August 2018 Chemo starters

[Georgie Gee]

Hi All, 

Jude and Sunfower18, I am very interested to hear your experience on T so far. Hope your aches and tingling bits settle... it's  all so horrid isn't it?! 

As you know, I have had an awful time with FEC, and was due to start Herceptin and T on Thurs and Friday this week, but because of all the neutropenia and hospital admissions, I had a meeting with the head oncology nurse on Thursday instead of treatment.  Onc has decided that I am very over sensitive to chemo drugs full stop!..... I tend to agree 😫!!!

So they have planned to only give 75% of the full dose, even before I start... and only 50% of the steroids.  Don't understand all of the technicalities, but the nurse said that they are trying to keep me out of hospital.  They're giving less steroids because he said they didn't appear to make much difference with FEC, and even with the white cell booster injections, I still had neutropenia and 3 trips to A and E with high temp. and infections. 

They are giving me 2 whole weeks of fluconazole and mouth washes too, since the oral thrush was so bad that I could hardly open my mouth whilst in hospital last time.  When they asked me to say the obligatory 

'aaaaah', I only came out with a very husky oooooooor!! 😂🤣..... 

So it's Thursday for Herceptin and Friday first T.  

Love to all, especially those on treatment this week or next ❤️

Georgie ❣️

[Linda Corinne]

Jude 1962 I noticed you are trying yes. Are you trying both water and oil lubricants or which do you think is best? Ta.
Linda x

[SB1610]

Hello all

I've had a bit of glitch in my treatment. My blood tests showed that one of my liver enzymes was quite high so they are delaying my 4th treatment by a week to give it time to settle down. Wasn't the news I was expecting as so far I feel as though I've been quite lucky with the fairly minimal side effects I've suffered in comparison to some of you.

I feel fine - really my pre-chemo self so I'm hoping it will sort it's self out.

Has anyone else had this issue?

Sue xx

[Sunflower18]

Hi,

I hope everyone is ok.

Jude, Yes completely agree- the nausea was awaful with FEC.

i was really tired yesterday, the worst I have been and didn’t even make it out for a walk. I couldn’t lift my legs.

Spent most of the day curled up watching trashy TV and sleeping. 

Good  nights sleep though and I’m actually venturing out to take my daughter to her netball match this morning, something I couldn’t have even contemplated yesterday! I may well sleep for the rest of the day as I will probably be exhausted!

Have a good weekend all

xx

[Sunflower18]

Hi,

I hope everyone is ok.

Jude, Yes completely agree- the nausea was awaful with FEC.

i was really tired yesterday, the worst I have been and didn’t even make it out for a walk. I couldn’t lift my legs.

Spent most of the day curled up watching trashy TV and sleeping. 

Good  nights sleep though and I’m actually venturing out to take my daughter to her netball match this morning, something I couldn’t have even contemplated yesterday! I may well sleep for the rest of the day as I will probably be exhausted!

Have a good weekend all

xx

[Jude1962]

Hi Ladies
Hope you are all doing ok & coping well

Jo - the tingling fingers & toes started yesterday & today I ache all over & feel like I’ve been kicked by an horse! I’ve started to take pain killers just to keep on top of it. I’m also keeping an eye on my temp as I do feel slightly under the weather - but it’s a lot better than constantly feeling sick.

Take care all

Jude x

[ktk]

Hi Jo. I took codeine for the bone ache. My GP advised not to wait until the pain got too bad. I found my mouth was hideous, it felt as if it was covered in lard. I couldn’t taste anything and my tongue felt numb. Unfortunately it didn’t stop me eating and I craved sugar and salt! I have put on all the weight I lost☹️

My worst SEs with T were diarrhoea and indigestion. I got a few hot flushes but no prolonged temperatures. Just taking it easy and looking forward to the drugs leaving my system.

Good luck with the rest of your treatment. Kxx

[Sunflower18]

Well done ktk in finishing your chemo!

I’m now on day 5 of T and luckily sickness/nausea has stayed away....

Feeling very tired though and my bones ached liked anything last night, really uncomfortable but think I should take some painkillers if it gets worse agin.

My throat is also sore and such a weird taste but think that is to be expected. Ice lollies at the ready! 

