AUGUST '17 Chemo Starters

[Butterflyflyfree]

After a reasonable couple of days, have felt quite low and tearful today. Hard to know how to fight it. Life seems to have come to a standstill, and not sure what the future holds..Hopefully I'll wake up feeling more cheerful tomorrow. Sleep well ladies xx

[Butterflyflyfree]

Hope you feel better soon, fairy. Sending you a hug. Xx

[Sue58]

Fairy, sorry to hear your in hospital..you take care and get better soon..best place to get you better.. but not what you wanted.... !!!
Day 13 for me and hopefully entering my good week, last week I have struggled with upset stomach, very tired with no energy and a fuzzy toxic headache most days.. this 3rd session has definitely wiped me out more than the first 2 !! Like some of you have also said...thank god no more FEC.... And I don't know what's happened to my tongue its tingly and makes eating anything very hard.. although since I was diagnosed at the end of May, I have lost 2 stone in weight..!!! (Every cloud has a silver lining !! Lol) mind you with the amount of steroids for the docetaxel I'm sure I will put weight back on along with plenty of insomnia..lol..
Ali, Sib, Helen, Butterfly and all the other August ladies ... hope your doing ok?
I still have eyebrows, eyelashes , hair on my legs, hair still on my arms... although they have thinned a little, I still have 50% of hair on my head after still cold capping (which is so cold to do with thinned hair !) I just hope hair starts to grow back on my head with the T.. I've heard people say hair starts to grow back although eyelashes and eyebrows go or thin a bit.....work that one out...
Love and hugs to you all. Xx

[Sib]

Get well soon fairy, hope you improve rapidly. Xx

[Ali S]

Hi Fairy. So sorry to hear you are in hospital. I can't help as I haven't had those symptoms but just wanted to send you some healing hugs. Hope you feel better soon xxx

[fairy]

i had thp on 25/9 and landed up in hos on wed and still here until monday wit severe diarhea and a temp and fast heartrate.. anyone else have these side effects xx

[Sib]

IAli,ve still got some hair too, it grows and i lose it but its like babies first har. Eyebrows and eyelashes thining fast.
Day 2 of T and SE started to kick in at lunchtime with joints feeling a bit sore and tired . Had epsom salt bath and sitting with hot water bottle so managable definitely sleeping better (even with increased steriods) and less nausea so far.
Helen for me cycle 3 was hardest like you I found it took me a long time to revcover but doing better so far this time, so hopefully you will pick up too.
You are all doing amazing fighting this battle. Hope we all have a decent weekend and we are getting closer to the chemo finish line.
Big hugs to you all. Xxx

[Butterflyflyfree]

Hi Ali, well done on your first T, hope you continue to do well. 

I have a slight bristle still(!) in places, but smooth in others, so would be patchy if it was longer. Eyelashes still look ok, but eyebrows thinning rapidly. I'm surprised they've all hung on as long as they have after 3 cycles. 

Havent felt too bad the last few days, certainly better than after the first 2 cycles, although I'm still taking it slowly which seems to suit. 

I too had heard that T causes less nausea so will be interesting to see what meds I get when I start. Not looking forward to the extra steroids as they really muck my sleep pattern up. 

Hugs to all the August ladies xx

[Sue C]

Hi Ali

Just to answer your question re. hair loss.........I didn't cold cap and like you, I didn't lose all my hair. I had a little bit left all over. So I used scarves to cover my head, and after I finished, I had a full head of hair after 4 months. I also experienced thinning on eyebrows and eye lashes but it didn't really notice. 

Hopefully you won't lose much more.

Sue xx

[Ali S]

Hello ladies

Helen, I wouldn't worry too much about having all 6 FEC. I've seen other ladies comment on forums that they had all FEC so it's not unusual. It's great news that you are tolerating it so well and are out and about. I think the fatigue is just a factor that we all have to cope with unfortunately.

