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Starting chemo in August 2012

Luvvie66
Member

Re: Starting chemo in August 2012

Hi Ladies

Sika, sending hugs ....... Hope you are home soon, it must be horrid for you at the moment.
June, glad your neutrophils are behaving now.

MandyJ, hope your cold passes and you are able to get back on with chemo.... None of us like it, but all we really want is to get on with it and get it over with!

Good luck to all of you having treatment today, especially those starting TAX. It's not awful for everyone, I can vouch for that.

I was taken off FEC after my first dose as I reacted so badly to it. I was then told I'd need 5 TC (Taxotere and cyclophoshomide) to complete my course. Given what I'd read about TAX I was petrified.

The BEST news is that I hardly experience any nausea at all. I am on Emend still (plus 3 other anti emetics) but I haven't felt lightheaded or dizzy or sick at all.

I have a Neulasta injection which I self administer the day following chemo, I had this when I was on FEC too. It seems to do the job in boosting neutrophils but it does make you ache like mad.

The side effects from TAX dont seem to kick in until day 3 for me (Apart form the wooly mouth and loss of taste buds which is almost instant)

It starts with aching. It's a dull bone ache, bit like bad flu. Of course it's probably compounded for me because I have the Neulasta. It's not nice, but I manage it with codeine and paracetomol.

It makes you tired, as all the regimes seem to.

I was told i might get ridges on my nails, or they might lift and fall off!!! The tips of my fingers are very sore and dry. It feels as if I have been mixing concrete with them.... Not that I ever have, it just feels like I imagined it would. I use extra strong hand cream and its manageable. I do look odd when I'm struggling to get credit cards out of my purse, just can't seem to grip them!

I bought some really expensive (£26 incl p&p) nail soluitiom from Belgium. It is recommended to people in France (it's made in France) for chemo patients undergoing TAX. It's called Evonail and its a clear solution you paint on your nails every morning. I mentioned it my onc, who raised his eyebrows....... But he didn't poo poo it and wrote the name down on his pad and asked me to let him know if I thought it worked at the end of my treatment. Have to say my nails have never looked as healthy as they do right now!!

Due to the cocktail of anti sickness meds I get terrible constipation, for which Movicol is a must. BUT then days 6&7 I suffer from the "TAX trots" not nice, but its almost a relief after being constipated for a week!!!
So there are side effects for me, they aren't pleasant, but they are manageable.
My second TAX was much easier than my first. I'm having my third on Weds.

I know we are all different (Sika's experience very differentbto mine) but try not to get anxious about it.... It probably won't be as bad for you as you fear.

Let us all know how you get on xxxxxx
Sika
Member

Re: Starting chemo in August 2012

jume great news about the wbc! hope fec3 goes okay for you.

swoot fingers crossed your treatment goes ahead

mandy sorry about delay but sounds for the best. at lrast i will be done by christmas' is a thought that keeps me going too.

i was also scared of tax. though my nurse had told me that it is often easier for those who struggled with fec. not true for me, but maybe that thought will comfort some.

i am still in hospital and now neutropenic - even though i am on the i.jections! dropped from 5 to 0.2 just like that! pain is better but still has me in tears. one good thing is that in my agony and frustration i told my nurse about how my onc makes me feel awful and is dismissive of my pain. she said i shouldnt have to feel like that and has arranged for me to see a macmillan nurse. i might change onc too, if i can. can i say that i hate him?

anyway now just waiting for wbc to rise. and for pain and fever to go.

sorry my messages are brief and not very engaged. i struggle to write on my phone and when feeling so rubbish.
June22
Member

Re: Starting chemo in August 2012

Mandy - hope your cold gets better soon, and that the dentist visit goes well. Not great to be having dental work whilst undergoing chemo, so make sure they know you might have tender gums etc. My boob excision area and Lymph scar flares up every chemo session, but I am told that is normal! I still have some hard scar tissue on my breast scar, but they said it is still early days in the healing... I had my Lumpectomy op in mid-July!
Swoot - good luck with the decision about your infection/chemo. At least they are thinking what is best for you.
I got called into Oncology for another blood test today, to decide if my FEC #3 could go ahead tomorrow as my neutrophil level was lower than 1. The re-test showed I had raised it to 1.57 since tuesdays test, so all is well, and I can still have the next session as planned.
The nurses were lovely, and did a little cheer as the good reading came out of the test machine. They are all willing us patients forward through chemo, I am sure. And they gave me a different kind of dressing over my PICC to ease the irritation I got from the clear plastic ones, so I might get some relief there too.
Bring on FEC #3... I am ready for you... though I might need a lie down afterwards for a few hours!

In case I don't surface for a while... have good weekends everyone. Hope the sun shines for you all.
June22
Swoot
Member

Re: Starting chemo in August 2012

Oh Mandy, sorry to hear that 😞 Hope you're feeling better soon and at least you're only delayed a few days. I had 2 oncologists debating whether I could have my dose tomorrow for about 10 mins today! Final decision to be taken tomorrow, but at the moment I'm stil booked. They are slightly concerned about my infection, but as long as it doesn't look worse tomorrow, should be ok. They've extended by antibiotics and given me 2 more days of granocyte, so 7 days in total - thank goodness I can now inject myself!
Can't offer any experience for your soreness as I haven't had my surgery yet, hope the the scan goes well.
Finally, hope the visit to the dentist goes well - at least it's a change of clinical scene (if you see what I mean!).
Xx
mandyj
Member

