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November 2016 Starters

capelmum52
Member

Re: November 2016 Starters

Hi Ladies
How are you all doing ? Hopefully good.
I have chemo 3 on Wednesday, where ate the rest of you now on your chemo ? Has anyone started T yet ? I have nesm tracking the Aigust and September starters and T's side effects looks to be quite different to those of FEC.
Hope you are all well
Love Fiona x
Seagull1
Member

Re: November 2016 Starters

Hi OldDawn
Thanks for the helpful info re hair loss. I ordered a half weave back (effectively a fringe you wear at the back of your head) from Heathers Hair. I've never had a normal fringe so thought this would work better for me. I wear it under a woolly hat when I walk the dog or go to watch my sons play footy. It's comfier & cooler than my wig. I only wear the wig when I'm going out as I find it quite hot & uncomfy after a while. I don't like to wear the hats/scarves when I'm out as I think it just brings attention to myself & I look like a cancer patient, which personally I don't like. Though at home I just wear sleep hats which I got on eBay for £3.65 each.


Auntyjulie
Member

Re: November 2016 Starters

Hi old dawn you for your lovely post. Have not been on here for a few weeks just life being busy! Had my 3rd fec treatment last Friday, this time they gave me an anti sickness drug to last for 5 days and it's done really well I've not really felt any sickness at all which is amazing and has really picked me up! I have been scheduled for the new pertuzumab drug which is great news due to me being her2 positive post T chemo treatment, herceptin and Mastectomy. I will be taking steroids before my next chemo which is the first T on the 30th of December. How are you all doing? Feel like I've not been able to chat for ages. you are all in my thoughts xx
OldDawn63
Member

Re: November 2016 Starters

Hi November Starters - I am a September Starter (FEC-T plus targeted biological therapy because I'm HER2+) and have just had my 6th and final infusion (hooray!). I noticed the recent posts regarding hair loss. I'm afraid that as may have been mentioned before by me and other Members, everyone reacts differently to the chemotherapy, so it is pure luck whether you lose all your hair or only some, and if the latter, how much (cold-capping notwithstanding).

 

I can share my experience as an example of what can happen, but I'm afraid you can't assume the same will necessarily happen to you. I didn't cold cap and lost about 95% of my head hair towards the end of the first FEC cycle. A lot of my body hair also went during the next two FEC cycles, as expected. I was warned I would probably lose the rest on T, but I haven't so far, except for a bit more of my eyebrows and eyelashes during the first T cycle.

 

But they're still hanging on, if somewhat patchy and sparse (I use a L'Oreal Brow Artist kit to make the most of what's left of my eyebrows, because it is easy to apply, works really well in a situation where you still have some eyebrows left - and I think I'm worth it...!). In fact, some of my head hair and body hair now appears to be growing back, particularly on my legs where I'd rather it didn't bother! I suppose there's still time for what's left to all drop out over the course of my final cycle (Merry Christmas to me!) but I'm optimistic that it won't, having hung on thus far.

 

Anyone affected by significant hair loss who hasn't yet got a wig, and feels self-conscious about going out could consider getting a hat fringe, and/ or some good quality specialist headwear (e.g. hats and turbans), or a hairpiece, if you still have most of your hair but it is patchy or thin. These products are available from various online sources, though you'll have to move fast if you want them by Christmas.

 

Hat Fringes

 

Heather's Hair is a charity that supplies free human hair fringes, but they can also be purchased from specialist retailers. I have a 'cheap and cheerful' fringe from Bohemia Headwear (cost £10.00 for fringe, £1.80 for headband + postage) - and they are very quick at turning round orders. More expensive ones are available from Hats 4 Heads (though another September Starter was disappointed with hers), Simply Wigs (Gisela Meyer) and Suburban Turban.

 

Specialist Headwear - Hats, Turbans and Sleep Caps

 

Suburban Turban is the only UK based online retailer I have come across that supplies really attractive headwear specially designed for people affected by hair loss, but it is not cheap, prices start at around £35. The next best option, and cheaper (prices start at around £12.00), is probably Christine Headwear (I have some of their turbans), available from Trendco, Simply Wigs and Wigs Boutique.

