October 2019 chemo starters

[KathCurtis]

Thinking of you Cherry and hope you can get a good balance for Christmas Chemo sweetheart! 
Xx

[Cherryp]

Glad things went well Kath. CT scan today and MRI tomorrow to see how things are going for me. Nearly half way through chemo now. I want to consider Christmas in deciding what drugs I have this Friday ! Trying not to be sick over Xmas as we lost my sad to cancer back in March and I need to ge strong for mum and sister. 

[KathCurtis]

All done and apparently went really well 👍. Just celebrated with Turkey and cranberry sandwich 😊. Looking forward to my Christmas 🎄🎅🌟. Wishing you all a good night 

xxx

[KathCurtis]

Thank you, much appreciated 🤞🤞🤞

[ClaireL]

Good luck for tomorrow Kath x

[KathCurtis]

Hi folks, photos just won’t load for me atm. Phone keeps saying it can’t upload. So sad! Will try again after hospital. You all take care.

love Kath

xx

---

@Purpletrunks wrote:

Yeah go on Kath, send us photos 😊😊😊

---

[Shi]

How are you doing today purple trunks ❤️I hope thing are settling down for you 🤞🤞💕💕✨✨shi xx

[Purpletrunks]

Yeah go on Kath, send us photos 😊😊😊

[Shi]

❤️❤️kath, photo updates on Luna for the thread ❤️❤️❤️ I am sure everyone’s heart melts she’s adorable ❤️❤️ I know mine did when you posted the photo of her ❤️❤️💕💕✨✨shi xx

[KathCurtis]

Thank you Shi.

Lovely Luna is a great distraction for us, she is a lot of fun and a lot of work, all of which is good for us! 
wish everyone a relaxed Sunday 

Kath

xx

[Shi]

Hi kath private message, if you pick someone to set up the what’s app group and pm them your number so they can set the group up for your meet up ❤️ Hope that helps. Hope you’ve been enjoying 🐾🐾hugs 😘💕💕✨✨shi xx

[KathCurtis]

What is “pm”?

 Thanks Shi

k

[Shi]

If all of you pm one of your group then they can set up what’s app group for you to arrange your meet up safely ❤️ You should all have the ability to pm as you’ve been on the thread a while now. Anyone got any problems with pm’s please ask the mods to look at for you ❤️💕💕✨✨shi xx

[Purpletrunks]

How do we share numbers for a what's app group on here then shi? X

[Shi]

❤️ Purpletrunks I’ve responded on your other thread ❤️ sending 👭👭❤️❤️to you all and reminder to arrange meetings on a what’s app group or pm each other on here, the threads are open to the world to read, please keep safe 👍💕💕✨✨shi xx

[KathCurtis]

Ouch, that’s grim Purpletrunks. Good you are in hospital where hopefully they can look after you and get you back in better shape soon! Thinking of you and sending positive vibes for wellness. Thank you for thinking of me in the middle of all you are going through. You are so thoughtful 🥰. Wishing you well and home soon,

love

kath

xx

[Purpletrunks]

I am still in hospital, with no sign of being allowed home until next week. Diarrhoea isnt responding to any drugs, and is continuing to be pretty bad... 11 times so far today and counting! I had an infection on top of everything too, although that seems to getting better.

I had oral thrush and ulcered nostrils and lips. This is all easing a little, but my hands are on fire! Itchy red dry rash and peeling. 

My onc indicated they would reduce tax dose, but consultant today suggested I shouldn't have it again as it clearly doesnt agree with me.

Hows everyone doing? 

Good luck for Monday Kath. ❤❤

[KathCurtis]

Thank you cureDars

x

[CureDars]

Kath,

All the best for Monday. We’ll be thinking about you. ( Not having surgery till after chemo myself.)  

CureDars

[KathCurtis]

Thank you Jasmine, that’s very kind

xx

[jasmine1897]

This is really good to hear Kath and I wish you all the best x

[CureDars]

Purple Trunks,

So sorry to hear you’re going through such a rough time. You encouraged me after diagnosis and I will always be grateful. I can sympathise with the hospital stay and the IV antibiotics- after 1st EC. Yes, we are  in the right place  but it’s no picnic. Food was atrocious- I’m normally try to be appreciative- but after chemo it’s tricky anyway, isn’t it? 
Please keep us posted and hope you’re home very quickly.

