November 2016 Starters

[Snail888]

Thanks Sue. Did you have ca153 tested each time too? That's the one that's worrying me as no one has ever mentioned. I can't get anyone to print results the doctors have refused and the onc just put liver results on the screen. Over tired and tearful today xx

[Sue H-S]

Hi Snail888

That is all quite normal - as the thick ends of your bones make the new white and red bloodcells. So it is a check how all is functioning. 

I had my tests printed out each time - to see how the values changed over chemo. Made most interesting reading, lol. Despite Gcsf injections my white blood count was lower every time and so was my red. It helped me to understand better, why I was becoming more and more breathless and weaker - as I progressed through my 6 x FEC.It helped me to understand to take infection risks more serious and look after myself to avoid injuries and taking care not to bruise myself. 

Hugs

Sue xx

[Snail888]

Just off for pre chemo bloods. Has anyone looked at what they normally check? I have full blood count ca153 lfts bone markers and minerals on mine. Is it usual to have all those done? Aftwr being told I had a local tumour with no lymph involvement I feel they are hunting for mets and im not being told.

[Sue H-S]

Hi Elorac56,

FEC x 6 and FEC x 3 + T x 3 are different chemo regimes, which are prescribed depending on the type of breast cancer has been diagnosed and its receptors.

For anyone who is on FEC x 6 and does not have a PICC line or other port installed, may I please suggest you have one. Perhaps talk to your BC nurse? Although I have recently come across a lady, who has got through the whole regime without a port - I guess she must have veins of iron! The E in the FEC can be very tough on your veins, sometimes leading to them collapsing or 'burning out'. They will recover eventually, but it does take about a year or so. It also can cause you not to be able to stretch that arm fully anymore, as the veins harden, as they 'burn' out.

Drink as much as you possibly can in the two hours before treatment and keep the arm very warm to hel plump up the veins. 

For those of you who have challenges with cannulation you might find info on this thread of much help - https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...

Hugs

Sue x

[capelmum52]

Hi Snail 888,

I find hotel chocolat a great place to start online normal (although I gave gone off of chocolate since starting Chemo ??) Ian sorry about the veins they do seem to get really messed up, my hand looks like a pin cushion at the moment too. When will you get you CT results ? Hopefully they will be ok. Will be thinking of you in the meantime. And if you need to have a good old rant you know where to find us, best done here than taken out in the relatives x

[Snail888]

I did a lot of research on 6 x fec vs 3 and 3 x t. There is access to the adjuvant predictor and it may be worth putting you info in if the onc didn't. For me with my tumor t would have given 3 percent additional survival at 15 years and nothing at 5. Since its tough on the liver we opted for 6 x fec. Also my understanding is with 0 nodes involved fec x 6 is a better regime. What is heartening is the personal touch to this treatment. How your situation is taken into account. Xx

[Elorac56]

Snail888,

so sorry to hear about your day.

I've just spent the morning on line 'shopping' - it does help.

I tried a walk but just froze. 

Music ?

big hugs

Carole

xxxx

[Elorac56]

Hi all,

Day 7 of first FEC. Had a rough couple of days where I just slept as felt nauseous but feeling bit more normal today which is such a relief. 

Thankyou Fiona for details of first cycle - it's helpful to have an idea of what may happen. I may try work on Monday if I continue to improve as I need normality - I will see how the weekend goes.

Snail888 hope things are okay - thankyou for details of Anna bandana - look great value.

Welcome  Lucky stew -we are at similar points in our treatment so hopefully we can keep in touch. 

Query - I think I am having FEC x 6. How is this different to FEC X 3, T X 3? 

Best wishes and hugs 

Carole

[Snail888]

So the radiologists managed to damage 3 veins before getting canula in.  They have also bled really badly under the skin - a sign of the state of my platelets I guess. Just a horrible day.  Thankful for everyone on here and somewhere to moan/complain that isnt a relative.  Feeling generally hormonal and low... Marvelous.

Perhaps some on line retail therapy may be the idea??

