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October 2016 starters

swampy1901
Member

Re: October 2016 starters

Hi Angie

I have lost quite a few hairs from my eyebrows and look like someone has singed half of them away because they now finish in the middle of my eyes!! So I popped into Boots to ask the make up girls how to make good the damage so to speak. The girl I spoke to was lovely and had lots of tips on how to make the eyebrows look loads better with different techniques. Whether I retain the all the information remains to be seen but I didn't look too bad when I went off to the dentist this morning.

The eyelashes are the annoying ones - dropping into your eyes at awkward moments but I never was a mascara person anyway so not sure what will happen there - if they all fall out.

Reading up about the T seems to have conflicting information - it would appear that the eyebrows and eyelashes are likely to go then but so too can head hair. But people here have said how their hair has begun to grow back when on T - I guess it's the old old thing - we are all different so may/will have different side effects!!

But the scattiness is a definite side effect - I can't even remember what things are called -my family are teasing me and saying it's a trial run for when I'm retired and can't remember my marbles!! Charming!! lol!!

 

Swampy

Truey
Member

Re: October 2016 starters

Hi Angwyd,

 

I'm at Day 14 of my third FEC cycle and am completely bald - all my hair went on cycle 1 - but still have my eyebrows and lashes (and the more intimate stuff). Only my head has been significantly affected so far. My understanding, unfortunately, is that T will take our brows and lashes ☹️

 

I started on 30th September so my 1st T is planned on 30th November. I guess time will tell.....

 

Sue

Angywd
Member

Re: October 2016 starters

Swampy my hair is very fine too and lots of it. It's very thin on top and around the crown so I'm expecting the next cold capping to be even worse, don't know if I just have a low pain threshold but I do take painkillers and still find it excruciating! my nurse makes sure she pulls it as tight as she possibly can as well. We will be starting the T chemo around the same time so can compare the after effects!
Angie xx
Angywd
Member

Re: October 2016 starters

Hi, me again! Thanks Swampy and blueash for your advice,  Karen I really feel for you, if you're anything like me you will have all your chemo dates planned and have worked out your 'poorly' weeks for the next couple of months and worked this around them so it would really mess with it all if one of mine was delayed.  I know they are only looking after you but it's frustrating.  Yes I definitely know the spaced out feeling, usually for around  7 days post chemo, I am also having huge problems with memory, keep asking my kids the same questions.  Went to the hospital today with my daughter for her diabetes and she took me to one side and said 'mum you keep asking questions you've already asked'   Retaining information is also a big problem and I'm starting to get very frustrated with myself! 

Anyone else who is on FEC round 2 or 3, have you still got eyebrows and eyelashes?  I was expecting to lose mine and they have thinned slightly but that's all, VERY happy to not have to resort to the false ones, which I've never been able to use successfully before!  Does anyone know that if we've got this far and still have them does that mean that we won't now lose them?  And does the T chemo make them fall out?  Sorry so many questions!  

Love to all

Angie

💞

xxx

 

Kaz58
Member

Re: October 2016 starters

Hi all. I'm feeling a bit fed up. Should have had my third EC last Thursday, great I thought , half way there. Bloods ok, on the chair with cannula in ready to  rock and roll then wham....came over all hot and passed out. I came round to find several Drs and nurses round the bed. Anyway long story short after several obs and Ecg I was fine but Despite my pleas my chemo was deferred until this week. When I got home I actually felt like I had had the chemo, and have been feeling quite light headed and woozy since. Does anyone else have this ' spaced out' feeling. It's not something I've particularly had as a SE so far. Anyway fingers crossed for this week, can't bear the thought of another week missed . Just need to get on with it . Good luck to anyone else having there chemo soon . Hugs Karen.

swampy1901
Member

Re: October 2016 starters

Hi Angie

We seem to be at a similar stage of our treatment. I'm due for my 3rd FEC tomorrow and am just waiting for the district nurses to come in and do the bloods, flush the PICC line and do my dressings. For some reason they always seem to forget me on a Monday so I end up chasing them then having a panic in case the bloods go in too late for results at the chemo clinic the next day.

Like you I'm cold capping but find taking painkillers an hour or so before helps take the edge off. My hair is looking scruffy at the edges but it's always been fine hair but lots of it and to me it feels like loads has gone but family say it's looking ok generally.

The T part of the treatment is worrying me too but I tend to deal with stuff when it's in front of me so I'll cross that bridge when I come to it and hope it won't put a dampener on Christmas.

Good luck with your chemo.

