August 2018 Chemo starters

[Kathleen77]

Hi I completed chemo therapy in April 2018 during the initial treatments I was quite unwell family feared I wouldn't continue with the treatment .Days seemed endless and I thought April 2018 would never come I persevered I got through it with the help of family and Rachel Bland and her friends they were an inspiration to me and probably thousands of others.I just wanted to say stick with it you will get back to experiencing fun days and feeling normal.If anyone out there hasn't listened to You me and the big C give it a go its a friend through those dark lonely hours when everyone else is asleep.

[Jude1962]

Hi Jo

I know exactly what you mean with regard to Rachael Bland - I’ve been listening to the You, Me & the big C podcast for the last few months & have laughed & cried with them. It’s very very sad & I was quite upset on her death but have took on board their mantra they whilst it’s ok to have a bad day, always remember that life is for living!
My 3rd chemo is also Monday - the sooner it comes the sooner it’s over with!

Good luck next week

Take care

Jude x

[Sunflower18]

Hi all,

Just thought I’d check in to see how everyone is doing. 

I am pleased to say that I have actually had a good week physically although a little emotional yesterday when everywhere I turned where pictures and stories about the Radio 5 presenter Rachel Bland. I know everyone’s cancer is different and our treatment is tailored to us as individuals but hearing about it really hit me hard yesterday, especially at 2am when I couldn’t sleep!

sometimes the emotional side of things is so much harder than the physical journey.

i saw my oncologist yesterday and bloods are all ok, so round 3 of FEC on Monday. Strange, I really don’t want to go through it again but in someways pleased that all is ok to go again! Does that make sense?

I think mentallly it is because I will be half way through the chemo treatment which is massive milestone. I cannot believe I am half way through but in other ways mid Nov when I am due to finish seems a long, long way away.

Hope you are all doing ok

Best wishes 

jo x

[LALALAND]

Hi Georgie Gee i had my PICC line in on Monday  and the anethestist doc cut that plastic piece off because of that reason.

Sorry that you are having problem's, i have a lot of bruising  but it does'nt sound as bad as your's i think because of the inflamation you should get in touch with the hospital sooner rather than later good luck let me know how youget on.. love and hugs xx

Spoiler

[Georgie Gee]

Just wondering whether anyone else has noticed any bruise - type pain in the PICC line arm?

I have one of the small plastic parts attached to the line which is digging into the inside of my elbow.  It is getting red and inflamed.  Then further down towards my wrist, following a defined area of bruised sensation.  No redness around this part, just the pain.

I may call the hospital tomorrow.   Oh dear.  Never wanted this picc in the first place 😩.

[Jude1962]

Hi Georgie

We can tread the different path together!

Will be interested to hear what your oncologist says if you discuss

Not looking forward to next week...

Take care

Jude x

[Jude1962]

Hi Lala

Brave move shaving your head but all the itchiness will go & you will feel better than it all falling out constantly! Insomnia is tricky, don’t think I’ll ever sleep properly again!

Hope other ses are minimal

Jude x

[LALALAND]

Good morning ladies as you can see not a lot of sleep, went to bed did try but gave up after an hour or so. Got up cleaned hob hubby tries his best just having a cuppa and catching up on holby. xx

[LALALAND]

Good evening ladies, had my 2nd cycle this afternoon, not feeling too bad although wide awake. I braved the shave when i got back a bit of an emotional rollercoaster but i am glad now that it is gone, i knew it was going and to be honest my head was so uncomfortable i just knew the time was right. Inner strength there when we need it we just have to use it. Eh enough of this serious stuff, let's all go to bed with a smile.

nite nite love and hugs

[Georgie Gee]

Hi Judy, 

I have my last FEC on 13th September and 1st T on 4th October.  So about 3 days between us... 

Georgie

[Jude1962]

Hi Georgie

I’ve got my 3rd EC next Monday & then 3 cycles of T & herceptin starting on Oct 1st

What’s your timescale?

Jude x

[Georgie Gee]

Thanks Judy. 

When do you start this? 

