Starting chemo May 2014

[barbersdrove]

I've been doing SW too and have lost 3st 9lb since Nov 2012. Have qseemed to plateau now though and despite not eating hardly anything sinful since last we'd have put on 2kg! How does that happen? I have lost the fb group name can someone remind me please.

[ladycroft]

Afternoon girls,

Well a pretty uneventful couple of days healthwise. I suppose I'm now in the low immune system part of the cycle so am keeping away from busy places. I wonder if the same things will happen for every cycle or if the effects ease off or get worse. Would be nice to know. 

If laughter is the best medicine then I've overdosed this weekend ! Gogglebox and Eurovision ! Me and my virtual friends were having a ball on FB and Twitter! 

Facebook is a lifeline for me ,I have friends who make me laugh and support me from all over the world,some of whom I've never even met !  I can also keep in touch with my mum who is in a home following a major stroke 3 years ago easier as she has an ipad and I post photos and funny stuff on her page.

A lot  come about through shared appreciation of music, and I was fortunate to meet many of them last year at a 're-union' in Barcelona, so as long as you are careful with what you show in the public part  Gill, you'll be ok. You don't even need to use your real name or a photo. 

I like the idea of the FB page as we can show photos and it's easier to relate things, it's nice to put a face to you  too.. I'll still post on here too though.

No difference to my hair yet ,I did use the cold cap. I think it's around day 15-18 that I'll notice if it hasn't worked from what they said.

I just wish I could lose weight ,I seem to have ballooned in the last months. So annoying as I was doing Slimming World until Feb and had lost nearly 3st !

Jan x

[gmc]

Morning all,

I noticed this morning when I ran my hands through my hair that quite a few strands came out. I did try it again in case it was a coincidence but the same thing happened again! My scalp has been itchy and now a bit painful for the last few days but I wasn't expecting things to start to happen so soon as only on Day 11. I know for me total hair loss is probably inevitable as I chose not to do the cold cap but nonetheless I promptly burst into tears at the prospect!!!

On a positive note most of my other probs have been resolved thankfully so hoping for a good few days before the next session on the 21st. Hope you are all enjoying a lovely weekend. I've has such a good laugh at some of your posts and am thinking of going down the Burkha route too!

My daughters have set me up on facebook but at the moment I haven't worked out quite what to do with it! Can't ask husband for help as he's dead against it - paranoid over security !! Also I have a slight concern - I have found looking at this site so informative and useful that I'd be sorry if others going through all this crap aren't able to see our journey and tips and queries - I've turned into a stalker of the previous month ladies just to see what's ahead ! What do you think - am I worrying unnecessarily ?

Gill X

[climbingrose]

Morning all

Sorry you couldn't sleep Barbersdrove - agree use painkillers if you need them, although Codeine never worked for me as it was too strong and made me feel faint in hospital. Last night was my first night without painkillers (on day 12 of FEC) and I feel like I slept ok. I also find eating a bit, such as a few crackers before bed helps have better sleep. Hair cut and wig fitting tomorrow and I'll post some pictures on our group facebook page. There are a few of us in the facebook group now and it would be great if all of us were on there. 

By the way, just had a thought - is everyone aware that you can apply for free prescriptions for 5 years via a form from your GP? 

Have a good day, Lorraine x

[barbersdrove]

Doh! Awake most of the night feeling like there is an army of micro men battling each other with tiny knives all over and in pain then.......realised I could take painkillers! I forgot they said I could take codeine based ones though not paracetamol. So have now had 3 hrs sleep thank goodness. Hope everyone else is doing ok. I've decided to do a log and note the day of everything ready for the next session so hoping a pattern will emerge and I can do some planning for how I will be when throughout. So it starts, Day 3 eve, Star Wars starts. USE PAINKILLERS!