 

Hugs x 

blueash
Community Champion

Re: October 2016 starters

Angie, do you take a nurofen an hour before you cold cap? If not start doing it because it takes the sting out of it. I had all Tax (doectaxel) and it is not worse, just a different set of side effects. You probably won't feel sick is the best bit. The feeling tired is the worst, if you can laze around in your pyjamas all day for at least a few days you will feel much better than if you have to stick to any routine. Make sure you take the claritin for the aches and pains xxx

Angywd
Member

Re: October 2016 starters

Hi Mary

Sorry to hear you now have another worry to contend with 😨. My sister in law had the same thing and was eventually told it was nothing to worry about and quite common.  I know that when you are already dealing with cancer it's the first thing that goes through your mind with any new ache or pain, it's so hard.  Glad you had a nice day for your birthday 🎉 

Have my 3rd FEC on Friday, already getting stressed about it knowing I'm having the cold cap which is excruciating but seeing as I still have around 50% of my hair (very thin on top)I want to try and carry ion with it.  It's the thought of feeling totally rubbish and being pond life for 10 days before I start to feel better again.  I guess at least I will know I'm half way through  the chemo after that one...... Then I start the T chemo which I gather is even worse 😱

Good luck to everyone else having chemo this week, at least we are now well on the way in this awful journey.

love 'n' hugs

Angie

💞

Sus12
Member

Re: October 2016 starters

Hi Maryminder, sorry to hear that they have found a nodule on your thyroid. It's so bad that you've only found out by an appointment letter :(.
It must be very worrying for you but I was told we can often seem to have nodules somewhere, which can be nothing to worry about. At least they are being thorough and it's getting checked out although I know at this moment that won't stop you worrying.
Everything crossed that all will be fine.
Love and big hugs,
SueF xx
maryminder
Member

Re: October 2016 starters

Hi Everyone,

Finally beginning to feel better and a bit more human, went out yesterday for a lovely walk along the front with Hubby certainly blew the cobwebs away, and then spent the rest of my birthday catching up with family and friends.

 

I had a scan on my Thyriod a few weeks ago as a nodule was found during my CT scan, as I hadn't heard anything I assumed all was fine and then yesterday I recieved an appointment letter for a Thyroid Biopsy in a weeks time, this has completely freaked me out, have decided to contact the BC unit and ask why I wasn't told a biopsy was needed, I'm not due to see my Oncologist until the 7th Dec.

 

Hugs

Mary xx

 

 

 

miss.mc
Member

Re: October 2016 starters

Hello everyone,

I just found this thread and its great to hear everyones experiences and advice.

I started chemo on 20th Oct.- I'm calling it C1 day.  I am having 4 rounds of EC (3 weekly), then 4 Taxol (2 weekly).  I was really worried about the hair loss, but decided I couldn't cope with a cold cap - the emotional stress of not knowing whether or not it would work or how well it would work, plus the discomfort/pain.  (I have Raynauds, so just a stroll down the fridge aisle in Sainsburys is enough for the blood to stop flowing to my fingertips and for them to become both numb and painful at the same time.  An ice pack on my head is therefore my idea of hell on earth)!!  So I resigned myself to going bald and like one of the other members decided I would just have to embrace it and make the best of it. (sorry - I read so much of the thread that I cant remember who it was now).

 

I did have long hair, so had it cut into a pixie crop (on C1 + 6 days) as a kind of halfway step, and to hopefully make subsequent hair loss a little easier to cope with.  I can't say the anticipation of chopping my hair short wasnt a little traumatic, but once it was done it was OK.  People were very complimentary, I started to really like it, and showering was soooooo much quicker. 🙂  It also required zero effort/styling - just pat it dry with a towel, arrange it a bit and go!  It was probably one of the most expensive haircuts I will ever have, if I calculate the 'cost per wear', as my hair started to fall out by about  C1 + 14 days. I don't regret getting a short haircut though - it was totally the right thing for me and has made the transition a little easier I think.  Over the following week I continued to lose hair and probably shed more than our black labrador - but the pixie crop still looked fine.  I just had to remember not to touch it or run my hands through it too much!!

 

On Thurs 10th Nov I had 2nd round of chemo. On Sunday (C2 + 3 days) most of my hair came out when I washed it.  My daughter was in the bathroom at the time and we both ended up in hysterics as my hair had apparently washed off my head and settled on my chin, giving me a rather bizarre beard.  By the end of my shower I probably had about 10-15% of my hair left and resembled a baby bird - NOT a good look by anyones standards!  I decided the remaining hair really had to go, so my other half shaved it off (with clippers and razor).  I was strangely calm, and glad in the end that the process was over.  It takes some time to get used to, but its OK.  We were due at a family gathering for my cousin's 50th birthday later that evening so my bald head had an audience on its 1st day.  I got dressed up and put on lots of eye makeup - its amazing how long your lashes look when you have no hair on your head.  And your eye colour becomes more noticeable.  Again, everyone was lovely.....though of course they are somewhat biased, being family and all.

 

My bald head is now 6 days old and I am slightly less surprised when I catch sight of myself in a mirror.  I have bought a few cheap beanie hats (£2 in Primark mens section) as my head gets cold (when I am not having a hot flush that is).  I have had fun experimenting with eye makeup, and with lipsticks which I havent worn for years.  Its quite fun.  I am finding that I want to wear slightly different clothes, something a little more 'edgy' as I think it will work better with a bald head...and different earrings.  I'm currently trying mismatched earrings and a clip on ear cuff (which I would never have tried otherwise).  Its quite liberating.  

