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Starting chemo in October

Jayne_m
Member

Re: Starting chemo in October

Hi Suzee64 - I also suffer from indigestion for a few days after FEC and have found that good old gaviscon does the trick. I am starting to see so many side effects that remind me of pregnancy - nausea, tiredness, indigestion, foggy brain, not sure why there is a similarity between two so different life experiences but at least I know how to cope with some of them 🙂
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Re: Starting chemo in October

Hi all, It seems that we're all getting to the stage that we've lots to report.
Fifirosalie, I agree with the others that your hair looks great. Really sorry you're suffering so much. Must be so annoying having to spend so much time in the hospital. Hope you're feeling better very soon. You need to treat yourself and your daughter to a lovely meal after the hospital broccoli! My mother could also be a bit like yours, but mostly because it was the only way she knew how to deal with things. She wasn't actually nasty, but always said the wrong things. We always found it best to laugh at her comments and to also remember that she was suffering too, even if it wasn't immediately obvious. My kids found it helpful to compare notes with their cousins who understood their grandmother.

CW77, I'm in my 3rd week after 1st FEC chemo, had the Paxman cold cap, and have just started shedding some hair. I've lost a lot down below, but not too much form my head so far. Mostly it's come from the back of my neck where the cold cap didn't cover, so still hoping I can hold onto enough of it.

Suzee64, Sounds like you had a right day of it. You must have been exhausted by the time you got home. When I was using the cold cap I asked about the toilet and they simply unplugged me while I went and then pluged it back in again after. Just as well as I was drinking loads and had to go a lot. You seem to have had an awful time of it afterwards too. I'm really sorry it was all coming together for you in the same week. I had the bad indigestion until I took the 'voluntary' tablets and that eased it. I've not had any pains, but I haven't had an op, so don't know if that makes a difference.
I postponed my second chemo as I wanted to change my day of the week, so I'm having a fit and well week this week before starting again Monday 29th same as Suzee64. That same day my son is running the Dublin marathon - I think he has the harder task!
Good luck to all Pumpkins.
Nonni385
Member

Re: Starting chemo in October

Day 5 after first FEC - still feeling nauseus and have heartburn. I'm having intermittent diarrhea as well, fine one day and then the next I don't want to be more than 10 paces from the loo. I think part of the problem is I'm a diabetic controlled by diet and I haven't got the food balances right yet. The hospital told me to test my blood 3x per day but at present I can't find my glucose monitor so will be out to buy a new one in the morning.
I tried to have a bath this evening and had great fun trying to wash my hair and keep my PICC line dry but the good news is that I found a seller on ebay selling PICC line covers and one should be here by Tuesday / Wednesday - It's the same company I used for the cover on my broken leg a few years ago so I know it's well made and will do the job.
Nonni
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Re: Starting chemo in October

oh big day today, hair has started to shed after being so obsessed about it happening i dont feel too bad, this might change as more and more comes out. It's another stage started and and the sooner its out the sooner I can move on and the closer to the light at the end of the tunnel!!!
suzee64
Member

Re: Starting chemo in October

oh forgot to say thick the menopause as started having so many tropical moments now, oh and also got wig on thurs, someone needs to tell the wig manufactuers that some of us ladies go white early and would like some more stylish wigs, rather than the little old lady styles that they do, did try some different colours but just didn't look right as i've been white now for the last 15 years, so didn't get much choice but sort of happy with my wig, makes me look so much more like my sister has she ahs always had short hair and i've had long till 4 weeks ago when i made the decision to have it cut to just above shoulders i thick was propabley a good decision as its taken the wait off of it and it doesn't get so tangled now, as for the spots some of you ladies have mentioned i've had a few in my scalp, at the mo not shedding to much but ladie garden is thining lol
suzee xx
suzee64
Member

