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Starting Chemo in December.2012

Cybele
Member

Re: Starting Chemo in December.

Yeah, Cress - it's TUESDAY!!! Where the h** are you? please wave...

Well done on the walking, Maire - so good to hear that you are on the upswing again - it gives us all hope.. xx
I am still on the downswing, having not yet left the house today, and am still wearing my pajamas. Stomach not quite so bad, though.... onwards and upwards.
OK, am going to get dressed and go out now, before it gets dark, inspired by Maire..
Mindy63
Member

Re: Starting Chemo in December.

So sorry to hear how worn down everyone's feeling. Most people are 3 or 4 treatments down so every day-nay hour-is a challenge at the moment. I remember my sister telling me she had to climb the stairs on her knees towards the end of her chemo (14 years ago).
Having got off lighty with only 4 chemos I can tell you that the finishing line is a happy place and you will all get here. No consolation at the moment.
I am off to see the chemo nurse tomorrow then its Herceptin3 and radiotherapy on Thursday. I am running nightmare scenarios through my head at the moment: Nurse, "We've decided that you would benefit from another couple of chemo treatments", Me, "Noooooooooooo"
No, I know it's not going to happen but still worrying.
Looking at my nails, I seem to have wee half moon discolouration towards the base of my nails. I'm kind of proud of this as I think it's a bit of a 'war wound' marking either chemo1 or Taxotere1. Another wee side effect I may be imagining is the inability to 'hover' when visiting a public toilet. I can no longer pee straight but seem to have a major spraying issue. Sorry Crackers.
On the plus side I managed a 6 mile walk around Glasgow today. I walked from Partick into the city and out again along Great Western Road. I am truly knackered now but I am that wummin that has been' hit by a bus' 4 times since early December.
Going to celebrate with a mug of tea (yipee, I can drink tea now) in the sunny garden. Will be sending positive vibes to you all through internet land.
P.S Cressida-You've gone quiet. Hope you're o.k.

Guest user
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Re: Starting Chemo in December.

Hi Coyotegi, Just read out your post to my OH and he asked if it was me that had written it, as you said nearly word for word what I said to him this morning, cept I also complained about headaches, going to bed with one and waking up with one!. He asked if it made me feel any better reading your post, not really, just how great minds think alike!!! Hold on in there, we WILL get through our 'only 2 more to go', but like you, today I was ready to throw in the towel!! lol xxx
Jayne_m
Member

Re: Starting Chemo in December.

Caroline, I read your blog tonight and really feel for you. You are so right that the thought of two more or eventually one more chemo does not console you at the time, the thought of going through it again is horrendous and it is very hard to draw any comfort from the fact that it is nearly over when it isn't actually over. All I can say is that by enduring this horrible treatment you will know that you have done everything you can to beat this hideous disease and even with the very small percentage chance that this vile treatment might be needed, it is still worth it to have the piece of mind that you have done all you can and to not have any regrets in several week's tme when the chemo nightmare has faded and life starts to grow into its new normal.

I am 6 weeks after my last FEC and finally am getting back to feeling something like the person I thought I was and that will happen for you too, hang on in there.

Take care
Jayne x
Border_Collies
Member

Re: Starting Chemo in December.

Hi everyone. I wrote a long post this afternoon commenting on most of the above posts but I clicked "Post" and it disappeared ... floating in cyberspace somewhere or sitting in the wrong thread. I'm just too knackered to do it again.
I'm day 7 FEC5 and suddenly, out of nowhere, Cybele's Fatigue Demon has clouted me with a sledgehammer. Up until now I've had numerous side effects, the worst being oral thrush and sore raw tongue, and red sore eyes which burn so I find it difficult to read, watch TV or stay long on the computer. Fatigue, however, hasn't been a problem. I think now I've got 5 FECworths all in one go. It's as much as I can do to drag myself around. I've heard other ladies on here talking about fatigue and now I know what they were on about. Do hope it doesn't last too long.
I've got my Rads measure up appointment on day 10 post FEC 6 and if the fatigue gets worse on the next session I'll never drag myself there. Hope all of you are bearing up best you can.
mandyp
Member

Re: Starting Chemo in December.