 

There is also an American online retailer (Headcovers Unlimited) which supplies fringes and a much wider range of attractive headgear than Suburban Turban, as well as wigs and other products for hair loss, but they only accept payment in dollars (at current exchange rates - ouch!), you may have to pay import duties on top of this and the postage, and you're also very unlikely to receive your order by Christmas even if you order right now.

 

Sleep caps are also a good idea to keep your head warm in bed, to wear under scarves and hats to bulk them out and prevent irritation, and also to reduce the mess from hair shedding. They come in various designs. You can get these very quickly and conveniently by ordering online from retailers such as Bohemia Headwear or Annabandana, provided you don't order other bulkier items at the same time, because sleep caps are usually thin enough to fit inside an envelope that can be sent through the normal post. They're not expensive, but they're also not very thick, so you may find that like me you need to wear two or three layers in bed this time of year.

 

Hairpieces and Wigs

 

If you have lost most of your hair and want a wig, or want a hairpiece to cover bald or thin patches, it is best to obtain it through a hairdresser trained to fit and trim it to suit you, e.g. under the 'My New Hair' (Trevor Sorbie) or 'Strength in Style' (Toni and Guy) schemes, to avoid disappointment. Realistically, you probably won't manage to organise it this side of Christmas.

 

Expect to pay anything between £120-200 for a good quality pre-styled synthetic wig (it's not worth getting a human hair wig, which is a LOT more expensive). Plus you will also need a couple of wig liners, a wig stand, a detangling comb (be VERY careful when using, so as not to damage the cap), and special shampoo and conditioner to keep it clean. You won't need to wash it that often, unless you wear it a lot (your hairdresser will advise, there should also be instructions with the wig).

 

Sorry for lengthy rambling post, but hope this helps. [N.B. I edited this post on 28.12.16 to add breaks and headings to make it easier to read, and to add a bit more information in places]

Dragonfly
Member

Re: November 2016 Starters

Hi.  I had my second round of FEC today. I did cold cap for both and have probably lost about half of my head hair...it is now very thin but not too patchy. The kids are helping spot bald patches and have recommended a comb-over! I still seem to have most of the hair on my body....although armpit hair is a lot more sparse. I am feeling pretty grotty this evening but have been given Emend so am hoping I won't throw up.  I'm not sure whether to go full GI Jane now and shave off what is left on my head or cling on to what I have in the hope that the cold capping may help the hair to come back stronger?? I 'went public' with a chemo cap to do a couple of bits in town and, whilst I'm sure it's paranoia, thought people were looking at me.  I think for the first time since the diagnosis I looked 'sick'. I wish I could be one of those women who rock the bald head / scarf look and look amazing. I just look like a cancer patient. But I'm sure I'll get used to it....I think it's a confidence thing.  Hope you are all doing as well as possible and are ready to enjoy Christmas as much as possible. Xxx

 

 

capelmum52
Member

Re: November 2016 Starters

Hi Snail888,

Yes it us a bit like sun burn to look at but no pain and not itchy and it's about 8 weeks since my op, so sound like it could be that . Thank you.
Regarding hair, day 14 of first chemo lost about 70% of public hair and rest is still remaining now. Still have a little hair on arms but none on legs or under arms. I lost about 60% of the hair in my head between days 18 and 21 of firs chemo and initial about 75% of it has now gone. Ironically the tough ones that are still there are the grey ones !! I still have eyebrow and eyelashes thankfully. Just approaching day 18 again so wondering if another shedding session Nat be due 😳.
Sue H-S
Community Champion

Re: November 2016 Starters

Hi Skye,

it is suggested to wait until your chemo treatment is complete. As this is a dietary supplement, no scientifically based studies have been done to find out, whether it is safe to take during chemo. 

I always rather err on the side of caution. I was on FEC all the way through.

