June 2021 Chemo Starters

[Impatience]

Hi 

@Flower123 

Hope your 2nd cycle goes well. 

Wishing everyone else a good weekend too  

Imp x

[Flower123]

Good Morning and what a beautiful day the sun is shining !

@Trowster I really hope you get the line sorted and move forward for next treatment 

@GonnaGetThruThisGlad you are still feeling quite well to do little bits .

Today I have 2nd Chemo but not till 2.30pm last time it was 10.45 . Feel at a lose end just thinking and waiting to leave for a 35 min drive to oncology. Well going to do online food shopping for next week !

Hope everyone else is ok and have a lovely weekend 

Jennifer xx

[GonnaGetThruThis]

@Trowsterthat PICC line definitely seems like it needs looking at.  I havent had anything like that at all and have had it in 4 weeks now.  There was only a tiny bit of blood after day 1 but then it was cleaned and i havent had any issues since then at all.  i have had it cleaned/flushed etc 3x and all fine.

Sorry to those who have been delayed , but hopefully its only for a short time and we do need our bodies to be in tip-top condition to receive the chemo so we need to remember that.

So after EC treatment 2 on Monday I was totally fine for the next 48 hours, managed a workout, quite a bit of work, even though i had been up since 4.30am and then bang about 2pm yesterday i hit the wall.  Assume this was total body fatigue so i put myself to bed.  i couldnt sleep as my mind was quite active but my body and eyes were shattered.  After 6pm i started to feel better then got up and made myself eat and that did seem to do the trick.  Then in the evening i just chilled about about 10 i was tired as in reay for bed. 

Slept again today till 4:45 (thanks steroids) but woke up feeling ok (to be 'ok' is no nausea/pain etc).  So i spent an hour on the phone chatting to my sister in Australia and then texting with another friend at home as well.   At 6.30 got up for weetbix and banana so i could have my morning steroids and then did some work then took my daughter to the school uniform shop for her new Y7 uniform (want to get it sorted sooner rather than later incase i am severely lacking in energy in 4-5 weeks time).  Had just about enough energy to get the shopping done then came home and again at about 2pm i was shattered.  Again said thing with my body and eyes but my brain was still happily ticking alomg organising the diary in my head.  About 5.30 i felt better so go up and again ate.  See the pattern here....  then from about 7 till now 8.30pm) i have my second wind so im plowing through lots of personal/work admin and making the most of it.  So lets see what tomorrow will bring.  No more steroids for me so looking back at my diary to cycle 1, i can look forward to the comedown from this on Sat/Sun.  All things considered though im still not really complaining (yet!) and like always taking it day by day.

Hows the rest of the team going?

[Trowster]

Hi Ladies, 

reading the posts I realise that I have nothing written in my book regarding my diagnosis, so I might ask for this to be added, for those having treatments tomorrow I hope it goes well I’m sorry I won’t be joining you, as my treatment has been delayed by 1 week, and I am feeling really good at the moment, had a lovely day out with the hubby to Llandudno, then been to have a lovely manicure n pedicure, I had a Picc Line fitted on Tuesday, it bled quite a bit on Wednesday morning, but the district nurse changed the dressing and it appeared to stop, then it bled a bit more last night, dressing changed again this morning and it flushed well, but I’ve just noticed it’s been bleeding again, I have applied pressure, did any of you ladies have this occur when you had a line fitted, I might just phone the ward in the morning, she had a nightmare finding this vein, I really hope I won’t have to have it redone but in my bad ar,, 

[Louise65]

@JessicaB 

I had surgery in April - lumpectomy and SLNB at that point the consultant thought mine was hormone negative so I was only going to be having radiotherapy then the 5 years of drugs. However when we went back for results we found out it was triple negative and although I didnt have to have chemo looking at the reoccurance percentage i opted to go through with it.

Ive been out on my own to a large Boundary Mills outlet near me today and went in with nothing on my head its just to hot. I was aware a few people did a double take but i felt quite empowered, Its hot enough wearing a mask.

Anyone who struggles with constipation another good tip is sugar free werthers i had them when i had my knee replacement and they really helped. 

How is everyone else doing @Heels to walking boots i have a treatment book however i didnt realise until after 2nd treatment they hadnt written my results in so i rang and asked. They didnt want to at first but as i explained if i was to go away and something happened at least i have record with me.