CureDars

[KathCurtis]

Hi all

very sorry to hear that chemo is taking it’s toll on so many of us. I hope you are all on the downhill and will soon be through the torture? Can you see the end in sight yet?

 I am making a good recovery from lung surgery and the bc has shrunk enough for me to have mastectomy on Monday. Bit daunting to say the least, but will be great to have all the known cancer out. I will then start preventative chemo for lung and breast in New Year. I can’t remember if any of you had mastectomy, if so any advice/tips.

Hoping you can all enjoy some of the festive season,

love

Kath

xx

[jasmine1897]

Claire it’s strange you say that my mum has developed an allergy with plasters too..

she suffers from diarrhoea towards the start and end of cycle with bad cramps but no more than 3 times a day

 
I’m sorry to hear you’re in hospital purpletrunks but like you say the best place to be for you now, and hopefully you’ll be feeling good for Christmas Day ! 

my mum is waiting for the results from her bone scan (she had it last Thursday) after they picked up something on her spine (confirmed) next chemo is on weds and I am taking her to the garden centre to see the Christmas decs! 

my brother coming back from uni for Christmas too so she is looking forward to that x

[ClaireL]

I'm on paclitaxel. It's a high dose though because I'm having it accelerated. 

I've come up all blistered where the plaster was! Hopefully it'll go away after treatment then. I've not heard it's a thing but maybe a sensitivity isn't uncommon! I'll ask when I go for my bloods today 🙂

[Purpletrunks]

Are you on docextol too Claire? Sorry, you have probably said 🙈. My next one is 27th dec, so at least I should be reasonably ok for xmas day. 

Interesting what u say about plasters... I normally have very UNsensitive skin but seem to have reacted to  plaster they used last week at chemo. It's really red and itchy. Is that a chemo thing do you know?

[ClaireL]

Aww guys I'm so sorry you're feeling so tough. I was hoping that once the fec finished you would be much better on the t.

I'm in a similar boat. I had a trip to the hospital too for my tummy. Temperature spiked so they did blood cultures and found something odd. I'm waiting to see if it was a contamination though. I recovered fairly quickly but still can't feel my fingertips from numbness. They might change my regime but my onc is at a conference so won't know til he's back. I hope not. Wanted to be ok for Xmas 😞 

I have also developed an allergy to plasters in amongst it all!! 

I'm hoping we all have a good weekend. Get well soon guys. Xxx

[Purpletrunks]

Morning.

Not gone so well for me this cycle. The diarhea started sat, 2 days after docextol. Severe to say the least, over 20 times on sunday!!! By Tuesday I was admitted to hospital for fluids. Still have it, still here. I contracted an infection too so now having iv antibios. Goodness know when I will get out. 

I missed my little girls nativity, which made me sad. But otherwise at least I'm in the right place. My neutrophils are playing ball thank goodness. Staff are lovely. Food is atrocious... and I have oral thrush so cant eat much anyway. 

My onc said we will reduce the dose next time.

Sorry to hear your tummy is affected too Emzlew. Once I'm outta here we can meet up to talk dirty about Dox, bloody stuff!! Although I think I would still have it over fec!

😊😊

[Emzlew]

Hi Purpletrunks

How's your week been after new Meds? 

Meeting up sounds like a great idea. It would be nice to have a cuppa and a chat with someone who knows... You know?! 

I'm struggling a bit this week.  The sickness has been great this time, nothing at all!  I did end up in A&E on Monday and after his and an x-ray I turns out I have a chest infection so I'm on antibiotics now.  Fingers crossed I will feel better soon! 

I am however struggling today with my tummy.  Horrible tummy pains and cramps and diarrhoea 🙈. Again, I'm guessing it's all part of this wonderful journey but because I've "been"a few times today I might have to go in again 😭 

Feeling quite down still..  which is getting me down 😔 

Hopefully a better day tomorrow?! 

How is everyone else? xx

[Purpletrunks]

Crikey, I wish my monthlies would DO one! 🤣🤣

I'm much better on D/h/p than on FEC so far... long may it last.

