August 2018 Chemo starters

[ktk]

Hi Georgie. Sorry your oncologist continues to be so obstructive. I bought Picc covers from Etsy and there are cheaper ones on eBay too. If you have any old leggings they would make good covers too.

My Docetaxol regime is a bit different from Sally’s. I have to take steroids for three days and also continue the Filgrastim injections. Far fewer anti sickness though, and I haven’t felt sick. Not as tired straight after either. Three days in I am getting a bit of bone ache but I’m on top of that with codeine. Also I have slept much better now the steroids have finished. Hope the info is useful. Kx

[Georgie Gee]

Hi all, 

I'm just coming up for air after day 2 after 2nd chemo proved more exhausting than last time.  Nausea and in bed by 6pm.  Did a bit of browsing online for how to make picc line covers, but nothing that really helped.  

In a moment of inspiration, I suddenly remembered that I had some long leg warmer style socks!  

So I cut the toe off of one of them and slid it up my arm😬... I even have the heel of the sock in place on my elbow 😂....

I thought that might be helpful; I do think the picc line covers online are expensive, so I am still looking at actual leg warmers online now (remember, that would give you 2 picc line covers as they come in pairs.....).  Found some for a fiver on amazon prime, so they are coming tomorrow, as are my daughter and fiance..... my daughter begged me to get something, as looking at the line when my flimsy hospital bandage comes off regularly, she also feels sick! 

Am now finally downstairs and managed a light breakfast after anti sickness dose. 

I did request emend from my oncologist, but she refused it, and advised a double dose of what I had last round, as early morning treatment. 

I have asked to change oncologist.  Too many doubts about being on a conveyor belt, and not allowed to make any suggestions or ask questions and now not allowing emend....  as I have said before, I would love to swap places sometimes with an oncologist such as mine (now previous I hope) for even half a day, and I think some of the arrogance about their status might tone down a notch or 500!!.... am I being over- reactive?

thanks for reading..... and for the picc ladies, try the leg warmer sock idea if you have any..... 😉😘

Georgie xxx

[SallyG63]

Hi, the being flushed is probably due to the steroids they give you. They can have that effect as well as raising blood sugars levels significantly (as I'm also diabetic I managed to persuade my oncologist to halve mine). Again that changes on Taxol. I now don't have steroid tablets, just one intravenous steroid infusion on chemo day which affects my sugars much less and is much better.

[Multitasker]

Thanks Sally, thats reassuring. I dont want to rush off and get my knickers in a twist!

This time I have the same anti sickness and you and they seem to be working fine today so far. I am very flushed but I have seen from other posts that is quite common.

Glad to hear cold capping is working for you. I wanted to give it a try as its at least one thing I can do to help the treatment. I feel that so much is out of my hands and you have to go with the medical experts.

There seem to be alot of us getting used to wigs this week. I suppose one silver lining to rainy BH is less sweaty wig heads. 😂

[SallyG63]

Hi Multitasker from the June chemo thread.

I think the dosages are related to weight which is why they weight you at clinic, it definitely is for some things but someone may correct me on this. I had 4x Ec (2 weekly) and am now partway through my 12 weekly taxol (just done number4).

Ah, just checked in my book and my EC dosages were the same as yours. I found it fine side effect wise (had none) though I did have a dvt in my chemo arm after the 4th. The filgristim injections did produce aching back and hips for half a day on the middle weekend but apart from the first time that wasn't too bad. My oncologist gave me cocodamol for that and I only needed to take one dose to sleep. Now I've moved on to Taxol, no filgristim so that not happening now.

What anti sickness are you on? I had Emend for 3 days on EC and Ondansetron on days 1 and 2 which worked just fine. I was also given domperidone to take as and when but I still have half of them left from cycle one cos I stopped taking them when I realised I didn't need them.

Sorry the cold capping hasn't worked for you. I still have about 80% of my hair left and it's growing now on Taxol. I have a thin patch right on top where a good old comb over can cover it and that's definitely seeing regrowth there.

As usual, after a really hot summer were due a grotty August bank holiday I think. Bloody typical !