Love to all

Louise xx

[hopeful1974]

@Flower123 I have 5 more of this drug regimen to go. I will then continue on with the 2 targeted therapy drugs until June next year. That will be followed by hormonal therapy for 10 years, so a long way to go yet! The only thing I won’t be having is radiotherapy. xxx

[Flower123]

Thank you both for replying 

@Impatience Thank will speak about physio with them on next assessment.

@hopeful1974  Thats good as forgot you had already hard some chemo already.
No I have not had reconstruction. After the 6 cycles I will have a short break then small op as not clear margins after April op ( took a while to get results back ) so they decided chemo to start . Then radiotherapy then hormonal tablets.
Have you got just 2 of this chemo then you have finished.

Jennifer x

[hopeful1974]

@Flower123 Thank you. I am not overly stressed about the delay to the chemo as I have already had some chemo in Feb-March and also I have had my mastectomy (April) so see this as more of a mop-up chemo which will hopefully prevent the cancer from returning. My oncologist said that the key thing is ghat I get both of the targeted therapy drugs and he can alter the chemo as necessary to enable me to complete the treatment. 

I don’t really have any issues with my mastectomy scar yet but I am on a different chemo from you and also did not have reconstruction (I can’t remember if you said you’d had that). 

I identify with what you are saying about getting tired and emotional. I had an exciting few days a week or so ago and then had a bit of a crash afterwards! 

Hope you have a good evening. xxx

[Impatience]

Hi

@Flower123 

Good to hear you are all set for round two. Hope it goes well. 

I had surgery in April. Due to the fact my tumour was directly behind my nipple lumpectomy wasn’t an option so I had single mastectomy. I also had all my lymph nodes out as I had 14 with cancer. 

Chemo does affect the surgery. The chemo has made me stiffer and my skin on my chest/breast area is rock hard. My physio said chemo can dry you out. I also had slight swelling on my upper arm which is chemo related. It has got me down but my physio told me just to let it go as by the end of chemo my arm/healing will be as before and no worse. 

I’m not sure if you know but the physio will do massage on the area. I have it every 2 weeks and it does help. Might be worth asking for. 

I can’t believe we go through such major surgery and then chemo and then radiotherapy. Just goes to show how strong we women are!!

Take care. Imp xx

[Flower123]

Hello Everyone ,

@JessicaB Thank you I had a lovely time with granddaughter however have suffered last few days with fatigue and very emotional. I suppose I did do a lot of walking and it was very warm . I absolutely love the knitted hats on the innocent smoothie. You are doing a fab job for great charity’s. Sounds like you have been doing quite a bit to keep you going .

@hopeful1974 So sorry your not getting chemo on Friday must be very upsetting. Fingers crossed it increases for Bloods Friday for Monday Chemo . At least we are being well looked after by the hospital.

@Impatience  Hope your feeling more comfortable and not so worried with your mouth . I am to such a worrier so totally understand. I have had a meeting at my oncology department with a psychologist which  only took a week to come through. Talking  about things certainly helps and so nice to do it face to face 

I have had bloods done and oncology assessment said all good to go Friday for 2nd chemo they have written me up for a few new medication to help if get ulcers, constipation and have been told need to eat  more !! 
Has anyone had an operation before starting chemo ? I have had lumpectomy and all nodes removed and finding breast very tender . Oncology did say operation wounds don’t like chemo 

I hope everyone else is doing well and having a good day . I too am not good with IT so will have to get out paper and write down who says what so can type to everyone.

Jennifer x

[hopeful1974]

Hi @JessicaB I’m so glad to hear you’re feeling ok. I remember with EC that the first few days were the worst, so fingers crossed for you. 

I have had my chemo delayed again to Monday. I am having three days of G-CSF injections and my bloods will be taken again on Friday. If my neutrophils are high enough then, Monday will go ahead. I will be having my doses of the chemo reduced again because of this as they need me to make it safely through the treatment. I do hope I manage to have the chemo on Monday. Otherwise I will really start lagging behind!! xxx

[Impatience]

Hi @JessicaB 

Jess it so good to hear you are doing well with your treatment. 