[scattyfox]

Liking the sound of a burka Jan.covers all eventualities and.stops the sunburn lol. Slightly better today but wish food tasted right and still on antisickness meds, have an.alternative to try so will see how i get on with thay tomorrow. My stomach wont stop rumbling but only thing that tasted ok today was a fish.finger sandwich made by Oli my tiddler. My dad and my step family all ran Race for cure today in america on my behalf, every penny raised helps someone somewhere so im very proud of their support. Hope your all ok Lucia x

[wax2014]

Hi ladies, I do like your posts Jan, I sit here laughing whilst OH wonders what the heck I'm
up to !! Must say ''shes back..come on!!!" Feeling normal ..well if this is now normal..I'm certainly not the zombie I have been and my taste is slowly returning or at least the tuna sarnie at lunch time didn't taste of cardboard !!
Not all perfect yet but the cream is working on the itchy bits down below so to speak..head still feels weird ..itchy and i can feel my hair sitting on my head if that makes sense???
Have also had more tears ..missing dad , god bless him..deep breath..onwards and upwardsxxx

[fowey]

Hi Everyone,

Well, 5 days on from upset tum and diahorrhea and I still cant eat anything without running for the toilet .My tummy is gurgling away, I think I must have some really over active bacteria in there that have a party when some food arrives ! I have rung my chemo nureses but they said as long as I am keeping hydrated, just to ride the storm.Period has finally stopped after 12 days....I think? 🙂

Ladycroft, although I am using cold cap, I already made up my mind not to have a wig if I do lose my hair.I figured with it being summer during the bulk of my treatment and I have a hot head, I would just buy myself an array of pretty scarves and bandanas....lol at the burkha part to cover mouth and nose as well...not a bad idea.

On the positive side I am losing weight which I can afford to do !! A hell of a way to diet though ! xx Ruth xx

[ladycroft]

Evening girls,
well the aches and pains were apparent yesterday, bad back and a fuzzy head all day. Also the most painful indigestion for about 4 hrs in the evening.Today I was fine. Had my wig appointment at the Limb fitting clinic this morning and have picked 3 styles to try. Bit disappointed with colour choice as I fancied a wacky one . Not too bothered about them really as I think I'll stick to the scarves.
I was thinking of buying an emergency burkha , it 'll cover the head and with the veil keep any bugs at bay .Plus the way my weight is going It'll fit like a glove ! Fit right in in my part of the country too so no one would bat an eyelid !
and on that note goodnight x Jan

[scattyfox]

Sicky.still but not as bad today so managed to graze a bit, not a lot of energy so stayed in.bed watching tv and.napping. Struggling to drink though today, feeling a bit down as reality of whats going on is hitting me, think a grizzle may help to relieve the tension. Worried about whats to come if im crumbly at.the first hurdle x

[barbersdrove]

Thanks fir your caring comments all. I have to say today has been just the opposite. Good nights sleep, managed to work (we have holiday lets and had 2 changeovers today) then off to hospital for wig fitting. Hubby came and I must say I thought I looked good and so did he, 🙂 no hair kiss yet but was referred before starting as onc said it will go quickly. Managed to cook and eat eve meal too no nausea so all in all a positive day. I hope others who are feeling rough soon have days like this too.

[gmc]

Hi Linda - I have had an itchy scalp for a couple of days so when I had my line check I asked the nurse if that was a signal of impending hair loss. She said she wasn't aware of the itching but that other ladies had reported having a painful scalp. I've got some meds for thrush but hasn't worked yet! Hope this doesn't happen each session.Otherwise feeling quite good all in all. One of my daughters has a cold so is avoiding me which seems quite sad - I looked on Macmillan site and says vulnerable  from day 7 to day 14.

 Well done for survivng work.

Have a good weekend, Gill X

[wax2014]

Barberdrove, so sorry to hear of your experience, hope you're feeling as ok as you can at the moment..

New one ladies anyone's head itching??? Heard this happens when its about to start coming out, surely it's too soon for that yet? Also got thrush both ends now.. what joy ! 

I too will use the excuse of low immunity to get OH to do the shopping this weekend, so we do have some highs!!? Must say feel a bit more normal today, only slight fuzzy head and have managed to stay at work.. going home in a minute. Have a good weekend xx Linda xxx

[scattyfox]

Barberdrove what a nightmare for you hut good to hear the staff are on the ball and.reacted quickly to the situation but must have been scary for you xx
tiredness has kicked in today and woke up starving n.feeling sick with a lovely.furry tongue. Keep brushing teeth and.tongue with herbal toothpaste from lidl which helps for a while. Hope you are all ok x

[gmc]

Wow Barbersdrove - that must have come as a huge shock - also to anyone who may have accompanied you! Glad it was tackled so efficiently and precautions taken to prevent it happening again.