 

Last night my bald head went to a breast cancer charity ball.  My sister lent me a gorgeous shell pink dress  and heels and I went to town with the makeup.  It was a wonderful evening.  So many people were complimentary that it was an overwhelmingly positive experience I am truly grateful for.  I have my sensible wig from the hospital, which has now been trimmed and styled.  It looks very realistic and I happier with it than I thought I would be (though I find I get hot in it after a few hours). I am also going to order some 'fun' wigs - maybe a pink one, a stylish grey bob..who knows.  I've also seen some gorgeous turbans online - there's a whole new retail opportunity waiting for me!! I'm going to enjoy it - its like dressing up each day according to how the mood takes me.  Some days a wig, other a hat or turban and some days I will rock the bald chic look.  They are all just fine once you adjust your thinking.

 

I didnt intend to write so much.  I just thought my experience might be helpful for someone else contemplating hair loss.

Much love to all

Karen

 

 

 

 

 

OldDawn63
Member

Re: October 2016 starters

Gracie - just popped in from September Starters thread to say how sorry I am to hear you have not been feeling well because of the SEs. It sounds as though your chemo cycles are shorter than the usual 21 days, which doesn't give you much time to recover before you have the next lot. So you shouldn't feel guilty for not being well enough to work during your treatment, although I do appreciate that in your case there are financial implications if you can't. But the severity of some of the SEs and their unpredictability means that you really don't know how well you will be from one day to the next, and you may find this gets worse with the T. This is why I haven't been able to work, even at home, because I couldn't guarantee that I'd be able to deliver a piece of work within a specified deadline. From your post it is clear you feel the same way. I think we have both done the right thing by taking time out, because it would be far worse to let people down than to accept that during this phase of our treatment we are unable to work. The best advice I can give, for what it's worth, is to use the 'good' days wisely. For example, pamper yourself - anything you can do to maintain or improve the condition of your mouth, skin and nails now during your EC cycles will make you feel better about yourself and may also help you cope better with the T cycles/ recover once the chemo is over. You can also use the time to do enjoyable things with friends and family, or catch up with things you don't normally have time to do when you are working. There may also be scope to prepare for returning to work, by keeping up to speed with developments in your area of work, and keeping in touch with clients and other people you work with (I expect you're already doing these things, in which case please forgive me for stating the obvious). I hope you are able to make the most of the next few days before your next treatment, and that the next cycle isn't as bad as you fear. P.S. I've got my second T (plus Herceptin and Perjeta) next Tuesday and I'm not looking forward to it either! 😕

Gracie
Member

Re: October 2016 starters

Hi everyone,

 

I haven't been posting recently because I've been feeling quite low due to constant nausea. Tiredness has also been an issue for me this cycle, with me sleeping heavily for a couple of hours most days. It's now day 11 of my second EC (I'm on fortnightly sessions) and, just like the first cycle, I'm now feeling almost normal, so I will at least have a few days before my next Infusion on Wednesday. I'm planning to fit as much in as I can during those days, but I confess to feeling a sense of dread about going through it all again. I need to snap out of it as I have 2 more ECs and 4 taxol before I'm through.

 

I think I would feel better if I could work a little, but it's just not feasible at the moment. I work on a daily fee basis which is booked sometimes months in advance, but I cancelled all of it as I have no way of knowing how well I'm going to be feeling on any given day. I can't risk the potential damage to my professional reputation by either under performing or cancelling at late notice. It's been a double whammy for me as I had to have some time off whilst going through treatment following my first diagnosis only last year. Thankfully, my clients have been very supportive and have assured me it will be business as usual once I'm back in harness. As a family, we are lucky to be able to take the financial hit, but not working is making me feel even more useless. Other women are dragging their sorry arses off the sofa and out to work, so am I just wallowing? Can anyone relate to these feelings? I know you are all going to tell me to be kind to myself and I know this makes sense. But it doesn't prevent me from feeling like I should be doing better.

 

I'm sorry so many of you are suffering. I haven't suffered from constipation at all. In fact, although I don't have diarrhoea, I'm very loose and it all looks and smells vile. I appear to be filled to the brim with noxious gasses (perhaps in itself a good enough reason to stay away from work!). I was given Ondansetron during the first cycle to help with the nausea, but it made the gas situation much, much worse and made my chest cavity feel like I had a huge boulder stuck in there. Interestingly though, it didn't cause constipation. Quite the opposite. I think the chemo finds our own individual weaknesses.

 

My husband shaved my hair off a week ago, as it was coming out in handfuls and getting everywhere. Oddly, I'm quite calm about it. My wig is very like my own hair and looks very realistic. I don't think anyone would be able to tell. However, I don't find it particularly comfortable and I tend to go out with hats and scarves. Actually, I think they look quite trendy and I'm quite enjoying experimenting with them. I also have a headband with hair attached to it which looks extremely realistic under a hat. 