I had my first T yesterday. Was ok except the digging around in my hand for the canula. I felt a bit rough in the chair but that's the end of my cold not the treatment. Felt fine last night and managed 6 hours sleep (although I had an odd dream about crisps!). Still feeling fine this morning so far. I only have 5 days of injections to do which is good but I'm slightly concerned as it was upped to 7 after my first FEC as I ended up in hospital. Was surprised to still get my extra anti sickness tablets as this is supposed to cause less nausea. And that seems like a lot of steroids to take. I'm awaiting day 4 now and the side effects. I have my Epsom salts stocked up ready.

Question lovely ladies. Those of you who haven't cold capped, have you lost your hair completely? I ask as I have a small amount of hair left. Not a lot but a very light sprinkling mostly on the top. I expected to be completely bald all over by now. Also how are your brows and lashes doing? I'm a bit upset that my eyelashes are now very sparse. My brows have thinned but are still hanging in there.

Sib, Fairy, Cookiesim, Xena, Sue, Butterfly hope you and all August ladies are doing ok xx

[HelenP]

Hi ladies

Day 10 of 3rd cycle of FEC.  I've checked and double checked with my oncol as lots of you guys are changing regime to T and other regimes next cycle but I'm defo having all 6 FECs with no changes.  Don't know why really, and don't really want to ask further!  Oncol says I'm tolerating the FEC really well with no real mishaps or infections so am staying on track with same dose for all 6 cycles.

Went proper girly shopping today and was anxious I'd run out of energy really quickly but luckily my bestie and I browsed so slowly that it suited my new 'slower pace' so it was a great couple of hours of normality. Also met some friends for a cinema night last night and stayed awake for the whole film, slept all the way home though! 

This cycle I have taken a lot longer to get some sort of relief from side effects, still waiting for my bloated/upset tummy to settle though am sleeping better this week.  Had only 10 hours sleep altogether day 1-4 last week!  

Am really struggling with feeling so fatigued for this long and was hoping to feel a bit more energetic by now, hope it gets better before the next cycle starts, I want to get out more.

One day at a time ladies 🙂

[CK]

Well done Sib! Halfway there!!! Plenty of rest and soaks.xxx

Soworrid
I was told hair loss is with the ECs. Doxataxel is less nausea, more fatigue and achy muscles and bones and nails need painting dark to avoid sunlight getting to them .x

[Soworridl]

Anyone been told about hair loss on docetaxel? X

[Sib]

First T sessio and herceptin yesterday. Long day in hospital 9.30 till 4.30pm but so far feel much better than on FEC. Did manage a few hours sleep (usually first night of chemo im up all night) plus managed to eat again unheard of for me on chemo day. But nurse did say side effects kick in around day 4. Got epsom salts ready and also been prescribed gabapentin for nerve pain. Also got to start injections today for blood count.
Thanks for support ladies its much appreciated. Lets see how we all get on and support each other. Hugs. Xx

[Ali S]

Hi ladies

Sue thanks I'm dreading tomorrow but I keep telling myself that I will be one step closer to the end. This forum helps so much. It's so great to hear from other ladies in the same position. I'm not sure I would have got this far without you all.

I saw my surgeon today and my lump has shrunk from 2 to 1.5 cm. I'm pleased that it has shrunk but would have liked it to have shrunk more. She also confirmed that I still have loads of cysts which is disappointing. I'm worried that if the cysts don't stop I will be in a permanent state of panic once treatment ends and lumps are still appearing. My surgery is booked for 18 December so just need to finish my chemo on time now.
Ali xx

[fairy]

hi there, i feel that the t part has been not so severe but more prolonged, im still feelin very rough even now day 10 with a sicky feelin tired and weak i just cant seem to get my strength back or eat much which isnt helping

[Butterflyflyfree]

Hi Sue, I'm Day 13 cycle 3 EC 1 more to go, then switch to DTP for 4. Less physical SE this time, more emotional and PICC still playing up. So the rollercoaster continues! Brain is willing but body less likely to follow so lots of sitting down needed. So pleased I took the decision not to work through, couldn't have dealt with the stress of worrying about going in or not. 

Hearing other ladies stories is, as you say, so reassuring. I'm beginning to worry about the DTP next, and actually was (momentarily) pleased I have another EC next week! So weird! 

Hope today went well Sib, and hope you continue to come out the other side Sue.