[capelmum52]

Hi Jojo and Snail888,

Snail888, I am sorry to hear that you are having such a rough ride at the moment, fingers crossed the CT scan will show positive results and they will have you on the mend soon. At least they are dealing with it all promptly for you. I will be thinking of you in the meantime. X

Hey Jojo, my 2nd FEC went well yesterday. She managed to get the canula in at the 2nd attempt so still no PICC line. Like yours they also slowed it all down as veins now thin and tender. But otherwise all good. Breast infection I think has got better as the would looks to have healed, having it looked at today. I have my oncologist check up today and will get my full results but the Oncolgy Nurse has told me that the CT and Bone scans were both clear, which I take it means that it has not made it to any other organs or my bones. So relieved. I will have the rest of the news regarding the lymph nodes today.
How were you during the first half of your FEC 1 last time ? Do you feel better prepared for it this time ? I know I do, which I think makes it easier to deal with. Hopefully you feel the same. Just think in 10 days we will be halfway through FEC and coasting down hill to T will Christmas in the way to distract up a little. What are doing about Christmas ?
Ladies love to you all, just remember how amazing you all are and that we will beat this together X
Fiona x

[JoJo45]

Snail888, sending hugs hope everything is ok and the scan is just a precaution. Were you expecting one? I had mine earlier than expected due to cancellations, which was nice as got it much quicker xxx

[Snail888]

Crappy day for me. Urgent ct scan organised for tomorrow. Liver all over the place... hey ho

[JoJo45]

Hi Ladies, 

Just back from second round of FEC, feeling ok so far,  they slowed the infusion down today so that I didn't get the hot flush and nasal congestion, which was a lot better, though I think the hot flush might have been nice as so cold today.  Went off wearing a woolly hat, then changed to my bamboo hat in the clinic.  The lady opposite me was on her T and her hair is starting to grow back under her wig, so that sounds good.  

Hope everyone is doing ok.  

Fiona how was your second one? 

Hugs 🤗 to all xx

[capelmum52]

Hi Luckystew,
Nice to meet you. I too Cold capped on first chemo and hair still started to fall out on day 18. I. Am now sporting a crew cut and although 90% of it is still there it is shedding more each day. I have 2nd chemo today so will ask ONC Nurse if it is worth doing it again.
Ladies, I had the look good feel better course yesterday, it was brilliant. 15 ladies and 8 beauticians so lots of 121 help. Also the goody bag was amaZing. Full of good quality skincare, foundation, and lots of make up and a very lovely bottle of D&zig perfume 😊. I would highly recommend getting yourselves booked on a course.
Got my results on Thursday so slightly panicked, especially after the little bombshell they dropped at my last one.
Got my wig yesterday too. Is it just me or are wig shops really creepy ? Lol
I hope you are a coping well And send you my love
Fiona x

[Snail888]

At the moment I've lost now hair from anywhere. So much for thinking I could save on removing leg hair for the winter! Glad people are coping. Xx

[LuckyStew]

Thanks Skye!
I'm glad you are not feeling too bad after you second lot!! I think you are so brace going into work!!!
I think I've been quite lucky as SE have been minimal apart from some insomnia and dry mouth!! I imagine it will get worse though?? I cold capped and haven't lost any hair yet although it's coming by off elsewhere (TMI sorry!!) so not sure if that means it's about to start coming out of me head soon or if it means I've had some success with cold cap!!! Only time will tell I guess with most things!!

Take care all
X

[Skye]

Hi Everyone

I'm at Day 8 of my 2nd FEC and went back to work yesterday.  I did feel tired, but not exhausted.

Had the usual headaches for the first 4 days after treatment, but other than that I've been okay.  Did wake up early hours on Thursday with heartburn, but it didn't last for long.

Haven't had any back pains after the white blood cell injection, so I'm glad about that.  Last cycle they were so blood sore.

Most of my hair has gone now 😞 and I've got a LGFB session booked for 5 December so that'll be great.  Does anyone know if you should shave your head to get rid of the little that's remaining?  I'm finding that I can't get comfy in bed as my hair is stubble like and keeps irritating me when I'm lying down.