 

Looking for for silver linings - chemo has brought new experiences, such as oiling my own head and visiting a neighbour with a sharps bucket (she is an ex-nurse who gave me my injections whilst my husband was away on business) 😁.

 

Mary, so glad your sister has no need to join us here.

 

Gracie xx

 

 

Truey
Member

Re: October 2016 starters

Hi SueF,

 

Yes, I now have 3 X T to look forward to.......

 

I had my first FEC on almost the last day of Septtember, so I'm a few days ahead in this group but more aligne with you all than the September group.

 

Like you. I'm getting to the better bit now as on Day 12. Best of all, my innards seem to be almost back to normal today; I could almost cheer......🎉 I also got a cancellation on Look Good Feel Better this week after having been on the waiting list for April 2017. It was a great afternoon a bit of light relief from hospital visits and the goodie bag is quite as legendary as everyone says.

 

Regarding oncologists, where I go we see the oncologist in week 3 of every cycle to get medical sign off for the next. I then see the chemo nurse for bloods, vitals etc. to check cell levels the day before the chemo. This will change for the T cycles as you see the nurse earlier in order to start steroids a couple of days before the infusion.

 

A bit apprehensive but will definitely try the loratidine. I looked at the research on it and it is in clinical trials at the moment to see if it helps with the bone pains associated with the injections we get to promote cells growth, so it is clearly not a fad and being taken seriously by clinicians.

 

Sue O

Sus12
Member

Re: October 2016 starters

That's now on my shopping list :D.
Bet you're glad you've finished your last FEC Sue :). Will you on the T x3 now?
Glad you're feeling OK now Sel. That must have felt a serious relief!!
Nausea now abating a bit after 9 days (and nights 😞 ). Hoping I'll be up to doing more this next two weeks now until my last FEC on the 1st Dec.
Hair holding on just about with my new pixie cut but I'm not expecting it to stay as it's very thin and definitely a bit of a comb over job necessary :D.
Just a question...how often have people been seeing their oncologist? I saw him a bit before my treatment started but just see the consultant nurse now 1x each cycle when my bloods get done as well.
Hope everyone has a good weekend,
Hugs to all,
SueF xx
Truey
Member

Re: October 2016 starters

Hi Ladies,

 

Just thought I'd pass on my new discovery. I bought a snack called Fibre One 90 cal. It is high fibre, low calorie (as in the name) and the flavour I bought, lemon drizzle, I could actually taste!

 

It helped as a small bite to combat nausea but best of all - drum roll - it helped get the lactulose working faster!! I've now had my last FEC but for anyone still fighting the challenge of constipation due to ondansetron it is worth a look. Just keep up the fluids.........

 

Hope it might help someone. 🙂

 

Sue x

Sel84
Member

Re: October 2016 starters

Hi ladies,
Success! Although not at the doctor, he said to take more laxol so I didn't think he was much help, before I had the chance to do so things started to move more freely and I am now very satisfied. I felt like I had given birth and I felt so proud.I think I was impatient but when you are in so much pain and discomfort you want something to help straight away. Silly the things that now make us grateful. Will continue with the laxol to keep things moving.

Also wore my wig out for the first time, felt a bit self conscious but there weren't many people at the doctors and I wore a hat with it outside which made it less obvious.

I hope everyone has a nice weekend x
OldDawn63
Member

Re: October 2016 starters

Hi ladies, just popped in again from September Starters thread. As Sue H-S says, constipation is unfortunately a common SE of the FEC, and I had it at the beginning of all three cycles. Glycerine suppositories worked for me, but I can understand why some people might not want to try them as they are not pleasant to use. But if the usual remedies don't work and there has been no movement for more than 3-4 days, always seek further help from your oncology team or GP. Wishing you all the best, and hoping your SEs will subside soon.

Angywd
Member

Re: October 2016 starters

Hi everyone

havent been on for a while as my iPad died but now have a new one!

Sel, I suffered dreadful constipation with my first round of chemo.  I didn't have a good bowel habit before chemo so I knew I would struggle.  My stomach was so bloated, I dreaded trying to go to the toilet as it was excruciatingly painful and I was bleeding just trying to go...  After several days of no movement at all, my Doc gave me co-danthrusate which he described as 'industrial strength ' !!  I was already on 4 sachets of movicol a day with no effect.... It certainly did the job although I would advise you don't leave the house once you start taking it.... I had several accidents once it starting working but you don't need to take it once it has done the job of clearing things.  I just carry on with the movicol now and things are fine.  

Mary so sorry you're having a rough time but hope you feel better in time for your party, and I know what you mean about your evenings is only lasting til 8pm!! Funny isn't it, we now have the time for lie ins but I'm up anywhere between 4am and 6am every morning.  Don't get any sleep for the 1st week after each chemo but it's settling down a bit now thank goodness.  

Hairloss seems to have slowed a bit.  Had it cut earlier in the week and my hairdresser reckons I've lost 50% mostly thinning at the top and crown.  Did pop into my chemo unit this week and asked if I can still cold cap with it being so thin and she said yes, any bold patches they would cover with lint wadding if necessary.  