Yes, the combination of of supplements I take is helping me. My energy levels, skin, etc are improving and holding up well. I am on letrozole now - so no more estrogen to support the skin, hair, etc. However, it might be an individual thing. I researched, in depth, how I can support my adrenal glands - as they often are at the base of severe fatigue. And the comination I take was recommended for that support. I still have some hot flushes, but they are very manageable and only 2-3 per day. Considering I went cold turkey after having been on HRT - that is pretty good. It is difficult to say whether the supplements have helped, as I started taking them the moment I came off HRT, before my op and chemo.

Of course, I still have bad hours and not so good days (Chemo finished Sept 1/rads Oct 26) - but the outer visible signs, such as hair are now ok. I have enough hair on my head, not to look like a chemo patient anymore. So that did not take long. I even had my first haircut!

Hugs

Sue x

 

Snail888
Member

Re: November 2016 Starters

Good news jo jo that you've been out and about. I'm off for a walk having cleared out my kitchen cupboards today!
I have a question, has anyone not lost hair? My head is doing ok but I am cold capping but I still have hair elsewhere and lots of people say fec gets rid of it all?
Take care x
JoJo45
Member

Re: November 2016 Starters

Hi Ladies, not been on for a while, forgot my passwords, very forgetful at the moment, ?? Chemo brains.  

Was quite sick after round 2 and out of it for the whole 7 days this time.  But all back to normal again now.  I managed the Christmas party, was lovely to catch up with all the gang, and all the GPs couldn't believe how well I looked (oops and there's me off sick) amazing what makeup and a wig can do, oh and the dark.  Was nice to feel normal again, even managed wine and a bit of dancing 💃.  And didn't get in until after midnight 😳.  

Round three next Wednesday, so Christmas will be a quite one, sleeping on the sofa watching TV.  

Hope you are all doing well. Xx 

Skye
Member

Re: November 2016 Starters

Hi Sue H-S

 

Saw your post re CO-Q10 with another member Bibby44 - it was back in July.  I've sent her a msg but I dont know if she'll respond.

 

Did you find this helped you?  I noted that you said you had to come off because it was interfering with your Chemo.  I'm due to start Herceptin and 4th Chemo (which is Taxotere) on 4/1/17 and wonder if I should start on CQ-Q10 before that.

 

Thanks for any help/info.

 

Skye x

Snail888
Member

Re: November 2016 Starters

When did you have your op? I had red sunburnt like patches appear about 6 weeks after op. Seems it may be new blood vessels forming in the breast tissue. Mine started before chemo and had since gone down. I basically researched breast reduction after effects and it does seem a common one. As does itching. I had a lumpectomy one side and reduction the other. Both had the red patches xx
Seagull1
Member

Re: November 2016 Starters

Morning
Why is it when I don't have to get up I'm waking at 5-6am every morning?! When I'm working I'm never awake this time. Ggggrrr. Glad to hear you're not all too bad. Chemo certainly has some weird side effects doesn't it & we all seem to get some the same but some different.
Poor you Snail888 with your daughter having flu. What a household! Me & hubby had the flu jab but they wouldn't give it to my kids (13&11) as they said they were less likely to get it at that age anyway. Have you had the jab as you can still have it? I had it between cycle 1&2.
Capelmum I know what you mean about the stomach cramps. It's like there's toxic waste in your gut!
xx
capelmum52
Member

Re: November 2016 Starters

Morning ladies,
Currently day 15 round 3. Feeling pretty good at the moment and been working since last Friday.
Regarding the achy wrists, I have had it but again only on the side where the canula was fitted. If it's both sides I would check with you health care team.
Seagull, sounds like you have had a rough few days. I too have had the mucositis this time. It was horrible and had me either on the loo or having stomach cramps day and night for about 5 days. I did not have this on my first cycle so was a bit shocked when it started this time. The best way I could describe it is like your entire digestive system has turned in to jelly from end to end. Yuck !
I have had a red patch about 10cms in diameter appear on my breast next to my wide excision wound. No swelling or pain like it was before when it was infected. BCN thinks it might be chemo related but ONC nurse says not, has anyone else had this ! Slightly warm to the touch and not swollen or itch, just red as if I had had a hot water bottle on it for too long. Please let me know if this sound familiar to any of you ?
Snail888
Member