Re: Starting chemo in August 2012

Hi all
Not having the Tax tomorrow. The nurses took one look at me when i went up today and said no! I obviously ooze cold symptoms. My nose is still a little too snotty for their liking so I am booked for next Wed instead. Only a few days delay. Will still be done before christmas (apart form the radiotherapy). I popped up to see my BCN as I have a sore bit under the area where my nodes were removed, below the scar line. There is a tiny hard bit that moves around. It may have always been there and I have not noticed before. She is not concerned about it but they are going to scan it on Monday to see what it is. She thinks it may just be scar tissue or a stitch! I suppose I have been feeling low with my cold and it all feels a bit sore. It does feel like the soreness you get with the nerve endings returning to normal. I mentioned before that I get sore/numb around my scar lines during my periods. I should have started another about now but there are no signs this time. Maybe my poor boob and armpit are a bit confused.
Its a good job I am not going tomorrow as this afternoon a piece of tooth chipped off - ouch!!! Going to see dentist tomorrow instead. I think I spend more time in clinical settings now than I did when I worked as a nurse!!
Swoot- good luck for tomorrow. Let me know how you get on.
take care everyone
mandyj xxx
June22
Member

Re: Starting chemo in August 2012

Thinking of you ladies starting your Tax and sending you good vibes. Hang in there... and do let us know how you get along.

I'm not looking forward to the Tax and Carboplatin part of my treatment either... and I need to get through the FEC before I can really worry about the TC! Hopefully by then I will be saying - bring it on, let's get it over with 🙂
(Well, I can dream can't I?)

Good luck 'T' ladies, wishing you few SEs
June22
Swoot
Member

Re: Starting chemo in August 2012

Hi Mandyj, just wanted to say that I know how you feel about the Tax, I'm due my first one on Friday too, so I'll be thinking of you if you feel you can go ahead with it. I have a skin infection (ingrown hair, don't ask, it's not pretty) and am taking antibiotics at the moment, not sure how/if that will effect Friday, but seeing my onc tomorrow - sure she'll tell me. I really don't want to delay, because I just want to get it over and done with. Have to start taking my Dex pills tomorrow too, and have just read the accompanying leaflet full of side effects and warnings... Eek.
Sorry to hear your friend's mum passed away.
Hope you're feeling better soon x
mandyj
Member

Re: Starting chemo in August 2012

Hi all
Had internet issues at home so not been here for a while. I am due my first Tax on Friday but I have a cold, which I caught from my little boy! My bloods are fine and I did not have a temperature so they are happy to go ahead but its up to me I think, I am to ring them in the morning to see how I feel. I am scared of having the Tax, which is mad,because I should have been more scared when I had the first FEC, suppose I was just naive back then to it all. My veins are still sore and very dark too. Very sore if you knock your arm and hurts as you straighten it. My friends mom had lots of chemo over the years before she finally passed away and she said her moms veins recovered well and she never had any problem having her blood taken, so hope all our veins recover too. I have to admit that I forgot to ask about the palpitations so will mention it when I speak to the nurses.
Hope you all feel well soon if you currently feel rough. Getting excited as christmas stuff appearing in shops which means the end is nigh!!
mandyj.xxxx
June22
Member

Re: Starting chemo in August 2012

Sika - I am sure everyone on this list joins me in sending you healing vibes, and we hope the pain eases and you are allowed home again soon.
I am not looking forward to having Tax at all - but the oncology nurse told me not to anticipate getting horrid symptoms, as I might not get them! I did wonder if she was being serious, or trying to jolly me along.

June22
June22
Member

Re: Starting chemo in August 2012

sukiem wrote:
I had a PICC line fitted a week ago and have pain/sensitivity over my chest and collar bone. Its more a sensitivity/ache than pain. I'm on FEC too and on the Sept chemo thread. Could you let me know what your onc said about it today? Thanks


My consultant was a little concerned that I was getting discomfort from the PICC line along its length, but said it wasn't unheard of, and I was just unfortunate. He asked if I would prefer to have it removed, or continue and see if it calms down. I said the alternative of a cannula and lots of vein hunts for bloods wasn't viable, so I am sticking with the PICC.
He said I should take some Ibuprofen or Paracetamol, and apply a heat pad to the area to ease the ache. If it gets worse or unbearable, I am to contact oncology in case it is an infection.
It isn't bad today - like a dull ache just to let me know it is there. After my last FEC it became more painful and the discomfort woke me at night, so I would get up and take some paracetamol and put a heat sac on it, and then get back to sleep. It remained irritated for several days - especially if I bent over to pic something up from the floor, but slowly eased into a tolerable dull ache that doesn't get worse due to activity. I simply know it is there now rather than be totally unaware of where it runs.
I have allergies anyway (many cosmetics are not usable by me), and I have a rash from the clear PICC dressings and a red line where the blue PICC tube bit that is outside the body rests against my arm skin... it seems I might be reacting to the actual tube material too!
So I gues the answer is, make sure it isn't an infection where the PICC incision is, and take medication and use heat to ease the pain. Or, you could go back to having cannulas if that is better for you. But it isn't unheard of that people can feel the inserted tube, though most don't.
Hope this helps reassure you - but do mention it to your own consultant when you next go for a check, as they can make sure there isn't an infection and advise you according to your own health needs.
June22


June22
Member

Re: Starting chemo in August 2012

Mandy wrote:
My arm is also very sore from the epirubicin, and the back of my hand. I assume over time this just goes does it?
Does anyone know about vegetable hair dyes?
Does anyone know if you can have a spray tan on chemo?
People keep saying how well I look, I keep thinking you dont see me in the mornings and I used to sometimes do the school run with no make up at all, now Id scare the poor kids! Come Feb I may be using garden tools to trowel it on!