The further away from the treatment day seems to be better for me in terms of SEs so fingers crossed that’s the same for you. 

Wishing you a good week/weekend. 

Imp xx

[JessicaB]

Hi Folks, I am checking in daily to see how you are doing and think about you all during the day.  I did struggle to get on the forum for a couple of days but that glitch seems to have disappeared.

After my chemo I was on edge waiting for the side effects to rush in and floor me but so far I have been extremely lucky and been able to keep busy and by keeping occupied I don’t think about the ‘off’ feeling I have.  I am just going to ride this wave until things change.  Every day feeling OK is a blessing.  I do feel tired but have been managing to do some household tasks, a little gardening, cooking and some knitting (I am making hats for The Big Knit https://www.thebigknit.co.uk/join-in)

Although I am reasonably IT savvy I appear to have zero ability with this forum!  So, thank you to whomever’s idea it was to copy and paste the tag names, however the fact most of us are called one thing in our @ name and another in real life seems to fox my little brain so my efforts below at trying to match up what is happening with each of you may have gone awry… apologies if so.

With regard to all the follow on medications, I did wish my partner had been able to come in with me – I went straight from the discussion in to the FEC.  So I promptly forgot to tell him that the needle retracts which caused a mild panic when he did the first one (funny now… not so much then!) 

I haven’t been brave enough to do them myself yet – normally I am brave as a lion but this seems a step too far, so he has been fabulous and done it for me.

@Impatience  hope the cheek is healing.  I did this just before I started chemo and was so worried about it.  The trouble is when you bite it once it’s so easy to do it again.  I just tried to put faith in the magical healing abilities of the body but it is hard not to worry

@Louise65  Glad you are feeling more human (well this was Sunday so hoping that’s still the case)

@GonnaGetThruThis  Did you manage a workout?  It sounds as though you are coping with the early starts none the less

@hopeful1974 Hope you are a little more rested today.  I think the football affected everyone, fan or not 

@simplyeve thanks for your lovely comments

@Flower123 Hope your visit to see your granddaughter gave you a huge boost!  Loved your pictures

@Trowster Mega impressed you are getting out and about and getting your make up sorted.  I have not bothered since the day of chemo.  Did go wild and venture to Tesco on Saturday… first time in a shop for three weeks!

@Fairie  How are you doing, I know you were dreading your next session.  Sending hugs

@Heels to walking boots You seem to be getting to grips with all these stats.  I notice from post to post the information we get differs depending on where we are having our treatment.  I do have a book but no one gave me information in relation to my bloods, so I will try to remember to follow up when I go for my second cycle.

Apologies if I have forgotten anyone.

I am on my own on Friday pm, Saturday and Sunday am so hoping I will feel as OK as I am now.  Do you find you improve the further away from the chemo and medications you are?

My sister was diagnosed with cancer last October, she has now had a lumpectomy and radiotherapy so we have been travelling this road together a little.  In solidarity she is ‘Braving the Shave’ and having all her hair shaved off to raise money for Breast Cancer Now.  She is up to nearly £300 now.  Isnt that just so brave and supportive.

I think it’s time to do some ancestry.  Looking at the past might be a good distraction from the future.

Hoping you all have a manageable day

Love Jess x

[Impatience]

@hopeful1974 

@Louise65 

@Shi 

Thank you for your advice. I know I need to relax a bit more. I’m not good at ringing for help as that’s not my nature (in my pre BC life I was the one people phoned). However I’ll start to ring more. 

My BC nurse has referred me to a service to help with the anxiety but unsure how long the waiting list is. 

Hopefully I’ll have a trouble free today and wishing you all the same. 

Imp x

[hopeful1974]

@Impatience I bit my lip a couple of weeks ago and then bit it a couple more times when I was eating. I used the mouthwash I had been prescribed and it did clear up. I have a real tendency to worry and during my chemo in Feb-March, I became consumed with worrying about every little thing. It was driving me crazy so I decided to relax a bit and I have been fine. Just run anything by the nurses. I was worried about hugging my children due to Covid but then reasoned that I was more likely to pick it up when in hospital. Not hugging them was so bad for my mental health. My sister-in-law also helped to give me some perspective as she is chronically neutropenic but still managed to work throughout Covid, hugs her children etc. I hope you find your balance. xxx