Re: Starting chemo in October

hi all, sorry not posted for a while, a quick update had first FEC on the 8th, got to hospital at 12pm to be told would need my bloods doing again, as they couldn't use the ones from the prevoius week. so then had to wait for results from that before they would make up treatment, so 4 hrs later was still in waiting room. then they came to give a big bag of drugs to take home and give me an anti-sickness tablet before starting treatment. nurse then called me through and inserted canular ready, then first they soak your hair with water then plaster it in conditioner and fit the cold cap which was really really cold and the pain acroos my forehead was excruciating, but nurse gave me some gauze to go under front then it was so bad. had to have it on for 1/2 hr before treatment, then the drugs were shringed in red one first 2 lots of that, then the one that gives u an itchy bum for a bit lol, then the last one which made my arm go really cold, had to leave cold cap on for another 2 hrs after, but they did feed me lol, veggie sausages mash and beans. when my time was up on cold cap had been needing to go to the loo for the last 1/2 hr so had to run as soon as was unhooked off machine, lol the cold cap is not a good look, it like a jockeys helmet and pushes your checks forward, anyway was bit shocked when i had a pee, it was red omg no one said about that. so when cap came off looked like i'd just got out of the bath. so now i was allowed to go home by now it was 8pm
by the time i was back home i was having a hot flush, which lasted the next few hrs, have only felt sick and dizzy for the next couple of days and then just felt sick but went back to work on the friday. by sunday night heartburn struck had to sit up most of night, and has continued, no loss of taste though, by tues had got sore throat, and snotty nose, weds cough started by thurs had lost my voice, fri went to doc's so now back on steroids and antibots hopefully it will clear up before blood test on friday, and next chemo on 29 oct, feeling really low at the mo, has any one esle had pain in their lumps and lyphms after having chemo has don't know if its the chemo working or from all the coughing i've been doing.
big hugs to you all
suzee xx
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Re: Starting chemo in October

Hi Pumpkins, have just logged on to ready everyone's posts. I've just had round 2 of chemo (AC) and now my hair is falling out in clumps. Fifirosalie - sorry to hear that you've been neutropenic. Hope you recover soon. Your mohican looks great though - am sick of all my hair falling out everywhere at the moment, and considering getting it all shaved off tomorrow. Really can't stand finding hair everywhere all the time - but at the same time kind of frightened of shaving it all off. It's weird, but the hair falling out is really getting to me. I guess it's because when I look in the mirrow now I think I look ill. I guess it will all become more normal after a while.

Anyway - Jayne M - I also had a portocath fitted. It was a little uncomfortable at the beginning but now getting better. I still don't like to sleep or lie on the side of the portocath as I'm self conscious about it. Had twinges too - but nurse said that was normal as I had all my lymph nodes removed also so I am likely to get these twinges and shooting pain. Also suffering from insomnia now and again from the steroids. Was up at 4 this morning!
xxx
Jayne_m
Member

Re: Starting chemo in October

Fifirosalle your hair looks fab - I am cold capping, shedding and trying to avoid touching hair! I have a 14 year old daughter and she has been a complete star - it is tough for the kids and a shame your mum isn't helping but you are doing the right thing reassuring our daughter and letting her know how much you appreciate her. So hope you get out of hospital soon and back on track x
Fifirosalie
Member

Re: Starting chemo in October

successfully updated pic! have a slight mohican - never had the courage as a teen to do anything so radical, so now I'm taking the opportunity! It won't last, at the rate it's coming out, i'll be a bonehead in days.
Fifirosalie
Member

Re: Starting chemo in October

Hello pumpkins!
Thi is just a quickie to say I'm still around, but not able to Internet as been in hospital for a week. Loads of posts to read, and glad to see all are coping. I got a very sudden high temp, and was admitted for IV antibiotics. I am now severely neutropenic, and bloods are too slow coming back up, so next treatment is delayed. Was allowed home between meds today hence access to wifi.
Head tingling like mad yesterday, and hair coming out ib handfuls, so have shaved it all off, and felt instantly better. I think having the weight off thehair has relieved the discomfort substantially. Also made me feel better in myself, realising I'm still me despite the lack of hair. Will try and change my pic.
Have had a few tearful moments in hospital. Mushy broccoli made me cry the other day cos it smelled so bad! Think that just shows I'm feeling vulnerable! Bit lonely as being barrier nursed in side room so barely anyone to talk to. Also really struggling to deal with my elderly mother's behaviour. Being of stiff upper lip type she's totally unable to handle her own feelings, and is being predictably evil to others. She's got it in for my 12 year old daughter, who is really being a star - bit Jekyll and Hyde, but basically trying to be helpful while feeling like life's pretty unfair. Mother took the opportunity while I was indisposed to tell her how selfish she's being! I know who I think's being selfish, but probably won't benefit anyone if I tell her! I just desperately want to protect my lovely girl from all this, but I know I can't, so I'm just trying to give her strength and remind her that I love her and understand how hard it all is.
So much for quickie eh?
Big love to all you pumpkins, I'll resurface when they let me out of hospital next!
Jayne_m
Member