EMzlew, you might just get them back in before the mayhem of xmas holidays 😉

Mortimer is only 1.5 hours from me... if driving is good for you, and you fancy company/coffee then I'm happy to try and meet outside swindon in a couple of weeks. Obvs happy to.meet anyone, but I think 45mins driving is prob my limit. 

😊😊

[ClaireL]

Glad you're doing a bit better emzlew! 

I haven't had any of my monthlies either since day 1. No idea if they will come back. I'm happy with my little boy and didn't want another so not so fussed about them but didn't really want to start the menopause at 36!! 

I've put on a couple of pounds - read more than a few here!! 😉 I crave the sweeties on the steroids!! 

I've started wearing my wig on and off when I go into work on my good weeks and it's actually ok. I'm getting used to it and people say it looks natural. I'm also not adversed to opening the door with my fuzzy head now though! Go baldness! 

I'm rooting for you all x

[Emzlew]

Hey everyone. 

Feeling pretty good so far after my first T/P/H even with no sleep last night.  It must be the steroids but I've been up and down like a yo yo.. 

Interesting on the hair thing.  My hair is so bizarre.  I've been left with a fuzz that looks like it's growing (seems too be only the grey unfortunately 🙄). I'm expecting it to fall out now this one has started.  I do have a wig but I haven't worn it yet. I'm trying to embrace my baldness 🤣 My eyebrows are thinner and my eyelashes are few and far between.  

I've bought myself some of those magnetic eyelashes and I have to say I LOVE them!! 

I've got some c- lash ones to try too.  I'm going to try today.  I will let you know. 

Feeling frumpy where I'm putting on weight.  I CANNOT STOP EATING!! 

I never had morning sickness with any of my pregnancies, even with the twins but I'm guessing it's what is like if you do suffer?  When you feel queezy so you eat to get rid of the feeling.  Well, I must be queezy all the time as I'm grazing all day!! I'm not complaining as I know some can't eat which is more worrying and distressing and I'm sorry to offend anyone but I seem to be out of control!  I will get this battle out of the way before I worry about it!! 

On the topic of monthlies...  I haven't had one since I started chemo?  I was reasonably regular before, maybe missed one or two occasionally as I believe I was perimenapausal but since this, I've had nothing!!  

I was told it would push me through the menopause I'm certainly flushing enough for it to be!! 🙄🥵. Every few minutes it seems?!

I live in a place called Mortimer and my treatment is at the Royal Berkshire Hospital in Reading.  The staff have been amazing since the first day.  My oncologist seems a little blunt and to the point but as long as he does what he had to do I don't mind that at all!!  I did manage a smile from him last week.  I am going to make it my mission to get a giggle from him!! 😁

Have a good day everyone x❤️x

Ooh, kids are on the up so hopefully some normality can resume next week when they go back to school and pre school?! 🤞🥰

[jasmine1897]

Purple trunks, saying that her leg hair fell out but is growing back too as well! She hasn’t lost all hair just thinned. She has fair eyebrows and they’re still intact, not sure about eyelashes as she has straight short ones which have been passed down to me :)!. They’re are some great tutorials on eyebrows. I have bought my mum a hat with a built in wig so will update, she was worried it would be uncomfortable but the hair is like a halo so hopefully soft on the head. X

[ClaireL]

The nurses told me the eyelashes are more effected on T than the eyebrows! Fingers crossed they all stay!

I thought my hair felt like it was starting to grow back so I keep checking every day lol. 

Leg hair came back but it's sort of coming and going at the moment! Very odd! 

[Purpletrunks]

Thanks Jasmine that's helpful.

Interesting about the hairloss, I was expecting it to start growing back on tax, but maybe not. I still have eyebrows, so maybe I will start saying goodbye 🤣

Love to you and your mum xx

[jasmine1897]

Hi all,

my mums side effects below midway through round 3, docetaxol, herceptin and pertuzumab:

hair loss - started coming out end of cycle one 

periods stopped - she hasn’t had a period, she had pms but it just passed (she is 45, but I have seen periods stopping temporarily is a side effect) 

Achy legs and joints around day 3 

dry, flaky skin

diarrhoea for a few days at the start and end of cycle 
weird taste changes second to third day, loss of taste but this returns 

I hope this helps, and is not like the horror stories we see! We prepared for everything and I even got her some quesey drop sweets for nausea and she hasn’t had to have them yet! 