[Multitasker]

Hi Ladies

Best wishes to everyone who had. Chemo this week. I had my second EC yesterday. 

I was really nervous after the reaction that I had last time. The Chemo nurse suggested trying  a different anti sickness drug as the first one might be the cuprit for the really bad stomach cramps I had. I also tried to reduce my calorie intack the day before (no way I could fast!!) and used a new focused breathing technique. It all helped a bit, still pretty brutal but an improvement.

I was wondering what your EC dosages are? Im have 4 EC followed by 4T. I was reading up on side effects and noticed my dosage looked high. I may be worrying about nothing. I have IDC grade 2, sentinal node affected but others clear. Lumpectomy with level 1&2 node clearance.

i am getting 180mg of Eprirubicin, followed by 1200mg Cyclophosphamide every three weeks.

Sadly despite using the cold cap my hair has nearly all fallen out. I was feeling quite chuffed in the early weeks and then Literally day 19 is started to shed big time. Its nearly all out on, the postive side  I guess it will make treatment time a bit shorter.

Really wishing you all a good bank holiday weekend - aghhhh cant believe august is nearly over 😬

[JacqB]

Hi Sue
It Took about twelve hours, I probably could have squeezed out more moisture but I didn’t want to muck around with it too much first time so I pretty much left it to drip dry.
I think they are pretty resilient 😊
Jacq x

[SB1610]

Hello Jacq

Good to hear it survived - I bought some wig conditioner in the shop - it came as a package deal with a fake head for the wig and some wig shampoo. To be fair he did tell me it was like fabric conditioner but I'm not sure it'll be as nicely scented as what you've used!!

How long did your wig take to dry?

Sue x

[JacqB]

Hi Sue
My wig survived the wash 😊 took a tip from YouTube and rinsed with a little fabric conditioner. I will now be scented with jasmine and orchid blossom!
Jacq x

[Jude1962]

Hi Amanda

My sleeping patterns are rubbish!
I normally wake up at 4am & read until 6ish 😂😂
Then doze for a couple of hours

I’ve no idea how I’m going to sleep normally when this is all over!!

Take care

Jude x

[AMB67]

Hi Jude

Hope you are ok and start picking up soon.

I am the same with the 2nd round, feel like have been hit by a brick wall, taking all my energy just to get dressed today.

Hoping for sleep tonight but fully expecting the 2-3am wake up.

good night all !!

we can do this .......

Amanda xx

[Subee7]

Hi everyone, somehow I seem to have started a new thread! Not really sure what I am doing! Will try and delete it.
Thanks for all your encouragement, definitely one cycle at a time. I braved the shave last night as my hair was coming out in handfuls and my head was so painful. Once shaved the pain went. Now rocking the scarves.
Have a good weekend all. X

[Jude1962]

Hi Ladies

I do agree that the hair loss is one of the biggest things & very hard to come to terms with along with all the nasty side effects
I’m not feeling too bad today other than being really tired & flat - I don’t know if it’s because I finished the steroids yesterday but feel very deflated
Made myself go for a walk even though it was raining on & off as well as being cool but it blew away some cobwebs

Hope you are all coping ok & sleep well

Jude x

[Cat67]

Hi all you Lovely Ladies,

Just catching up after a few days...

Kip - I hope you are feeling better and are home very soon.

KtK - Sounds like I am on a similar path to you, 3 cycles of FEC and then 9 weeks of T (I will also be having Herceptin). Pleased to hear you are getting on so well!

AMB67 - Loving the Sigourney Weaver reference, made me smile....especially as I shaved my hair this afternoon! 

SB1610 - Totally understand where you're at with the hair loss thing. I took a decision to shave mine today after the very first signs of it coming out last night. Not easy but I felt better afterwards. We are all different and should do what feels right at the time. I have the same fears about wig blowing off but will test drive the new wig tomorrow, first stop will be the hair salon to get the fringe chopped.

JacB - I washed my wig yesterday (decided to wash it before wearing it for the first time), I was a bit nervous but it looks exactly the same as it did before I washed it - result! And it's a helluva lot quicker than doing my own hair…....every cloud 🙂

Georgie - Good news about the PICC line and I have my fingers crossed that you get some positive news about the parking....sooo frustrating.