[Jude1962]

Hi Georgie

I’m starting herceptin with T as well
My oncologist gave me a macmillan fact sheet on herceptin which you can read online
There are quite a lot of general side effects but I believe that the main concern is that it can effect your heart but could be worth discussing with your oncologist

Judy x

[ValGJ]

Hi, it’s really interesting what you say about probiotics as I’ve been taking mine as I normally do, I never thought to ask if they were ok. They have stopped me getting constipated so I was hoping it was a good thing!
I take back all I said about having energy and few SE’s on cycle 1, this round has been much harder, I’m not normally a cryer but everything sets me off at the moment. Particularly the hair falling out in handfuls. Still coming into week 2 now so hoping for some better days.
It’s great to know we aren’t alone, thank you everyone for telling it how it is xx

[Georgie Gee]

Hi Everyone,

I have a question which I think only people with herceptin to come might be able to answer..... 

I'm currently on FEC. 

I've been told that the herceptin will start with 1st T cycle. 

Ive been looking at herceptin closely (on good sites not Hello magazine articles..... 😬)

There seems to be a theme that from oncologists point of view, nobody gets side effects from Herceptin.

But from patients, there are plenty of side effects, and their oncologist says 'it is from the chemotherapy you're getting S E's'.  Or that it's the tamoxifen, etc.  But I'm not going to be having any hormone therapy. 

I want to ask my oncologist whether I can start my herceptin with the 2nd T cycle rather than the first one (have to have a whole year of herceptin 😩). 

On this and other monthly threads, the T part of FEC T can be full of side effects which may be different to FEC, and I want to be able to know what is causing anything that happens.  I also don't want T and Herceptin side effects at the same time, both being the first doses..... does that make sense? 

Thanks for any thoughts or knowledge of this.  

Georgie x

[PrettiestEyes]

Thanks for the welcome everyone...and I'm definitely making the most of having no side effects so far (insomnia at times now seems to be a side effect - hence sitting at the computer at 4.28am - but that's not a big worry in the grand scheme of things) x

[ktk]

Hi Jacqui. Ring the hospital helpline and tell them about it. Don’t wait for it to get worse!! Kx

[Jacqs]

Hello Ladies,

Can I ask if any one of you has a central line fitted & if so what their experiences of this are.

I had mine fitted 2 weeks ago and am already having couple issues with it.  

It’s feeling very achy tonight & I have an ache in my shoulder above where the end comes out.  It has bled ever so slightly.  I’ve checked my temp & it’s ok.  Just wondering if this is normal.

thanks in advance for any advise. Jacqui x

[SB1610]

Hello

Lalaland - Unfortunately your hair hurting is a likely sign it will start to fall out - this seems to be common indicator. I've lost quite a lot mine now but it has stopped hurting - still can't face the shave but I've been told it's not detrimental to regrowth so I'm leaving it for now.

I take lansoprazole for the acid reflux - I've been on this for a number of years - but my symptoms really ramped up in the few days after my first chemo. I had my dose increased from 15mg to 30mg and this sorted the problem. For my 2nd chemo I took 30mg on the day of treatment and for a few days after and then switched back to 15mg and gonna drop this to every 2 or 3 days until my next chemo. This has been working for me so far and I'm keen to take as few drugs as possible. Def ask your med team about getting something to help - don't suffer with it.

Cat - my se on round two were actually a little less severe than on round 1 so fingers crossed you follow the same pattern

Enjoy the sunshine everyone

Sue xx

[Cat67]

Hi Lovely Ladies,

Sue – thank you for your best wishes for my second chemo session (yesterday). Already feeling nauseas despite change to anti sickness regime, last time the nausea started to kick in in a big way on Sunday (tomorrow) so hoping that doesn’t happen again, time will tell…whatever happens I know it’s only temporary!

PrettiestEyes – welcome to the gang! And no cock ups :-). We are all so different when it comes to SEs so make the most of feeling well! I am certainly appreciating the good days more! Agree with your comment about looking at the world through a different lense and appreciating the little things.

Multitasker – I was also advised to avoid probiotics. Aveeno sounds great, I’m also using bio-oil on my scars.

LalLaLand - I was prescribed Omeprazol for indigestion related SEs. The first sign of hair loss for me was a tingling sensation, next day head started to feel sore and strands of hair falling out every time I put my fingers through my hair (I had shoulder length hair) so took decision at that point to shave it of and that take away the soreness for me, so now I have a No.2 with a few bald patches  - my other half has a No.1 cut too so I joke that I never thought I would see the day that he had more hair than me!!:-).  Got lots of scarves but also getting on well with my wig when I go out.