I'm on day 10 now and apart from mouth probs and thrush feeling so much better (hope I'm not speaking too soon ). Getting out the anti bac as I believe this may be when the immune system is at its lowest.Could be such a good excuse to send OH out food shopping so as to "avoid crowded places" ! !

Hope all of you are getting on as well as poss,

Best Wishes, Gill x

[Sodastream]

Just read your post Barbersdrove. I bet you're feeling fed up as it must feel like you have enough to deal with at the moment without added complications. However I'm glad you've turned it into a positive and managed to sleep, how are you this morning?

[barbersdrove]

Well, lets just say it's been an interesting day! Immediate allergic reaction that would have been a full blown anaphylactic shock if not for the quickness of the staff! Less than 2 mins infusion too. Everything stopped and anti hystermine and poriton infused. Dr cam, called consultant who came but poriton had sent me to sleep so I wasn't woken ( thank goodness as I needed my sleep, after not sleeping at all last night). They carried on with the drug infusion and all went ok but now have to have both preventatives before each treatment and will probably sleep. I took my frozen lollies too so didn't get to have them! All ok now, feeling not too bad but so many tablets at different times, days, dosages plus injections. I've done spreadsheet and taped it tothe desk and will cross off when taken. Have to have one at midnight so have set my phone alarm to wake me, if I do get to sleep. On the plus side I got my lovely new booby today that comes in and is stored in a big box, to keep it's shape. One more step along the road. Oh, and I did ask about the 2 pm thing for taking the steroids but apparently I am on double the norm dose so it cant be done. Oh, and found out also today that having clear sentinel nodes doesn't mean squit if you are triple negative as they don't have the biological test for that variant yet so it can't do the job. Happy days

[scattyfox]

Lol you did.make me.smile ladies Jan.and Linda. Got to have my mirena.coil out on 20th week before my.fec2 so not looking forward to that. Heat headache is a good explanation sounds like what ive got, all my head feels hoy n.my ears and.this pressure inside, not like my.normal headaches. Have managed to eat small mouthfuls today of different fruits, pineapple tastes weird today but strawberries ok. Im always.akward lol. Got heartburn but found diabetic sugar free mint humbugs are great. District nurse pleased with my wound moved me to three day dressing changes which is good. sickness calmed which is good too. Im worried about the.fec's to come.as im.struggling with this one but hey ho we dont have any option do we. Good record choices ladies Lucia xx

[fowey]

Hi Wax2014,

I am on day 10 after 1st FEC and also been on a really bad period for that entire time.Also suffering with diahorrea/sore bottom and sore mouth. So because of period and number twos, I am not eating much and therefore feel wiped out. I am worrying that I will now get these symptoms after each FEC,the next one being due May 20th.

Up until day 7 I was doing ok !

Hope everyone elses ailments settle down soon, I think as Ladycroft says, our tune should be we are all in this together !! xx Ruth xx

[wax2014]

Sorry even forgot my own name xx Linda xx

[wax2014]

Hi ladies, just catching up with threads and got to smile..i did wonder what orthotics was all about ..my appointment is on monday got to be worth a giggle..must say feeling rubbish today stayed at home cos i had dizzy spells at work yesterday and all i want to do is sleep.Please tell me i'll have some energy soon....having period from hell and headaches and the pain in my arm/veins is really bad .I've just been told that i need to do 20 mins hot pad followed by 20 mins cold..starting to think if i've got to do this 5 more times i'll be a reck ! Sorry feeling sorry for myself today .....wax

[ladycroft]

Hi Lucia ,

sorry to hear  it's been so bad for you. It has affected us all differently. I was ok just tired and ate ok ,sleeping though is hard . I wake every couple of hours to pee or with a  heat headache . I heard pineapple is good to eat ( apparently  there is a an enzyme in thats good for inflammation of the joints and mouth Bromelain is also being tested in cancer trials in the USA so it can't hurt !)