Hi All
Thank you for your comments on the ears!
Hamley and Lolly - good to see you back....
Marge - are you getting ready for Thursday's poisoning?
Lisalouw - i know exactly what you mean on the food front... I am continually buying really healthy food but am drawn to biscuits, chocolate and sweet things......
Maire - Good luck with the RT
Love to all crackers.xxxx
Cybele
Member

Re: Starting Chemo in December.

'Losing it. Just losing it.' : today's post on chemonights.blogspot.co.uk
shellebelle
Member

Re: Starting Chemo in December.

* my post was supposed to have <<< hug >>> in it but I think between my chemo brain and trapped finger feeling I managed to delete the word hug
Lisalouw
Member

Re: Starting Chemo in December.

good evening , I've got out of the house today , day 11 of tax and C no 3 , feel shattered now and I could just go to bed now , still can't taste , I do wish I could eat healthy but I can't bring myself to do so, I keep saying to myself after all this I will eat well to try and help stop this bugger from coming back , my toes feel abit strange though hope it's not the neuropathy coming on , I'm getting very bored now as well of not being able to drive and get about and do normal stuff
mandy p, I have a whushing noise in my ears at night , I did have ringing but that was when I was on some antibiotics
coyotegi, sorry your having a rough time it's utter s...t isn't it, but rant rant rant and rant some more , it's hard to rant to people you know because they mean well so use this forum to rant as much as you need , sending a big hug , I'm also on my own but I have a little boy that I make hug me but he's like a slippery eel to hug xxxx
hamley
Member

Re: Starting Chemo in December.

Hi All. There are so many of us having a horrible time at the moment. I'm just passed the worst of FEC 4 now and am also dreading the next two. No one but you lovely ladies understands, so Coyotegi, stick with us, we know best.
Shellebelle, you put into words what I'm feeling.
Hang on in there, Cybele, I know it's rubbish. Big hug. I'm in my PJs too (2.18pm). I've got to get dressed to go food shopping shortly; before the crowds hit the supermarket, but I've enjoyed slobbing out today.
Omeprazole is definately good for stomach problems, but have you read the leaflet? Mine says 'Omeprazole may cause a reduction in the number of white blood cells and your resistance to infection may be decreased'. I reluctantly stopped taking them as I've been prescribed antibiotics (Ciprofloxacin) to help build my white blood cells up because of low counts on the last 2 cycles. I'm no expert, but this all seems very contradictory to me and I don't want chemo to be delayed if possible.
Hugs to all.
Cybele
Member

Re: Starting Chemo in December.

Coyotegi - BIG HUG xxx
It's so bl***y hard, isn't it?
I am in the bad part of FEC4 now, and yesterday I just wanted to scream and tear my hair out and smash the windows...
I took a Lorazepam last night, woke up briefly to take anti nausea meds this morning, then went back to sleep for the rest of the morning.
I haven't had many sofa days so far, but todat is definitely one of them. Am still in my pyjamas at 1.15, and there's going to be another Lorazepam tonight. I don't know why I've been resisting taking them.
Cress - the Omeprazole is dEFINITELY helping with the txoic stomach , thank God - it's not nearly so bad this time , touch wood.
I'm also despairing at the thought of having t ogo through this two more times. It's just sheer torture. I seem to have been feeling sick for the whole of my life. I'm on 4 different anti-nausea meds, plus steroids, but was still retching early this morning, and nearly threw up the meds.
I sometimes think about just stopping the chemo, but I suppose it would be daft having got this far. But I keep remembering that for my particular type of cancer/tumour, there is only a 7-8% chance that this is doing me ANY GOOD AT ALL.
that drives me crazy..
shellebelle
Member

Re: Starting Chemo in December.

Coyotegi ~ I'm so sorry you're having a rough time at the moment. Tax is harsh and I know exactly what you mean about feeling you don't want any more. I had done quite well myself on the first 3 cycles of EC chemo, almost lulled into a false sense of semi comfort, but then it changed to Taxotere and it's all so very different now. Like you, I have another 2 cycles to go (next on 7th March) and I'm more consumed with dread about facing this again, twice, than actually focusing on anything positive right now.
It's almost like we get to the halfway point and feel slightly euphoric for a brief moment, then that wears off after the next dose of poison when the effects are taking their toll on our already bruised and battered weary bodies. Yes, we may be nearer the end, but knowing you 'only have 2 more rounds to go' is still twice as far away and not as good as only having 1 more chemo to face, so I understand your frustration at those comments from friends and family etc., they're up there with the 'you're looking well' ones we have all come to love to hate 🙂
I know it's not the same, but here's a virtual <<<<hug>>>> from me and I hope you can draw that little bit of extra strength and support from this forum and know that you are not alone, you are strong and we can do this together. You might need to come back here more often and shout, scream and cry but nobody here minds that one little bit xxx
lolly123
Member

Re: Starting Chemo in December.