For everyone feeling below par (physically and/or emotionally), which is probably all of us to some degree (!) stay strong, we can do this! Sending you all virtual hugs.

Look after yourselves…

Cat x

[LALALAND]

Due to have my 2nd chemo on tuesday. my hair hurt's does this make sense any tip's welcolm. also acid reflux at night sounding like a right whinger. Have a good weekend ladies enjoy the nice weather. love and hugs xx

[Multitasker]

Thanks for the heads up about pro-biotics, Lalaland. I will stop the kefir and ask my doctor when I see him in a couple of weeks. Definitely dont want to do the wrong thing. Some of the SEs have been so horrible I grasp any little twig I think might make me feel better and I should remember I do have not medical background.

Hi there Prettiesteyes. Some people dont get many SEs, my brother and SIL were fine through chemo, only getting tired towards the very end. It seems random how it affects different people. They were polar opposites in terms of fitness, health, diet etc. Another one of lifes mysteries! Fingers crossed your hair holds on fo the wedding

Wishing you all a great weekend. 

[Jude1962]

Hi Prettiesteyes

Well done on the no ses & I hope that continues for you
I’m very impressed that you have manage to continue to work most days - I’ve struggled this second cycle to even do odd bits from home

Hope it all continues well for you & hope the hair loss isn’t too traumatic

Jude x

[Jude1962]

Hi Cat

Hope today went ok & the ses are manageable - good luck

Jude x

[SallyG63]

Hi Prettiest eyes.

I'm from the June thread. I'd say it's not normal to have no side effects bug it happens. I've had nothing and I've done number 9 today. Like you I've worked everyday except Fridays which are chemo days. Make the most of it!

Sally.

[PrettiestEyes]

Hello all, I'm new to this forum (and in fact haven't used a forum in years so I'll probably cock things up - sorry),

I was diagnosed with invasive ductal cancer in June, had a lumpectomy just over six weeks ago (two small grade 2, stage 2), plus removal of lymph nodes (cancer in three out of 15) and I had the first of 6 chemo sessions ten days ago.

I'm sorry to read that so many are suffering side effects and my question is, is it normal not to have any negative side effects after the first chemo? I was fully expecting to feel sick, tired and a whole load of other things but I haven't (and of course I feel so grateful to have got one under my belt and to feel so well. I know things will get worse). I know my hair will go (currently I'm hoping it might last one more week, as I have a wedding to go to, and then I plan to chop it off and I have lots of hats and scarves at the ready).

I was able to go out for my first post-op run on Wednesday and I've been working as normal (I have a sedentary job) . If anything, I am feeling a bit hyper happy - looking around the world with fresh eyes and thinking how beautiful the sunshine is, how lucky I am to have such supportive friends and family etc. Again, is this normal???

Looking forward to getting to know some of you along the journey.

xxx

[LALALAND]

Hi just reading about kefir my oncologist told me to stop taking pro biotics as  chemo kill's off good bacteria and taking pro bioctics make's the chemo work twice as hard. don't know if this is so just do as i am told. 2nd chemo next tuesday only 4 left. Anyway have a good weekend ladies love and hugs xx

[Multitasker]

Morning ladies

One week on from 2nd EC. I think I feel better and more positive than same time last round. Like Sunflower really looking forward to a more normal week ahead and maybe knowing this is on the horizon helps keep me more positive.

I also find Aveeno really good for dry skin. I also use Palmer cocoa body oil a couple of times a week. It smells a bit  of chocolate, so cant face using it the days immediatley after chemo but love it other weeks. Its oil, obviously, so takes a while to sink in but as it has Vitamin E in it, I like to think it helps my boob scars too. 

My tummy has been very unpredictable. Crampy sometimes, tho could be period pain, loose sometimes, constipated others. I’ve started drinking Kefir whichseems to help me. There was a telly program a few weeks back talking about gut health. It seemed to make sense to me. I think the chemo kills alot of the healthy gut bacteria and I like to think this helps restore some balance ‘down there’. I was surprised how much I liked the taste and the feeling of it in my stomach. 