Ktk as you have already said,  with FEC there was a pattern but I’m at that awkward stage where I dont really know the pattern this is going to take and whether my SEs are side effects or an infection but keeping an eye on temperature. I’ve decided that I’ll just take each day as it comes and if I cannot do anything then just rest- I managed to get into work in the last week of the FEC cycles but if I don’t this manage it with T, well it doesn’t matter...

Take care everyone 

jo xx

[ktk]

Hi Memar. I am TN too, although I had surgery first. Talking to the surgeon and oncologist they said it would make no difference to the outcome but the surgery may be less if the chemo shrinks the tumour.

Re chemo, I found FEC made me feel like I had a bad hangover for three or four days, which I could keep on top of with the excellent anti sickness and painkiller meds I was given. I then had two good weeks and could make plans etc. I found the Y cycles more difficult because you don’t feel sick so are ok for the first few days. I then went downhill mid cycle, feeling very tired, with diarrhoea. Had a few days in bed but better in the last week. I found that I couldn’t make plans with T as I didn’t know how I would feel day to day. But do remember it is different for everyone!

I finished chemo on Wednesday 😁. Start rads at the end of the month. Good luck with the rest of your treatment and feel free to ask anything! Kxxx

[Memar14]

Hi all,

A little unsure of how this works. I have just finished my 3rd cycle of FEC and due to have my first of 3 T on 22nd this month, Just wondering if the SE from the T are likley to be as bad as the FEC ?? My cancer is triple negative and is currently also sat in atleast 3 lymph nodes, hoping having the chemo before surgery was the right move, feeling confused and wondering why I'm putting myself through it all 😞

[Purplebarb]

Hi Ladies. Doesn’t appear to be any recent comments but perhaps looking in wrong place?! Hope you’re all doing ok. I questioned why I was putting myself through this **** but few people said how would you feel in future if you didn’t have what’s offered. Last of 3 FEC yesterday and then pacetaxol for 12 weeks then radiotherapy. It’s a long haul but there will be end to it!!! Keep strong ladies. Love and hugs to you all 🤗🤗🤗

[Cat67]

Hi Lovely Ladies,

Jude & Jo – Well done on getting through your first T/Herceptin – another tick! It’s good to hear how you are getting on, I have my first next week (12th) and I’m really hoping I can avoid the nausea (which was by far the worst SE for me during FEC), but will have to wait and see!

Sue – thanks for bringing up the topic of ‘’dry bits’’ – I’m not aware of any other products other than those already mentioned by you and Jude.

I can highly recommend the Look Good Feel Better course…even if you go just to get the goody bag which is great! They introduced different colours for my eyes and lips that I wouldn’t have used otherwise and really liked it!

Take care everyone,

Cat x

[Jude1962]

Hi Jo

I’ve had another good day today & even went for a 5.5km walk - I do find that I need the fresh air & I think walking mainly on my own gives your brain a bit of processing time (if you know what I mean!)

I will await the tingling to start! Hope yours isn’t getting any worse
Also I’ve been swilling with the mouth wash to try & avoid any mouth issues, as with the first EC I did get mouth ulcers

Take care

Jude x

[Sunflower18]

Hi Jude,

yes I agree, long may it continue.

Wide awake again last night at 3 but I have now finished the steroids for this round so hopefully it won’t be so bad tonight.

Day 3 - im getting tingling/pins and needles in my feet though and my legs do ache today but at least  I have not got the nausea, so I have been eating well!

Im just playing the waiting game at the moment- waiting for all the other side effects to kick in.....hoping they don’t though! Planning to go out for a short walk later so I will see how far I get.

take care

jo x

[Jude1962]

Hi Jo

Thanks for the info

Have to say at the minute I’m preferring T to the EC I had previously! I agree that the E (the red one was awful)
I had no reaction to the herceptin on Monday just a long day as you have to stay on the ward & be monitored for 6 hours, but due to the steroids I barely slept Monday night!
The T was fine, no nausea or sickness & I ate as normal yesterday - did go to bed around 9.30 though & slept really well. Long may it continue

Take care

Jude x

[Sunflower18]

Hi Jude,

Sorry I don’t respond yesterday, very tired so was in bed by 9.

yes i I did get injections but I’ve been on them the whole way through FEC as well.