[Shi]

Imp ❤️ Keep vigilant, keep checking temperature and if you don’t feel right always ring rapid response number even with no temperature. Your team would rather you ring and check everything with them, than not check ❤️ You help them get you safely through chemo by being vigilant ❤️ I found keeping chart of temperature during cycles helped, it was where I wrote down when I’d taken tablets too, it just gave me bit of comfort being able to see it all in black and white rather than thinking oh what was my temperature earlier because chemo brain fog can make you bit fuzzy. Hope this helps ❤️💕💕✨✨Shi xx

[Louise65]

@Impatience 

It's only natural you will worry more and as long as you now careful and using mouthwash, I'm sure all will be ok. Maybe makeup a salt water rinse as well it certainly won't do any harm. I used to get alot of utis and the slightest niggle I worried so much. 

Take a deep breath and say all will be ok. 

Sending a virtual hug.

Xxxx

[Impatience]

Hi everyone

I have somehow managed to bite the inside of my cheek. I have used the oral wash and bonjela but now worried sick about infection and low neutrophils. 

Does anyone else worry like this? Anyone got good tips on how to control this worry as it is driving me insane? 

Imp x

[Impatience]

Hi @GonnaGetThruThis 

Yes I did mention the chemo smell during my first cycle. I felt it was coming from my pores and the bedroom and bathroom had the same sweet sickly awful smell. Hubby said he couldn’t smell it but I reckon he was just being nice.

However like Louise said it does disappear after the first week. Like Louise I’m into my 2nd week of the 2nd cycle and feeling okay. I’ve walked 2 miles and my chemo brain has also let me do a huge pile of paperwork/admin. So all good. 

Chemo for me is the constant worry rather than the actual SEs. However I’ve always been a worry wort. 

I hope you have a good 2nd cycle. 

Wishing everyone a good week too. 

Imp x

[Louise65]

@GonnaGetThruThis 

I've had that both times in my first week however I feel the smell is me. I asked my partner and he said he couldnt smell anything. Its like my body is sweating out the poison and its most unpleasant. I'm now day 12 and no smell and feeling good. Went out to lunch with 2 friends and that was so nice just a bit of normality.  Apart from metalic taste in mouth im back to walking dogs, shopping etc

How is everyone else? Hope your all doing ok. 

Love Louise xx

[GonnaGetThruThis]

@ImpatienceIm pretty sure it was you the other week that mentioned the smell of chemo? 

All day i have been trying to find the dirty sock smell around the house then i remembered what you said and wondered if this was it? 

[GonnaGetThruThis]

Afternoon all,

Thanks for all the anecdotes.  I awoke (as expected) at the ridiculously early time of 3:30am on the dot.  Was awake for 2 hours and nearly considered getting up but then remembered i didnt have to do the school run so put my editation on and fell back to sleep for another hour and a half, so better than nothing.  Woke up feeling less tired and generally fine in myself.  Ate brekkie so I could have the steroids and also eaten lunch early at 12 to have the lunchtime dose.  I feel quite full up now! 

Im hoping to go for a walk and do a small workout later as im feeling fine and well aware tomorrow i may not feel as good, but i am severly lacking in motivation at the moment!  i think ill set my alarm for 2pm and tell my daughter to drag me outside!

Hope everyone else is feeling good.

Kim x

[Impatience]

Morning @GonnaGetThruThis 

I am also on EC for three cycles. I was given 150mg of E both cycles. I think there is slight variation in amount based on height/weight but it sounds like you were given half a dose first time round. 

To reassure you the only cumulative for cycle 2 was the fatigue. This was much worse days 1-6. I’m now on day 12 and doing okay. 

I’m sending you positive vibes that your second cycle will be okay. 

Take care. Imp xx

[Heels to walking boots]

@GonnaGetThruThis I don’t seem to have a treatment book but have an appointment with the oncologist so will ask tomorrow.

xx

[GonnaGetThruThis]

@Heels to walking boots can you see the details of your last treatment written down in your book?

I compared my bloods to last time and my white and red cells are lower thsn the first time but not by much thankfully. The injections seem to be doing their job so I shall enjoy taking them again from Day 3.