I hope you all have a good few days and find time to relax and enjoy the BH weekend

Stay strong….

Cat x

[SB1610]

Hello

Kip and Jacq - thanks for your support - I do know I'll come around to it and that I probably just need a bit more time - on the positive - sleep cap off and no bald spots today 🙌

I know this is just passing thing and I'll either get along with this wig or I'll just get another one!

Jacq - Glad to hear your wig feels secure as that is a concern that I have that it'll slip or get blown out of place or that I'll brush up against something and it'll get snagged. Let me know how the washing of it turns out. Also another worry of mine is that it'll come out looking s complete synthetic mess. I really do need to get out more and just stop fretting about stuff - my OH often says I'd worry about not having anything to worry about . Good luck with the wash!

Sue xx

[JacqB]

Hi Sue
I got so upset when I tried my wig on with hair as, like yours, it just looked and felt wrong. Once I’d shaved it went on easily, felt secure and, so everyone tells me, looks fab. I’m about to wash it for the first time so fingers crossed it comes out looking ok!
Jacq x

[Kip]

Hi Sb , the hair thing is a big issue but youll cope, the thought is harder than the deed. I am on cycke 4 of 6 nd mh hair is coming back already, fluffy stubble so far but it's hair! Be strong nd take a day at a time

[SB1610]

Morning all

Good to hear that most of us are coping with what is being thrown our way.

It's my 2nd day after round 2 of EC. Started to feel dodgy around 6:30 yesterday, tried to ignore it for a while but eventually gave up just after 8 and went to bed. Fell asleep more or less straight away and woke up what felt to be hours later feeling I'd had a fab sleep to find it was only 10:30!! Spent the next 4 hours tossing and turning (thanks steroids) and playing the word association game on here and being entertained by the Daily Mail and rants of various people (I can waste hours reading the comments on some articles - if ever you are having a slow day take a look 😀) but then i did manage to get another 4 hours sleep.

My OH brought me breakfast in bed before he went off to work and I'm just willing myself into the shower but dreading being vertical incase the sickness hits.

Like others my hair is coming out so I'm wearing hats and scarves. Ive had a wig for about 5 weeks now - loved it in the shop, tried it on Monday for the first time - couldn't get it to sit right and had a complete meltdown (Monday was a bad day for me as I was really low due to the hairloss which has been the most difficult thing for me to accept - the other SEs I've had have been fairly short lived up to now but this is a longer-term thing to deal with and even though my hairdresser says my hair grows quick I reckon it will be 9-12months post treatment before it's back to how it was).

Im planning to go back to the wig shop to see if they can help me position it properly and maybe do something with the fringe which is the bit I'm really unhappy about - I did speak to the chemo nurse y'day and she said it would probably sit better on a bald head - at the mo I've just got a general thining of hair - no bald spots yet but who knows that could change once the sleep cap comes off and I've showered - but I can't bring myself to shave - I don't know if I'm clinging to a false hope that I won't lose if all so that when it does start to grow back I've got a head (no pun intended) start and whilst I understand at lot of women feel as though they are taking control by proactively shaving - I just feel as though I'd be admitting defeat and I'd be left wondering what if. I'm no longer traumatised by my hair coming away so I think whilst ever thats the case I'll leave as is. Apologies for the ramble but I do find it cathartic.

So I hope you all have a good day and that you manage to enjoy the bank holiday weekend with family and friends.

Good luck to those of you that are on chemo day today and for those of you struggling to get a parking concession agreed - keep asking and nagging until someone comes up trumps for you.

Happy days everyone

Sue xx

[AMB67]

Hi ladies

Gosh..... not been on for a couple of days so just catching up with you all!

There are some ups and downs......bless you all.

Sorry to hear you are in hospital Kip, hope you get sorted and home very soon!

Georgie good to hear you got your pic line in eventually and hopefully it will save a lot of hassle for you now. Good luck and hugs going your way for the next round.

On the parking issue I only found out this week from another patient that if we take our ticket from the machine into the department we are attending be it chemo, outpatients or a&e the reception stamp it and we don't pay.