The nurses struggled yesterday with finding a vein that hadn’t collapsed but once they had canula in it didn’t take too long - about 1hour and half as they dripped it in slowly to make sure I didn’t get a reaction. I had pre sickness meds first and then a flush through afterwards. Much easier than the 3 FEC drugs as I didn’t have that awful red injection!

I had a good night but wide awake at 3 - think that was the steroids kicking in but no sickness/nausea today which is good for me as I felt really nausea on FEC.

Hope you get on ok today with your first T.

jo x

[Jude1962]

Hi Jo

Well done on the first T - how long did it take?
Have they given you injections to do at home to generate the white blood cells?

Hope you have a reasonable night - take care

Jude x

[Jude1962]

Hi Sue

I must book a lbfg course, I was waiting until my eyelashes & eyebrows had gone so they could show in real time! There are quite a few courses around me so I should be able it get on one in one of my good weeks - hopefully!

Look forward to you reporting on the down there products!

Take care

Jude x

[Sunflower18]

Hi all,

well I’ll I have survived my first T session. Not major side effects actual infusion, although I needed 4 attempts to find a suitable vein, they all had given up throug( the FEC cycle. Drs considered a PICC line but as I now only have 2 more left they really don’t want to put one in.

ill keep you updated on SEs. Feeling nauseas though at present, but I was really sick with FEC so not surprising I suppose!

Good luck to everyone else starting T this round. X

[LALALAND]

Hi Tarnia

 i had my 3rd FEC last tuesday my 1st T on the 16th, i have such a sore mouth G P has given me some Difflam mouth wash just something else to contend with. At least we are half way there. Good luck with your your 1st T keep in youch chin up. 

    LALA(linda)  xx

[ktk]

Hi Sue, LGFB is supported by lots of high street brand, including Boots, Clinique etc. If you go to one of those they will show you how to do your brows, put on false lashes etc. Maybe even give you some freebies!!! Still go on LGFB though!!! It is worth the wait 😁. Kx

[SB1610]

Hi Jude

I've just booked on (or rather attempted to book on) to a 'Feel good look better' session to be told there's a 2-3 months waiting list. This is a bit of a downer as I was hoping to be taught how to makeup my eyes to compensate for lack of lashes.

I think you can order instructional CDs so might do that while I'm waiting for my number to come up!

I've read about YES but not given it a try yet. I'm currently using Replens MD which can be used all the time - not just when getting frisky 🤭. Will report back on the success or otherwise!

Good luck for tomorrow - hope the new regime goes ok

Sue xx

[Tarnia]

Hi Jo

please let me know how you get on with your first T. I had my 3rd FEC last week and my first T on 18th. I’m hoping the aching bones isn’t quite as bad as I’ve been told. But like you say one more done. Good luck for tomorrow.

Tarnia

[Jude1962]

Hi Jo

Good luck with the T - hope you get on ok with it, I’ve got my first one tomorrow. Not sure what to expect!

Take care

Jude x

[Jude1962]

Hi Sue

Good luck with your next EC - hope you keep on having limited side effects
I’m starting to lose my eyelashes & eyebrows now, which makes me a bit sad ☹️ as I’ve always loved mascara - got a new eyeliner yesterday so need to start practicing!
I know what you mean about dryness down there, I’m post menopause so combining that with chemo!!
I’ve seen YES (corny name) recommended by several ladies so am going to give that a go!
Had my first herceptin today so am still sat on the ward in case I hsve any serious side effects, all good at the moment - first T chemo tomorrow

Take care

Jude x

[Sunflower18]

Hi all,

just checking in to see how everyone is coping.

i have my first T chemo tomorrow.....feeling slightly anxious but it will be one more done! 

Best wishes all

jo x

[SB1610]

Hello ladies

I haven't really posted in a while but I have been following the thread. Sorry to hear that some of you have been having a really rough time but it sounds as though everyone is steadily improving so that's good news.

I'll be heading into my 4th of 6 EC cycles next week. I'm intrigued that there are many different treatments being offered to us all and slightly bemused that someone may have similar diagnosis but be offered something slightly different. I guess this is down to the fine-tuning they do for each of us taking into account other health factors too but a part of me does wonder about the differences and if there might be a better treatment for me. I guess you just have to trust in your care team.

To date the EC hasn't been to harsh for me - a bit of nausea and fatigue ( now that's tempting fate as I head into round 4) a truly skanky tasting mouth, taste buds changes (I'm mean how can fresh fruit taste salty???) and hairloss. I eventually shaved my head this week - mainly so I could wear my wig with confidence - and after weeks of looking like Golum it was a bit of a relief.