Mandy, good to know I am not alone in finding my veins very painful - though sorry you are suffering too. Even if I brush my arm where the cannula for first FEC went or along the length of the vein, I jump from the pain, and it is worse after subsequent treatments for about ten days.
Oncologist said this was sadly a side effect, and suggested ibuprofen/paracetamol to help cope with it. I too assume it will heal eventually - sure hope so as it is debilitating at times, though I think it does damage the vein in some way long term. Hopefully we aren't getting the nasty chemo long enough to damage the vein beyond recovery!

As for hair dyes... My NHS wig came from a wig company working with the NHS, and in the box was a card from Guy Fawkes hairdressers who have specialist professionals who will style it for free for chemo patients. (I am in Bristol) They also say on their card that they can advise patients on hair care, specialist gentle hair colourings etc. and offer advice on treatments as the hair begins to regrow. So... maybe if you asked the wig people, or the oncology service, there are hairdressers who could advise you on hair colourants you may use. I believe in one hair care booklet I received from our cancer centre, they did say vegetable dyes - such as henna - could be used. But, I would check, as the skin is delicate during chemo, and reactions might happen to anything used.

It is a joke at home that my OH came home with a halloween costume to wear for trick or treat visitors, and I said I wouldn't need a costume this year... I have red eyes due to conjunctivitis, a fed face flare up every time I have steroids - including a very red nose, and a bald head. It isn't a good look! 🙂 Enough to scare any kiddies...
Swoot
Member

Re: Starting chemo in August 2012

Loving the bandage instructions, even though I don't have a PICC - thinking it may help my poor veins, which just seem to hurt the whole time at the moment. I don't mind the cannula, but now the nagging ache doesn't go away between sessions and I can't straighten my arm any longer. I am off to the hospital to get my bloods done tomorrow, before my onc appt on thurs and first tax on fri. Last time they put the needle in and no blood came out... I'm not looking forward to it.

Hope people feel better soon, or at least feel as normal as we can between treatments 🙂
Sika
Member

Re: Starting chemo in August 2012

hurting owww, tax is horribly painful, everywhere. currently in hospital, again, with temp. and pain.
sukiem
Member

Re: Starting chemo in August 2012

Hi June
I had a PICC line fitted a week ago and have pain/sensitivity over my chest and collar bone. Its more a sensitivity/ache than pain. I'm on FEC too and on the Sept chemo thread. Could you let me know what your onc said about it today? Thanks
mandymid
Member

Re: Starting chemo in August 2012

Hi June
I'll be at it til early Feb too ;-(
I am having 4 lots of epirubicin (3 wkly intervals = 12 weeks) 4th one on Monday
Then Im having 4 lots of CMF Day1, then day 8 then 3 weeks off so 16 weeks so if nothing untoward happens I will be done by early Feb. Ladies tend to say that your hair grows back on CMF so am hoping that thats begins to happen.
My arm is also very sore from the epirubicin, and the back of my hand. I assume over time this just goes does it?
Does anyone know about vegetable hair dyes?
Does anyone know if you can have a spray tan on chemo?
People keep saying how well I look, I keep thinking you dont see me in the mornings and I used to sometimes do the school run with no make up at all, now Id scare the poor kids! Come Feb I may be using garden tools to trowel it on!
Mandy
TigersGirlie
Member

Re: Starting chemo in August 2012

Also my Hickman line for a bit irritated with the fec x
TigersGirlie
Member

Re: Starting chemo in August 2012

Secret stock you have just made my day, I love your home made bandage, am sorry you put have been delayed,

June sorry to hear your going longer but coming from someone on the most strong and intesive fec(aparently I could cope with it as young) you will wanr it spaced out as it is as it is s ##t. So I know it will take longer but will be easier, I have started to get to the point I now don't really feel (better is this the word) between treatments.

Xxxxx
June22
Member

Re: Starting chemo in August 2012

Secretsock - thanks for the PICC dressing recipe 🙂
I might end up needing it!
I have developed a rash beneath my clear dressings, and even where the blue inserted tube rests against my skin there is a red mark. I think I might be allergic to whatever the tube they inserted is.... They put some kind of barrier solution over my skin last time they changed my dressing, to stop the adhesive coming in contact with the rash area... but the rash is still visible.
My PICC has caused me pain along the length of the line in my chest. Unusual to be able to feel it apparently, but not unheard of. They asked if I wanted it removed, but that would mean going back to a cannula, and my vein from the cannula they gave my first FEC through is still so very painful all along my arm... I couldn't face that being used again. So chest ache is preferable. And a heat pad helps ease it.
Trust me to have irritable veins!

The not-so-happy news is they confirmed I AM getting 4 FEC and 3 TC (not 2 TC as I was originally told). You don't normally have an odd number of chemo sessions, but my Oncologist apparently gives FEC at a lower dose, but over more sessions to reduce the impact of side effects, so instead of a 3 : 3 treatment, I get a 4 : 3.
And I AM getting radiotherapy after - despite what the Breast Clinic specialist decided at the breast care centre!
So, I won't be through with my chemo by Christmas after all, and it will be longer until I see the light at the end of the tunnel, but it will be all worth it by spring.
secretsock
Member

Re: Starting chemo in August 2012

mandyj.... your t-shirt slogan "I feel a lot better than I probably look" really made me laugh! I want that t-shirt!

Feeling cross and hard-done-by today. Was due 3rd session but hospital rang me yesterday to say that neutrophils levels are too low so has to be delayed by a week. Grrrrrrr. And after my 2nd session I'd been feeling so much better than after my 1st. I really wasn't expecting them to say the neuts were low.