[Purpletrunks]

Morning.

Emzlew I am Indeed half way through indeed, and I think its definitely affected my mood. My periods have been affected and I think I'm also very hormonal. That has passed this week and I have also had my h/p/ doxetaxol. So actually I'm more than half way now. I didnt realise until I walked out of chemo yesterday how frightened I had been about changing drugs. 

I am so much better on T so far, although it's not even 24hrs. I'm driving, managed to sort my own drugs and sort broke, and ho on the school run. No nausea! I'm ready for things to hit at the weekend, but feeling like myself has given me a massive boost emotionally!!! 

So Emzlew, keep on trucking lovelyone. Once this round is done, your kids get better and your cold shifts you will get back to yourself. 

Where are you based?

Wish we weren't all so spread out.

Clare doery to hear about your aches, I'm prepping my head for these but its good to hear you have managed on painkillers.

And a final thought... everyone keeps wanting me about the runs on taco... and I'm nodding publically like it sounds terrible but actually nothing sounds nicer right now!! 🤣🤣🤣🤣🤣🤣

[ClaireL]

I hope all goes well for you emzlew. 

I had my first paclitaxel on Mon. My bones have been hurting from my hip to my ankle the last couple of days but I'm managing with painkillers so far. 

I'm keeping everything crossed for you that it goes smoothly. You deserve a break! 

I hope the little ones feel better soon too. It's so hard when they're sick too. 

I'll be 3/4 through after my next dose so I'm clinging to that thought at the moment!! 

Sending lots of love x

[Shi]

Emzlew ❤️ Please let your team know about sore throat and poorly little ones, hope they feel better soon. T can give you runny bum, so you might have to up your carbs. If t gives you achy bones, Epsom salt baths is a tip that’s been passed down the threads that works and udderly smooth cream with extra urea from Amazon was good when skin on hands and feet dried out with the chemo. Sending 👭❤️For tomorrow 👍💕💕✨✨Shi xx

[Emzlew]

Hello lovelies.  

Thank you so much for replying and being very kind. ❤️  I know we all have up and down days and that was a particularly down day!  

I had Herceptin Yesterday and stayed in for an extra 4 hours and had Pertuzumab today and only stayed for an extra hour.  All has gone well so far. 

I have T tomorrow.  I do feel a little nervous about it but they seem to think it's not as bad as the FEC.  I was sat next to a lady on my last round who had docetaxol and she had no side effects at all!! 

Fingers crossed we will be the same! 🤞🤞

My children are all still poorly.  All 3 little ones have an awful cough with one on antibiotics.   I'm still coughing a bit and I've developed a sore throat tonight. 🙄 

I will keep an eye on temperature but will mention it in the morning. 

Are you now half way purple trunks?  Maybe this is how it goes with emotions at the halfway point?  I've been very emotional lately?! 

But yes, let's hope after this week it's an easy home run!! 

Thank you so much everyone.  This is such a crap time so it's nice to speak to others who know how I feel..

I need to go to a social group or something I think?!  It would be nice to meet people going through the same. 

All the best to you all on this ridiculously difficult and yet empowering journey!! 🥊💪

x❤️x

[jasmine1897]

I can’t give any advice as I haven’t been through the treatment however I go with my mum each time, and she says please don’t be scared. It’s actually natural to feel anxious as her heart rate is so high she has lorazepam now to calm her heart rate down (as they know it’s due to anxiety). The worst side effect she has had is achy joints, so it does effect everyone differently and we did read many horror stories so prepared for the worst!  I’m so pleased you will finish chemo next month, and I wish you and everyone all the best with treatment. 

Xx

[Purpletrunks]

Hey Emzlew,

Sorry to hear you are struggling... I'm at exactly same point. Start T and h/p tomorrow. My kids have given me a cold, and I feel like crap. I cant stop crying, not in a depressed way.. just in a really sad way. I'm really scared of doxetaxol. I feel very strongly, in a toddler tantrum footstamping kind of way, that I dont want to go in tomorrow!! 

I was under the understanding that I'm getting T tomorrow, and like jasmine's mum, i have to stay in for 6 hours to be monitored. Then back thursday for another 6 hours. 

I think it feels particularly hard because it's been going on so long, and has so long to go. Although i realised the i can now say, chemo finishes next month.. and that feels good.