Lots of hugs to everyone and wishing all a positive day

[SB1610]

Good luck Cat

I actually found the se a little easier the 2nd round so don't give up hope 😁

Sue x

[Cat67]

Hi Lovely Ladies,

Thanks for the top tips for dry skin……….and welcome to LaLa and Val!

I’m having my 2nd of 3 cycles of FEC today so if last time is anything to go by I will brace myself for a crappy week……but safe in the knowledge that it is only temporary and I have better days to look forward to!

Look after yourselves…

Cat x

[ktk]

At LGFB they recommended Aveeno too. I have been using E45 shower emulsion as well as E45 lotion. Kx

[SB1610]

Let me know it helps Sunflower

[Sunflower18]

Thanks Sue.

[SB1610]

Hi Sunflower

I was recommended E45 lotion for the dry skin. I started slapping it on a few weeks before I started chemo and every day since and so far skin had stayed nice and soft and not dry. Again on recommendation I've also been using a different shower gel - Sanex 0% kids - this has no soap, colourants or parabens (whatever they are) so this may also be helping.

Worth a try maybe

Sue x

[Sunflower18]

Hi all,

just thought i would check in to in to see how everyone is doing.

Im now on day 10, round 2 of FEC (3 x FEC and 3x T).  I have to say that whilst the sickness was way better this time around I am afraid i suffered from mega bouts of diarrhoea followed by the last two days of constipation! What is going on with my stomach, I sometimes dread to think what these chemo drugs are actually doing to my body. 

Hair on head is almost non existent and skin is getting very dry, apart from that plodding on with it all. Some days better than others.

Looking forward to a week and a bit of feeling reasonable before going through it all again.

I can’t believe though that at my next session I will be half way through....Yeah!

Well half way through chemo - still have radiotherapy, hormone therapy and bone strengthening injections to get through!

Best wishes to you all xx

. 

[Jude1962]

Hi Sue

I agree the more fluid we can take in the better!

With regard to the steroids I don’t seem to get the high or mega energy that other ladies get but I definitely get a reaction when I stop taking them. I might ask if I can almost wean myself off them rather than just stop to see if that helps next time

Hi Val & Lala - welcome to the club that no-one wants to be in! It’s good to hear from you but sorry to hear of your se’s & infection - hope you start to feel better soon
It’s actually quite interesting to realise that whilst we may have similar treatment - I’m having 3 x EC & 3 x T + starting herceptin with the T, due to hormone related other diagnosis & age related, additional treatments can be different.

Sleep well all

Jude x

[ktk]

Hi LaLa. Welcome to the club!! Bear with it. You did the right thing contacting the hospital. Let the experts look after you. Decide what you want to do with your hair. You might find it more comfortable to bite the bullet and get it shaved and then you can move onto your wig or scarves or whatever you choose. You should start to feel better now so enjoy the next week until cycle two. Hopefully it won’t be as bad!! Lots of love Kxx

[LALALAND]

Hi there, i started chemo 2 week's ago, i did not realise that you could go through so many emotion's in such a short space of time. The chemo it self was not as bad as i thought it woul be. Day 2 well i am sure that you have all seen the advert you know the ooop's moment well mine was more like the niagara fall's moment' i just lost control of my bladder' up all night going to the loo. No other sign's of anything but i phoned the unit anyway, blood's ect was given intravenous a/b and a course to bring home with me turn's out it was a water infection. Day 5 thrush. Mood swing's up's down's i just don't know tear's for no reason this is not like me at all hence the user name LALALAND because that's where i think i am. Now day15 my hair has started to fall out ah well i'm sorry to sound such a grump but just felt like a moan.  ONWARD'S AND UPWARD'S LOVE AND HUG'S TO ALL

[ValGJ]

Hi all,
I’m a new poster, just had my second out of three EC to be followed by three of docetexal. I had to laugh when I saw talk of fasting, I’m so hungry I fancy Curry, Chinese, chocolates anything all the time! I’m going to be the only chemo patient to put on weight. I do feel eating keeps the nausea down in my case. Like others I’m a bit groggy the first couple of days and then I’m buzzing from the steroids and waiting to do the hoovering at 7am so I don’t wake the family. Very tearful too which is not like me. I had a very bad reaction to the injections on day 6, so painful in pelvis and lower back, it felt like birth contractions, luckily was eased by painkillers. Not looking forward to next lot though.
I too am having problems about being allowed to go to work, I work p/t for a charity and there is low risk work I could do but as I’m signed off they won’t let me in. I’m going to ask my GP if she can write a sick not that says I can work if I feel up to it.
It’s been great hearing from you all, I think it really helps to know others are coping in their own way with this nasty disease. Best of luck to you all.

