injection providing I checked my temperature and it wasn’t high. She also said that some ladies need codeine based pain relief from their GP because it’s so bad. 

Jowels - sorry to hear you’re being messed about by your oncology team. You don’t need the added stress while going through treatment. So sorry that they’ve changed from saying 4 Ok to 6 being needed. 

Gem333 - glad I’m not the only one who doesn’t look forward to PICC line flushes and dressing changes. 

Nicole07 - welcome to the group. 

My main side effects from T were feeling completely wiped out with painful aching bones, sore mouth and white tongue, lack of taste, chemo brain, tingling fingers and toes  and very dry skin particularly on my face and hands. I was given Udderly Smooth Moisturising cream extra care cream unscented with urea by my chemo unit and that’s really helping with the dry skin  

I was also diagnosed with cellulitis in my left cheek last Thursday so have been taking antibiotics to clear it up. Fun and games trying to get NHS 111 to get access to a doctor out of hours but luckily my chemo 24 hour helpline told me to insist as there was a small chance it could be early stages pneuropenic sepsis and she said a doctor needed to see me to make an assessment. My first zoom GP call! Relieved it was just cellulitis. Luckily it’s practically cleared up now otherwise my treatment would have been postponed next week.  

tmmorriss_0-1590017408645.jpeg

 

Sending everyone love and hugs 

🌹💖🌈

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Re: March 2020 Chemo Starters

Witchhazel thank you lovely 🌸still trying to get my head around it all.

glad the first T went ok,hope the next few days are ok for you ❤️Definitely a plus being at the hospital a shorter time 👍

love to everyone 💜

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Re: March 2020 Chemo Starters

Hello my lovelies, had my first T after FEC today, and don't feel too bad so far... it was definitely a relief to go from being in for 4 or so hours to half that (still having cold cap as well), and my hand feels less battered from the cannula moving around. Tired but also full of the anti-nausea drugs, I've been very grateful for them.

I still have hair but it's very fine and fly away, and there are near-bald patches on the top of my head. As I always had a huge amount of hair (for those that remember, think Crystal Tipps!) it's been hard to look at such a feeble covering. But I have also reminded myself that I have friends whose hair isn't much thicker without them having gone through chemo. Just as long as it grows back...

When I asked the nurses if it was worth continuing CC, they seemed to think it was working well, so I have kept it up. My hospital's oncology centre is away from the main building, and I think they're now a Green Zone or whatever they call it, so if the team are happy for me to be there longer, I'll take their advice. We all had to wear face masks today, which didn't help with the lightheadedness I get during the treatment, but I didn't pass out this time so that's good!

Hello to Nicole - hope the T wasn't too bad today. My only tips are rest, fluids, ginger biscuits, ginger cake (I've had that as brekkie before now!!), if you crave something, then let yourself have some - I'm always mad for carrots the first week after treatment! I've found that you have to listen to yourself, and for the first 10 days or so afterwards I really have to manage my energy levels.

Jowels, I'm sorry you've got to have extra sessions. 😔 As you say, though, you have to do everything you can to protect yourself. Hugs to you xx

 

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Re: March 2020 Chemo Starters

Hi lovelies

salsa sorry you felt so washed out.Hope you able to enjoy the sunshine today 🌸

well I’ve spoken to oncologist and she wants me to have  2 more cycles due to my high oncotype score 😔. I’m so disappointed as thought I’d got to the end but I know I’ve got to what I can to avoid a recurrence.So another two cycles it is 🤢  brace myself yet again 😔

hope everyone is ok and enjoy the sun ☀️ xx

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Re: March 2020 Chemo Starters

continued

Don’t know about a hat for the cold cap but they are now putting bits of gauze on my head to cover the bald bits. Not too much really. 
I’ve slathering my hands, feet and face with coconut oil which has really helped. My nails are not as fragile now. 
I’m glad your FEC is over and hope T is kind to you. Treats. Good idea.  Hope you are enjoying your new dresses in the garden. 😎

Ju - Lovely to hear of your garden meet with your friend.  I hope you had a good time. It’s so lovely to catch up with friends and it’s a tough time right now so it’s good to feel the love 💕. I had a lovely time with my son thanks 😊 

looking forward to more but I have to be realistic that it is more likely to be zoom at the moment. 😘 take care. 🤗🤗

witchazel - lovely to hear you. How are you getting on. 😘🤗

Shefgirl - glad you are enjoying the garden. It is lovely 😊 out there right now isn’t it. Ice cream sounds fab. I haven’t had such a bad time with paclitaxol but that’s different to docetaxol. I do hope the SE are not completely wiping you out. Forgive me if you’ve already said but how many sessions do you have to have. Take care. 😘🤗

Nicole - hi and welcome. 
It does sound like a complete emotional rollercoaster. Feeling for you having this at your age. I went through fertility treatment years ago and that was a real rollercoaster. Can’t imagine it with cancer on top too. Sending huge hugs 🤗 🤗

As you may have gathered my experience if paclitaxol has not been all bad but we are all different and it depends on the type of taxol and the doseage etc etc. My SE have not been too debilitating. Does it stop me doing some stuff, yes. I need to rest a lot more but I am not bed bound like some. I’ve been able to eat okay. I think you need to be kind to yourself. So sorry about the hair loss. I think it’s such an emotional thing. I have some hair but I feel so ugly right now.  That sounds so pathetic when you think of cancer but sometimes that is just how I feel.  
You are going through one hell of a ride and you just need to take each wave as it hits you. I don’t blame you for feeling nervous of the next step. But you’ve got past the FEC. Well done you. So I guess it’s today you are having T so I’m thinking of you and hope it goes as well as it can. Sending love 💕 and
🤗 

Take care all  😘 enjoy the outdoors if you can 😎 😘 

 

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Re: March 2020 Chemo Starters

Hi everyone, 

Hope today is a good day. 