Re: November 2016 Starters

I had pain in the wrist on the side of the last dose. Also I have some osteoporosis arthritis in my knee which has started to ache both rounds while on gcsf. I wonder if they are all related x
Djroo
Member

Re: November 2016 Starters

Im due to have found 3 of EC this week. I have had slight pain/ache in my wrists this week. Has anyone else had this? Is it another side effect? 

Snail888
Member

Re: November 2016 Starters

Hi seagull
I'm emerging from my chemo pit but having to avoid my daughter who has flu. Wanted to get out for a walk bit the weather is shocking so spending time internet shopping and learning to knit.
Aside from aching bones in my legs and blasted indegestion I'm doing ok.
Vase line or tea tree around the nose area will help stop bugs at the party. Have fun! X
Seagull1
Member

Re: November 2016 Starters

Hi again all.

hope you're all doing ok. Everyone's a tad quiet. I've been in my chemo pit (as I call it) for the last week after chemo 3 last Tuesday. I'm slowly energing & feeling a bit better by the day. I seem to feel drowsy from the moment the drugs go in & don't really open my eyes again properly until day 4. I don't know if it's the unusual concoction I'm on or just me. I get nauseous but thanks to the anti sickness tablets don't throw up, then I develop oral & gastrointestinal mucositis. Am hoping to pop into my work Xmas do Thursday night but am now paranoid about picking up any bugs as I really don't want to be in hospital for xmas. 

Take care all. 

Sue H-S
Community Champion

Re: November 2016 Starters

Hi again Snail888

glad that you have no itching. I had 8 injections post every chemo. I was fine until post chemo 3, after chemo 4 swelling started and slight itching. Chemo 5 it became a lot worse and they were stopped for chemo 6, as in danger of anaphalactic shock due to the cumulative build of the allergic reaction.

Hence I reacted so quickly when reading your post. 

I am sad to hear that your BCN is not helping much.

Although mine was based at the Breast Care Centre and not involved on a regular basis, once chemo started. She was always there for me to phone and get advice, discuss my concerns with the treatment team on my behalf and then get back to me with relevant answers. This is also the general protocol - most are funded by Macmillan and a named BCN should be there for you to help you through all of your treatment. A BCN should be the central contact point to your multidisciplinary treatment team.

Please take the swelling seriously and get answers as soon as you possibly can.

Hugs

Sue x

Snail888
Member

Re: November 2016 Starters

No itching sue at all. I am going to take it up with onc. Not found bcn at all helpful they only seem to want to deal with post op issues and we're sketchy at that. Our local hospitals are slammed but if it's bad again later I'm going to make a few calls. I think 7 days may be too many. Mind you with all the diseases going round it may just be worth it!
Sue H-S
Community Champion

Re: November 2016 Starters

Hi Snail888

Are they Gcsf injections? If they are - please call your chemo team and tell them and ask for their advice. Also put a call into your breast care nurse to get a message to the oncologist - whichever way it may work in your area 

The bone pain can happen, but the swelling could herald an allergic reaction. Do you experience any itching anywhere, however slight, that you did not have before?

It needs to be checked out urgently.

Please let me know. My allergic reaction to Gcsf, which is relatively rare, developed over time and I had to stop them. Sometimes the allergic reaction can be cumulative. 