Hugs to all xx

[Sue58]

Sib..hope all went well today..Ali. hope all goes well for you tomorrow..let us know how your first T was...!!
Mary kate..have you had your 3rd one yet..I hope so...x
I'm day 10 today and starting to feel better although my tongue is very tingly and sensitive !! For those if you who have T next chemo and havnt tried epsom salts or who have tried epsom salts and find they help. Boots have a 100g bag of westlab epsom salts half price £2.49 and they have helped me with aches and pains and helped me sleep better !! I've stocked up for the next 3 T chemos..!!
I've been reading lots of blogs from other people ahead of us who are having problems with doxetal and from lots of us August ladies who have had a rough time with Fec..its reassuring that were all going through the bad times together and can help each other..I don't know what I would have done without you all , so a big thank you for all your help and support , its much appreciate when you are feeling so low and lousy...
Butterfly, Helen, Fairy. How are you doing ?
I'm looking forward to the good week ..but not looking forward to next session...hope everyone is ok.
Love and hugs. And thanks for being there..xxx

[Cookiesim]

Xena, same as me I hid for a few weeks when mine went a bit pearshaped. Hopefully they have us both on a more successful plan. My EC was stopped due to palpitations and poor response, and I am having weekly placitaxol rather than the doce. I also had my first carboplatin Monday, my side effects are similar. It's good to know there is always another regime to try. Was feelin flat but getting my positivity Back.

Ali good luck for tomorrow 

All I need now is some dynamite to sort the constipation then I'll cope 😀

❤️ Be kind to yourselves everyone

[Soworridl]

Xena75 sorry to hear you've been having a tough time. When you say your heart didn't like the docetaxel, what do you mean? I've been having major heart palpitations. Heart was going so fast a couple of days after each EC. Resulting in trips to hospital. Wondering what heart side effects the docetaxel caused You?

Also you mention your kids having the flu jab. I've been told my son should not have the nasul spray they offer at the schools but a jab at the gp as the spray is live and should have a different not live version done at the go instead?

Xxx

[Xena75]

Hello everyone. I'm afraid I ran away for a bit and haven't posted as I had a few bad weeks and I didn't want to scare anyone. Some of you may have read on other posts about it. 

Basically they have had to change my regimen due to my heart not liking the docetaxal. So I'm just on carboplatin for the last 4 cycles. 

Had my first carboplatin only chemo last Friday and feeling shakey, gaggy, hungry and have heartburn also bloody knackered, but slightly better than with the doce as my tastebuds don't seem to be so affected.

sorry to hear some of you are having really hard times too. It sucks doesn't it, but for most of us we're half way now and it's worth it in the long run. 

Advice i I was given on Friday re flu jab was to have it the day before chemo when blood count at highest and they will give the injections to prolonged protection after also. My children are to have it the same day as me also and I'm not to cuddle and kiss them ☹️

[Ali S]

Hi Cookie, sorry to hear you have been having such a hard time. It's good that they have altered your treatment though. I'm also triple negative but I'm having standard FEC-T due to start the T on Thursday.

Cath, thanks for the words of encouragement. It does sometimes feel like this will never end.

I've had my phone consultation with my oncology team today. My bloods are good so chemo can go ahead on Thursday. However I now have a cold so it depends how I feel on Thursday as to whether it will go ahead. So feeling fed up today. Hope all you other ladies are feeling ok today xx

[Cathysid]

Hi everyone,
I’m day 12 after second tchp now.
Sorry to hear some of you are struggling- I know how you feel. It’s bloody awful feeling so ill! When the touchiness lifts and you can tick this one off the list you will feel so much more positive again. It’s while you are in the middle of it that it seems insurmountable.
Lots of love, rest up, long soaks in bath of Epsom salts and have other people make your meals - whatever you can bear to eat.

My side effects with tchp have been mainly complete lethargy, feeling drunk/hungover simultaneously, intermittent diarrhoea and nausea. It lifts after 8 days.

Remember, this isn’t forever - just a couple of months and we will be leaving the chemo behind us!