Hi to you all Crackers out there, not been on here much this time round, keep loosing track on how everyone is, my SE are not very good with computers at the moment, it feels like i am car sick when i start to read anything or type , my mouth is the worst this time, MOTH MOUTH is the one for me this FEC SE cant taste a thing toung is very tender, and gone off all types of food, drink, except tomatoe soup, i can taste that so been living on that for a few days, hopefuly this moth mouth wont carry on for much longer,
Sorry got to go, starting to feel car sick again very strange feeling.
lolly
x
QueenDrama
Member

Re: Starting Chemo in December.

Hi coyetegi. Rant away - thats why we are here. im living and praying for my last bl**dy chemo and if another person says youre 2 thirds through I will hit em!

On a positive note - though its too late for you now Cress for this weekend (did it go well?) but might be of some interest in the future.
A company called Cami Confidential makes lacy tops for breast surgey patients and they do a comfort cushion which cushions the under arm area.

Good luck with the radiotherapy Maire. Let us know how it went.

QD
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Re: Starting Chemo in December.

hi, i havent really been on here since the first time as was coping really well , but to night if i dont say some of the words screaming round my head i will be running,ok make that hobbling, out the door to the funny farm......its a rant i,m afraid WTF with more bloody effects from chemo. i have had enough, friends say "only 2 more to go" and "nearly there, well guess what , i dont want 2 more and i want to be past there...sod the taste in mouth and foul food, exhaustion even when done NOTHING, pounding heart, fingers and toes that feel like they have been shut in a drawer or something, not sleeping and generally feeling pathetic. want to cry but cant, want a hug but live on own and who wants to hug me anyway. thought the T part was going to be ok but guess not
Cybele
Member

Re: Starting Chemo in December.

'Brave New World': today's post on http://chemonights.blogspot.co.uk/
Mindy63
Member

Re: Starting Chemo in December.

Sorry to hear you Crackers are having a rubbish time at the moment. Cybele your hospital experience sounds horrendous. Hope some changes can be made so that it doesn't happen again.
Cressida-Hope you enjoyed the party. I have avoided all social gatherings mainly because I just could not be bothered putting the effort into being pleasant.
MandyP-I haven't had ringing ears but have been getting shuddering in my left ear. It has abated now.
I'm now 17 days past my last Tax and feeling fine except for my eyes which feel really burny (and look terrible-I've aged a decade around my eye). I feel my eyesight has been affected too. My other complaint is a very sore bum. I fear it's piles and think I'm going to have to visit the doctor about it. Do the indignities never end?
Getting my first radiotherapy session this week and my next Herceptin, so I'll get to see what it feels like without chemo. Just hope it's not the Herceptin making my eyes sore.

Border_Collies
Member

Re: Starting Chemo in December.

Cybele - I can't take the steroids because they give me hallucinations. All I get is some steroid in my infusion and that's it. Got some left over from FEC x 1 if you're desperate - just say the word.
I felt like you at FEC x4 that somehow the end was in sight and amazingly FEC x5 seemed to come around quicker than the previous sessions. I feel as if I've been trapped in some kind of time warp since diagnosis in November and that aliens had somehow taken complete control of my life - now at FEC 5 I'm beginning to see some light at the end of the tunnel.
You sound as if you've had a better day today. Actually I thought it was compulsary to consume the entire box of Maltesers - it certainly is in our house. This rule came about because OH would always leave a solitary Malteser in the box, not wishing to appear a pig after having eaten them all and there is nothing worse than seeing a box on a table and getting the gastric juices flowing in anticipation of a chockie, to open the box and find ONE in there. Maltesers just have to be eaten!!
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Re: Starting Chemo in December.