Re: Starting chemo in October

Jellymould and Ribby72 you have inspired me and I posted for the first time about my journey on facebook using Stand up for cancer Week as the reason for going public - I have had a wonderful response and a couple of people have thanked me for the reminder re mammograms. You are right, if we can get one person to have a check up it can only be good. I also felt that as the hair thins and is definately not styled any more, anyone seeing me out and about will know I havent just let myself go! We are all different and I kept very quiet until after surgery but now ok with who knows and talking about it.
Twinging has stopped today so guess it was the chemo - happy to be on the last lot of steriods today as sleeping is proving difficult - have felt pretty good this time and still feel ok today but a bit tired, guess tomorrow when I have the house to myself I can crash and recover!
Jenxroch - good luck for round two.
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Re: Starting chemo in October

Hi -Many thanks to all those who have added apicture, definitely a little more personal.

Jellymould and Ribby72, I think you're both great to be so outgoing about spreading the word and hoping it helps others to think cnd check. I'm not so brave and really want to carry on my life as though this isn't really happening. I used to criticise my mother for burying her head in the sand, but I think I'm doing a bit of that now myself.

Alfie73, I know what you mean about wanting to see what we can change, but I don't think it's that simple. I had thought I'd caught mine early and it was very small, but it had already spread to my lungs. Now I think I should have noticed before as I now have a life-limiting disease.

Maltomlin, thank you very much for talking the time to drop in to reassure us. It's much appreciated.

CollinSC, thanks for the encouragement about the hair. I'm not surprised you had a wobbly evening, you must be devastated to have it come back after having a double mastectomy.

JayneM, I just had a Port-a-cath fitted yesterday and know what you mean about the bruise on your arm! Probably too soon for me to feel twinges, but I think it's best for you to ring the hospital and check.
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Re: Starting chemo in October

draggonbunny & jayne m : just seen your post about your second round and i am pleased to hear that you seem to feel better than the first. My second is in a weeks time and i was starting to worry about how it would be compared to the first. I hope i have a similar experience
dragonbunny
Member

Re: Starting chemo in October

Hi Jaynem
Defo had some twinges in breast. Also - they are injecting in hand which is bit bruised but have stiff/slghtly painful arm between wrist and inner elbow. Like you trying to resist pulling at hair - only washing it every few days. Really tired now but hoping for more energy next week and week after like first cycle
x
Jayne_m
Member

Re: Starting chemo in October

Hi Pumpkins
Dragonbunny we seem to be together on our journey, similar to you I feel better this time and have to remember I must rest as it is easier to keep energy levels up than build them. Washed my hair this morning and loads came out but still no bald patches and I did have a lot of hair to start with - going to perservere as long as I hold on to some and hopefully the loss will slow down at some point - have to avoid the temptation to pull it out!
I had a portacath put in just over a week ago and I am sure I can feel the end of it - or it could be the chemo focussing on where the lump was removed, either way I keep getting a twinge in my left breast since chemo on Thursday, has anyone else experienced anything like this? Port was great for the chemo (my hand and arm still hurt from last one done through canula)but the insertion was painful despite the local anasthetic and I ended up with a bruise that covered the whole of my upper arm - ouch!
dragonbunny
Member

Re: Starting chemo in October

Hi fellow pumpkins
Ribby - so glad you are coming through. I had a red chest last night and you had mentioned this so it helped to know. Had a few palpitatons last night but luckily stopped now. Felt better after 2nd chemo - bit sicky but not as bad ths time (so far...). As jayne m said third down 4 to go - happy you were able to celebrate yur anniversay.
Hair began to fall out on day of 2nd chemo. Nurse expected me to be bald so was surprsed - I get the feeling she doesn't rate the cold cap. I have lot of hair so but still have what looks like full head - no bald spots yet. Cold cap felt colder this time but OK - prob cos less hair to cushion the cold. Not sure if will keep hair but happy if I end uo with some. However, wondered whether to clip it myself or just wait until it gets worse. May be bit difficult to do the back though. Keep expecting to wake up and see pillow with clumps on ...and it sheds in sink etc.
Thanks for encouragement maltomin
x
Ribby72
Member