Cath x

[Cookiesim]

hi all, haven't posted for a few weeks as had a few issues and a bit of a meltdown. After x2 EC (due 4) this treatment was stopped, mainly because I was having palpitations but also because lump didn't seem to be responding. I had another MRI on Thursday for a new baseline (awaiting results) and treatment has jumped to the next stage. X4 Taxol/ carboplatin. Been today for first treatment (had all carbon and a third of the taxol dose) I'm stating a newish regime for my hospital and will be having the taxol dose divided so have to go weekly for the 12weeks. In theory it should make the S.E's a little less dramatic. Fingers crossed. It will mean I have to go to hospital twice a week now as I also have to have weekly PICC care and bloods, but that doesn't bother me I'm hoping this regime will come with a few less delays & hiccups and at least I'll be in the right place if I have any concerns. Not sure if anyone else having this regime (I'm triple negative)

I think it's only fairy started the 'T'  glad you not been too bad xx

Large positive pants back on now 😀

Lots of love and virtual hugs to you all

Cookie 💋 

[Vintage]

Hi Fairy
Just seen your post about first T.
I am from August 16 . Can't believe it's over a year since I started fec t H . But you do actually come through this and I am doing ok.
I recomended frozen pineapple pieces. Apparently very good for sore mouth, has some sort of enzymes that are good. Or ice pops or the odd Mac flurry 😅 yummy.
I also had very upset digestive system on T. Make sure to let your gp know as they can be very helpfull in writing Perscriptions to help.

Sending my love and good vibes to all you lovely August ladies
Vx

[Sue C]

Hi Fairy
You need to replace the sugar and salt, so get some Direalyte ( not sure if I've spelt that right!) or lucazade.
Worked for me!
Sue xx

[fairy]

Thats ok.. an update is that by far the worse side effect has been chronix diarheaa since sat pm which is makin me feel so weak.. ive just taken some imodium fingers crossed x

[Ali S]

Hi Fairy, thanks for posting about your experience with the T. It has helped put my mind at rest a little that not everyone has the awful side effects I've read about. I hope your tummy is feeling better today.

Sue, Butterfly - I'm so sorry you are both feeling so awful. Hopefully you will start to turn a corner soon. I think we've all found our latest cycle hard. Butterfly, you need to embrace your inner lady of leisure more! My GP has given me some cream for my sore veins. I'll let you all know if it helps. Sue, feel free to moan whenever you need to. We all have days when we need to vent.
Hugs to all xx

[fairy]

well nearly a week after infusion and apart from quite a bad afternoon/night of painful stomach cramps and constipation/diarrhea and lots of fatigue the dreaded T part has been no where near as bad as i thought it was and ive probably been overall better than on the FEC! i have lost my taste, a slightly sore throat and mild aches and pains but been keepin on top of ibuprofen and coolcodomal and seems to work. However i dont know if its still early days and se are yet to come though im hopin i will start to feel better this week.. 3 down, 3 to go!

[Sue C]

Hi Ladies

So sorry to read that some of you are struggling at the moment. I don't really know what to say😢 

It's so hard to be positive when you're feeling like c***! Don't try and do anything, just embrace the fatigue and resign yourself to watching box sets on TV! You will get better. This isn't forever. And all those drugs are doing their job.

Sending all a gentle hug.

Sue xx

[Sib]

Hope you are feeling better MAHjfarn20 its rotten when you feel so bad. I have aldo considered briefly stopping treatment as i felt so bad , chem is the pits and im dreading starting my T with herceptin o Wednesday, plus i will be in hospital all day from 9am to 5pm as rhey are concerned about reaction !!
Also waiting for results of my brca2 test which should be in next 14days, if positive need more surgery. Sometimes tjis kourney is a nightmare that seems to never end.
Hope Ali , Sue and fairy are all doing ok and coping as best you can. Xx

[Butterflyflyfree]

Me too Sue, day 9 for me, and it's all so tough. Lots of tears and worries about how I'm going to keep coping when there's such a long way still to go. I've normally got so many things going on, and lots of lists of stuff to do. Seems so strange to just sit, with no energy or motivation to do anything. 

Hasnt helped that I developed a blister under my PICC dressing which is sore, and veins from the first 2 chemos still aching. 