I think most people feel better soon as the poison get out of your system so the anti emetics help. Eat what you fancy ,I had ginger marmalade on toast or cinnamon bagels when I got up,if you look back through the early pages of this thread ,you'll find our experiences ,if it helps.

In the immortal words of the Wildcats song from 'HIgh School Musical'(surprisingly apt lyrics mostly -don't know why it popped into my head!) -'We're ALL in this Together....''  cheesy but I love cheese.

Take care xx Jan

[climbingrose]

Hi all,

Lucia - things will get better for you - I am on day 7 of my FEC and actually feel ok and have for the past couple of days. Even able to cook tea, and take girls to various activities, although I did forget Annabel's golf was not on and she phoned and asked where I was. Luckily school not far and she can walk home -age 10. I do find I need to eat every 2 hours to avoid the sick feeling. I'll have to get bigger clothes soon. I had some fresh pineapple yesterday and it tasted great and have ginger nuts just in case. 

Barbersdrove - I was told take steroids at 8am and no later than 2pm - when I took them at 4pm I couldn't sleep. Do you have to take more than two doses a day? 

Sheryl - it's great to hear you're out of hospital - hope you get the treatment started soon.

Ladycroft - had to laugh when I read your post about the limb! 

Best wishes to all, just off to eat something. Lorraine x

[scattyfox]

Fec 1 wasnt too bad had iv through candula but having pic put in.next time. Felt rough when.home.really sick but managed sandwich on.board and toast n marmalade when home but pineapple and carrots for rest of the evening. Only managing water but did nearly 3l so.red flushed through. Had to ring hospital and they advised taking domperizone anti sick which gave me few hts sleep, got burps, coughing and mucus but think its my sinus's draining down when im.sleeping. Tried to cook kids dinner last night but couldnt.stomach.the.smell.of cooking meat. Taken my anti sick aprepitant and ate one slice of granary toast and just taken 4 steriods but feel jittery and heartburn. Woke up in.the night.soaked. Asked mum.to get me.ginger biscuits and.bovril which mentally i fancy, taste may be something.different. Is this going to get worse this week or will i feel better in.a.few days? Lucia x

[gmc]

Ginger & lemon tea added to shopping list, thanks Jo. Have a restful day.
Gill X

[barbersdrove]

Well, no sleep following taking the steroids at 9am and 9pm as advised. I've noticed that people say take the last one at 2pm but that would mean taking then at 2am as well, with food.

[Gadgetgirl]

I'm also TAC, the steroids are anti sickness and to prevent allergy to TAX. I had my first TAC yesterday, very tired today, finding ginger and lemon herbal tea good, might be worth a try Gill. Appetite completely torpedoed too. However work sent me a fruit bouquet yesterday (lovely people) and guess what, everyone else is right and fresh pineapple is fab - tastes as it should and really hits the spot! New pineapple bought by OH waiting to be breakfast :-). Jo x

[barbersdrove]

Yes, 8 days s long enough for anyone to be in the hospital so pleased you have escaped. Re the steroids question. I'm not having FEC, I'm a TAC bod. I think it might be anti sickness.

[fowey]

GMC,

I have been drinking loads of water and also those dioralyte sachets, I will be glad when my number twos settle down ! It will be good to have a good nights sleep tonight without running for the toilet !! xxRuth xx

[fowey]

Sodastream, So pleased to hear you are out and back at home xx Ruth xx

[gmc]

I love that vision Ladycroft - you have a wicked sense of humour - just what we need!

Been to have my "line care" today and came home with a multitude of goodies for sore mouth . Have also had a visit from the Thrush Fairy - both ends, so a double whammy. Nothing seems to faze them at the chemo unit though and they quickly got a Dr to make me out a prescription. Guess there's nothing they haven't heard before and nothing seems too much trouble for them!

Cheers to you Sheryl - will toast you with my strawberry ribena laced with Movicol.

Hi Ruth - you must be having to drink loads to combat dehydration.Hope you are finding something  tasty to get down. I'm struggling with fizzy drinks - too gassy at the moment. May you have a really good sleep tonight - you must be needing it.

Good  luck tomorrow Barbersdrove and hope to heara how you got on soon.

Best wishes all, Gill

[Sodastream]

Jan I had to giggle at your post, I think I can safely speak for everyone to say you cheer us up.