After the 1st session I felt weird and spacey but still soldiered on... it was only after about 5 days, when I started to feel better that I realised how cr*p I'd actually been feeling! I told the oncologist this before the 2nd session and she changed the anti-sickness meds from steroids to Emend and wowee... fantastic. Hardly any side-effects with the 2nd lot.... felt well, was working... hell, I even went to zumba the day after! But I guess it catches up with you one way or another... hence the crappy neuts.

Other than that.... I still have most of my hair. It had been really long, so the day of my 1st chemo I got it all cut off and donated it to a wig charity. I figured it was better to give it away than lose it! Anyway, I have no bald patches yet but it's definitely thin in a few places... and omg really grey! A friend who wanted to see under the headscarf was really taken aback when she saw it... not by the bald, but by the grey! Talk about adding insult to injury...

Got a bit of a "woolly" mouth but nothing horrendous. What's been worst of all has been my PICC line. The canula thing was really horrible, my veins must be rubbish and even now, nearly a month and a half after my first chemo, my hand still hurts where the canula was. So they fitted a PICC line which worked fine for chemo no 2 but - out of nowhere - I developed an allergy to the adhesive on the plaster they used to cover the insertion site. Literally a half-hour after they'd put the plaster on, my arm felt like it was covered in battery acid! Deeply unpleasant. Since then they've tried about five different makes of sticky dressing and all of them make me itch and cause blisters, although none of them as bad as the first one (Tegaderm). I wouldn't mind but it looks so innocent! Just like clingfilm.... you wouldn't think there could be anything in it that would cause a reaction. It's taken me nearly a month to get the skin to stop itching.

Anyway, because I'm not able to tolerate anything sticky without my skin ending up looking like a badly burnt pizza, I've ended up constructing all kinds of elaborate ways of tying the dressing to my arm. The best one is:

a) small gauze pad over the insertion site;

b) lay the hard plastic bit they plug the IV into over the gauze pad;

c) cover the hard plastic bit with a small sanitary towel;

d) cut a really long bit of tubi-grip (at this point you need a second pair of hands, or a helper!) and, clutching the sanitary towel to your arm, pull the tubi-grip up while carefully removing your hand from the dressing;

e) double the tubi-grip over at top and bottom so that you end up with a double layer;

f) secure the tubi-grip with a long strip of micropore or sellotape pressed quite tightly around (but not too tightly that your arm goes blue). If you have the sticky stuff stuck over a double layer of tubi-grip the glue won't go through to your skin. The bands of micropore or sellotape should be at the top and bottom of the sanitary towel so that it's sandwiched and - hopefully - won't budge.

The above non-sticky allergy-free PICC line dressing recipe has been brought to you today courtesy of the letters U, P, Y, O, U, R, S, C, A, N, C, E and R

Good luck, ladies. xx
June22
Member

Re: Starting chemo in August 2012

Sika... was that a hurting ooowwwwww, or an injection oowwwwwww? 🙂
Hope you are okay, and able to ease your aches soon.

I have my next appointment at the Oncology Centre tomorrow and have to tell them I can feel the PICC line aching across my chest. I hope they don't decide to remove it! The ache kept me awake most of last night, so I have to get it sorted.
Anyone else had problems with the PICC whilst having FEC? They think it is the E in FEC that has irritated the vein.
June22
Sika
Member

Re: Starting chemo in August 2012

owwwwwwww
Sika
Member

Re: Starting chemo in August 2012

sorry I haven't been posting much. just a quick note for now at 4.45am. about to enter day 4 post tax#1. i was in and out of hodpital last fec, but never neutraphilic. injections work! but, yes, Victoria, they really hurt! not the injection itself ( so long as you let them get to room temp), but about 12 hours later. told onc it hurt he said "yes, like the flu", goodness no, much worse, battered and trampled everywhere.

anyway, had a reaction to tax - crushing chest pain and burning hot, face went bright red. terrifying. but nurses were very quick to save me! big dose of antihistamines that nearly put me to sleep. dose was slowed and all was fine.

feel okay so far. some appetite, some sense of taste. nausea )big prob for me on fec) almost non-existent. tired, weak, but less breathless than i was on fec. i.jections start today. lets see how that goes. oh, and funny cramps, lower abdomen bothering me.

more soon, hope people are doing as best as they can be!
TigersGirlie
Member

Re: Starting chemo in August 2012

Hi all,

Welcome soot and elbaboo, we look after each other here through the hard times, am so pleased you can work still, I'm on a very aggressive fec dose so am lucky to get out of the house for a nice walk ATM.

Mandy did you ask onc about heart palp?
So have just finished number 3, WOW it was not good this time, not sure if its the clots or the cummalative effects, am now only just feeling doable after 10 days! !!!!
ALSO if I HAVE ANYONE ELSE TO TELL ME IM HALF WAY THERE I MIGHT SCREAM! !!who s the they forget is that means I've still got 3 months 3 more cycles of crap to go!! ! Sorry to rant lol.

Anyway I have a week of the lenograstatim post chemo, does anyone else find it hurts? I'm also on daily blood thinning injections, and will prob be on blood thinners for next 5+ years until I finish the anti hormone drugs.