Hugs

Sue x

 

 

 

Snail888
Member

Re: November 2016 Starters

How we doing? Injections are causing me jip with swelling and pains in bones but only for 4 more shots. Done some wrapping which is cheery 🙂 xx
capelmum52
Member

Re: November 2016 Starters

Hi Snail888,
I am sorry you are struggling particularly with sleeping, I think you are right, it is the steroids. My first week of each cycle comprises if lots of steroids and I too find it incredibly difficult to sleep then. Have you tried camomile tea ? It definitely helps me. Also my ONC nurse suggested some excercise before bed, nothing too strenuous, even just a bit of hoovering just to take the edge off if it a bit. I have used a stepper in the evening and that has also helped. What times of day do you have to take your steroids ? Mine were at breakfast and lunch and again she said to take as soon as I get up say 7am and then the lunchtime one at no later than 12 so that the effect has minimised by bedtime. Obviously check these with you ONC nurse but following these boys if advice I have slept far better this cycle than in my first cycle,
The surgical mask is a good idea, I have to go to a Panto next week so might borrow that idea as I can't check with them all in advance if they are healthy ! Thankfully last nights one they all called me in advance to confirm all were well. It was a good night out and such fun to get out, left Hairy McClarey at home and just wore a Christmas hat , mentally so much more comfortable and I felt a lot less self conscious. I forgot to ask you how are you doing on the hair front ?
Love to you and all of the other ladies on here. Take care X
Fiona xxxx
Snail888
Member

Re: November 2016 Starters

Hairy mclary that did may me chuckle Fiona. I'm not sure what's going on with the hair I permanently were a sleep cap and resolutely refuse to wash it more than once a week. We will see today then! I thought in was feeling ok but couldn't sleep at all last night and wiped out with a headache today. I think it's the injections and steroids. Thankfully no steroids now so 1 less thing to cope with. Glad to hear tummy troubles are clearing up. Enjoy your time out. I have worn a surgical mask everywhere! Including my daughters play last week. Glad I did since the school shut monday with a virulent staring of noro!
Will venture out for a secluded walk today to try and turn my body clock round.
Hope everyone else.is.coping with rounds 1 2 or 3
Yasmine x
capelmum52
Member

Re: November 2016 Starters

Hi Ladies,
Just approaching half way through 2nd chemo (FEC) so thankfully, I do not have to do the injection bit, I am in awe of you that have to do it, I know I would definitely not be able too. As per my last round days 4 to 8 were horrible, mostly stuck on the loo both day and night and this time with stomach cramps and mucotisis through my entire digestive system (sorry probably TMI !) lack of sleep as well due to the above so like a zombie most of the time. But today I felt much better enough to wear "hairy McClarey" (hubby's new nickname for my wig) out to Tesco and back, half way round realised it had ridden up but about 2cms and was precariously balance on my head ! Really worried about this as due to return to work tomorrow and convinced it is going to develop a mind of its own and desert me in a client appointment 😳. Seriously considering what my daughter affectionately calls 'tit tape' ! Any other suggestions gratefully appreciated ......
We have the office Christmas party tomorrow, so far none of them has any colds, man flu etc so planning to put in an appearance but to escape at the earliest possible convenience.
I hope you are all managing to cope with the chemo by whatever means necessary and remember my thoughts are with you X
Take care X
Love Fiona
LuckyStew
Member

Re: November 2016 Starters

Hi Snail888
Hope you are still feeling ok. I had my second lot today too and also absolutely boiling!!! Lol the joys of chemo!! I'm going to attempt own injection tomorrow my mum did it last time!!! I'm such a baby!! Xx
Snail888
Member

Re: November 2016 Starters

Hello ladies. Hope all ok you've all been very quiet. Managed to get out of best today. First of the dreaded stomach injections. I don't feel them but get all nervous which makes my hands shake! Anyone else got some tips? X
Snail888
Member

Re: November 2016 Starters

Ate beetroot crisps at 5pm yesterday. Had the shock of my life when I went for a wee. Panicked! They deep breaths bit of go ogling and plenty of water. Phew. Avoid beetroot and cherries!
Snail888
Member

Re: November 2016 Starters

Hey everyone. How are you jackspratt? Hope.picc line got sorted. Got the hot flushes today. Cheers feel sunburn so covered in aloe and lying on my chillow. Hugs to everyone x
Snail888
Member