[ladycroft]

Glad to hear that Sheryl. I got a letter this week to confirm my visit to the limb fitting clinic on Friday and I have to take my old orthotic (whatever that is) device with me ! Always said another pair of hands wouldn't go amiss!

I have a vision of some poor soul waiting for a prosthetic  leg  sitting patiently in his wheelchair whilst being made to try on various drag queen like wigs . Wonder if they got the letters mixed up . 

There told ya I was weird. 

Onwards and upwards , x

[scattyfox]

Great news definatly time.to celebrate xx

[Sodastream]

Hi everyone. Good news I've finally escaped after 8 nights in hospital. They came to the conclusion that although some of the redness on my breast was infection what is left is the cancer. My white blood cell count was high because I have no spleen due to a blood condition I have.
So today I met with the oncologist and signed all the consent forms and will start chemo soon. Great news was my bone scan was clear, my CT showed a couple of slightly enlarged lymph nodes but nothing else and my HER2+ came back negative. I think there is reason to celebrate in our house tonight although I haven't had a drop of alcohol for over a month now so had better be a little bit sensible.
Barberscroft I can answer your question re the steroids as they told me today (impressed myself that I'd paid attention), if you're on FEC chemo then one of the drugs can cause an allergic reaction so they give you the steroids to avoid this.
Just. made appointment to go wig shopping on Monday so I'll post some pictures on Facebook soon.
Sheryl x

[fowey]

Hi TiggerGlee,

I wonder why you still have your portacath in....I want mine out as soon as I get told its safe to do so, as I am aware of it all the time and it sits just at the point where my bra strap rests. xxRuth xx

[fowey]

Ladycroft,

You always make me smile 🙂 I have had the most awful night struggling with diahorrea...the opposite of you it seems . It has settled down a bit now finally,I think it was because I had attempted to start eating ordinary food that we usually have, where as last week I erre don the cautious side and ate blandly period still ongoing on day 10 now, what we women put up with at times ! xx Ruth xx

[TiggerGlee]

I have been done with chemo for years but still have my port-a cath.  It only needs to be flushed once every 4-6 (dependant on doctor/hospital) weeks when not used

[barbersdrove]

I start my steroids tomorrow. 4 at 9am and again at 9pm then again on thurs morning before I have my first chemo. Thing is I can't remember why they give you these and if it's just for a couple of days or longer.
Soda stream, I hope you have managed to get home.

[ladycroft]

Sorry Ruth, it's a picc line not a portacath, it has to be done once a week. I ate half a pack of Haribo about an hour ago and have just 'been' for first time in days. Well that's a load off my mind lol !

goodnight sleep tight xx

[fowey]

Hi Ladycroft,

I have just seen your remark about the nurse flushing out your portacath, is this supposed to be done then? I had mine flushed last Tuesday at the end of chemo session, but I haven't been told to get it flushed at all before next chemo due May 20th? xx Ruth xx

[fowey]

Hi Wax2014 and Ladycroft,

My period is still horrendous,worst one I have ever had. Its weird as I get a gush like a tap being turned on then nothing for hours then it happens again, checked with chemo nurses at hospital over the phone today, as I don't want to develop anaemia and find I can't have my 2nd FEC on May 20th. They said as long as flow is not continuous don't worry, but I am more worried about my FEC getting delayed and clashing with my holiday to cornwall on July 5th !!!!

I also have a very sore mouth, no ulcers or furryness , just generally sore, I am using Cordysol mouthwash and bonjela.

Otherwise just feeling wiped out a bit still due to period more than chemo I think xx Ruth xx

[wax2014]

Jan..glad you had a better day, I think you're a day ahead of me? I went to work managed till 3pm normally finish at 4 came home crashed and woke about 5.30. Have had really bad pain from my veins in my arm today, will ask about that at oncologist meeting next week.
I spoke too soon about my period! Here and making itself known !! Along with a sore ,furry horrid mouth..really hate that bit xxLinda xxxx

[ladycroft]

Better day today, took it easy . Nurse came and changed mydressing and flushed the portacath. Still constipated and a horrid taste. Weirdly I keep 'smelling' heat like an old dust filled fan heater has been turned on . So mints by the bed and lavender near the pillow , Sleeping pattern is up the spout too. 