This is York trust so it obviously varies depending where you live. 

Jude, like you am just coming up for breath after having 2nd FEC 2 days ago. It seemed to hit me like a brick wall 5pm that afternoon. More so than last time.They changed my sickness meds which they warned can cause drowsiness...that's all I need more spaced out than normal but they seem to be working. They also gave me lansoprazole for the gastric issues. Haven't had the hangover type headache this time but was awake 2am on the dot last night.

We basically just have to ride through this don't we?

Ktk it is encouraging to read you were fit to go out the day after your first T round. Let us know how you get on as I for one am dreading them.

Also lost most of hair now which started going on day 15 but have to say got used to it quite quickly. Was out and about with headscarves on last weekend and did not get too many funny looks. Got my wig too but there is so much more hair on it than used to so may only wear it for special occasions!

The chemo hairdresser told me no need to wear anything under the one I have and it doesn't feel as though it would blow off.

To cheer you all up....My OH said he thought he had woken up next to Sigourni Weaver in Alien 3 the other morning as my sleep cap had come off. 

Hope you all have as good a day as possible.

love Amanda x

[Kip]

Yayy well done.. keep an eye on your mouth! Salt water before anythjng happens... X

[ktk]

Hi Georgie. I’m keeping my fingers crossed 🤞 for a better time for you this time. I’m glad the Picc delivery worked so that is a good start. Keep an eye on your temp though!!

Just to let you all know I had my first T (after 3 x FEC) on Wednesday. No sickness, up and about. I even went into school to see my year group get their GCSE results yesterday. I could not have done that the day after FEC. I’m keeping an eye on the expected bone pain and will start taking codeine with the Filgrastim injections today. I also have had my nails painted black with sparkles!!😁🤞

[Jude1962]

Hi Kip

Sorry to hear you have been admitted re low neuts, whilst you are in the best place it’s a bit of a bummer!

Take care & I hope you pick up quickly & are out soon

Love Jude x

[Georgie Gee]

Hi Kip, 

i have just posted in the June thread in response to your hospital news today.  Big hugs xx 

[Kip]

Hi ladies you all seem to be doing well.  Im currently nin hospital withs neutropenia as neuts were 0.1 and temp of 38.2,. So please be vigilant of your temperature and call hotline for anything!!  😉

[Jude1962]

Hi Georgie

Pleased the picc line worked out for you today, that’s something at least
Good luck with the breast cate nurse it’s worth another go due to the high costs
Hope you get through the next few days ok - I’m just coming out the other side 😂

Jude x

[Georgie Gee]

Yes Subee, I agree with Jude; I had my 2nd chemo today. During the hard days on your first cycle you can't imagine doing it again but by the time this time came around I faced it knowing that the side effects still do go eventually and you have better days. Mine are 3 weekly. 

Thanks Jude, I will try that with the breast care nurse. The Macmillan lady said they are constantly asking the hospital bosses to give chemo / cancer patients a break.  I spent £17 on parking this week, and one was for the park and ride as it's cheaper at £2.80 but more hassle.  

All went ok today with the picc.  Much better than digging for veins like usual...  so the journey begins for another three weeks of surprise time bombs to go off.  My hair has all but abandoned me but I am enjoying scarves and accessories 🤗.  Sleep well all xxx

[Jude1962]

Hi Subee

You may find by the end of the cycle you can cope better with the idea of the next one...

Good luck

Jude x

[Jude1962]

Hi Georgie

That’s very poor re the parking - last idea ask your breast care nurse as mine arranged my permit & we just picked it up, worth a try if you’ve got the energy

Hope today goes ok

Jude x

[Subee7]

Thanks Jude,
Oncologist has changed a few things for next time as had such awful side effects. Will see how it goes. Told him I really couldn’t do 6 cycles. So taking 1 at a time. It gruelling! X

[Georgie Gee]

Went to have the picc line checked this morning. 

Waited 10 minutes, line checked in 2 minutes. 