Re: Starting chemo in October

Hi pumpkins!
Wow, there are loads of posts now!! We really are an amazing group of people arent we??
Day 8 of FEC cycle. Had a really good day yesterday, reflexology was amazing!! Bit wobbly this morning, feeling faint & lethargic but better this afternoon. Yawning for Britain tho!! Managing to eat well, loving my tinned pears at the moment! Making the most of still having my taste buds!!
Saw my wig lady today, had a not too drastic hair cut (all my blonde highlights gone now, how weird seeing myself as dark blonde again) & have changed my mind about my wig! Not going for the longer one now - decided to stick with something very similar to my 'normal' hair.... Decision making was never my strong point, even before chemo!
Still getting numbnes in fingers & toes but not too bad & ive been reassured by a friend of mine (5 years cancer free) that it is a side effect.
Found out today that a woman who i advised to get a lump checked out has been told its benign. She admitted if she hadnt heard about me, then she probably would have left it & if it hadnt been benign...... well..... It felt good that 1) shes ok and 2) my experience has already made 1 person think. Jellymould - i am of the same attitude, i WANT people to know wot im going through (facebook is my blog at the mo & i am very open when talking to complete strangers about wot im going through - i wear my hickman dressings with my head held high) & if i can help, advise or reassure ONE person then i will feel my experience has been worth something.....
Nite nite fellow Pumpkins... Sending positive thoughts & lotsapumpkinlove... xxx
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Re: Starting chemo in October

Hi , I think I belong in this pumpkin group too ! Never done this sort of thing before but here goes .Had 2nd dose of chemo last Thursday am using the cold cap and although thinning a litttle my hair will make it till next cycle . To anyone who is thinking of trying it I used it 3 years ago successfully with FEC so although unpleasant it is worth a try .I am having taxatere this time . Had double mastectomy but cancer's come back 2 and a half years later in my armpit and in my lung . decided to leave lumps in place to see if chemo is doing anything . Unfortunately I'm having a bit of a wobbly evening and I don't think its making any difference to the lumps in fact they are aching more today . I had a hickman line in last week , it wasn't as awful as I'd imagined & really makes having chemo lots easier ( I must have tricky veins cos its always a probem getting a canula in !)
Good luck to all you pumpkins starting the chemo groove ,listen to your body when it needs rest and don't try to be superwoman you are allowed a few down times amongst all this being strong and brave .
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Re: Starting chemo in October

I just had to say, I went through chemo etc over 4 years ago and I really feel for you all.
It's an awful time, but just batten down the hatches, and it will soon be over. You will soon be feeling so much better and looking forward (which you can't do at the moment). It's amazing how different you feel a couple of years out.
Jayne_m
Member

Re: Starting chemo in October

I have added a profile picture too taken on our family holiday just before surgery - happy memories. Wedding anniversary today and i managed a take away and a glass of wine (both against chemo rules). Feel glad I was able to have a mini celebration but shattered now after FEC no 2 yesterday so off to bed soon.
jane_813
Member

Re: Starting chemo in October

Hi All
As requested by Uphill Skier, I've added a picture. I chose tartan- as I'm in Scotland (anyone else?). Ok so it's abit of a cliche but oh well !
Alfie73- I feel exactly like you about this imminent hair loss. Just as we're beginning to get over the first chemo, this is round the corner. I'm hoping it's like everything else- we'll just get on with it and get through it. Lots of good people have done it before and we can too. Good we can all share the experience at the same time.
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Re: Starting chemo in October