I called the support group "Someone like me" and they put me in touch with a lady who has similar personal circumstances to me and the same BC and treatment.  I wasn't sure I would be able to chat to a stranger but she called me last night and it's blown me away.  So many things and feelings we shared, can't believe I had so much in common with this lovely lady.  We have agreed to chat again next week.  I would definitely recommend it.

Hugs to everyone, so glad to be back on here as I've really missed being able to read and keep up with everyone's journeys

Angie

💞

Sus12
Member

Re: October 2016 starters

I'm on Odansetron as well at the moment for sickness and it is stated as an se of that. Normally I don't have any problems but did with my FEC 2 but then it could have been the Odansetron. Hopefully all the tips will help :).
But, definitely think if it continues to be a problem for you you should check with your doc.
Made me laugh that we can discuss anything on the forum but it's just as well 😄
Hugs,
SueF x
Sel84
Member

Re: October 2016 starters

Hi Sue,
I have my husband picking up some prunes and kiwi's on the way home, I heard they help too.
Perhaps it's not normal constipation I have. I have been able to go, my stools look soft and my stomach is fine but I am having trouble passing it. Some of it comes out but not all of it and so it ends up staying there or going back in and it is that which is beginning to feel uncomfortable.
X
Sue H-S
Community Champion

Re: October 2016 starters

Hi Sel84,

It seems that you have done everything you can for the moment - by all accounts it coud go the other way now...

Try and add fibre to your diet - especially bran - and perhaps some prune juice, too. Both should help.

Yes, it is uncomfortable, but it should sort itself out over the next day, I feel sure. The Senna tablets worked for me within 24 hrs. What gives you the feeling that 'stuff' remains? Are you feeling bloated/gurgly/ full in the stomach? 

It may be that constipation is perhaps not be the reason you are feeling uncomfortable. The lining of our guts and stomach can get affected by the chemo and it could be possible that this may be the reason for you feeling uncomfortable?

Sue x

Sel84
Member

Re: October 2016 starters

Thanks ladies.

I know who would have thought we'd be swapping tips on going to the toilet.

I have tried to drink lots, not as easy as it sounds, I have also been moving around, doing lunges. I finished my drugs on Monday so I don't think it is them causing the problem at the moment. I looked at another forum and one lady described it as crowning a baby and it then going back in! Each time I visit the bathroom I am there for about half an hour, so I am not rushing things along by any means. I had read constipation was a common side effect but hoped that as I was fine first time around I would be this time!
Truey
Member

Re: October 2016 starters

.Sorry, the predictive text took over! I used lactulose not lactose. The constipation is according to my chemo nurse a side effect of ondansetron.

Sue

suebond88
Member

Re: October 2016 starters

Hi Sel84

it's horrible having to deal with constipation on top of everything else.  I agree with SueF - I was told to drink a minimum of 2 litres of water per day - not as easy as it sounds - take gentle exercise and eat plenty of fruit and fibre.  The antiemetics don't help matters apparently.  If it's not one  thing it's another!

take care,

SueBxxx

Truey
Member

Re: October 2016 starters

Hi there,

 

Exactly the same happened to me. Cycle 1 was fine but in cycle 2 I struggled to get any action. And it hurt!

I know that Senna gripes me so I asked the pharmacist and she suggested lactose. It worked within a day or do and best of all the hard "bits" were no longer. Immediate softness and soreness easing.

 

I feel for you because this was the side effect that actually reduced me to tears with stomach discomfort, sore bum and exhausting toilet trips!!

 

Who knew we'd be discussing bowel movements with strangers.....just another weird aspect of chemo.....

 

Hope this helps. Take heart that once it resolved it got back to normal very quickly.

 

Sending you a hug. 💛

 

Sue x

 

 

 

 

 

 

Sus12
Member

Re: October 2016 starters

Hi Sel.
There are 2 different types of constipation - organic constipation when there has been a change in your body and this type of constipation should be seen by a doctor. The other type is functional constipation which is caused by not eating well, not drinking enough etc. Try drinking lots of water and walking around a lot and try and physically 'relax' and take your time on the loo. As long as you need! I had this the other day so I know how awful it feels but if it continues to be bad I think you might need to phone the on call doctor and explain your situation with the chemo etc.
SueF xx
Sel84
Member

Re: October 2016 starters

Hi everyone,
I would be very very grateful for advice on constipation. I had my 2nd cycle on Friday and have been struggling since. I was absolutely fine on my first cycle but not this time!

I have been able to go every day but I don't get everything out, I feel like half of it stays up there and I feel quite uncomfortable now. I phoned the number last night but feel like there isn't much that can help quickly. I took 2 senna tablets last night but was told they can take a few days to kick in. I have now taken some laxidol which I really hope will help. x
elisan
Member

Re: October 2016 starters

Thanks Sue, feel more positive knowing you have had no issues with injections. Wil let everyone know how it goes.