Cressida ~ Thanx for advice on pain relief, will definitely ask for something stronger next time. Will try slice of lemon in water. Will contact Human Rights Commission with petition against TAX and Baileys not tastingright, in due course!xQueen Drama ~ Day 10 for me tomorrow, so will expect to wake up bald! Will definitely try the elderflower, and hot red berry sounds good too, I can tolerate black tea, just about!x
Shellebelle ~ Sounds like our experiences so far are similar, did you just have EC or FEC? As you say, a doddle copared to TAX. Do you think it's the injections that are knocking us around? I had them from day 2 - 8 inc, and my stomach has been really painful ever since, feels like an elephants been sat on it! When I had them after FEC, I had back spasms each time the day after finishing the injections. Were you prescribed lansoprazole, as I've not heard of that before? My toes are still painfull, feel as though they've been in a vice! Went out for first time today and did a small supermarket shop, couldn't believe how shattered I was afterwards. Funny you liking hot chocolate too, have you tried it with squirty cream on the top, just adds a bit of luxury, without much extra calories!! mmmm .... How many more TAX have you to have, and are you having Herceptin with it or not? I suppose the only good thing is that we have had one lot, so that's one lot less to have!! Talking of teeth, another one of mine broke off tonight, wonder if we'll have any left by the end of all this?!?!
This forum is the best thing ever, at least we know how it is for us all, as we've all been or are going through it. and aren't fobbed off by oncologists saying they can't see chemo causing these different problems! Keep posting ladies and keep smiling
Cybele
Member

Re: Starting Chemo in December.

'MamaFo throws a spanner in the works':


today's post on http://chemonights.blogspot.co.uk/
mandyp
Member

Re: Starting Chemo in December.

Is anyone suffering from loud ringing in their ears????
No wonder I can't sleep!!!
x
Cybele
Member

Re: Starting Chemo in December.

Hah - 'bloated beast' sums it up brilliantly...

I've been really good all week, eating extremely healthy food, but today the steroids got to me and I ate a WHOLE BOX of Maltesers which my OH gave me a while back, and I had been nobly ignoring, and that was 600 calories and a whole load of poisonous sugar in one fell swoop.

I do love Maltesers.

Never mind, hopefully the chemo will nuke the bad effects of the sugar...
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Re: Starting Chemo in December.

Cybelle ask for the heated pad. The cold cap is still horrid but its is a bit comforting. My son got me a cuddly Bagpuss that goes in the microwave and stays hot for an hour or so. Between the two I could just about manage. Last time I gave up with the cold cap and lost all my hair but this time I stuck it out and still have my hair. I guess its worth but it didnt always seem like it.
Lisalouw
Member

Re: Starting Chemo in December.

Aww cybelle what a pain the backside , so sorry you had to go through all that again , no wonder you dread going , hope your sickness not too bad this time to compensate , we also have heat packs for veins and such, its strange how everywhere is so different xxx
The hallucinations I had was from other drugs not the chemo , I'm having 6 TC , I've just had 3rd one on 14th feb , chemo is a little sod isn't I, I thought I was coming round on day 7, but oh no , then had a day of being on the toilet followed by a day of very strange muscle spasms in my back, which I know is from my injections to boost my blood cells I have from day 5 to 10 , my mouth is also very sore like the rest of you , horrible isn't it, I can't taste anything and have a vile taste , I'm also on fungal tablets but still my tongue is furred up , but it hasn't stopped me shovelling food in , wonder if chemo does attact teeth as a few of us seem to be having problems, I pick my guard up tues to stop me grinding my teeth at night , I did this before all this but has got worse , I keep waking at 2.30 am too and then not much sleep , I'm also avoiding social outings , i just don't feel in mood , plus ill make myself ill by thinking I'll pick an infection up , plus I feel like I look like a bloated beast
lv to you all xxx
mandyp
Member

Re: Starting Chemo in December.

Cybele - I'll post you my steroids... I have a weeks worth due to my infection and they make me even more bad tempered than usual.... (which is really bad!)
Hugs to everyone... will catch up with the posts later as been feeling generally wiped out.
xxxxx
Cybele
Member

Re: Starting Chemo in December.