Hi all,
Good suggestion Uphill skier about the profile photos, I needed a kick to do it, a flower is the best I can manage at the moment though, I'm not sure my chemo fogged brain can cope with working out how to do another picture, I really wanted to do a smiley face but soothing lavender will have to do instead at the moment!
Hope everyone at all the different stages of their treatment are doing ok. I have been SO tired for the last couple of days but feel slightly better today and actually havent yet had an extra power nap, will probably be asleep before the kids later though!
For me I think its hard to quantify which type of breast cancer would be the better type as they all have such massive ramifications for all of us in our daily lives and our lives and outlooks will never be quite the same again as a result. My cancer is hormone negative but HR postive which at least means that I am able to have herceptin but for me I found it difficult in its own way as I was convinced that hormones would be the reason for my cancer at my age (39) haven taken the pill on and off from when I was 18. I am now left wondering what caused my cancer and that means for me I find it diffcult to see what lifestyle changes I could make to prevent it happening again if that makes any sense at all.......!
Not sure how I'm feeling about the hair loss I think when it actually happens I will be devastated but it all still seems to surreal at the moment. I hated the wig I first chose at the hospital and have chosen another one, I'm not convinced I'm going to wear it though even if I do like it when it arrives but I guess time will tell. I have an appointment with the Headstrong service next week to do with scarves and hair loss I think not sure if that will help me or make me more scared.
Anyhow keep smiling everyone
Lots of love xx
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Re: Starting chemo in October

hi its funny i dont mind losing my hair i want people to notice and ask so i can explain my story and if it makes one person think and go home and self exam or donate to research then its gonna make my journey worth fighting. im not after the sympathy vote i wont people to understand the hard journey that it is.
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Re: Starting chemo in October

I agree with Little Bear that it's difficult to keep track of everyone now. I personally find it easier to identify people by their profile photo rather than their username, so it would help (me anyway, learning to be selfish at the moment!) if more had a personal photo, rather than the Ribbon symbol. It doesn't need to be your own face, a flower or anything will work for me - I think I have some form of spatial memory - pictures better than words. I'll blame the 'chemo fog'!
A few people have mentioned that they're triple negative. I'm Hormone positive, but Herceptin negative, but I'm finding it difficult to figure out what's worse. The positives mean that something helps the cancer grow, but that there's something to fight it with. The negatives have neither the cancer 'help' nor the fight. My onc says my combination is good, but finding that hard to understand.
I've also been told that the cancer has already spread to my lungs, so my treatment plan has changed and I will never actually be cured, simply controlled. Not at all sure what that means for the future, but have decided it probably means I won't see my 90th birthday like my mother and grandmother!
Weirdly, I'm currently more concerned about my potential hair loss. I'm at Day 17 after FEC 1, definitely losing lots from the nether regions, but nothing moving on the head yet (I had the Paxman cold cap). I feel very well, so want to be able to deny the cancer to myself as much as anyone, so a bald head will make that difficult. Don't know if that's really a healthy attitude, but it's how I'm feeling right now.
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Re: Starting chemo in October

Dear old and new pumpkins
It's difficult to keep track now there are so many of us!
Had my first cycle of TAC (the Taxotere et all one) yetserday. Glad that bits over; lovely staff and fellow journey-ers but vomited for England last night and will be pleading for other anti-emetics next time! Nauseous today but subsiding now, hoping to eat tomorrow!!
Ribby glad your birthday was ok, hope the unofficial one is a lot better and you can have a hug from your Princess then.
TJ good luck for next week. Big hug to you Noranelly.
Lots of positive thoughts to all other Pumpkins.
Little Bear (Sue) xx
Jayne_m
Member

Re: Starting chemo in October

FEC 2 done - that is a third of the way through now. Cold cap more painful this time but I think that is because my hair is hurting and shedding at the moment. The nurse said that it is normal to shed quite a lot of hair during first and second round as while your hair is quite thick, the cold cap doesnt reach it all. He said that ladies who persevere generally hang on to a fair amount of hair and there was a lady there on her sixth who still had a reasonable head of hair although quite thin in places. She said that she wears hats and scarves but likes having some hair showing. Will keep going with it unless I lose the lot but will be investing in some trendy headgear too 🙂
Feeling ok at the moment and trying to pour gallons of water into me to flush this poison out.
Good luck for next week TJ, I really hope you get started.
Teej
Member

Re: Starting chemo in October

Oh Pumpkins I'm so keen to get started and join you - originally booked in for first chemo on 4th Oct but problems with seroma and infection has meant it keeps getting postponed. Now on my third week of antibiotics and feeling much better and finally got the go ahead for next week. I'm actually really looking forward to it as all this delay has had my imagination working overtime!