Ventured on to the reception desk to ask about parking charges.  The 'best we can do for you is £15 a week love'...... 'how many times do you come a week?'  I told him that this week it was 4 days in a row.  Other weeks only once or twice.  'Oh no then love, I don't think it will be worth £15'.  

I ageed and went to pay the charge.    Not 'appy.  😡

[ktk]

Oh Georgie, I am sorry you have had a bad experience having you Picc inserted. Still, it will make delivery easier. My hospital gives you a permit for free parking each time you go for treatment. Doesn’t help you find a space though!!

Ladies, if your meds aren’t working phone your helpline and get them changed! You should not be being sick!! Kxx

[Sunflower18]

Georgie,

please check with with your chemo unit about the car parking. I know all NHS trust are different but the hospital I am under - North Middlesex doesnot charge for patients undergoing chemo.

Worth asking the question!

jo x

[Millsy]

Thanks for your advice sunflower I have been in contact with work and they are doing me a referral for OT, I copied your message and put in email to my manager as that sounds perfect what you are doing work wise.

[Georgie Gee]

Thank you all for your encouragement and understanding.... it helps to have buddies here who 'know!'..... 

I will indeed go to the hospital reception desk tomorrow and ask about parking charges!  The number of times we have to go per month is quite considerable isn't it.  

Love to you all, and especially to those with poisoning this week 🤢.... 

Gee x

[Jude1962]

Hi Cat

Good luck when you brave the shave, it does seem a bit overwhelming & scary but I did feel better afterwards as if I’d taken some control

Jude x

[Jude1962]

Hi Subee

Pleased you are feeling better, enjoy the next 10 days until it starts all over again!

Jude x

[Jude1962]

Hi Georgie

It doesn't seem to be getting any easier for you - will be thinking about you
I’ve got a 6 month parking permit which covers up to 2 cars by registration - it might be worth asking if your hospital does anything like it. This covers me for the hospital for chemo & the hospital (which is a bit nearer) that I go to for blood tests

Take care x

[Cat67]

Hi Jude,

Thanks for the advice. I hear you re the SEs. I was prescribed Omeprazole for heartburn and it seems to have worked a treat and Benzydamine for sore mouth and that has helped too. I plan to 'brave the shave' as soon as I see signs of it falling out.....not too long now. 

Hi Georgie,

You poor thing, sounds like you've had a right time of it! The PICC line has worked well for me so far so hopefully you will start to get the benefits from it soon.

I was surprised to hear about the hospital car park charges - where I go the car park has a Reg No. recognition system and I have been told that I can give my Reg No. to the reception and they will sort it for me, otherwise I agree it will become very costly! 

Hi Subee,

Pleased to hear you are over the worst and feeling better.

Xxx

[SB1610]

Hello Georgie / All

It might be worthwhile asking your breast care nurse if your hospital offers concessionary parking for chemo patients. I was told about this by a friend whose mum had cancer treatment and they found out about it by chance. The hospital I'm at don't advertise it but it seems if you ask you get. I now just pay a £1 per visit irrespective of length of visit.

Hope this helps

Sue x

[Subee7]

Thankyou, feeling finally normal! Has been a rough 10 days which included an overnight stay in A&E with a raised temperature which was due to injections and had doubled my wbc. Seen oncologist today who was very sympathetic and changing treatment slightly and meds for next cycle. X

[Georgie Gee]

Hello all, 

had my PICC line put in today..... eventually 😩. 

First time they thought all went well and well and commented on how relaxed I seemed.

Had X-ray but was then called back to the picc room.  It had gone into my neck instead of down into chest and heart area. 

Second and third attempt, still in neck. 

Fourth time around, in place and confirmed by X-ray.  They did say I was rare though... 🙄 Trust me! It is usually quick and painless...... 

I now now have a very sore arm, and have to go to the hospital aGAIN tomorrow to check the dressing..... so 4 times for me this week, including chemo on Thursday.  The hospital car park is doing very well; today was £6.90 as was there from 1.15 to 5.15.   Wonder what it will be on a full chemo day?.... 

oh dear.... 

but it is nice to come on here and chat to others who know what a picc is, and to see that we all have our various struggles and muddles.  