My mum just got back from a week in Spain, its amazing how much I missed her and how much I rely on her,

Anyway love and hugs to all

Victoria
Swoot
Member

Re: Starting chemo in August 2012

Hi Luvvie, thank you. I'm pleased to hear that you didn't feel so sick on Tax as that's been a problem for me on FEC. How many do you still have to go? I had just got to grips with how I would feel after my last few chemo sessions, so now feel a bit 'up in the air' about what's going to happen to me after the next ones. I'm still working, though only 3 days a week, and have managed to get on with my SEs so far, so I hope I can continue to. Though I'm not sure how much more teary I can get - I've just bitten the bullet and told most of my friends what's going on and they are all being so brilliant about it that it makes me a bit upset (if that makes sense!). Just call me crazy x
June22
Member

Re: Starting chemo in August 2012

Good afternoon August ladies, I'm feeling a bit brighter today - day 11 after Fec 2 - so thought I would just drop into the forum and wish you all a cheery hello!
I hope you are all doing well.

June22
Luvvie66
Member

Re: Starting chemo in August 2012

Hi Swoot, welcome aboard:-)
i was due to have 6x FEC, but reacted badly to the first one and got changed to another cocktail, containing Taxotere.
The side effects for TAX are quite different from FEC for me. Most importantly I don't feel too nauseous.
The worst side effects dont kick in immediately either. I'm ok ish for a couple of days. I had my dose Weds and even managed to go out for a meal Friday evening.... Even though I did need a lie down to prepare in the afternoon and I couldn't actually taste any of the food because my tongue was furred up!
I've suffered most on days 4 and 5 when my bones have ached terribly and I've been very teary. I've just been taking co-codomol which possibly takes the edge off the aches.

This second dose has been slightly better than my fist dose though even though I am definitely more tired.

Don't be put off at the thought of Tax, for me it's much easier to control the side effects than it was with FEC. It's still not pleasant, but might not be as bad as you fear.
Let us know how you get on


Xxx
Swoot
Member

Re: Starting chemo in August 2012

Hi ladies, sorry to butt in to this thread so late, but I've only just come across this website. Wow, I'm glad I have because it seems to be full of lovely people and great advice! I was diagnosed in July and started chemo in August. I'm on FEC-T: had my 3rd FEC two weeks ago, and I'm due my first T next week. Given some of the comments I've seen on here, I'm not feeling too sure about it! Once I've finished the chemo, I'm having surgery and radiotherapy, plus hormone therapy, so I'm in for the long haul, but feeling quite positive about it at the moment.

Anyway, just thought I'd say hi, and hope to keep up with you all from now on 🙂
mandymid
Member

Re: Starting chemo in August 2012

Hi ladies
Hope youre all doing ok. (No head on its side at that point Ellaboo!
I too have a head exactly like velcro, I always wear a little cotton beany at night and the one night I had to take it off I was like "Why cant I turn over properly in bed?" Oh yeah Im atatched to my pillow! Maybe it helps to keep the wig on a bit as i have never yet worried about it falling off even when my 6 yr old grabs it (Normally when I am tying his laces!) but I did almost hoover it up with my new hoover this morning which is super powerful as they are for a few weeks!!
I am now 4 days post chemo and this is the best I have felt. Ventured out today for the first time. I have been very nauseaus again, despite getting emend which didnt make any difference whatsoever! Butwhat has been different to the first 2 is that I have been absolutely shattered! Falling asleep like 3 times a day!
June I have the exact same food cravings, remind me very much of early pregnancy. I'll even see a picture of food or something on tv and really fancy it. Tomatoes have been one, actually mainly savoury stuff but on the reverse I have had many foods I deffo dont fancy one bit. The smell of everything makes me want to be sick too, even normally nice smells. My 13 yr old daughter likes body spray! A lot!!! She gets ready for school then sprays it, I assume all over her!?! It pongs! My mouth often feels coated too like a bit furry inside. As if its dirty!
I only get a dose of steroids IV with the chemo and I dont have anymore and dont suffer with not sleeping...quite the opposite in fact! I have now been upped to 5 lenograstim injections after my admission with neutropenia sepsis but prior to chemo my bloods were much better so pleased about that. I cant say they have made me ache that much though.
I have noticed a definite different reaction to the head scarf vs the wig. The wig a lot of the time people dont seem to twig and some have even asked am I getting ready for my hair to fall out! Assuming I have cut my own hair shorter! I think it looks blatantly obvious and Id know a million miles away! The scarf deffo gets the sympathy vote though. I just want to look as normal as possible so I dont embarrass my children (even more than I normally do!)
Hope everyone has a nice weekend
Mandy xxx
June22
Member

Re: Starting chemo in August 2012

Luvvie66 and mandyj - the fuzzy felt head comment made me laugh. That is exactly it - but it keeps my hats from slipping off! A bit like velcro I suppose 🙂 We could start a trend with fuzzy felt heads that you can stick felt shapes on!

Mandyj - do speak to the oncology nurses about your heart palpitations - it could be important to mention such a thing. Maybe the steroids are too high for you? They have halved my steroids as they were making me feel bad, and I have managed this second dose of chemo much better with reduced steroids. They were keeping me awake, making my mind ramble like crazy and causing me skin problems! Do let us know how you get on.
My mouth feels horrible and coated - though not sore. I use the mouthwash (diluted with water) every night and it seems to do the job.
BUT - is anyone else getting food cravings?
I had an urge for pickled beetroots, tomatoes, salty drinks - such as an oxo in boiled water - and for sucking boiled sweets! Not all together of course... All quite odd. maybe my body needs something in these foods!
And there is no way I could be pregnant so it can't be that kind of craving LOL.
mandyj
Member