Sending a big hug back, lets hope we turn the corner soon. Xx

[Sue58]

Hi Ali, I'm feeling really lousy today ..day 6... been in bed most of the day..toxic migraine headache
..shivering...no energy..no taste... no interest in food.. feeling very low...this happened last chemo, so I'm hoping by Monday I will be on the up.. just waiting for the upset stomach to kick in !!!...god I absolutely hate feeling this crap... I really hope I don't feel like this on T otherwise, I'll feel like I can't go on with anymore chemo...this is the pits... never ever felt this horrible... hope everyone else is bearing up..sorry for the moan..hugs xx

[fairy]

well ladies, im still waitin for the dreaded se to kick in.. i did have a afternoon of achin yesterday pm! i started takin pain killers on the 2nd day, plus nystatin so i dunno if 8ve just kept se at bay or ive just been lucky.. still very tired and picky throat and lost my taste but apart from that ive been ok.. ive also taken a clarityn once a day since infusion.. im day 6/7 tomo depending on how u look at it, treatment was mon so im thinkin i shouod of experienced things by now ...amy tips for.constipation?? thats an issue today

[Ali S]

Hi MAHJfarn20, so sorry you are having such a bad time at the moment. That's the problem with hospital stays, it's a worry that you will pick something up. Hopefully your GP can give you something for your cough. It's nice to be half way there isn't it.

Sue, how are you feeling now? I hate those days of feeling blah. I too am concerned about the side effects of the T. I'm going to try the dark nail thing i think, might as well give it a go.

Fairy, how are you getting on? Hope you are doing ok.

I've been feeling achy the last few days so I'm hoping I'm not coming down with something. I want to be well for my bloods on Monday. Had my flu job today, hopefully it won't make me feel worse.

Hope all you ladies are having a good weekend xx

[MAHJfarn20]

Update. Only just managed to have 3rd cycle due to bloods. It did go ahead but I needed admitting overnight for blood transfusion.... obviously, the constant bleeding doesn't help. Monday and Tuesday am spent at the hospital. In small overnight ward with 3 other women-one of who did nothing but cough all night. Needless to say, I have now got a bit of a chestnut cough. Could d Mr see doc today-no appt even though I rang at 9.30am. Got one for Monday (usually only allowed to make appt in the morning for that day). Hoping it doesn't get any worse. Temp up and down-37.0 to 37.8 yesterday. 

Ended up back at gynae clinic and told to remain on the tranexamic acid until further notice. Also got appt to discuss next steps, the week before my final cycle starts, so I am hoping that there is light at the end of the tunnel. Worse week yet for feeling exhausted. Hope it's not as bad on the T cycles.

On the plus side, I am half way through now... 😁

[Sue58]

Think that should have read afternoon. Not morning...chemo brain. !! Lol. Xx

[Sue58]

Morning August ladies, how are we all feeling?
I'm day 4 after chemo 3 and starting to feel a bit ' blah' today, although I did sleep much better last night apart from and hour and a half of being wide awake, and 2 toilet trips ..but I was in bed by 10pm....!! I just keep thinking if I can get through to monday, then hopefully these will be the last nausea type side effects I may go through..to be honest I hate feeling this horrible..but worried incase 'T' Will be more challenging..!!
anyone still cold capping or has everyone given up ?
Fairy hows T been so far ? I havnt painted my nails dark so far, just clear nail varnish / base coat that I always wear, but I may consider painting them darker over the next 3 chemo regimes..
Hope your all managing the side effects ok. Big hugs to you all..xx

[Butterflyflyfree]

Good luck Fairy, I've got one more EC then 4 DPH. Feeling very tired but not sleeping well, hoping for a better night tonight. Xx

[fairy]

yes i did paint them a dark purple.. no awful se yet but early days.. im waitin! ill keep u updated xx

[Ali S]

Hi Fairy. Yes I think you are the first as most of us are switching to docetaxol for our 4th cycle which for me is next week. How are you getting on?

Out of interest have you painted your nails dark to try and protect them?