Georgie xxx

[Jude1962]

Hi Cat

They changed my anti sickness meds & steroids & added in heartburn tablets but not really helped - think it may just be a case of getting through the first couple of days after chemo & just accepting that you will feel shocking 🙁
My wig is fine & comfortable with a wig liner, it doesn’t budge at all & even when it’s windy & blows up you can’t tell it’s a wig. I’ve braved the shave & it is a better fit without a lot of hair
With regard to the neuts - my chemo unit give you a booklet that they fill in every time with your blood results, chemo drugs & medication to take home

Good luck with your visit tomorrow

Jude x

[Jude1962]

Hi Jo

Your neuts are quite low then especially as you have been having the injections
I’m not sure what the cut off point is on neuts to stop chemo but I think I’d seen on an earlier post that if you are admitted due to an infection they don’t let you out unless they are above 1?
I’ve only had 2 lots of toast but debating some soup & bread!
Hope we all have a good nights sleep

Jude x

[Cat67]

Hi lovely ladies,

Hope you are having a good day.

Jude1962, yes we all seem to be having very similar SEs don't we and like many of you I am hoping that next time round they change the anti sickness so the SEs are not quite so bad. I even ordered sea sickness bands today as heard on another forum that they may help...worth a try!

I have a question for anyone who has started to wear a wig. Is a wig liner sufficient or is tape needed to keep it on securely? I will be losing my hair soon and have my wig ready but have visions of going outside and a gust of wind blowing it off....it landing on the neighbours dog who runs off with it...okay over active imagination! 

Also, how do you know what your neuts are? Nobody has spoken to me about this but may be that is because I have only had one chemo session so far? I am at the hospital tomorrow for PICC line care so can mention it to them then.

Thanks...wishing you all well.

Onwards and upwards. 

Xxx

[Sunflower18]

Jude,

4.2 for neuts for starters was good. Mine were 3.2 .

They were 1.54 yesterday so still dropped a fair bit even with injections. 

Waht it is the cut off point for not having chemo?

I had porridge this morning and just had a cheese roll- so far so good! 

Jo

[Jude1962]

Hi Jo

The nausea & sickness is so debilitating, I’ve just managed a bit of toast which I’m hoping stays down

I don’t have to do the wbc injections but I did notice that before the first chemo my neuts were 4.22 & yesterday they were down to 1.07, so will need to be careful next week
A third of the way though but it seems a long haul until the last cycle mid November

Take care

Jude x

[Sunflower18]

Hi Millsy,

just a quick message about work. I also want to try and get into work and restore some normality in my life and to think about something else .....but also looking after me while I go through this long tough journey.

My work have been great about my work pattern over the next few months. I am basically not working the first week after chemo and then the second week I am doing bits and pieces at home, if I feel up to it. Work basically told me not to come in during the second week as low immunity week. The third week i am aiming to go in for a few hours each day. I did actually feel tired the third week and I was surprised how much it took it out of me.

I would of thought an nhs would be pretty good in supporting you through.

You may already know this but as a someone who is going through cancer treatment you do fall under the Equality Act and as such employees do have a duty to make reasonable adjustments to your working life...so bear that in mind! Also pop and see your GP and get them to sign you off but fill in the sections about reasonable adjustments -  work from home and reduced hours when feel able to do so...

Hope this helps.

Good luck

jo x

[Sunflower18]

Hi Jude,

sorry to hear the drugs didn’t work. 

I was put on another one yesterday and that didn’t work either! I also had 3 bouts of sickness last night.

Feel a bit better today and not been sick since 4am, so hoping the 3 different type of anti sickness drugs which I have taken this AM will do the trick. Just feel nauseaous now but munching my way through the ginger biscuits!

I have the pleasure of those self injections to do later to boost the white cells.......joy....

Anyway, 2 sessions done 😀 4 to go....😀

jo

[Jude1962]

Hi Georgie

Good luck with the picc line!

Sorry to hear that you don’t feel you are getting the suitable response from your oncologist - all we want is some empathy & understanding.

I feel that I’ve been lucky as I have had the suitable responses & support from the beginning

Good luck for your chemo on Thursday

Jude x