Re: Starting chemo in August 2012

Hi ladies
Not been on for a while as have been rough for a few days. 3rd FEC last Thurs and all was well but by day 3 I had the nausea from hell. The worst so far. Could not move for the last 4 days without feeling sick and as though my stomach was on a spin cycle! I also wondered if any of you have strange palpitation type feelings when you are awake with steroid induced insomnia? I feel like my heart is going to stop and I am sure my pulse gets weaker. It makes me panic. Once I am off the steroids I do not seem to have it. Am rather scared of taking the higher dose ready for the Tax in case my heart does stop!!! paranoid or what? Maybe just a bit mad. I was watching some a+e type program the other night and some woman has chest pain and it turned out to be a spasm in her oesophagus, do you think it could be that? I must ask the chemo nurses. I am driving them mad at the moment, what with needing Emend for the next dose and mouth gel for the soreness. I don't want them thinking I am a hyperchondriac!! Nurses do make the worst patients - ha ha.
Luvvie66 - I too am a piece of fuzzy felt!
Ellaboo - I am getting those how ARE you questions. The headscarf is a winner for sympathy. The lad serving me in the co-op today was really worried that I wouldn't manage with my one carrier bag! It only had a pizza and some garlic bread in it! I might get a T shirt printed that says 'I feel better than I probably look'.
Take care all
luv mandyj.xxx
Ellaboo
Member

Re: Starting chemo in August 2012

Hi everyone. Have been given some chemo tips today which I thought I would pass on in case they were of any help! Firstly, a ginger beer called Feverfew (?) from Waitrose which is apparently a winner with nausea. Secondly, beetroot juice has been recommended to push up the WBC count. And my hairdresser (obviously not a regular appointment at present, haha!) has told me that massaging your scalp every day with oil is absolutely essential for encouraging regrowth once all is over. Have been using Bio Oil which is currently on offer in Lloyds Pharmacy at half price 🙂 June, I was also only give the half steroid dose yesterday at my second chemo as the first time I had an allergic reaction and ended up in A&E with a bright red face and a temperature... It definitely is better today but have felt much more nauseous than I did before. Luvvie, am also have that injection this evening which should give my bone marrow a super boost and have been told to await the aching bones. Am hoping will only last a few days though! My constant thoughts now are two down, four to go! By Xmas it will all be finished 🙂 xxx PS Just to vent a few of my current chemo pet hates, symptoms aside... 1. People who barely know me who come up and stroke my arm and look at me with their heads to the side saying, how ARE you? 2. People who send me cards that look like sympathy cards as though am on my last legs (rather than phoning me/talking to me) 3. People who cry at me, generally, when they see me in a headscarf. Am sure they all mean well but unfortunately was enveloped by a woman in the playground this morning who I had never met before who engulfed me in fag smoke and made me feel even more nauseus, so am on a roll today!!!
Luvvie66
Member

Re: Starting chemo in August 2012

Sorry for my typos, blame chemo fog and an iPhone.
Luvvie66
Member

Re: Starting chemo in August 2012

Hi ladies
Welcome abroad Ellabalo.

I had my 3rd chemo,today, my second TC. I'm suffering from steroid sleeplessness, hence early morning post!
Mandy's tips for boosting red blood count appear to have worked. My count, whilst still slightly below 'normal' was loads higher and isn't causing any concern any longer. Thanks Mandy!

I have the Neulasta (spelling?) injection 24 hours after chemo to boost neutrophils. My level was low before any chemo so I'm not sure if that's why I was put on this at the start. I'm doing my own injection tomorrow!

Levels dipped a bit last time, but guess what.... They were at 11.5 this time around. Something's obviously working:-)

The downside to the one off injection is that it can cause bad bone ache for a couple of days. It did a bit after my FEC, but after the docetaxel it was much worse, because docetaxel causes bone ache too.
If risk reduces risk of infection it's got to be worth it.

Hope everyone is keeping ok, no rises in temperature or any other nasty side effects.
Let us know how you're getting on.
ps, June I still have lots of stubble on my head, which my onc has said not unusual. I feel a bit like action man and if I don't wear a sleep cap, not only is my head cold, but I stick to the pillow like fuzzy felt!
Sarah xxx
June22
Member

Re: Starting chemo in August 2012

Ellaboo - so nice to see another August person posting! I had my second FEC last Friday, and just this week my eyebrows have started to thin out :o( But they are still there... just thinner.
It is interesting to hear about your hair starting to regrow. I have a stubbly head with bald patches. The stubble doesn't seem to grow or fall out! Maybe after this second dose it will lose some more.
It was shaved as although I clipped it short after cutting off my hair, it itched like crazy!
I too am getting used to the 'no hair' thing... So nice not to need to wash and dry my hair every other day! And my body skin feels very soft and silky too! I do get a cold head though, so wear knitted beanies around the house.
This second dose they reduced my steroids a lot, and the flushed face thing was much more manageable, and it didn't cause my rosacea to flare up, for which I was really glad. I still had the sleepless night of crazy mind rambles though... I wish I could channel that energy somehow!
I hope your WBC improves. I don't know what my count was... just know they went ahead with chemo 2 so I assume all was well. I am vegetarian too, but they haven't mentioned this being an issue.
Good luck with getting through the next few days of chemo fog.