Thanks for your advice around the argon oil, I have some there that I bought ages ago and never used( story of my life when it comes to hair and beauty products lol). Will try it when I next wash my hair. 

Big hugs

Liz

 

Sus12
Member

Re: October 2016 starters

Hi Liz
I've had the injections and now on my second lot of 7 days after my second FEC on Thursday last week. I got told the same thing but haven't had any issues with the injections so you hopefully won't either :). Fingers crossed they work for you!
My hairdresser recommended argan oil when my hair got dry and to treat it very gently with Simple shampoo and conditioner or one with very natural ingredients.
Hugs,
SueF x
elisan
Member

Re: October 2016 starters

Hi all,

haven't posted for some time but have found reading everyone's experiences and stories supportive and informative. 

I should have had my second FEC on 15th but my neutraphils were still too low. Came as a surprise because I felt ok.

Felt pretty frustrated, I had my calendar all planned around my treatments and the times when I thought I would feel a bit better. Lesson learned, not committing to anything for next few months, it's just the way it is I suppose.

Anyway, on a positive note, side effects from 1st treatment were no where near as bad as I feared, and apart from down below haven't lost much hair yet although it does feel very dry. I realise this will probably change when I get my next treatment which will hopefully be next week. Got my wig yesterday so I am prepared to face the world.

I have to get injections to boost workings of bone marrow after next treatment which I am dreading as the nurse told me they might make me feel like "you've been kicked by a horse". Not what I want on top of everything but will need to roll with it and see what happens. Fingers crossed I keep lucky and side effects are minimal. 

Big hugs to everyone

liz xx

 

maryminder
Member

Re: October 2016 starters

Hi All

Thank you all for your lovely comments and best wishes, am slowly getting there, is it mad to want to be able to do normal things like the housework and shopping, hubby is doing his best bless him but it's not the same.

 

Skye, I had my second dose of EC on the 7/11 and this kicked in on the Friday night so 5 days later, I did reasonbly well after the first dose, nausea but no sickness, tired but still managed to get out most days if only to walk round the block, not sure where this came from but lets hope it's a one off and next time will be better.

 

I will certainly party SueB, my evenings tend to finish about 8pm at the moment so it may be a short but enjoyable one, 

 

Hugs Mary xx

fairycake2
Member

Re: October 2016 starters

Hello all, I haven't posted for a few days but i read your posts every day and am with you all on this journey we are taking. Maryminder so sorry to hear about the infection but hope you are on the mend now. I'm back in tomorrow for my second EC and starting to feel a bit nervous although i can't really complain as my side effects have not been too bad, nausea and fatigue for a few days but i could always manage to get out of bed and droop around a bit! My hair has not started shedding yet so I'll go with the cold cap again - can't wait....

suebond88
Member

Re: October 2016 starters

Hi everyone,

 

so so good to hear, Mary that it was good news for your sister, but sorry to hear that you were in hospital again -  oh,  and you just Party, Party Party on Saturday night!

i've been loosing weight too - about 4kg, but was also told today that my skin looked good!!  Bizarre, as I certainly don't feel that I look good!  Had my hair cut shorter this afternoon, really happy with it (am used to short hair), and made sure that my hairdresser was very gentle.

Such an awful thing to happen with your hair Jo, I wonder if it was because the coldcap didn't fit too well first time - I'm still intending on  persevering with the coldcap, although I am shedding, it is not noticeable to anyone but me and those who know me.  Really brave of you  girls shaving your head,  it takes nerve and ballsy confidence to carry it off and to go out in a wig - am hoping I won't need to, but you never know, and I hope I'll have the nerve to do it when the time comes.

have midcycle bloods tomorrow - ready for round 3!!

hugs to everyone.

SueBxxx

 

Skye
Member

Re: October 2016 starters

Hi Mary

 

So glad to hear that you're on the mend and that your bikini bod is on the way. I'm still working with my winter bod, so I'm a little bit envious! 😂😂

 

Fabulous news about your sister and a great relief for both of you. 

 

What cycle are you at - am I right in thinking that's you finished your secind FEC?  If so, how many days after?

 

Im on Day 16 of first FEC. Had my hair shaved last Tuesday and it's starting to come out in bits now. No real bald patches yet, just a wee loss at the sides, but you have to look closely. I've been wearing my wig since last week to get used to it. 

 

Have a fabulous day on Saturday - don't mention the C word - and kick up you heels and party!!!!

 

Lots of love

 

Skye xxx

 

Sus12
Member

Re: October 2016 starters

Mary that's such good news about your sister :). Hope you're better very soon and you get to have a good day on Sat for your birthday 🙂
Hugs,
SueF xx
maryminder
Member

Re: October 2016 starters

Hi all,

It's been a crazy few days was admitted back into hospital with suspected pneumonia, was discharged home yesterday evening, downgraded to severe chest infection, enough tablets to sink a battleship and 6lb in weight loss lighter, and this is only the second dose but hey that beach ready bikini body is still a possibilty for next summer Smiley Wink

 

It's been nice reading everyones comments  and hearing how you are all doing, I have an appointment next week with hairdresser to take off whats left of my hair and have decided to try another wig as well.