Once we have got through this next round, I reckon we are on the home run....... 

😘😘😘

[KathCurtis]

Sorry to hear it’s so tricky atm Emzlew. Sometimes it feels all too much and emotions just need to flow. Usually a good cry helps - hope you can soon recover your good spirits. Thinking of you 

Kath

xx

[jasmine1897]

Hi Emzlew

my mum is currently going through Docetaxel, Herceptin and Pertuzumab. She has just finished her 3rd round with minimal side effects. They give her the pertuzumab first on the first day, followed by herceptin and then Docetaxol the day after (this is sometimes done separate days too, but we did have a 4 hour monitoring period after treatment to watch for any side effects, but this is only for the first round). I’m not sure if this is what you meant by if you’ll get docetaxol first but my mum takes frozen ice lollies and frozen fruit to keep the mouth ulcers at bay! Not sure if it’s working but she hasn’t had any so far. I believe docetaxol has to be given subsequent to the targeted therapies but not sure of the reason. Please let me know if you have any questions as she would be more than happy to answer.  X

[CureDars]

Emzlew,

Don’t apologise! No wonder you’re feeling fed up. As an older person I have so much respect for all that you are coping with. I can tell people to keep away with their possible germs but must admit it is very lonely in the low immune week. Good luck!

CureDars

[ClaireL]

You've got this! You've done so well so far and this will be another hump to get over. 

I started my paclitaxel yesterday and feel s lot better than I did on EC. Less head fog, less tired so far. Spent the day doing jobs but sitting down to Netflix now for half an hour with my mum's dog that I'm babysitting today. 

I don't have experience with the other drugs  you mention so cant help you im afraid. You are going through so much so cut yourself some slack here. You're doing amazing!!! And we are always here to listen to a good moan!! Xx

[Emzlew]

Absolutely Shi!! ❤️

Kath, you started this in October, regardless of what's happened since. 

We are all in this together!! 

Please keep in touch and let us know how you're doing? x❤️x

I'm starting the T part off FEC-T this week.  I'm meant to be going in tomorrow, Thurs and Fri.  Will they do the Docetaxel part first do you think? 

I'm also having Herceptin and Pertuzumab.  Does anyone have any experience of these yet?  I know everyone reacts differently but just wondering what you have found with them?  

My little ones have all had a nasty cough/cold and have shared it with me!! 🙄 

I'm poking myself with a thermometer every couple of hours and I seem to be doing ok so far...

I had my bloods yesterday.  Do you think the fact I have a cold will affect the results?  Will it matter that I have a cold when I go for treatment?  I wouldn't normally worry too much if treatment was delayed for a few days but when it's 3 days is have to rearrange including childcare for my 3 year old twins, school pick up for 5 year old and my autistic teen-ager is a bit of a pain!! 

It's just typical it's happening this week when it's the awkward one!! 🙄 

Sorry to have a moan..  feeling sorry for myself today and ridiculously emotional..... Aaaargh!!!! 🙈😭😱😒

I hope your are all doing as well as you can be?! xxx❤️xxx

[KathCurtis]

Thank you Shi, I will do.

Wishing you all a good night 

kath

x

[Shi]

Kath, please let everyone know how you get on next week on this thread and you will be a gal of 2 chemo threads that’s all, I am sure your Oct 👭👭friends on here will agree ❤️❤️ Hope you’ve been getting lots of 🐾🐾🐾snuggles 😘💕💕✨✨Shi xx

[KathCurtis]

Just saw your post from yesterday Cherry. Hope it’s all clear 🤞.

i had no idea about the cough problems people are reporting. Is it specifically with FEC?

back to see breast oncologist next week to hear next stage of my plan. It may be surgery for the breast before I restart chemo as it shrank so much after the first two treatments of the one round i had ! I think that must be a good thing, but having only just had surgery i am not wild about more surgery on the same part of my body so quickly. Anyhow we do whatever we are told is most effective - what else can you do!

 I don’t really feel I qualify as an October chemo starter anymore given how quickly i got diverted onto another track. I have really appreciated the support of you lovely people and will look in on you all from time to time, but I guess I may join a new group chat when I finally get going again. Wishing you all minimum pain and maximum gain!

love

Kath

xx