Big hugs to everyone 

Skye xxx

[Skye]

Hi LuckyStew

So glad that you stopped lurking lol - welcome to this group (although I'm sorry to see you here! 😞

How are you feeling now after your first FEC?  We all have different side effects and a lot depends on age and whether you're on medication for anything else.

I'm sure if there's anything you need to ask, then someone on here will already know the answer.

Big hugs

Skye xx

[LuckyStew]

Hi everyone
I've been secret reading this thread for weeks. I'm on day 11 of first FEC. I'm not very good at writing in things like this but just felt I should stop lurking and say thank you for all your posts and tips. I've found them all really helpful.
Have a good day everyone xx

[Snail888]

Thanks ladies. I think it's the fear of looking after it. I'll let you know what on says xx

[JoJo45]

Hi Snail888,  I have a PICC line in and apart from getting use to it for the the first few days, having to shower with a cover on and remembering not to over stretch (my other arm had nodes removed), I have no problems and it makes the chemo so easy to administer, and they can take bloods from it too.  If offered it is worth having to save your veins.  My veins are very small and having had several cannulas over the years with terrible bruising, mine was suggested from the beginning.  

Xx

[Sue H-S]

Hi again Snail888

The GCSF only helps to support faster and better growth of white blood cells, not your red ones. So you might find that you bruise much easier and that should you cut yourself, you may also bleed a little longer.

Even with GCSF - you are still at high risk of infection the further you go into your chemo treatment, as your white bloodcells are never completely replaced in a cycle. This lack of replacement is cumulative as you progress through, as is the drop in your red blood cell count. Hence the mounting tiredness, breathlessness and fatique.

If you are on 3 x FEC and then switch to T, you might just get away without a PICC, but please be guided by the professionals. I made the mistake of not wanting a PICC - and after a most painful and extremely long 4th administration of FEC - had no choice. My veins have still not recovered. I finished my chemo on Sept 1- the PICC was put in in Mid July...

Hugs

Sue xx

[Snail888]

I've got 6 fec in total nut hoping I can find 5 more veins to take the hit x

[Truey]

Sorry - meant chemo not hero........but it my mind it's the same anyway!!

[Truey]

Hi,

I had exactly the same after my 3rd FEC. It suddenly appeared about a week after the infusion just at the site where the cannula had been. I went to the chemo unit because I was also getting nosebleeds and the oncologist was pretty unconcerned. He said it was probably just a bit of chemo leakage. 

It it did clear up after 4/5 days but still feels tender now, 2 weeks later.

The oncologist didn't want to go for a PICC line as I had already had my last FEC and T is easier on the veins.

I would talk to your hero unit about the bruise - I got unnecessarily anxious and they can give the best advice.

Sue (from October thread) xx

[Snail888]

14 days ago sue which is why I think it's so odd. It may be something to do with the gcsf raising my white and red cells. Definitely going to mention it. Really don't want a pic line 😞

[Sue H-S]

Hi Snail888,

Please mention this at your appointment tomorrow. If you do not have a PICC, it might be wise to ask for one.

Tender or sore veins usually happen when the E in the FEC or EC starts to damage them. If you are actually showing a bruise on and around the vein - it is really important that you let them know.

How long ago was your chemo administration?

Hugs

Sue x

[Snail888]

Here's one. Today I have developed a bruise over and to the side of the vein used for infusion. If I press the vein it is quite tender. I have on appointment tomorrow but wondered if anyone else has had similar xx

[JoJo45]

Morning ladies, 

Shaved the hair off on Saturday as was still falling out and the short hair was worse as kept sticking in everything.  OH really likes it, says I have a lovely shaped head 😍 him.  But my boy went off for a long walk in the woods after, so I think he was a bit upset to start, but now he thinks it's cool, and is now showing me how to tie bandanas whilst he wears my wig 😳.  

On the eyebrow front mine are still intact, but when I was in Boots last week I mentioned to one of the girls on the makeup counter and she showed me a lovely eyebrow makeup, it's a cream powder and some fibres which you can use to build up if you have a small amount of hair left.  Apparently her mum went through chemo last year so she knew was I was going through.  