Re: November 2016 Starters

Round 2 done. Managed 110 minutes after epirubicin in my cold cap today. Not the 120 I was going for but still. Off to bed now for a couple of days. Good luck to everyone. Big hugs xx
capelmum52
Member

Re: November 2016 Starters

Oh Jacksprat
Sorry to hear about your PICC line. I have not had to have one yet so have no experience, but would reintegrate what has been said and watch your tmperature and anything else that seems unusual. When I had an infection in my breast wound my temperature remained normal even though yells fluid was flowing out if so don't hesitate to call rum if you are concerned. I was given an extra dose of antibiotics that appear to have done the trick and all now looks good.
Take care of yourself X
Fiona x
Snail888
Member

Re: November 2016 Starters

Oh jackspratt that sounds stressful. If they were very worried they wpd have taken you in today surely. Keep.an eye.on your temlerature though and I hope it does get sorted xx
jacksprat2708
Member

Re: November 2016 Starters

ok. So as i said this morning I had a problem with my PICC Line last night. District  Nurse came and looked under dressing and the whole line has come out !!!!!WTF no idea how it's happened , have not been doing weight lifting or over stretching... but the line has come back on it's self and come out completely!. DN said she'd never seen that before !

 

So obvs are all worrying about infection. I've got new dressing over arm entry and am to call my hospital in the morning !! Has this ever happened to anyone else ?

 

Not too much of a worry as next Chemo not till 15 th but of course it means i've got to go through the whole bloody line fitting procedure again !!! and really really hoping no infection has occurred !Man Sad

 

oh well... just keep on keeping on my lovelies x

capelmum52
Member

Re: November 2016 Starters

Why is it they suddenly taste so good ??
Seagull1
Member

Re: November 2016 Starters

 

Hi all

Hope you're not having too bad a weekend. I'm getting very apprehensive now as due chemo 3 on Tuesday & I felt so rotten from the moment the drugs went in last time.

Weisehai5 I'm 43 & a few of us seem to be around the 40 mark. If you're on Facebook there's a page called Younger Breast Cancer Network (UK) you might want to join.

I'm also on Pertuzumab & Tratuzumab for a year along with Docetaxal & Cyclophosphamide. You're the first person I've come across (other than myself) on P&T. Think we're quite a rare group! 

Had the Look Good Feel Better workshop Tuesday. It was really good & got some fab goodies. Strange sitting in a room full of bald women! 

Take care all. xxxx

Sue H-S
Community Champion

Re: November 2016 Starters

Hi ladies,

Lurking in the background, lol -  it is so great to see how you are starting to support each other!

For the younger ladies you might find some others like you on this part of the forum -

https://forum.breastcancercare.org.uk/t5/Younger-women-and-families/bd-p/4449

I hope you do, however, although we all are not necessarily of a similar age, as we move through this journey -the thoughts, concerns and feelings are very similar - which is why the monthly chemo threads are of such great support for many. 

Hugs

Sue xx

LuckyStew
Member

Re: November 2016 Starters

I don't know what I've done here... posting twice!!! I'm a divvy!!! Lol x
LuckyStew
Member

Re: November 2016 Starters

Hi!! Yeah I'm due mine next Thursday!! Just want to get them done and out the way!! Haha! Hope you are doing ok? X
LuckyStew
Member

Re: November 2016 Starters

Hi ladies
Weisehai5 I'm 36 and don't know anyone else so can 100% understand what you mean. Although we are in different stuff I started in17th November so again similar to you! Hope you are doing ok xxx

I wondered if anyone knew about hair shedding on cold cap. Mine is starting to come out more everyday now. I just wondered if canyons knew if there is a period of shedding which then stops are will it just shed throughout now?? It's prob a silly question but the 'not knowing' element to all this drives me crazy!!!! Xxxx
Snail888
Member

Re: November 2016 Starters

Welcome. I'm 44 with a 12 year old and yes it is a shock. Some days I think it's all some sort of weird dream/nightmare... at least we can take comfort in each other on here and know we are not alone xx
jacksprat2708
Member