Border Collies - glad to hear FEC 5 is going well. x
I must say it's made a huge mental difference to me having got FEC4 inside me. After fEC3 everyone was going 'yay- halfway', but I just kept thinking 'i 've gone though all this, and now I'm going to have to go through the same amount all over again' Whereas now, having had 2/3 of it, it seems so much closer t othe end. Only 2 more t ogo.

Mind you, still got the horrors of days 5-10 of this dose to get through.. I wish we could have more steroids . I LOVE the steroids.
Border_Collies
Member

Re: Starting Chemo in December.

Cybele - glad to hear you finally got your 4th dose of poison albeit not without a certain amount of stress and swanless drama. Hope the sickness is under control this time.
Cress - I was given Omprazole from day one as a matter of course. When I found that my stomach was starting to play up during the latter part of the day my dose was increased so that I take 20 mg am, and 20 mg early evening. Not had a bit of trouble since. Enjoy your day of normality although personally I'm in Cybele's camp. I avoid social occasions so that I'm not forced to make polite conversations and small talk. Thinking about auditioning for the next series of "Grumpy Old Women" as I feel I have a lot to offer.
I'm 4 days past the 5th FEC with surprising few side effects at the moment apart from dehydration. I find it so difficult to keep drinking water and tea and coffee seems to make the dehydration worse. Thrush under control this time with Fluconzole, no sickness this time but still have constipation to deal with. Oh the joys of it all!!!!
QueenDrama
Member

Re: Starting Chemo in December.

cybele- just read your blog. its awful (not your blog, thats fab - the exerience you encountered). hopefully the head of cancer nursing will be able to kiss some a@@ ! x
Cybele
Member

Re: Starting Chemo in December.

QD - very happy to hear that the blog cheered you up a bit - I have to say that one week delay before FEC4 really was a blessing in disguise - feeling normal again reminded that there is life after this hell, that chemo will not last for ever. Sometimes when you're in the middle of it, it's very hard to remember that.

2 weeks ago I was on the verge of losing it, I was so down - but that extra week gave me the time to recover some mental as well as physical strength.

Hope your dose of poison yesterday isn't hitting you too hard BIG HUG xxx

Cress - am amazed you've got the strength to go partying at all ,and am most impressed by your fortitude. I'm basically just avoiding all social engagements at the moment, partly because of fear of another infection, partly because at this point in my life I cannot bear the thought of having to make cheerful social conversation with strangers..or anybody, really.
QueenDrama
Member

Re: Starting Chemo in December.

Hi Sand
I had tax x 3 first then i had the first of my fec yesterday. got to have 3 of those too. my hair fell out on day 10 after tax 1.
drinking coffee is a no no but tea (black) is tolerable. cannot abide milk - but can stomach soya milk. my favourite drink is the cordials . elderflower, ginger, and hot red berry are lovely.
Cress - njoy something normal!
Hamley - surely if youre on chemo it kills breast cancer wherever it is so your 2nd lump will be being treated IF its cancer.

QD
Cybele
Member

Re: Starting Chemo in December.

Cress - thanks, have sent copy of that blog post to the Head of Cancer Nursing at the Imperial Healthcare Trust, who is a reader of the blog and whom I have met recently - she told me to get in touch with her if I had any more problems, so hopefully she will come down on them like a ton of bricks.

Re the Omeprazole, i haven't changed any of my other medications, so as soon as the steroids wear off , which is when the toxic stomach starts to kick in - ie mon/tues, I'll know whether the Omeprazole is working or not. Fingers crossed - It was just so hideous last time.

Sand - yes, I have Emend intravenously before the chemo, plus every other anti-emetic there is, but I still get very nauseous. But with the drugs it's more or less bearable. Was interested by what you said about heat pad etc for cold cap - at my hospital they don't offer you anything at all - I will ask them next time!
Cressida
Member

Re: Starting Chemo in December.

Cybele - outraged on your behalf about the PICC fiasco. Are they going to scan it now, before they need to use it again? Insist on investigations being booked in now for later when you feel well enough, but before the next chemo.

Please can you let me know how the Omeprazole helps or not with the toxic stomach. The Oncology pharmacist thought that what I needed was more anti-sickness not more Omeprazole. I have stopped it again as it interferes with my sleep and my vision, but I am intending to start it the day before chemo to see if it does help with the dead thing that inhabits my stomach after chemo. I can't sleep then anyway and seeing seems piontless. If it is better I won't know if it is the Omeprazole or the extra anti-sickness. I don't think you changed any other of your drugs?

x
shellebelle
Member

Re: Starting Chemo in December.