Its called KaBrow and you just apply with a brush, use the fibres if needed.  

Not booked for 'look good feel better yet' but my local one is run by the cancer charity based in our hospital grounds.  

Hope you all have a good day xx

[Snail888]

Thank you. I'm going to call since it seems you can't book on line. Hope monday morning isn't too bad for you all. Ecg today and bloods. Bleugh...

[Djroo]

Try here

http://www.lookgoodfeelbetter.co.uk/workshops-and-advice

Mine was held at my local cancer care centre by McMillan cancer care- I didn't see it advertised anywhere. I just asked at the centre - worth a try 

Debbie

[capelmum52]

Just google "Look Good Feel Better" some areas get booked up months in advance so best to check it out as soon as you can. I was told about it by a lovely lady on the Clarins counter in Debenhans. She volunteers for the one near me. She said that all attendees get given a goody bag with lots of free make and skincare products in it all donated but firms in the cosmetics industry.
Good luck with getting a place X
Fiona

[Snail888]

Hi seagull
You herceptin and Pertuzumab are the receptor blockers. Pertuzunab is really cutting edge and nice have strict guidelines on who can have it due to cost. docetaxal & Cyclophosphamide are the t and c part if fec t. There are lots of reasons not to give epirubicin but I'm not a specialist.
I don't think.we can have the semi . permanent eyebrows since they are like a tattoo and involve cutting the skin and injecting dye just not as.deep as a proper tattoo. I have bought some that are like the tattoos you had as kid but you put them on your brows or as eyeliner or eyeshadow. Thought it might be a bit of fun at Christmas.
How do you find out about the courses for make up etc?
Hope you all have a great Sunday xx

[capelmum52]

I forgot to ask, are you using a wig cap under the wig ? If not that might might help.
Live Fiona x

[capelmum52]

Hi Lisa,

Have a brilliant day on Tuesday, it sounds like a great course. I am trying to find out about the semi permanent brow tattoos to see if we can have those instead, will let you know if I find anything. My BCN said that curly hair often comes back straight and visa Versace so you might terms your wish yet ! Your chemo mess do seem to be completely different as most of us seem to be Ec or FEC or FEC T. Although I believe that the cyclo something is the C part of FEC and the Docetaxal is the T so there are some similarities.
How far apart are your cycles ?
I actually had a spicy meal and a glass of red wine last night without the heart burn, it was absolutely heavenly.
Has anyone found their sense of smell has changed ? I spent yesterday trying to work out what the very sweet smell was that seemed to be following me around all day only to find it was my own perfume that definitely doesn't normally smell like that 👃🏼 very strange !

[Seagull1]

Hi all

Think I'm on completely different chemo to everyone else (Pertuzumab, herceptin, docetaxal & Cyclophosphamide) & they told me because of that it wouldn't be worth cold capping as I'd definitely lose my hair. Snail888 I've got really curly hair too which my friend with curly hair told me is a nightmare with the cold capping as it all knots up & obviously it's not easy to brush curly hair. I've got a straight wig as they didn't have any curly ones that didn't look like a hideous 80's perm! I've always wanted straight hair anyway so it's a nice change. Though I can only wear the wig for a few hours at a time as it becomes uncomfortable. I just wear Sleep hats around the house. Have still got lashes & brows thankfully & wish I'd know about eyebrow tattooing before chemo started as now you can't have it done but may look into those stick on ones. Though I too have the look good feel better course Tuesday capelmum (in Brighton) & am hoping they'll give me some tips on brows there. Am trying to make the most of these days where I feel ok before chemo 3 on 6 December.
Enjoy the rest of your weekend ladies.
Lisa 😘

[capelmum52]

Oh yes please let me know about the eyebrows as I am intrigued by the term poetry tattoo ones, they sound really good.