[SB1610]

Hello Cat and Jude

I think I'm the same as you in that I don't know if the fluid intake is the thing thats helping or not but I'm not to keen on experimenting to find out so I'm gonna keep on mainlining the water just in case.

Jude - they don't have me taking steroids (other than the ones on chemo day) so sorry but I can't comment on the SE you are having coming off them. I can however really sympathise with the feeling sorry for myself comment - I've had a few low moments myself over the last few days -and I think this is just part of this **bleep** awful rollercoaster we're on. I've decided not to feel bad or guilty about those moments but I'm just going with it at the moment knowing that in a day or 2 I will have hopefully have turned a corner and I'll have some good times before the ding ding ding of round 3. Well that's the plan anyhow........

Nite nite all - hope you all get a good sleep

Sue xx

[Jude1962]

Hi Sue

For my second cycle of chemo I did really up my fluid intake particularly once the sickness & nausea had abated. Not sure whether it has helped or not?

My biggest issue this cycle was once I stopped taking the steroids I had around 4 days where I felt terribly shaky & almost out of it. Today (day 9) is the first day that I have felt relatively normal

Have to admit to feeling a bit sorry for myself a couple of time as well 🙁

Hope everyone is coping ok

Jude x

[Cat67]

Hi Lovely Ladies,

Thanks Sue and Ktk. I'm not sure I could fast but I am trying my best to eat relatively healthily and drink lots of fluids....whilst having some treats of course! When I was suffering with nausea during week 1 everyone was encouraging me to increase my fluid intake even further......it didn't seem to help at the time but may be it would've been worse if I didn't drink so much! 

Thanks Rosie14 for your words of inspiration; lovely that you are all still in touch 4 years later and a great reminder to us all that the light is shining bright at the end of the tunnel

Wishing everyone a great next few days...

Cat x

[SB1610]

Hello all

Not sure how helpful this will be re the decision to fast or not to fast but here goes.....

I'd read about this too on various blogs but nothing that had medical or scientific backing (but I'm not saying that there is nothing out there). I asked my onc about it pre my 1st chemo and there were a couple of docs in the room at the time and they were all quite dismissive of it and one even ventured the opinion it could do harm rather than good. As such I didn't try it.

What I have been doing however is trying to stay really well hydrated. I've been drinking plenty of water - usually I manage somewhere in the region of 4 - 6 pints of water per days plus other drinks - milk / juice / squash and hot drinks - however main intake is definitely water. I'm just on day 6 of round two and from reading comments from others on here I seem to have got away quite lightly so far with the SE. I've typically had a bit of nausea on day 1 (on both occasions an early night sorted it) and then a bit of fatigue on the next few subsequent days but this has just consisted of a bit of an afternoon nap but no more than an hour. It probably helps that I'm not working and that there is only myself and oh in the house but I do wonder if my water intake is helping to keep the SE at bay and to what extent. I must admit now the weather has turned cooler it's not as easy to drink so much water but Im going to try and keep it up just incase it is the thing that's helping.

I'd be interested in what others think - I'm consistently told that all regimes have slightly different se and different people react differently
on the same regime and that my own experience on round 1 won't necessarily repeat on subsequent rounds.

Good luck all

Sue xx

[ktk]

Hi Cat. There is a good thread on fasting with all the info you need. However, only do it if you feel you can as this is hard enough anyway without suffering unduly! I was able to reduce intake for the first couple of cycles but found I couldn’t keep it up. Re the Picc covers, they do come in different sizes, and they stretch! Just run a line of stitching down the side. Should be fine! Kx

[Cat67]

Hi Lovely Ladies,

I hope you all maaged to enjoy the Bank Holiday weekend!

I was lucky as feeling good a couple of weeks after my first chemo (FEC). I  had a meal out with family on Saturday and even had a couple of G&Ts!! And I had a lovely day out yesterday walking in the countryside and a pub lunch. All of this with my new wig on; it gave me a bit of a headache but maybe I just need to get used to it?