My wiggie look has been met with exclamations of delight and how fab it looks and more than one comment that I should adopt that style when my own hair comes back as it really suits me!!!! Not sure what that says about my previous look 😂.

Because I know it's a wig I was really conscious the first few times I ventured out - convinced that it would slip or get brushed off or that there would be double takes and nudging from strangers as they passed me by but that hasn't happened - I'm presuming that's because it doesn't actually look like a wig rather than because I've developed a superpower and become invisible!

I think my eyebrows and lashes are starting to thin - as I'm quite fair it's not hugely noticeable right now but I'm sure going to look weird if I can't use mascara any more. I've also found that my armpits are bare but my knees are still furry and other body hair started to thin around the time I started to lose hair on my head but that seems to have halted so I'm hoping my eyelashes won't go completely!

One thing that is driving me nuts (and as no one else has mentioned this I'm choosing to believe it's because you are all too polite rather than because I'm the only one!,) is a significant drying in my lady bits. Not entirely sure if this is because of chemo or menopause or a combination of the two. I'm having a challenging time finding something that helps other than for short term relief and this has lead to some quite frank discussions with my GP and oncologist! I live in hope I'll find something that will help.

Well I've rambled on for long enough - enjoy the last of the sunny weather - if you believe the tabloids we'll be knee deep in snow this time next week! Still at least the hot flushes will come in handy if that's the case!

Hugs and love to all

Sue xx

[Mai7]

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[Jude1962]

Hi Georgie

Well done on getting home, I hope you are starting to feel better
Good news on the herceptin & chemo bring moved out a week, hopefully you can rest up & build up your strength. Mentally the extra week should he’ll as well

Take care

Jude x

[Cat67]

Hi Georgie - great to hear that you are home at last. Rest up and take care. 🤗
I will be with you on 12th Oct as also starting Herceptin and T on that day.
Cat x

[Georgie Gee]

Hi everyone, 

Pleased to report that I am now home, infections cleared up but still in a bit of shock about the blood clot.  

Doing my own injections for thinning blood, but I don't know when that will end. 

They have put back back herceptin and first T a week, so will start on11th and 12th instead next month. 

So so tired.  

Love to you all 

Georgie Gee xxxxx

[Cat67]

Hi Jude - No need to apologise, chemo brain gets to us all! Yes they did say I would have Herceptin then at least a 3 hour wait before chemo so I will prepare myself for a long day. I am having Paclitaxel rather than Docetaxel, for 9 weeks. And yes please, let me know how you get on. Good luck!

Hi Georgie – I hope you are being well looked after and are home in your own comfy bed very soon.

Hi Caroline – good luck with your results.

Take care everyone

Cat x

[Jude1962]

Hi Caroline

How did you get on today? Do you feel any more comfortable with your treatment plan?

Jude x

[Carolinenaidoo]

Thanks Jude

I’m pretty sure I’m not having herceptin and I’ve read quite a lot about the possible affects on the heart. I’ll definitely ask some questions. That’s if the MRI shows the EC has done it’s stuff and it’s definitely more chemo!

[Jude1962]

Hi Caroline

Unfortunately there don’t seem to be many good stories on docetaxel 😂but it is a 3rd generation chemo drug & is pretty badass to those pesky chemo cells
I’m starting it next week along with herceptin - are you having herceotin as well? They don’t generally give herceptin with EC as the E element can effect your heart as can the herceptin so they don’t give together
Maybe you need to check with your oncologist as to why they are suggesting it
Good luck

Jude x

[Jude1962]

Hi Georgie

Good news that the infection has cleared up
The blood clot on your lung is a little worrying I would imagine but at least it’s been found & they can treat it
Fingers crossed that you get home soon

Jude x

[Jacqs]

Georgie. So sorry to hear about your latest development. Have they told you how long you’ll be on the blood thinning drugs?
I’m sure you will be happy to be home. Take it easy & wishing you a speedy recovery x

[Carolinenaidoo]

Good evening ladies. I haven’t checked in for a while.
I had an MRI on Monday and see the oncologist tomorrow to see if the tumour has shrunk so more chemo or if not discuss surgery. I’m on EC I think that’s what it’s called at the moment but I think they will want to move me to Docetaxel. I don’t know why but I’m pretty concerned about that move. I think it’s because fingers crossed, apart from tiredness I’ve been ok. Anyone have some good stories about Docetaxel ot anyone refused to have it and to continue on the EC? Thank you.