Hi Sand. I too had my 1st Taxotere on Valentines Day. Previously had 3 x EC which, although were unpleasant, compared to TAX, actually were a breeze! I had a slight reaction to the Tax during administration but that was sorted out quickly. Felt ok rest of the day and also the following day wasn't bad either - DN came to show me how to do injections to boost WBC. However, between days 3-6 (Sat - Tues) I felt dreadful, days 5 & 6 the pain was almost unbearable. I could barely get out of bed, Tramadol didn't touch it and I hurt absolutely everywhere throughout my entire body, like nothing I've ever experienced in my life - it truly was horrendous. I wasn't sure whether I was going to implode, explode or sponaneously combust!! Once the injections stopped I started to feel a bit better, but my insides were fried, I had nasty oral thrush, even though took meds for it, everything tasted like the sewer, mouth ulcers, diarrhea, tingling fingers and toes, painful nails....... urgh it's been vile. The only positive thing has been I haven't been sick with either chemo drugs and only had minimal nausea with EC!
Have doubled up on my lansoprazole to help with the acid stomach and so I can eat fresh fruit - pineapple is great because I can taste it along with beetroot (boiled), fish, ginger biscuits and salty snacks as well as spicy things like curry - can't taste much else I'm afraid, but doesn't stop me eating them because I feel hungry almost all the time, so will no doubt be the size of a house by the end of this. Tea and coffee are yukky at the moment but I am liking hot chocolate and fresh fruit juice as well as ginger beer 🙂
I didn't do the cold cap and shaved my hair really short once it started falling out about 2 weeks into chemo #1. It hasn't completely gone and I have a fine covering of silver/blonde 'baby hair' all over my scalp but don't know if the Tax will see that off. Eyebrows and eyelashes have thinned, armpit hair negligible, pubic hair 70% gone but leg hair growing back!
As for my teeth, I've done ok so far but have been using difflam mouthwash morning and night as I am prone to ulcers and Corsdyl daily mouthwash inbetween and also clean my teeth with a baby toothbrush 4 x a day as well as my tongue (with a different brush) morning and night.
Everyone is having different experiences and side effects, but it really helps to read how we are all dealing with things and pulling through one way or another. I have laughed at the humour, cried for the suffering and admired the strength of all of the ladies on this forum and wish I could hug them all xxx
Cressida
Member

Re: Starting Chemo in December.

Todays the day of the nephew's engagement party and the glamorous stay at junction 15. My armpit and Mx area hurt, I can't wear a bra and I am exhausted from not being able to sleep properly (and from having cancer treatment for a year). Does anyone think it would be unreasonable if I sit in the corner wrapped in a blanket? Soooo hard to rise above it all and pretend to be cheery. After all, it is his engagement party, and not actually all about me. Will do my best, at least it is one of those "normal" things I am always wanting to do, so I will not take my blanket and I will enjoy myself. At least I will until I fall asleep....
Cressida
Member

Re: Starting Chemo in December.

Sand, I had severe pain on Tax. I thought I was being tortured. The amount of pain people get varies so much that they often send you away with paracetomol and then wait to see if you complain. Complain! I needed Codeine in the day and Tramadol at night. Both will make you constipated so get the Movicol ready. Tramadol is very strong and can make you feel a bit weird so just take 1 initially not 2. I found it better to take 1, then if I was awake and in pain a few hours later then take another. As for the mouth and taste, I found milkshakes and yoghurt drinks were good and the texture is pleasant. You can also try putting a slice of lemon/lime in water to improve the taste, but not everyone likes that. I really hated slimy, thrushy, tasteless mouth. Not being able to enjoy Baileys is an outrage. I do think the Human Rights Commission should be looking into Tax.
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Re: Starting Chemo in December.