Apologies for radio silence. Felt really washed out last week, not bed bound or anything. Plus  bit like Gem I just wanted to keep my head down. 

I did write a long post to you all on Monday but something obviously went wrong as it never went up. Doh 😐 

So,

I have my fingers crossed 🤞 for you for today Jowels.  I’m hoping you get the answers you need and that you are happy with them. I was so sorry to hear that just when you were hoping you were done they add another 2 sessions on. Especially as they seemed to have completely floored you every time. It all sounds so frustrating. Thinking of you. 😘 

Gem - lovely to hear from you. So sorry it’s been so horrid. My sleep is completely messed up. Today was better tho. Slept in till 4 😂

Not struggled with the smell issue but that must be awful. I presume that puts you off all your food too. ☹️

Ive been doing paclitaxol for 9 weeks now. It hasn’t been too bad in some ways. The SE haven’t been as intense for me as I think they have for many on FEC. But it is accumulative and last week was not the best. My skin is horrid, red and itchy. My hair is thinning but with my Bobby Charlton comb over I can go without a wig or hat.

I didn’t really struggle with diarrhoea but had terrible constipation so it just goes to show everyone is different.  I am starting to get the tingling fingers and toes and pains but it’s bearable so treatment continues. 

I just hope it goes easy on you. Don’t know about a hat but the

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Re: March 2020 Chemo Starters

Hi Nicole27

welcome to our lovely group.I haven’t had  T as having FEC.I have so far lost one toe nail but no further thank goodness.I have used a nail strengthening polish and dark polish from day one.Always wear slippers and avoid knocking your toes on anything,wear gloves for washing up etc and use a cuticle oil every night to massage in.
side effects vary from person to person I’ll not lie I’ve had a horrendous time with FEC.

ive found as I’ve gone on what works for me.One day at a time for us all.

sending you lots of luck for your first T.x

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Re: March 2020 Chemo Starters

Hi nicole07

A very warm welcome to this forum. 🤗

I'm so sorry to hear of your diagnosis especially with being so young ! 

I've not started my T yet , it's due this friday ( dependingnon blood test results ) 

I think theres alot of posts and comments on other forums about how tough T is but my onco said it's just different and people who struggle on EC tend to do ok on T . Heres hoping. A lady I'm speaking with on whatsapp seems to struggle for about a week , with tiredness, nausea , nosebleeds and diahorea and a sore nose . She classes her SE as minimal so I'm hoping mine are too. I've got some evonail from amazon which protect the nails during chemo,  must admit with ec I haven't used it but I will with the T . 

Stay well lovely 😘

 

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Re: March 2020 Chemo Starters

Hi Ladies, 

My name is Nicole and I’m 25. I was diagnosed in December and had a lumpectomy and lymph node clearance, luckily lymph nodes and margins were clear! Unfortunately due to my age chemotherapy was highly recommended. It’s been a stressful and emotional rollercoaster even before chemo started as I needed to freeze my eggs as I don’t have any children. 
I started chemo EC-T on 11th March, up to now I’ve had three EC which I struggled with sickness and fatigue which seemed to fade after a week or so, thankfully! I started on the cold cap which I thought was going great till about three days before another session when my hair pretty much all fell out on top of my head. I gave up with the cold cap due to the hair loss and the fact I didn’t want to spend all that time in the unit with the covid situation!
Tomorrow I start my first of three sessions of T. I am fairly worried, like I was at the start of EC because of the unknown with the dreaded side effects! But as my oncologist likes to say I’m going to ‘just hang in there.’

My chemo nurse said to paint my nails a dark colour and to have Imodium to hand, but any other tips and tricks for side effects is very much appreciated! 

Hope you’re all well and hanging in there!

xx

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Re: March 2020 Chemo Starters

Ju72

thank you.Yes it’s less than ideal.Just hope it gets sorted Wednesday but it’s not on being messed about for sure.Im still in bed but eating a bit so hope to get up tomo. Usual exhaustion plus filgrastim aches -joy!

glad you feeeling normal enjoy everything when we can I say.

hope everyone else ok too 🌸💓

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Re: March 2020 Chemo Starters

Oh jowels , 

I'm so sorry your being messed around. Having breast cancer is bad enough without not having good communication from your oncologist. It's a total mind f@@@ . 

I really feel for you,  it's so not good for you mentally to keep having the goal posts moved. 

Stay strong lady and I hope you manage better this cycle. 

Hi to everyone else going through the misery of side effects. I'm feeling quite normal this week,  however I'm mentally preparing for a bad time on the docetaxel. But forever hopeful I breeze it at the same time. 🤞

Sending virtual 🤗 to everyone 

 

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Re: March 2020 Chemo Starters

Shefgirl thank you lovely.

its complete crap 💩 you are right.I hate to say that I’ve been so let down but that’s what has happened. It really saddens me.

im still in bed but managing some ready brek.I will do some research and look for the evidence relating to 4 cycles vs 6 cycles in terms of recurrence. I hate the idea of having more cycles after what I have already had but also I don’t want the cancer to return because I didn’t have 6.The whole nightmare just is dragging on and on.

how are you doing on the docetaxol ?

sending hugs 🌸🌻

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Re: March 2020 Chemo Starters

Thanks gem

the poor communication has been very poor from day one really.It has been a lot of fighting from my end and I’m so tired of it all.

you are right though makes it is so tough.

reallg tougher than it need be.The worst is that they know how much I suffer after each cycle 😫

hope to get some answers on Wednesday and will be explaining how let down I have been.

hope you getting on ok x