 

Today I recieved the best news possible, my sisters results have all come back clear. a huge sigh of relief all round would have hated the thought of her having to go through this as well.

 

It's my 58th birthday on Saturday and the family keep asking what I would like to do, honest answer to go back before BC reared it's ugly head but thats not possible so have asked them for the whole day to be free of any mention of BC and to just.spend it with them. 

 

Hugs and Best Wishes

Mary xx

Sus12
Member

Re: October 2016 starters

Hi Jo.
Sorry to hear youv'e had a tough time. I hope things get better for you. I've had the same problems with severe sickness but not actually being sick as you. My hair wasn't too bad (shoulder length) but then just before my 2nd FEC it came out a lot and matted like yours with my hairbrush even though I was gentle with it. I lost so much suddenly last Weds and then with the additional continual gradual slow loss I've had they wouldn't do the next cold cap as they were concerned about freeze burns and damaging my scalp more permanently. I was upset but then I've just been to get my hair cut in a pixie cut this morning (a 'my new hair' trained guy) who was lovely and said probably the best not to have had the cold cap with so little hair and that a shave / very close clip would be too brutal for me he felt. I'm happy with what he did even though I've never looked good with short hair as I got it cut once when I was a student and regretted it immediately! It took a very long time to grow! As I'm in my (very very lol) late fifties it's harder to cope with not being able to hide behind my hair! I had my wig fitting today as well with him and although it feels very weird and not me quite he did a good job considering its a wig :). Yesterday and today I've been out with what's left of my hair with almost bald patches on top and realised that despite not wanting a wig I had no choice now as I felt worse and more self conscious with my patchy hair. Not the best way to instill confidence in myself. I feel very lucky though that they picked my bc up when they did through a routine mammigram and despite having surgery and lymph nodes removed I want to get on with getting through my treatment, being confident enough to continue to go out and do things rather than be shackled to the house and feel as normal as possible. The wig is for me the only thing that would have helped but we all deal with things in different ways and I admire those who can be confident without 🙂
Lots of hugs,
SueF xx
7oanne
Member

Re: October 2016 starters

Hi All

 

Just thought I'd let you know how I've been doing.

 

I'm now on day 13 of my second cycle of fec-t and things haven't been too great.

 

The first cycle wasn't as bad as I was expecting as I was so anxious and frightened beforehand and even though I was sick for the first few days, it was bearable. I had the PICC Line put in a few days before the first treatment and decided to try the cold cap as well.

 

The second cycle so far has been a different case though. The treatment timed in exactly with my monthlies and I suffer badly anyway so this was a double whammy - I was in pain, bedridden, tired and feeling sick and nauseous for over a week. (I wasn't actually sick as my oncologist prescribed me with Emend which stopped that).

 

I was starting to feel better last Saturday so I decided to wash my hair (strands have constantly been falling out on my head for over a week and that's with the cold cap). While I was washing my hair I felt it tighten up and matt together. My hubby tried for a couple of hours to comb it out but he couldn't so I phoned my local hairdresser. She told me to pop down to see her straight away and she would sort it out. When she saw it she said that she had never seen anything like it before and tried on and off for 3-4 hours (between her other clients). Eventually she said that it was basically fused together and the best thing would be to shave it all off.😱   So now my hair has gone!   Well it's actually a grade 4 but there is a monk like bald patch on the top. (My hubby and son both have longer hair than me now!) 💇  

I'm getting used to my new style now (not as bad as I thought it would be).  At least it's woolly hat weather and you've got to laugh!

 

Hope you're all doing well and that some of you have success with the cold cap (I think my first cold cap didn't fit properly)

Love to you all

Jo xx😘

 

Lisa46
Member

Re: October 2016 starters

Hello Skye, thanks for your reply. I am doing really well and feeling totally different to the first time. I'm told each treatment can make you feel different but to avoid sickness this time I had extra steroids. My doses were 4 day 1, 4 day 2, 2 day 3, 2 day 4 and then 1 on day 5. I'm holding on to this that has made the difference. I am feeling tired but that is to be expected. I cold capped twice but last week it was painful as my hair must have thinned more than I thought. You are very courageous getting yours shaved without the support of your hubby but I understand why you didn't want him to see. I'm getting fed up with combing my hair over the bath and seeing it coming away. I will have to make a decision soon. Good thing for us that winter is approaching and we can get the Woolley hats out. I wish you well Skye, good luck with your next treatment. Let me know how it goes.
Skye
Member

Re: October 2016 starters

Hi Everyone

 

I got my hair shaved last Tuesday (8/11) - I went myself, although hubby was meant to go with me, I felt he would be upset seeing me be upset, so decided to go it alone.  It wasn't too bad and I did have a wee laugh now and again.  It was done at the drop in centre at the hospital (the hairdresser was from Maggies' Centre).  