Re: November 2016 Starters

Yes fish fingers a main staple in this house too at the moment! Also enjoying plain tagliatelle with knob of butter and black pepper !!!!! Also frozen pineapple to suck on is helping with sore mouth . It's like being pregnant again with regards to food cravings !!!😳
pernapus
Member

Re: November 2016 Starters

Hi all. Sorry you are on this thread but nice to have you on here Weisehai5, i'm 39 too. I have two little kids (4 and 5) and probably like tou this was a massive shock....i dont know anyone our age either and i feel very lonely dealing with this. But this wont last forever :-). We're on different drugs bit a similar stage (i have my 3rd round on friday next week).

This thread has been great and i'm very grateful for the information and advice i've found here 🙂

Thanks everyone xx
Snail888
Member

Re: November 2016 Starters

Fish fingers have become my staple diet ! - anyone else?
capelmum52
Member

Re: November 2016 Starters

Welcome to weisehai5, sorry to have you with us but happy to help you through this journey. It can seem like a bit if a rollercoaster at times but we are l in it together which can only help to ease it a little. 

Your treatment seems to be very different to mine so cannot really impart anything useful on that front, but happy to be a shoulder to cry on or someone to just cheer you up when you need it. 39 is so young to be going through this, hopefully you have a supporting family around you as this will help. Good luck with you treatment. X 

Jacksprat, good to hear from you, I am now day 5 2nd FEC and running enough had a ridiculously emotional day 4, son came home from uni and it was all I could do to stop myself from welling up and crying, which is not like me. Need to get a grip today. Nausea and heart burn and general tiredness are the order of the day for the last 3 days so looks to be a repeat of the last FEC so far. Yesterday had that same craving as last time for a fish finger samdwich, th is time hubby prepared and already had them in the freezer. No heartburn with those babies!! I now have the omeprazol but not finding them very effective with the heart burn .

What is the situation with your Marrrow bone bun, has it spread to there too? Buying the wig early is a good move. I was in denial about my hair and having g thought that the cold capping would help was devastated when if started to fall out on day 18 first FEC. It is now shaved very short as was locking the shower and meant I was hovering it up all the time. I look like a prisoner of war ! Got the wig but not ventured out in it yet, mostly wearing brightly coloured beanies from Milletts which are lovely and warm, especially at night when my head gets cold. Good luck with you treatment. X

Roll on day 9 and relative normality, 

 

 

capelmum52
Member

Re: November 2016 Starters

Welcome to weisehai5, sorry to have you with us but happy to help you through this journey. It can seem like a bit if a rollercoaster at times but we are l in it together which can only help to ease it a little. 

Your treatment seems to be very different to mine so cannot really impart anything useful on that front, but happy to be a shoulder to cry on or someone to just cheer you up when you need it. 39 is so young to be going through this, hopefully you have a supporting family around you as this will help. Buying the wig early is a good move. I was in denial about my hair and having g thought that the cold capping would help was devastated when if started to fall out on day 18 first FEC. It is now shaved very short as was locking the shower and meant I was hovering it up all the time. I look like a prisoner of war ! Got the wig but not ventured out in it yet, mostly wearing brightly coloured beanies from Milletts which are lovely and warm, especially at night when my head gets cold. Good luck with you treatment. X

 

Jacksprat, good to hear from you, I am now day 5 2nd FEC and running enough had a ridiculously emotional day 4, son came home from uni and it was all I could do to stop myself from welling up and crying, which is not like me. Need to get a grip today. Nausea and heart burn and general tiredness are the order of the day for the last 3 days so looks to be a repeat of the last FEC so far. Yesterday had that same craving as last time for a fish finger samdwich, th is time hubby prepared and already had them in the freezer. No heartburn with those babies 😀😀

Snail888
Member

Re: November 2016 Starters

Cheered up a bit in the afternoon. Guess we can't change anything and just have to get on. Spoke to a chap yesterday who.is a child's oncologist and he said hair loss can take up to 6 weeks just depends how quickly your hair grows. By which time most of us will have had 2 doses. Hoping to do a bit of shopping today although it looks manic out there!
jacksprat2708
Member

Re: November 2016 Starters

Hi Gang,

 

Day 11 in the Big Brother House !! Oh sorry wrong show !