Jellymould - I'm triple negative too - did you have lymph involvement? I had 22/24 positive and a couple of lumps have appeared in the last few weeks just above my collar bone which could be nothing but are worrying me. Any other triple neg ladies out there?

TJ
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Re: Starting chemo in October

Yes I am I have just had the phone call 31st of October Halloween describes it well. Sooooooooooo low an d can't stop crying noranelly
dragonbunny
Member

Re: Starting chemo in October

Hi Nonni385
Bloomin eck - what an experience. Hope she was OK...
Hopefully you will sleep better tonight. I can drop off alright but wake any time from 3am -6am- thank god for all night radio.
x
Nonni385
Member

Re: Starting chemo in October

Hi Pumpkins

I had my Picc line put in on Tuesday and had to spend hours hanging around the ward between the blood test & the fixing of it. Quite disconcerting as the person sat in the chair next to me receiving chemo suddenly went into cardiac arrest, I was very impressed with the way the staff handled the incident but it did add to my anxiety levels.
I had my first treatment yesterday and was also the 1st user of the new cool cap system they had just been trained on - I o hope they got it right! So far the only side effects are a headache, dehydration and an inability to sleep last night
Nonni
Kittyqueen
Member

Re: Starting chemo in October

Hello Pumpkins xxxx
Just a quick pop in fron the March thread. Quick message for Uphill Skier re sore mouth. I found fresh pineapple chunks helped and also helped with any nasty tastes. Would personnally be a bit wary with Bonjela as can be quite harsh. tastes.
Nice to see you are all doing so well, seems ages from the first chemo to the last but it does pass quickly.
Love
KQ

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Re: Starting chemo in October

uphill, do you think she thought you ment razoring it?? i cant imagine doing a number one or even zero would cause any cuts!!! I have spoken to others who have shaved their heads and have felt it gave them some control in such a difficult time!!!
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Re: Starting chemo in October

Lot of people mention shaving their head, but a nurse told me that I shouldn't do that due to the risk of infection. I was too confused at the time (having just been told I had BC) to ask her how or why, but I was wondering if it was because of the possibility of cutting yourself. I'm now not sure if she simply meant not to do it myself personally. I'm back in the hospital on Friday for the Port-a-cath, so I must remember to ask.
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Re: Starting chemo in October

I am day 9 post first treatment and am too a little nervous regarding the hair starting to fall out!!!! This hasnt happened yet but each night i go to bed i thinknis this the night it will start!
uphill skier my head has been tingling too but i washed my today and there was no shedding :0) I was thinking of shaving it off this weekend if it starts to shed cause i don't think i could cope emotionally if it starts to fall out in clumps.
On a positive note i have made it to college to attend my uni lectures today and im dead pleased with myself :0) hopefully i will have no problems completing my final year!!!

Alfie- I am pleased to see you are feeling a little better emotionally. It so nice to have those days when you don't feel so sad and feel like you for a short time.
Jenx
Ribby72
Member

Re: Starting chemo in October

Hi Pumpkins....
Thank you for your birthday wishes.... 🙂
Good day really - didnt do much til lunchtime then had a bath & washed my hair then had a few visitors in the afternoon with cards, flowers, presents. Got very emotional this morning cos my Princess came in to give me the card she'd made for me but she has a really chesty cough so i couldnt kiss & hug her like i usually would.... 😞
Palpitations not too bad today (or am i getting used to them?) but fingers keep going numb..... i have heard this is a side effect but doesnt stop me doing stuff, ie typing, so just keeping an eye on it... Also neck ache a few times today but again, im just keeping an eye on it.
Appetite is rubbish in the morning but by about 2ish im starving so making sure i eat all my tea (& birthday cake of course!).
Having wot i hope are 'chemo fogs' where it feels like im going underwater, ears go funny & then head follows, then for about half an hour i cant make any decisions, hold a conversation or concentrate (hang on, im blonde anyway so that isnt THAT much different!). Dont last long but i dont fight it, i just let it happen.
Got my 1st complimentary therapy 2moro morning if i can manage to get my ass outta bed in time.
Anyway just thought i'd let u know i had a good day after all & have started planning my 'belated 40th' already!!
Glad to hear everyone seems to be ok & a big hello to the new Pumpkins.... stay strong girlies... xxx
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Re: Starting chemo in October