 

One think I'm experiencing is pain from the wig, where the band is - is this normal and will it disappear once I get used to it.  Was going to give it a week (Tomorrow) before I went back and asked for it to be adjusted.

 

Otherwise, I'm feeling good - don't really like looking at myself in the mirror when I put the wig on - think that's because I can pretend there's nothing wrong with me, but seeing the shaved head makes me face up to the fact that I'm getting treatment.

 

Big hugs to everyone who's having a hard time - we will all get through this.

 

Much luv

 

 

Skye xxx

Skye
Member

Re: October 2016 starters

Hi Lisa46

 

How did you get on with your 2nd FEC - hope it wasn't too bad for you.

 

No, I didn't cold cap - I had my hair shaved on Tuesday 8/11 as I thought it would be better than having clumps come out.  So far, I've still got it but I'm expecting to go before my 2nd FEC on 21/11 or soon after. When you use the cold cap, you have to do it from the start, it can't be used midway through treatment.

 

The wig is fabulous.

 

Let me know how you are getting on.

 

Cheers!

 

Skye xxx

suebond88
Member

Re: October 2016 starters

Spoiler
 

Good Morning everyone,

managed to go Christmas shopping yesterday - tired when I got home, but in a good way.  My nausea is better (!) this cycle - they stopped Metoclopramide because it upset me so much, and am now on a combination of Domperidone and Ondansetron - both to take on an as need basis.  I am still taking them(am on day 6 of 2nd cycle)  but am much, much better.  I'm also on Omeprazole to help with heartburn and reflux, so am eating reasonably. Seems the hardest thing to do is to find the combination that suits us best.....we do not need to suffer.

after having lost half my eyelashes on day 2, the rest are hanging on in there 🙄, as are my eyebrows which are fair and sparse at the best of times.  Hair is shedding, but not too badly - I have a lot of fair, fine hair, so can deal with it at the moment, but do have an appointment to have it cut on Wednesday.

hope everyone has a good few days.

SueBxx

 

Sus12
Member

Re: October 2016 starters

Hi all. Hope everyone had a good weekend.
Am on Domperidone again after changing from Metoclopramide on FEC 1 when my sickness lasted 10 days last time. Don't know if the Domperidone helped of if my body just got to the point of coping with the chemo drugs or getting rid of it all. Still very very nauseous and it's keeping me awake at night so haven't slept properly since Weds night. Can't eat much. Has anyone tried anti sickness injections? For those who weren't so good last week hope everyone has a better week this week.
Hugs to all,
SueF xx
livvy
Member

Re: October 2016 starters

Hi sue H-S,
yes I'm having the injections thankfully otherwise i dread to think what would be happening if I wasn't, I know when a chest infection is brewing so im able to get treatment quickly before it gets any worse,I do suffer with them at this time of year anyway but I was hoping to get through chemo before they started,but never mind Il get through it as we all do with these challenges that keep getting thrown at us! I hope your recovering well after your treatment and starting to get your life back on track! Big hugs to everyone else that's having a hard time. XX
Sue H-S
Community Champion

Re: October 2016 starters

Hi livvy,

sorry to read that you are having such challenges. Are you on Gcsf injections? It not if may be well worth asking, whether they can be prescribed for you. They may just help you get through this without recurring chest infections.

Hope you fare better the next time.

Hugs

Sue xx

Lisa46
Member

Re: October 2016 starters

Had my 2nd FEC on Thursday and feel much better than after the 1st treatment. My oncologist suggested weening off the steroids so today is my last one and touch wood no sickness. I cold capped again but my hair is coming away fast now so that may be the last time I try it. All hair is different, mine is very fine, so don't be put off by my story if you're still trying. Lots of luck to everyone for a good week ahead. Sorry to those that have been going to emergency clinics, get well soon.
maryminder
Member

Re: October 2016 starters

Hi All

I spent 4 hours in emergency at my local hospital yesterday afternoon as my temp was high and feeling very unwell, thorough check up, bloods all ok turns out it's viral, cannot praise them enough, so happy that I was able to spend the night at home and not in hospital.

PJ and TV day today and hopefully will feel a lot better tomorrow.

Hugs and Best Wishes

Mary xx

 

livvy
Member

Re: October 2016 starters

Hi everyone,
Well I'm 10 days post second fec and thing haven't been great.i ended up spending the night in hospital on Thursday due to a chest infection I suffer from lung problems anyway, but I just cant bare the thought of this happening after every treatment exactly the same thing happened after my first one too, currently on antibiotics & steroids and seeing my onc on Monday going to ask if there's any possibility of having medication as a precaution after my chemo to help prevent this happening again.I'm just so miserable with it all having chemo is bad enough for us ladies without having other problems to deal with,have too say got my meds right for nausea and indigestion this time so that's a bonus! Hope everyone's coping aswell as can be expected hugs to you all. XX
Sus12
Member

Re: October 2016 starters

Hope you're feeling better today Mary
Hugs,
SueF xx