Got used to the shaved head surprisingly quickly. Hubby says I look like serverlan from Blake seven for those of you old enough to remember her. Apparently he thought she was hot !! So am taking it as a compliment.
Ladies I hope you are all having a lovely weekend before we head in to the next round.
Fiona x

[Snail888]

Hi Fiona
Sorry to hear about your hair but you have dealt with the situation brilliantly. The cold cap success depends on so much including how your liver and kidneys breakdown the drugs so it really is a try it out.
I'm glad it's winter so that wearing a hat really doesn't look too out of place.
I've also bought some temporary eyebrow tattoos just to be a bit different. Will.post pic when I use them
Hugs to everyone xx

[capelmum52]

Hi ladies,
Well day 18 and woke up with very tender head, like it was sunburnt and hair falling out in hand fulls. That made me cry, first time in weeks, went to work and all the young lads there were trying to make me feel better which was very sweet. So much for the cold capping. Won't bother with doing that again 😨. My lovely hair dresser saved my head thus afternoon all hair remaining is only a few millimetres long. And flatly refused to charge me, that made me cry too. Bought some thermal beanies in milletts which are comfortable and warm. Got wig fitting on Monday and Look Good Feel Better on Tuesday, hopefully with make me feel a bit better about my appearance. Djroo, nice to hear it was really helpful.

Carole, my approach has been different as day 1 and 2 reasonably ok, worked from home, day 3 to 9 good for nothing, as very tired constipated, nauseous, heartburn, foggy brain etc. But from 10 through to 18 been much better and back in work full time. Obviously being carefully to limit exposure to infection, working from 2 different location and even occasionally from home if necessary as and when any colleagues have a cold. For me getting back to work was brilliant as I then felt like me again not just a cancer patient. Having gone through it once I now feel I can cope with doing this another 5 times, which was definitely not how I felt on day 7 ! 😱
I am on FEC X 3 T X 3. Also had lumpectomy. Due to have axilliary node biopsy after chemo and before radiotherapy.

Regards

Fiona

[Jjmabbatt]

Hi everyone - had 3rd lot of FEC on Thursday, starting the T part in 3 weeks, am doing ok apart from the hot flushes.  Anyone got any tips on how to manage or get through them? Have also got oral thrush and hideous piles but have got some Nystatin for the thrush and germanoids for the farmer Giles. Apart from that all ok. Half way through the chemo which I am pleased about, it's true about taking one day at a time. This site as I have said before is the best place to come, to share my own and read everyone's journey. I think we all need a huge pat on the back and high five for being so amazing! 

[Djroo]

Had my second EC yesterday. Was so much better with the central  line in -no messing about for veins. Felt a little bit sick last night but nothing major. Woke up this morning with a headache but am wary of taking painkillers as well as the rest of the meds. I'm an anti sickness tablets and steroids for 2 days plus I have the I injections for 7 days - even managed to do these myself after a few days. I have shaved my hair off as it was just falling out and it was everywhere. I've got a wig but just prefer to wear my hats if I'm honest. I find that when I'm feeling sickly I get myself wrapped up and go for a walk - it seems to take my mind off everything. 

I attended one of the look good feel better masterclasses yesterday and  I can definitely  recommend  it. We had a bit of fun and learned how to do make up and look after the skin. Amazing what a bit of pampering can do. 

[Snail888]

Satin not dating pillow cases although they do sound like an interesting market!

[Snail888]

Hi Carole
I think my best advice is to.do as little as possible if you can. I have literally laid in bed till 12 pottered to the sofa and then back to bed for 2 weeks. I'm lucky that I can but resting will help all the bodys systems cope with the drugs.
Anna bandana do lovely soft easy to wear sleep caps which should help with rubbing. I also bought some cheap.dating pillow cases off eBay. My hair is really.curly and I think.its more likely to come our if it rubs.
I also keep.a daily journal with updates on symptoms, times I have taken tablets and my temperature. This has helped me as I like to keep records and make lists. It was also useful in reminding me what tablets I had taken when!
Take care x

[Elorac56]

Hi everyone,

i had my first chemo yesterday. I have been reading your November posts which have helped me get my head around what is to come - it has really made me feel I can cope. Today I feel ok - I have been given extra anti nausea tablets as my stomach is prone to ejecting anything that disagrees with it! I used a cold cap yesterday and was told not to wash my hair for 24hours. Staff at the hospital said success with cold caps is variable so I have been researching head wear and wigs. I do want to work if possible when I feel ok. 