[Heels to walking boots]

@GonnaGetThruThis  i don't think mine should be different but i will definitely pay attention on Friday as i too think i got off lightly with the side effects.  So i would be curious if i am the same as you. 

[GonnaGetThruThis]

@Heels to walking bootsthe nurse happened to mention it when it arrived.  She said we have 3 viles...... last time I only had 2.  I had no idea i only had a half dose and kind of wish I knew as it would surely explain how i got off so lightly.  Also checked my book on the treatment page for last time and saw Epirubicin 90mg and this time the E was 180mg. 

Is there a reason you think yours will be different?

[Heels to walking boots]

Hi Kim, 

Just a question did they tell you that the % of Epirubicin had changed compared to last time or did you ask? I am just curious at whether mine will be different on Friday. 

xx

[GonnaGetThruThis]

Finally the treatment started after about a 90 min delay but you can see how hard everyone works here so I'm definitely not complaining.

Also interestingly, on my first treatment I only had 50% of the Epirubicin as one of my blood results was high. I think this must have been a factor in why I got away with very few side effects.  This time I have the full 100% dose so we will see. I'm trying not to now worry about all the potential side effects but will have to just wait and see.

Treatment all gone through now so I just have about hour of this bloody cap on. It really is borderline unbearable so if it doesn't look like it's worked this cycle I won't continue with it. 

Anyway enough of my moaning, how is everyone else? I hope our ladies who weren't so well last week are starting to feel better and it will continue. 

Chat later ladies

Kim xx

[Heels to walking boots]

@GonnaGetThruThis  hopefully you have a good book to distract you whilst you wait! Thinking of you xx

[Heels to walking boots]

Will keep everything crossed for you @hopeful1974 that your bloods come back ok for chemo Friday! Also, hope that your energy returns today...i think the football took quite a lot out of us yesterday LOL xx

[hopeful1974]

Big hugs for today, @GonnaGetThruThis . One more chemo you can tick off! I do hope my bloods are ok tomorrow for chemo on Friday - I have felt whacked this morning and only woke up at 10:30. Perhaps the football affected me more than I thought! xxx

[hopeful1974]

@Jennet I have read that too and agree it is very useful - more about the medical side of things. I devoured both books a while back and they were very helpful in coming to terms with all I am going through as well as giving practical advice. Hope all goes well as you get started with the chemo. xxx

[GonnaGetThruThis]

@Heels to walking boots you are right im here now.  Just got the hair all ready for the cold cap and was told that my drugs are delayed and have to wait another 90 mins.  Oh well not like I had any other plans today.....

[Heels to walking boots]

@Jennet  good luck tomorrow hope all goes well! Enjoy painting the nails...mine are all done ready for round 2 on Friday 😊

@GonnaGetThruThis  i think you have a cycle today-i hope all goes well and you feel ok! 

I hope everyone else is doing well!! 

Anabel xx

[Jennet]

Thank you for this...really helpful tips @hopeful1974 - the other book I am finding useful is "The Complete Guide to Breast Cancer" by Liz O'Riordan & Trish Greenhalgh. Now off to paint my nails and then go to get a PICC line inserted.

[Jennet]

Oh you made me laugh! So much to look forward to...I start chemo tomorrow, off to get a PICC line today. Feel like a pincushion - so many needles.

Thank you for the giggle.

[Flower123]

@Louise65 

Lovely to see such a happy smiling face beautiful picture. Glad you are starting to feel better .
Jennifer x

[Heels to walking boots]

@Louise65  So glad you are feeling better! And a wonderful photograph your smile is soo uplifting and positive!

Hope everyone else is having a good day and enjoying the Wimbledon and the football later. 

Hair is falling out a bit more these last two days which made me sad and also a reminder of how real this is but seeing the lovely photographs of everyone really up lifted me and if it comes out it comes out!

sorry for not mentioning everyone this time also doing this on phone which is harder. 🤦🏻‍♀️

sending you all love! 
Anabelxx

[GonnaGetThruThis]

@Louise65 love the new photo and the fact that you're feeling better and over the first week. Here's hoping it gets better from here so you can 'enjoy' the next couple of weeks. 

We are on the same/similar treatment plan as I also have 3x EC then move onto P so it'll be interesting to see how they compare. I've also heard P is less severe than EC as @hopeful1974 says so here's hoping.