 

Day 11 after 1st Chemo (FEC). what a weird 10 days !! Generally not too bad...but had horrid nausea all the time it seemed but awful at night despite anti-sickness drugs! Had real emotional low last Sunday(day4). started crying as dog got mud on sofa !!! went downhill from there for most of the day. at one point i was laughing and crying at the same time! My kids thought i'd lost the plot! Really hated the fact that i couldnt control the tears.

Woke up on Monday feeling fab ! No hairloss yet to speak of but took girls + my mum wig shopping last Tuesday... so now have one ready for when i need it. Wednesday went tohospital to have line flushed ,also had chat about sickness and theyve changed my meds and now i'm much less nauseaous.(thankgod)

 

I felt i was bobbing along nicely...staying out of way of public on my low immune days and feeling ok. Then developed chronic lower back pain on Friday eve (day 9) and pains shooting down both legs. I could not get comfy and took paracetomol and crawled up stairs to bed and cried !!!! think this is the chemo attacking my bone marrow ! Anyway eased on Sat afternoon and woken this morning to no pain (Yipee)

 

However my PICC Line dressing has come away and my PICC Line is dangling down my arm. So i'm now awiting the District Nurse to come and sort it out ( i'm worried about infection!)

 

Snail88- Hi lovely lady. Sorry to hear whats been going on to ya hunny...veins and all. Hope you have a better day today.Heart

 

Capelmum52- big love my dear

 

Hi to all new starters...hope we all have a fab Sunday x

weisehai5
Member

Re: November 2016 Starters

Hello ladies, I just started my chemo on November 18th (taxol, 1 x per week for 12 weeks) along with Pertuzumab and tratuzumab every 3 weeks for a year.  Just did my third session of chemo yesterday.  Just found this thread and am glad of it.  I am 39 and don't know anyone my age who has been through this.  Thanks for all your posts.  Super helpful. Sorry we have to be here, but happy for the support.  I don't have any questions because you've already answered them!  

Sue H-S
Community Champion

Re: November 2016 Starters

Hi Elorac56,

Unfortunately so - for some it is worse than for others though. I worked full time the last 11 days out of the 21 day cycle throughout my 6 x FEC. It was not easy, but I managed. The breathessness is often because our red blood cell count drops. The red blood cells carry the oxygen around our body and to the muscles. As it takes a red blood cell 120 days from 'being born' to maturity and the availability to take up oxygen - it is only natural for feeling weaker and breathless. It will be very important to monitor your red blood cell count, which is usually done when your chemo bloods are taken.

So glad to hear that you had a port fitted - it will make things so much easier for you.

Hoping all goes well for you.

Hugs

Sue x

 

Elorac56
Member

Re: November 2016 Starters

Hi Sue,

Thanks for that information. I am having a Portacath fitted before 2nd FEC which I am happy about as struggled to find vein for first FEC. 

 

Is it normal to feel weaker and breathless as cycles go on? 

 

Carole 

Sue H-S
Community Champion

Re: November 2016 Starters

Hi again Snail888,

Ah, no. Only once and it was ok. So I can understand why you worry. Especially as it must seem to you that they are hiding things. 

Sometimes they might not be able to print results - so it might be an idea to contact your GPs practice and rquest it. You have the right to access to your results.

Overtired and tearful, is, unfortunately, one of the things, which hapen to us during all of this. Sometimes just for a day or so and sometimes more often. 

All of this does take a lot out of you. Have you, by any chance, set up your private messenger settings yet?

If you are ok with it, I'll pm you....

If you have not and do not know how to do it - here is a link, which should be of help

https://forum.breastcancercare.org.uk/t5/Struggling-to-get-started/Private-groups-and-private-messag...