[Georgie Gee]

Hello all,

A mixed day here at the hospital!

My antibiotics have ceased, as the infection is gone. 😍😍😍

Went for a chest scan today and they found a blood clot on my lungs. 😫

So in a nutshell, they will start blood thinning drugs later this evening, and test blood again tomorrow. If the platelets are ok, I can go home 😃.

All a bit of a whirlwind if I'm honest!!

And chemo has been delayed for a week, which I am very pleased about..... I need to get my breath back!!

Love to all!

Georgie Gee ❤️

[Jude1962]

Sorry Hi Cat!!

Chemo brain x

[Jude1962]

Hi Sue

Hope you start to pick up soon from your last cycle!

With regard to the herceptin & T on the same day, be prepared for a long day as they might give one then wait a few hours before the other
My oncolonist had said that if you get a reaction (which is more likely for the first time), they like to know which drug has caused it - hence on 2 separate days

I’ll let you know how I get on - not looking forward to it but halfway there now 💪

Jude x

[Cat67]

Hi Lovely Ladies,

Georgie and Jacq’s – so sorry to hear about your hospital visits, you are not having the best of luck ladies……but I am sure that will change! Sending you lots of hugs and hoping you both feel better very soon.

Jude – I’m still feeling icky after my third FEC on 21st Sept but at least it was the final one, I move to Herceptin and T on 12th Oct. Interestingly I am booked in to have my first Herceptin and T on the same day rather than consecutive days like you.

I’m also feeling the cold especially on my head so sleep hats turned out to be a good buy! And thanks for all the top tips to keep well moisturised.

Take care everyone

Cat x

[SB1610]

Thanks for the tips ladies!

Sue x

[ktk]

Oh yes I forgot that you put olive oil on baby’s cradle cap. Good tip!!

[Chirpy Bird]

Hi Sue
I got a revolting sort of cradle cap on chemo & was told olive oil by the lady at cancerhaircare. You just massage it in very gently. Sorted my dry scalp out x

[ktk]

Sue Moo Goo is good, available from Amazon, but top recommendation is to get your GP to prescribe Doublebase. Make sure your have filled out the free prescription form! Your face moisturiser is good but I think it needs something a bit more industrial. My skin has got drier with each cycle so I am slathering Doublebase on everywhere! It feels a bit greasy at first but is stopping the flaking and is free!!! Kx

[Jude1962]

Hi Ladies

Sue - I’ve been using a baby shampoo for the last couple of weeks & my dry patches have all gone, so might be worth a try

Georgie - it’s going from bad to worse for you!
Hope they get you sorted quickly & that you cope ok in hospital, at least it should be quieter in isolation - thinking of you x
I’ve seen my oncologist today & am having herceptin on Monday - you have to be monitored in hospital for 6 hours after the injection for the first one! I then go back the next day for the T!

Jacqs - you’re having a tough time as well, your timescales sound tricky, 6 months to get sorted - thinking of you x

Hope everyone else is ok - take care

Jude x

[SB1610]

Hello ladies

Does anyone have any tips on what I can use on my scalp - it's quite dry at the moment. Wasn't sure if to use face moisturiser or body moisturiser or if there is something out there more suitable? I've read about olive oil or almond oil - has anyone else used either of these?

Thanks in anticipation,

Sue

[Jacqs]

Aw Georgie - sounds like you’ve got same rotten luck as me.  I was admitted to hospital on sat evening after initiallly been sent home on Friday.  Turns out it wasn’t neutropenia.  I had blood clots on my lungs & pleurisy.  Lots of antibiotics, blood thinning injections for next 6 months & a shedload of painkillers.  The suspected infection in my central line may not be as serious though but will know for sure on Friday when blood cultures come back.  

Love & hugs from one unhappy bunny to another.

Thank you all for your get well wishes xx

[LALALAND]

Oh Georgie 

 I am so sorry to hear your new's not having much luck at all Thing's can only get better keep your chin up.

 lot's of love and hug's 

LALA (Linda)xx