Hi, Soooo sorry that you've been having such a bad time. Have they not given you EMEND for the sickness, I found it brilliant, makes you constipated, but forewarned is forearmed so to speak. At the hospital I go to, they give you a heat pad to put on your arm whilst having the treatment, also the one and only time I had the dreaded 'cold cap' they gave me a heat pad for my stomach plus a blanket wrapped round me! The only time I've had hassle was the day before my first TAX/Herceptin, I went to see onc and asked why I hadn't been given steroids to take before treatment, when they brought my paperwork they had me down for another FEC!! So I ended up staying on eating biscuits etc and having a drink in order to take steroids, this was 2.15 in the afternoon, and I had to take another four before I went to bed, needless to say didn't get much sleep. But all in all my experience has been tons better than yours. Does your hospital not have a patient liasion office? If it has then I'd create havoc til they got it right, it's bad enough going through this sh..t without the added pressure you're going through. Good luck with it all, and I hope the se's improve. lol
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Re: Starting Chemo in December.

Hi Maire thanx for that, I'll give soup a go. Vimto not too bad, also had it with warm water, taking me back down memory lane to a small cafe by the bus stop just off the front in Morecambe!! Not been there for some time, as live in Somerset now. Did try Baileys tonight, but yuuk. Maybe I won't become an alcoholic after all!!! ha ha. How long after treatment finished til you got your taste buds back?
Cybele
Member

Re: Starting Chemo in December.

Bad, bad day on the Chemo ward yesterday - no swans, not even a seagull..


'Fo Agonistes': today's post on http://chemonights.blogspot.co.uk/
Mindy63
Member

Re: Starting Chemo in December.

Hi Sand,
I hated water too. I quite liked drinking soup out of a mug because it felt comforting and I liked the texture. Water was 'too dry'. Does that make sense? Other than that I drank fruit juice-but then got horrible heartburn. Ice lollies helped for a bit too.
I found rinsing with salt water helped a bit.
When my taste buds resolved it happened very quickly.
Good luck. I found the moth mouth to be the most horrible side effect of all (along with maybe baldiness but you kind of forget about that).

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Re: Starting Chemo in December.

Hi. Had my first TAX/Herceptin on 14th Feb ~ Valent ines Day Massacre came to mind!! I was fairly lucky with se's of FEC once I ! Felt brill on day 2, even did some cleaning!! but paid for it on day 3 onwards. Terrbile joint pain from knees down, ankles and toes were worst, (maybe I ought to lay down more to distribute pain more evenly!) Only given paracetomol for pain relief, which didn't touch it. Can't taste anything, and finding it hard to find a drink I can take (must admit haven't tried Baileys again yet!!) Don't even like the taste of water ~ help ~ anyone got any suggestions? Unfortunately I can still taste chocolate!! but after gaining 10lb overnight due to steroids, I don't think that's a good thing! I feel like a huge blob! A few of you ladies have had tooth problems, same here, I did try Cordosyl, which I too found to be too harsh, I used to be a dental nurse many moons ago, and I've found that after putting a temporary filling in my own tooth, curtesy of Boots the Chemist, that using Sensodyne toothpaste has done the trick and taken the pain away, not the best taste in the world, bur heyho if it does the trick, it's worth it. I too seem to be wishing my life away and 'living' from one treatment to the next, but I suppose that's only natural. I had cold cap for 2 1/2 hours during first FEC, then chickened out. After 3 FEC and 1TAX still have a covering, but am expecting it to all drop out any minute. How long was it after having TAX til all hair fell out? just to get me prepared!! Hope the weekend is good to you all and you manage to kick the se's into touch!! My next TAX is due on 7th March, anyone else around that date?
Cressida
Member

Re: Starting Chemo in December.

I have just had the MacMillan benefits advisor round. ESA hopefully sorted for the forseeable, once I get the form signed by the hosp. You don't have to fill it all in any more if you are having chemo. Result. She also filled in the forms for a blue badge. Now I really feel like a granny. Kind of hoping I can't get one.
hamley
Member

Re: Starting Chemo in December.

QD, I won't have news on the lump until my appt with my surgeon on 6th March. Not too long to go but my worry is that as my 35mm lump grew in less than 10 months that this could have started between being dx on 13th Sept and my 1st chemo which was 14th Dec. I don't think I'll get an earlier appt though.
Cressida
Member

Re: Starting Chemo in December.