Hi Jane 813.
I know what you mean about it being bizarre and unreal. I'm on Day 15 after 1st FEC and feeling particularly well, pretty much back to my normal self. Except........my head was tingling when I washed my hair 2 days ago, holding off washing it again now until Friday. So far, no hair loss, but I'm getting really conscious of it, almost afraid to touch it.
But I also find it odd, when I was never ill in the first place (the cancer being silent), to have signed up for chemo which then makes me sick. I almost feel like a fraud when friends are fussing as I feel fine (before the chemo) and again now.
Can't help thinking the emotions may get very thrown by the hair loss. It will mean I have to tell my grandchildren something and they lost their other grandfather to cancer last year, so I'm not sure they'll believe that everything may be okay.
Crossing all fingers and toes right now.
jane_813
Member

Re: Starting chemo in October

Hi all
Firstly Happy Birthday Melanie (Ribby)- like others I hope it will not be too bad and you can make up for it when this is all over !
A week after first my first FEC and I feel almost normal after several days of sickness. Apart from the strange taste. In fact there are some foods I can hardly taste at all. I have kept a pack of flavoured Tic-Tacs (orange and lime/ strawberry- not mint) with me and whenever I have the bad taste I can just take one and find it helps. Your sore mouth sounds awful Gail65- hope it improves soon.
It is really good to be able to 'talk' with each other about this- it certainly helps a lot. I've not had much opportunity to speak to others in person yet who've gone through this. Everyone seems to know-someone-who-knows-someone with bc. Not the same as actually going through it like us.
Just now I'm finding it strange that just as we are getting over the first chemo- (good luck those starting second one soon)- the next sledgehammer approaches- hair loss. It seems so completely bizarre and unreal.
Jayne_m
Member

Re: Starting chemo in October

Hi spookymoo - thanks for your reply and I am sure if I do lose my hair I will cope with it just like we all have to cope with everything else we have to go through to beat this thing! I am having 6 x FEC 75 so not sure if that makes any difference - I guess it is down to us as individuals like all of the SEs.
Good luck tomorrow too Dragonbunny - It will be good to be a third of the way through but I am not looking forward to feeling tired and foggy with that horrible taste again. Just hope that it goes as well as the first as the SEs could have been a lot worse.
Roll on Christmas 🙂
spookymoo
Member

Re: Starting chemo in October

Hi JayneM Just a reply to your post. Not sure what chemo regime you are on, but thought I would pass on my experience so far. I have had my 3rd cycle of FEC and am due to start Taxotere next week. I used the cold cap at oncology unit for cycle 1 and 2. Cycle 1 - all good very minimal hair loss - just a few strands every day.(I had cut it very short however before starting) Cycle 2 - about 4 days aterwards I got really really bad pain in my scalp - like hair being pulled out - and lots started o shed by day 5 - it really came out in clumps for about 3 days and was soooo painful - I almost shaved it all off. It has thinned a lot and is very fine and thin on top - I look slightly like a baby orangutan. Howvever hair loss had slowed down by the time I got to cycle 3. I had my 3rd one on 5/10 but nurse did not recommend cold cap (which I was pleased about as very painful second time round) and said I had lost more hair than I should have and it was not worth continuing. I almost 2 weeks post this chemo andI am still losing hair but still have enough left to do a "comb over" and have some hair on the back and sides. I fully expect it to all go once I start the Tax, but you know what, its not so bad. The most distressing part was when it came out in clumps and it ws very painful. Now I just wear hats and headscarves and its ok. I can deal with it. If anything it has made me more determined to beat this blooming thing! So good luck with your next cycle and the cold cap - its worth trying if you feel comfortable doing it - whatever works for you - its at least one thing you can make a choice about x
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Re: Starting chemo in October