I have 6 cycles of FEC chemo at 3 weekly intervals. I had a lumpectomy in June and mastectomy and reconstruction in September. 

Any advice about anything will be greatly appreciated especially about what to expect over this first cycle. 

Best wishes to all over the weekend.

Carole 

[pernapus]

Hi everyone, sorry to lose you fiddlercrab, good luck with your treatment and i hope Christmas works out for you, however you manage it - it will be ok :-). Jojo45...i get nose bleeds, really crusty nose...recommended by BCN to use vaseline in nostrils to keep them moist (not nice feeling but definitely improved the number and feeling in round 2).

Jackspratt sorry you're feeling so sicky...i think the others have covered meds...but as I'd had bad morning sickness when pregnant i'm on emend, ranitidine and ondasetron (plus donperidon) all for sickness (and touch wood only felt a bit queasy a few times) so hopefully they'll get you sorted for the next round.

Round 2 went pretty well (was last Friday), after w days sleeping (Monday and Tuesday - snail88 i agree sleeping seems to be working best at getting through it) i was back at work on Thursday this week (I work from home though so no commute!) and back to picking kids up and ferrying them around by Friday. So feeling quite upbeat. Hair is still falling out, although I shaved it very short so don't really notice, worn my wig a couple of times out but pretty self conscious in it and sure it is just going to ping off!

Have a good weekend everyone and for those having rounds next week, hope it's ok. One step closer to the end of chemo (i'm focused that i'm at least a 1/4 of the way through 😄)

Hoping for a couple of feeling good weeks before the next round on 9th. Xxx

[capelmum52]

Hi ladies,

Hi seagull I am on the same as you and auntie jelly, FEC x3 Tx3 but I am HR2 negative ER +++.

Hair still intact at the moment, day 17 !! Does the cold cap really work, maybe .

Snail 888, really proud of you. !😊

Jojo, I am so sorry you are not feeling very well, I really hope it improves for you soon.
I have been really good this week apart from the heartburn and bright yellow poo, sorry a bit to much information there, I think it was as a result of the nuclear isotop and the CR tracer and 2 lots of antibiotics all being taken at the same time haha 😳
The goon news it I feel good worked all week and I think that the infection on the breast wound might now be healing properly too. Hair from neck down wards all gone, Brie and lashes still intact. Really weird that we are losing hair in different places.
Wonder what the next week will bring for us all. Chemo 2 on Wednesday. Looks most of us are on round 2 this week.
Ladies j wish you all a lovely weekend, whilst j am working 😒 I will catch up with you all on Monday.

Stay strong !

Love Fiona x

[Snail888]

Evenings are definitely worse. I had filgastrim injections too and they made me worse in the evening. I made it to the shops. Go me! Although I wore a snood over my mouth! Here's to a good weekend 🙂 x

[jacksprat2708]

Hi Gang,

Snail88 and JoJo45- thanks for the meds advice. Felt much better today. I've taken all the meds i should with lots of sips of water. Got kids off to school and did a glorious dog walk this morning. Had some visitors for a few hours which was lovely.

Have hit evening time and feeling sick again !!!!!!!

Anyway got my box sets all ready for tonight incase the steroids keep me up...

lets all try and have a good weekend ladies.

big hugs to you all

[JoJo45]

Got my son to cut the hair, gone for the hedgehog look, was falling out in handfuls and fed up of picking it up around the house, not quite brave enough to shave it off completely, have my wigs to wear out or lots of hats.  

Anyone else suffering nose bleeds, only lasts a short time but nose is constantly running, I think the nasal hair has fallen out too.  

Xx

[JoJo45]

Hi jacksprat, hope you are feeling ok.  I felt ill the evening after chemo day, was ok in the daytime but then it hit me.  Take all the meds and any extra anti sickness you need.  The worst days last about 5 days then I started I feel normal again.  Yes I did have a tearful time in the middle, which is more frustration I think, as I like to be doing and not sitting about.  Just go with what your body says and if in doubt all your nurses for advice.  Mine were very reassuring.  

Hugs 🤗 to you x