I was interested in the comments about reducing calories/fasting day before chemo - can anyone tell me more about that?

Thanks foe the PICC line cover advice - great ideas. I ordered a PICC line cover but have found that it slips down my arm. 

I will be having my secod chemo (FEC) on Friday so for those of you who have had second session already it's helpful to read how you are all getting on; in the meantime I will make the most of feeling close to normal for a few more days!

For everyone having chemo this week, good luck! And for everyone else good luck with the SEs!

Stay strong...

Cat x

[Multitasker]

Hi Millsy

I think its very common to feel emotionally low around halfway through chemo cycle. You’ve just managed to battle through the physical effects and then when you get your breath back your mind goes into overdrive. Be gentle with yourself. You have had soooo much to process mentally and to go through physically.

I hope you can work something out with work, be tenatious. You have started treatment now so you can explain how it effects you and what you can do. They probably want to err on the side of caution.

If you feel you are up to the festival go for it. Its good to enjoy normal things. My hubby lives in Zurich and my oncologist gave his ok to visit him, days 16&17. I was worried and he emphasised taking temps, emergency antibiotics and get to a hospital etc. Probably worried too much, but that is natural. It was fine and it was lovely to do and most importantly took my mind off the Big C.

[Millsy]

Morning ladies I’m on day 10 of first chemo and dare I say have returned to feeling somewhat normal physically sadly not mentally have had a couple of really low days but I know that’s to be expected.  I had cold cap and hair still intact currently, skin on my fingers started to peel yesterday so creaming a lot more.  My work have said no to working from home sadly and I need to see occupational health, I feel they would just prefer me to go off sick, I have spoken to an advice lime and they were helpful and sent me a good letter template to request reasonable changes to my work, I do a clinical job working with under 5’s which is is not good because of my immunity so will request working in the office doing some admin, going by the first chemo I feel I definitely wouldn’t be able to work first week but Weeks 2&3 feel like I could do some work maybe on reduced hours to try and get some normality in my life, I feel I will go stir crazy being at home🤪 I am hoping to go to a festival next weekend if I feel ok still? Bit anxious but feel it would cheer me up and in England so can easily get to hospital if needed, I have put PICC line off as they wanted to put in ready for 2nd chemo, I know it’s a gamble and really hope my veins hold out but just not ready to have something in my arm restricting me for baths etc. I will probably have it in ready for round 3 of 8.  I don’t write on here that often but regularly read the threads and find them so comforting, wishing you all a good bank holiday weekend and hope the side effects are kind to you 🙏🏻

[rosie14]

Good morning ladies!

i have just dropped in from the April 14 thread! I have come to offer you the assurance that this treatment will come to an end and although it takes several months for hair to grow back and to begin sleeping for longer it will happen!

I used to get up anytime between 2.30am and 4 am ! One morning at 5 am I was cooking meat and another I was washing the patio down at 6.00am! 🙀It’s the steroids that make you wakeful!

The treatment is harsh but there are thousands of us still alive because we went through it. Continue to support each other each step of the way and together you will make the journey! 

5 of our ladies still post regularly and we have just had our 4th annual meet up!😃

Stay strong ladies for those that love you! 🌸

[Jude1962]

Hi Georgie

2nd lot of chemo is gruelling isn’t it, it certainly doesn’t get any easier
I don’t have a picc line but it sounds like you are very enterprising regarding a cover!
My oncologist has been brilliant so feel for you regarding yours, it’s not that you’d wish this on anyone but a bit of empathy doesn’t go amiss

Take care

Jude x

[Multitasker]

Hi Georgie

I’ve also resorted to DIY. I made some tentative attempts at something to cover and protect my portacath. Because 

A) It sticks out a lot from my chest and hurts if knocked 

B) people grimmace and comment when they see it, which is understandable but sometimes makes me a bit fed up - 

Will have a better go when I’m feeling a bit brighter. The skull doesnt look half scary enough! They are padded and I stick them on with boob tape 😀

Good luck with changing oncologist, you just want to feel people are on your side. Mine wasnt at all helpful when I explained how ill I felt, thankfully I saw the oncology nurse when getting my bloods tested and immediately she was suggesting chaning the meds. Even walked down to see the pharmasist to see what would be better to swop. I was happy to try ANYTHING