Anyone suffering with a sort mouth - I saw Bonjela mentioned elsewhere, should certainly help anaesthetise it locally and give some relief.
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Re: Starting chemo in October

Temporary change of Profile Photo especially for Ribby - Happy Birthday - Hope you have some moments today that make you smile.
dragonbunny
Member

Re: Starting chemo in October

Hi
Spacebunny and jellymould - welcome to the Pumpkins. Sorry you (and us) are here but we are all here to try to support each other through this.
Jayne m - good luck for tomorrow hope you are OK afterwards. I could have written your post as I feel exactly the same. Feel bit scared to wash my hair .....

x
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Re: Starting chemo in October

hi just been dx stage 3 triple neg, will be starting chemo soon just waiting to see the onc, for a date
Jayne_m
Member

Re: Starting chemo in October

Hapy Birthday Ribby

Dragonbunny, we are both on our second Chemo tomorrow and my scalp is now tingling and a lot more hairs are coming out but no clumps yet so fingers crossed - I guess it is unrealistic to expect to keep all of my hair but still hoping the cold cap will help me keep enough to avoid the wig (which is hiding at the back of the wardrobe). I have read several posts which say that a lot of hair falls out after first and second chemo but then slows down - is that the same for cold cap users? Bit confused as I kind of assumed that anyone not using the cold cap would lose all of their hair fairly early on. Sorry if I sound hair obsessed.........
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Re: Starting chemo in October

Hi all and HAPPY BIRTHDAY RIBBY!!!!!!
Hope you feel kind of ok to enjoy some of your day??
I am now crashing I feel, with a sore throat and no energy - my husband had a throat infection last week so I don't know if I just have that or if this will get worse.... anyhow having spent the morning in bed I feel a little better but now have to go to my post surgery appointment at the hospital for more more inflation of my temporary boob (great!)
Luckily feeling a little less emotional today which is one good thing! Hope all you pumpkins are doing ok? GAil65 sorry to hear about your sore mouth haven't got any top suggestions sadly, there are some on the sticky at the beginning of the chemo link but if it carries on maybe ring your hospital for advice.
Anyhow thats all my typing energy gone, lots of love xx
Lucy_BCC
Member

Re: Starting chemo in October

Hi spacebunny

Welcome to the BCC forums, along with the valuable support you will soon have here please feel free to call our helpliners, they can offer a great listening ear, further support and information. Lines open during the week 9-5 and Saturdays 10-2 on 0808 800 6000

I am posting a couple of links to further information and support from BCC which you may find useful over the coming months:

http://www.breastcancercare.org.uk/diagnosis

http://www.breastcancercare.org.uk/treatment

Take care

Lucy

spacebunny
Member

Re: Starting chemo in October

Hello, hopefully starting chemo soon. Recently diagnosed, so all still very new. How are you doing?
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Re: Starting chemo in October

Thanks little bear and catseye for your comments.
Good luck little bear you will be fine xx
catseye
Member

Re: Starting chemo in October

Hi Gail65,
I finished chemo in July and sympathise with your sore mouth/teeth. I had exactly the same...it felt as though all my teeth were aching and my jaw also ached and felt 'tight'. I mentioned this to my Onc and she seemed to find it most unusual and suggested it was due to tension. It did subside towards the end of about cycle four..I saw an oesteopath which I think helped. However, I then got hideous oral thrush, so do look after your mouth.
Someone also mentioned tingly scalp..I found this to be one of the most annoying side effects, simply because no one could suggest anything to help and I had no idea it would hurt when my hair fell out!
I would say my head was actually painful for about half of each cycle. To start with, I could hardly bear to touch my scalp, then it was more of a sharp 'pins and needles' feeling..it drove me mad!
However, the symptoms do go away and now they are a distant memory,(except a persistent dry mouth). Hang in there..I know it seems an age at the time, but you will get through it.
Good luck to everyone,
XX
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Re: Starting chemo in October

Hi Gail, I haven't got that far yet, but my dentist gave me Gengigel which you canput directly on the sore bits. He says it's very good - I saw it in Boots the other day as well. Fingercrossed for you.

Ribby - Happy Birthday!!! Hope there are some really good bits. Thinking of you.

Off for first chemo now eeeeek!!

Little Bear (Sue) xx