June22
Ellaboo
Member

Re: Starting chemo in August 2012

Hi, have just had my second FEC - eventually - after being delayed from last week due to low neutraphils (despite having the five injection thing). This morning my WBC were STILL low but they agreed to go ahead anyway. They have given me an injection to have 24 hours after the chemo which should spur my bone marrow into action. Has anybody else suffered with this? Apparently, if I encounter the same problem in three weeks at my third FEC then they may have to drop the FEC dosage. My hair fell out exactly two weeks after I had my first FEC. It started coming out in strands, then in my hairgrip so in the evening I asked my husband to shave it with a hair razor to a quarter of an inch. After that, every day more and more came out in the bath so thank god it was short and not long, I can imagine that would have been far more traumatic. Is now virtually gone but interesting, since my chemo was delayed a week, it had started to grow back like baby hair so am taking that as a good sign for that wonderful day when I have my last! Is actually very liberating having no hair, I dreaded the idea of it far more than the mastectomy, ridiculously, but actually it's fine. At home I don't wear a scarf and my children (age 10, 8 and 3) have completely and immediately accepted it and it just passes them by I think! Have been wearing scarves but have bought a long wig to wear with a woolly hat when it gets colder as I can imagine that necks can get very cold! Still have my eyelashes and eyebrows but waiting for them to go this time I think. Mandy, I read back to your post about using natural remedies to boost bloods so will absolutely be doing that this week. Have already converted temporarily from vegetarianism to get my red cells up! Last month the day after my chemo I had the same reaction to the steroid that many of you seem to have had - bright red burning face. This time, they've dropped my steroid today by half to see if that makes a difference and I don't take the anti sickness ones anyway as I don't feel sick. So fingers crossed that works! Is so inspiring to read all your stories and to know that there are others with exactly the same feelings as me. Thanks! x
June22
Member

Re: Starting chemo in August 2012

I'm surfacing to wave at all the August Chemo ladies. My 2nd chemo went well on Friday, but then I felt the side effects kicking in... so I have been all but hibernating until today.
The area where the PICC line goes across the chest became quite tender for me, so I used a hot water-bottle to ease it. I expect it is that darned Epirubicin causing the trouble. My hand still hurts where the first chemo dose cannula went!
Anyway, starting to feel a little less exhausted and foggy headed, but still have some of the nasties to cope with. I just keep remembering it is all going to be worth it come spring. Good luck to anyone else still having chemo from the August thread.... hope your side effects are few.

June22
TigersGirlie
Member

Re: Starting chemo in August 2012

Hi Luvvie,
Wow get you posh dinner, hope you enjoyed it and wedding, off to enjoy sunshine, me and you again on Wed hope we will be okay.

June good luck for second treatment
Mandy glad your eating better hole side effects are better

Love to all xxxx
June22
Member

Re: Starting chemo in August 2012

Luvvie66 - I hope the treats were enjoyed fully, and the wedding is/was wonderful.
I too have to wear a hat in bed... adds the finishing touch to the flushed face and red nose from the steroids LOL!
I wish you well with your TC. I'm not looking forward to my TC doses as I know they can be tougher to deal with. I hope yours gives min side effects.

My Pre chemo health check seemed a bit short - bloods, weight, height, and a 'How did it go' quick chat with a consultant I hadn't seen before. I assume my blood tests were okay as chemo went ahead, but I certainly didn't get much feedback! No scans or xrays... do others get those? Maybe it was because I only had a lumpectomy so didn't need scans yet, and unless my bloods showed a problem or I said I had pain, they assume all is okay!

Chemo 2 went well and is ticked off on my card... just the next three weeks to manage. At my request they reduced my steroids as I have rosacea, and it flared up after the steroid tabs. My poor nose was so sore for 4 days last time, so I am keeping my fingers crossed it doesn't happen this time.

Today I am exhausted as I was kept awake with rambling thoughts all night, though my body needed rest. Finding it difficult to drink the suggested 3lt of water... about 1lt done, 2 more to go. I do think the water helps reduce the nasties for me though. So far - no sickness, but I can feel it lurking in the background. I eat small amounts often, and it seems to keep the tummy settled.

Hope you are all able to enjoy some autumn sunshine... even though we are supposed to cover up!
TigersGirlie
Member

Re: Starting chemo in August 2012

Hi ladies, good luck on number 3, I'm same as Mandy next week.
Unfortunately the scans showed pulmonary embolism (clots) so now am on anti-clot injections until I finish chemo, then tablets after.

Hope everyone else is well and as always wish for minimal side effects for us all

Hugs

Victoria xxxx
TigersGirlie
Member

Re: Starting chemo in August 2012

Hi ladies, good luck on number 3, I'm same as Mandy next week.
Unfortunately the scans showed pulmonary embolism (clots) so now am on anti-clot injections until I finish chemo, then tablets after.

Hope everyone else is well and as always wish for minimal side effects for us all

Hugs

Victoria xxxx
Luvvie66
Member

Re: Starting chemo in August 2012

Hi Ladies, half way through Mandy..... That'll be me on Wednesday next week too!
June, glad to hear you didn't suffer too badly first time round, no reason it should be any different today, here's hoping for minimal side effects again xxx
I'm planning some treats before next Weds as I'm expecting to be out of action for a bit following my TC cocktail. I'm lunching at Braserie Blanc today (get me!) for a friends birthday and then off to my cousins wedding at 5pm. think ill be needing a rest tomorrow for sure!
it is getting chilly, I've resorted to wearing a sleep cap as my head gets very cold sticking out of the duvet. Not the most attractive look eh?
Good luck to us all over the next few days
xxxxxxx
June22
Member

Re: Starting chemo in August 2012

Congratulations on your 3rd session MandyJ.
I go for my 2nd FEC tomorrow, and I'm not looking forward to it - of course non of us do, other than to tick one more off!
I had quite an easy time through the first course, and half expect the second to display more side effects, but maybe I will stay lucky.
I have my PICC now, so won't need to have a cannula. Just as well as the vein used in my hand has ached a lot due to the chemo going through it, despite great care taken by the nurse to ensure it didn't become inflamed at the time.