QD - I can't wear my perfume either - I am keeping it in the cellophane until chemo is finished. I think the hallucinations described were a reaction to other drugs. FEC did not make me hallucinate. x

Mandy - Interesting about the trial. I think you would soon know if you were really being irradiated cos your skin would burn, if not during rads then after. Slap on the cream, just in case. As for sleeping pills, I try to just take them just occasionally, as they are addictive. However, I don't think during chemo is the time to tackle it. At the end, when feeling better able to cope, you can wean yourself off. If necessary you can do a few nights without sleep - remember - if you can do chemo you can do anything. x

Cybele - so sorry the swans b*ggered off. Hope my deer don't do a runner. x
QueenDrama
Member

Re: Starting Chemo in December.

Mandy - my last dose of tax was reduced by 20% . mr lumpy has still put up his white flag so dont worry too much.
Cybele - your blog helped me a lot . i know that you had an extended wait before this last lot of chemo but the fact that after 4 weeks your body had begun to recover was really heartening.
3 hours before im poisoned. eek!!!!!
Hamley - any news on the other lump?. saying a prayer for you now.

QD
mandyp
Member

Re: Starting Chemo in December.

Morning all.
QD - no hallucinations for me on FEC. Was slightly delirious on TAX and found out last night that theyre going to reduce the next treatment by 20% as they think that potentially the side effects could be dangerous and cause long term damage as my body has been waving a few white flags.....
I'm not particularly happy about it as it means im only giving it 80% but they are the experts......
Cress - it;s the supremo trial that theyve asked me to particiapte on. Ive said yes.... but on50% on it actually get the radiotherapy but it sounds interesting..... it gives me fewer options and delays the reconstruction, but tbh i will throw anything at this damm thing if i can and am not worried about the cosmetics. hey ho - fate will decide if i get selected....
I'm going to try and get on the LGFB course at my local hospital....i have only heard good things. I did Yoga at the Haven in leeds yesterday and had an aromatherpy massage afterwards which was just lovely. I wanted to cry when i first sat down on the yoga mat as i was the only one with no hair and i think all the other ladies were not having active treatment but they were all lovely and came and talked to me afterwards which made me feel good.
Are any of you having to take sleeping tablets????....I seem to have been on them for months and every now and again miss one but then have a really bad night and feel wrotten the next day. What to do ..... body needs sleep but dont think i should be taking them every night?
Lots of love to all......
mx
Cybele
Member

Re: Starting Chemo in December.

This is weird - I posted this last night at midnight, but it seems to have disappeared

'They told me there would be swans': today's post onhttp://chemonights.blogspot.co.uk/
hamley
Member

Re: Starting Chemo in December.

QD, the nearest to hallucinations I've had on FEC was thinking I saw spiders in my peripheral vision. Then I was prescribed with vary focal contact lenses and there have been no further arachnid moments! The optition said I was at 'that age'.
QueenDrama
Member

Re: Starting Chemo in December.

i cant wear perfume at all - it makes my skin sting.

does everyone get hallucinations on fec. I have it for the firsdt time tomorrow and im nervous!
QD
Cressida
Member

Re: Starting Chemo in December.

A lady I met whilst having rads had a bottle of perfume from the look good feel better worshop. They give you good perfume. I got Ralph Lauren. She had been using it throughout chemo and all her treatment, but she said it was going in the bin after rads as she called it Eau de Cancer.
hamley
Member

Re: Starting Chemo in December.

QD, great news about the shrinkage.
Cress, have a great weekend. I want some deer (or swans) too. I'll have a look locally to see what I can find!
MZ, you'll get there. Look at Maire, she's there and is going on supporting and guiding us to the light. Please keep it up Maire.
Wendy, horrible delay, but it's not too long. Practice hissing and stomping your feet. It'll be their fault that you've become an expert with the extra training time.
Cybele, I hope it went OK today and the Lorazepam worked. FEC 4 has been a bit better than the others so far (so I'm not hibernating after all), I hope it lasts to days 5 & 6. I love your info and stats and your blog's been a great help for me so far as I was a few days behind you. It's meant that I've pretty much known how it was going to be. You're better at explaining how you feel than I am so it's helped my oh understand. I didn't let him read about the Northern Lights though!
Maire, someone suggested to me that I buy a 'comfortable chemo outfit', which I did. It's the only outfit I wash in Surf and Lenor. I usually use Persil and Comfort (other brands are available!). I won't be keeping the outfit once chemo is finished. Or I might keep it for surgery. And rads!