But first week is done and dusted .

[gmc]

Hi Ladies

Seems like we are all having similar side effects. I've slept loads today having felt exhausted  but have also had horrid stomach pains and a furry mouth - despite sucking ice pops during 1st chemo! Movicol has been brilliant for constipation - has to be mixed with orange juice or ribena I find to make it palatable.Really hoping to find some energy tomorrow.

Ruth, I count myself lucky not to have period probs to add to everything so hope you and other ladies who are suffering get some relief soon.

Lucia- good luck for Wed - in my experience it was all very calm and pain free.

Jo - your lemon and rosemary chicken sounds delicious - and I have no appetite at the mo!

Linda - I can cry so easily now it's ridiculous. Luckily it uses blows over as quickly as it comes.Good luck with work tomorrow.I'm still signed off so hoping to stay under the duvet until these tummy pains go.

Jan, if you like cinnamon have you tried chai tea ? Can't cope with my usual strong coffee yet.

Sheryl - hope you had a bit of enjoyment at home today.

Night night girls, Gill X  

[fowey]

Hi Gadget girl,

Thanks for explaining the time frame re the menopause, I have read a couple of books, but everyone seems to be different 🙂

Scatty Fox,

I had my first chemo last Tuesday and it was all very calm and the nurses were lovely, so try not to worry to much. I am having 4 x FEC, then 12 x Taxol, followed by radiotherapy and 5 years of Tamoxifen. I had a WLE and SNB, 11 nodes were removed, 10 of which were affected, hence the chemo, I used the cold cap, and it is bearable after the first 10 minutes as your head just feels numb. I am resigned to losing some if not all my hair if the cold cap doesn't work and already bought an array of bandanas and scarves.

Good Luck with chemo pre assessment xx Ruth xx

[scattyfox]

Hi everyone, Im lucia, 48 and single mum of a 13 yr old lad called Ollie.  I go for my pre-chemo assessment tomorrow and should be starting on weds. 

Have had a WLE and total clearance 1 16mm grade 3 IDC with high grade DCIS and 18mm IDC grade 2, LVI neg (not sure what this meant) am ER8 PR8 and Her2neg.  Have had lots of problems with my wound healing and had nurse in everyday packing it and just moved to every other day but its almost healed over at last.Have got loads of fluid or inflammation around the armpit and down the arm and my shoulder blade, they said its a seroma but told haemotoma previously, whatever it is its gettign on my nerves.  Have got numbness down back of arm and cording under arm and down arm but keep massaging it.  Getting pain in the breast but again just keep rubbing it, good job im not in public :). Is anyone gettign really bad memory problems, seems since my surgery although i was dx as being menopausal in January so not sure if it is that.  Ive still got a mirena coil which they havent removed but will mention it tomorrow to them.

I was dready starting chemo but am in a much better place mentally now the wound is starting to heal at last and after ready soem of these posts. I feel so much better in myself and have just been through the recipes and made the immune boosting soup.  Am goign to be having 6 xFEC/T followed by radiotherapy and hormone therapy.  Not sure about the cold capIm as ready as i can be now and just want to get on. 

Im so sorry to hear about those of you who have been having problems in your personal lives as well as ahving to deal with this.  im trying to remember all your names but as soon as i look at them and then get back to hre ive forgotten them again, my apologies.  Have many of you joined the fb page?  Will be back tomorrow to let you know how i get on

Lucia

[Gadgetgirl]

Hi Ruth, if you're over 40 then you are said to have completed the menopause when you've had a full calendar year without a period. Some women get absolutely no symptoms so that may not be relevant. Family history can give a vague idea when it might happen, but it doesn't necessarily follow.
Chemo will mess things up big style so we won't really know when we have our menopauses probably, especially those of us taking tamoxifen afterwards. Most women have finished their periods by the age of 55. So basically you haven't had your menopause as you haven't had a year without a period, and that clock starts again on the first day of this current period.
I know this because I work in women's health.
Also, I read on the top tips thread that sucking ice lollies during treatment can help prevent mouth ulcers - same principle as cold cap for hair. Might be worth a try next time?
Hope you feel better soon, Jo xx