And I have my wig... but it needs taming by a hairdresser as it is in my eyes. Not sure when I am going to fit that task in! Until then, I'll keep to wearing a wooly hat, as the weather is colder now.
mandyj
Member

Re: Starting chemo in August 2012

Hooray. 3rd FEC has gone in today. Half way there!! I have been reading a book about diet and breast cancer by Suzannah Olivier, very interesting. Took her advice and started eating more healthily (organic where possible) and checked with onc about taking vitamins etc. I started taking multi vitamins with olive oil, co-enzyme Q10, aloe vera, evening primrose oil and hemp oil (that tastes fowl), about a week ago. This time my pre chemo bloods were almost back to the levels I had before I ever started on chemo! My WCC and neutrophils were twice as high this time compared to after the first dose! Not sure if its a fluke but they won't do me any harm. Its true what they say, you are what you eat.
Hope you are all well.
mandyj.xx
mandymid
Member

Re: Starting chemo in August 2012

Hi Mandy
Im not sure if Im breaking the chemo rules but I dont check my temperature but Im the sort of person if I get a raised temp I'll know about it it straight away! Shaking, shivering etc etc so was guided by that but I didnt feel physically ill! Maybe I should be doing it but just bank on the fact that if theres something amiss I'll twig!
My neutrophils were only just good enough to proceed with the second chemo so prob not a massive shock!
Glad you enjoying life before the next blast
Mandy x
mandyj
Member

Re: Starting chemo in August 2012

OMG! I have a few days away from my computer and you all seem to be visiting hospitals! So sorry to you ladies that have been suffering. Hope you have got through the worst bits. So far so good for me but it just goes to show that you don't even need to feel ill and you can still be septic! Have not checked my temp for days as I have been too busy living a normal life prior to my next dose on Thursday next week. Will check my temp now! My white blood cells and neutrophils were only half as good before the 2nd dose so there was less to fight back with this time.
Enjoy the weekend and the sun whilst its here.
luv mandyj.xx
mandymid
Member

Re: Starting chemo in August 2012

Sarah, stick at the iron rich foods sure they will help, what about the bread you can buy with iron added (or you could when I was last pregnant! ok it was 6 yrs ago!!) apricots? baked beans? have you heard about spatone, its little sachets of iron rich water that you can add to squash or better still orange juice so you get vitamin c to help absorb iron. Im always recommending it to my patients as many cant tolerate iron tablets and often dont know about needing vit C with it. You can just drink the stuff but it tastes of metal!
Victoria that does sound a bit scary but as you say nothing they cant sort out.
My stay in hospital was fine as I didnt really feel unwell but just a bit boring! I thought I may end up back in as the first night home I was just the same, high temp, hot, then cold then sweaty all night! Not very nice!! I'm a pleasure to share a bed with....not!! My wcc count was already low after one dose of chemo so kind of half expected it especially with 3 kids and all that that entails! I have tried to keep away from crowded places but you cant stay in all the time or always be outdoors either can you? They will give me more lenograstin now though as I started out without any, had 3 days worth after the second chemo (then 2 more in hospital) and they say after the next dose I will get 5 days worth.
Its all good fun! Hope everyone has a good weekend the sun is shining in Stoke On Trent!
Mandy xx
Luvvie66
Member

Re: Starting chemo in August 2012

Mandy, so sorry to hear you've been in hospital. I hope they looked after you well and the antibiotics have done their job. Hugs to you x

Victoria, how frightening for you.

At least you got it checked out, lets hope Monday's scans are clear. Given that hey are waiting until Monday sounds hopeful that it's precautionary I guess?

I seem to have come through the worst of round 2 now... Although am in the low immunity period, so guess it's just the luck of the draw. My white blood count was quite good pre this round, but my red count was low.... I am still really tired and a bit breathless.... They're keeping an eye on it in case I need a transfusion. I'm not sure my plan of eating steak and spinach is really helping that much!

Take care everyone and enjoy the weekend.

Sarah xx
TigersGirlie
Member

Re: Starting chemo in August 2012

Hi Mandy,

So sorry you have been in hospital I have as well and have to keep going back daily for injections, I was rushed in overnight with chest pains, I have come up a as a high risk clot person. I have a scan on Monday to check if I have a pulmonary embolism (clot in lung). Clinic has been amazing and my chemo nurse came to see me on the ward. Anyway was so worried they would stop chemo but no they give you blood thinners and carry on. Hope to make it though weekend without going back in lol.

Hope that everyone else I is well and side effects minimal

Hugs Victoria
mandymid
Member

Re: Starting chemo in August 2012

Thanks Tigersgirlie and June22. I have booked to go see someone at Mcmillan. It was never about not accepting help for me as Im willing to accept anything at all that may benefit me but I kind of feel like already I devote too much time to cancer if you see what I mean. I hate how much time feeling unwell takes up following chemo, hate the number of appts but mostly hate how much space it takes up in my head so its just another thing but then on the reverse of that if by talking to an expert helps clear my head then I will have benefitted I guess.
I have spent a couple of days in hospital this week with neutropenia sepsis, didnt feel too unwell but had a high temp so went in and had some IV antibiotics. Even more time devoted to this stupid disease!
Luvvie 66 I agree aching is better than vomit for sure!
Hope everyone is ticking along ok
Mandy xx
TigersGirlie
Member

Re: Starting chemo in August 2012

Hi all,

Luvvie am glad its better in regards to sickness shame about ache and exhaustion. Hope you managed to enjoy some of your anniversary.
Now I'm Back from the fec sleep lol, I'm abit like Luvvie bone ache exhaustion. But seems to get better everyday.
Mandy _ I'm meeting a local group on Thursday called bounce back, I always think that you should never decline any support, ask your breast nurse there may be a local group like mine.

Of to sleep try and get rest ladies and hope side effects not to bad to all

Victoria xxx