[fairy]

i think im the only one here who has had the dovetaxol on 3rd chemo.. oh well i can hopefully give u all some tips x

[Mellylew]

Hi ladies. Hope you are all doing ok. It's a challenge isn't it? I've had a PICC line fitted yesterday as my veins are rubbish! Took two attempts but it's sorted now, just hope it stays that way. Having my 3rd FEC on Thursday which will completely wipe me out for about 4 days but on a more positive note, I had a really good weekend and socialised quite a lot! Bit washed out today though. I hope you are all coping with your challenges - we are all in it together! Big hugs ladies. Xx

[Butterflyflyfree]

Hi Ali, glad you're feeling better. Day 5 cycle 3, one more EC to go. No headaches yet, and nausea still keeping away. Hopeful for better sleeping from now on as steroids stopped yesterday. Chemo veins in both arms a bit sore, ibuprofen gel helping there. I too am wary of the second half of chemo and the SE but trying not to think too far ahead. 

Enjoy the sunshine ladies. Xx

[Ali S]

Morning ladies. How is everyone today?

I'm day 15 now and am feeling much better and the sun is shining today.

Jo, how are you doing? Really good news that your lump has shrunk so much. Must make it all seem so worthwhile. I'm hoping to get some good news about mine next week.

Fairy, great news on your lump too. I hope you don't get too many side effects. I'm having T next time and wondering how it will affect me.

Butterfly, Sue, Helen - hope you are all doing ok after your latest rounds. And hope all other August ladies are feeling well xx

[HelenP]

Please ignore the footnote on my previous post saying 'warning..emotional content', I thought the yellow symbol was for emojis!!! Typical me!

[HelenP]

Sue58 and Fairy - glad all went ahead ok.  I had number 3 yesterday too.  After taking 5 attempts to canulate me on cycle 2 I drank 2 1/2 ltrs of water yesterday beforehand and put heat pads on both arms for 30 mins before starting! It worked a treat and they found a vein first time..phew!  It did mean I was traipsing back and fore to the loo during the infusion, but was so elated to avoid a PICC line, I didn't mind.

Despite taking 2 Nytol tablets to aid sleep, I was awake reading 'til 1am and then wide awake from 4.40 this morning, boohoo!!!  PJ day for sure for me.  Flu jab booked for the afternoon of my bloods day in 3 wks.

I've barely had nausea at all and am hoping it'll be the same this cycle.  Am on FEC for every cycle so the oncol thinks it's highly likey I'll stay like this...there's always something positive in everything eh?!

Am mouthwashing like a demon already this cycle as my mouth suffered from day 12 with ulcers and a cold sore last time, not nice drinking my coffee from the side of the mug, then realising it was too hot on the mouth ulcers too lol!  

One day at a time ladies x

Spoiler

[fairy]

yes i had it, i was in the hos from 8.30am to 5.45 so very long day.. now im just dreading the mentioned terrible side effects of decetaxal to kick in xx

[Sue58]

Hi all you lovely August ladies..hope you are all well..or as well as can be expected...
Mary Kate, I'm so sorry you couldn't get number 3 in but glad they are going to alter the dose to help with white blood count.. although spreading it out is not what you want, but may help you in the long run... good luck.
I've just got in from chemo 3 and I'm glad there will be no more Fec.. only the dreaded T. And the cold cap was very cold again for 10 minutes as I'm very thin on top with a slight hair covering..so felt it a bit more...finding the cap ok , but it stops you chatting to people / nurses as the chin strap is tight and restricts jaw movement..plus you look a right pillock wearing it..lol..and at the end you take it off and you hair is damp and covered in conditioner..!! Not a good look...but I have to say I have kept 50/60 % of my hair so far although it has thinned a lot..I havnt had to wear a scarf or wig yet when I am going outdoors, although I am feeling a bit draughty on top of my head..!! I may still lose it on the tax chemo!! But will keep going with it...
I hope Fairy and Helen you have had number 3 today...Ali and Sib hope your feeling better. And everyone else hope your managing.. good luck ladies. Xx. Big hugs xx

[JoG83]

Hi all
I was an August FEC chemo starter. 3 x FEC and 3 x the other name lol! (Dexi something).
Had my second batch this Tuesday and now just grinning and bearing it with the injections you have at day 5.
My lump has shrunk from the size of an egg to the size of a cherry after the first couple yay!! This journey seems quite long.
How are you finding it?
Jo x