I'm about to sit down and enjoy the tennis and using it as an excuse to resr up for tomorrow. 

Take care all 

Kim x

[hopeful1974]

@Louise65So pleased to hear you are feeling a little better. I felt awful on EC too so know what it’s like. I have felt so much better on the chemo I am now on, so hope it will be the same for you. I know several people who found Paclitaxel much easier than EC. Fingers crossed! xxx

[Shi]

❤️Photo Louise, always keep 😁😁, lots of laughter helped us oct17 gang through ❤️😘💕💕✨✨Shi xx

[Impatience]

Hi

@Louise65 

What a great uplifting photograph! Your smile is so positive. So pleased to hear you are feeling a bit better. 

23rd for me too. Together we can do this!

Imp xxx

[Louise65]

Morning All

@Impatience 

Hope everyone is doing OK. I'm finally starting to feel human again and up and about. The medications are working and yesterday I ate properly which was so nice.

I'm on EC and have 1 left on 23rd so will expect the same again around day 7. Then I go onto PC weekly. 

I put a new pic of me on my Facebook yesterday as I don't see anyone alot of people thought I still had hair. The comments I got were so lovely and gave me a real boost. I don't wear anything at home unless my head feels chilly then it's just a cotton hat. When I'm out it's either a cotton sunhat or beanie I just get to hot. 

Another day ticked off this horrendous journey. I was talking with my niece yesterday about her wedding 29th December I have my dress etc and so looking forward to it. 

Love to all 

 

[hopeful1974]

@GonnaGetThruThis Thank you for your kind comments re the wig. It’s great to have and I wear it a lot. When I’m not feeling so good, though, I take it off and just prefer wearing nothing on my head round the house at those times. I still have a full covering of my grade 1 hair, but I can see little hairs on my pillow each morning so it is coming out slowly. 

I’m looking forward to the tennis and football today. I have found some wonderful films and series on Netflix and they have seen me through many a tired moment. Call My Agent is my favourite - it is in French with subtitles, which I enjoy as I lived in France for a few years.

Sending love to everyone today. As many have said, we will get through this together. xxx

[Impatience]

Morning

@Louise65 

I am sorry to hear you’ve had a few tough days and hopefully you are feeling a bit better now. I have found this cycle harder than the first but I guess I knew it could be. 

Are you on EC-T regime? I’m hoping to get through the next cycle by telling myself that it’s the last of the EC. EC will be no more! T may bring other challenges but it will only be 3 to go. Cancer has played so much with my head that I’m putting it to good use and trying to use thought in a positive way. Hope you’ve had a better weekend so far. 

Morning to everyone else (I’m sorry I type this on my phone so no chance of being able to list everyone 🙈). I’m loving the photographs and great advice re lipstick. Haven’t worn any since retiring from work but will treat myself! My head has now got a fine covering of baby hair which is still shedding. I wear little turbans around the house and my wig to go out (although other than the hospital I haven’t been out). 

It is great to hear that so many have got through the first cycle and gearing up for the next one. Wishing everyone a positive and trouble free week. 

Take care. 

Imp xxx

[Shi]

Flower123 ❤️ Beautiful photos, always found nice bit of lippy works magic ❤️ And always put lippy and blusher on, chunky necklaces and big earrings or dangly earrings are worth experimenting with too ❤️ You’ve all got the kinder head surprise to look forward to those who are not cold capping, you won’t know what colour it’s going to grow back or if it will be straight or if you get the chemo curly whirly curls 😁 😘💕💕✨✨Shi xx

[GonnaGetThruThis]

@ImpatienceI didnt experience awful bone pain but i did still feel like a needle was going into my back bone for a good week after I had finished the last injection.  I was also reluctant to take paracetamol last week when my headache was bothering me (also time of the month) but i took my temp 3x on 2 different thermometers and then decided to take just 1 and it did the trick.  The nurse did tell me yesterday that it is fine as long as i check my temp, but i can totally understand why you would be reluctant!

[hopeful1974]

@Flower123 You look so pretty with your headscarf on! I have some scarves and will definitely be using them once my hair falls out and when it is too hot for my wig. xxx

[Impatience]

Hi

Yes I have the number. I’ll call them if it doesn’t ease. 

Imp x