June 2016 starters?

[sonyacheet]

Hi ladies.
Buster your message was so lovely. Thank you for posting that.
Hi Hazel hope you are OK.
I'm not feeling too bad this morning but Im not going to push myself as I know things can change very fast.
Have a lovely Sunday everyone.
Xx

[Sue H-S]

Hi Julia S

I am having these injections, too - and absolutely no side effects. Sometimes it may be easy to mix the side effects of chemo up with the ones of the injections. But they are so very important to ensure that our white bloodcells regrow quickly to keep us safer from infections.

They cost the NHS around £55 per injection - I am having 8, per cycle x 6 cycles = around £2,640

So I am not too surprised they only tend to give them, when necessary.

I have researched a few bits and my chemo treatment alone just with those injections and without the additional medications costs the NHS around £10,000 - if you then add the op, the scans and the meds - Yikes - we really are VIPs!

Hug

Sue xx 

[buster1]

Thanks for all kind messages. It's lovely just to hear from you. I now have thrush following all the antibiotics I have had. I don't want to contact a professional about this (I end up in hospital every time I ask advice 🙄) and I would normally try tea tree oil (although not had thrush before) for a lot of things like sore throats etc, but unsure if it's safe to use with all the other drug induced SE, eostrogen sensitive cancer etc. Although I do laugh sometimes at my hesitance to use a natural product or eat soya whilst at the same I'm allowing poison to be pumped directly into my veins and take a multitude of drug combinations.

Oh girlies, so glad we are in this together I really don't think I'd get through this without you all. I wish none of you were going through it but hearing your different strategies and remedies etc does help. Bottyboo I too have tried to pm you several times but I think a normal email will be better as they don't seem to send. Sorry to hear about your additional issues down below. That has surprised me most, the amount of side effects caused by other side effects that I wasn't even aware of. I tried to prepare myself before starting chemo and thought I had, but I hadn't got a clue really. Who has until we start, but I suppose because we are so different there will be surprises along the way. My neighbour stopped me the other day to say 'everyone's getting breast cancer nowadays, you're nothing special you know' I think it was his way off telling me not to worry ! But all I was thinking was 'you haven't got a clue'. We are all special, and different, and the same, and brave, and scared, and vulnerable,and tough, and fragile but most of all I know without even seeing you all that you are beautiful. Really beautiful because inside of you all is soul. Amazing resilience, compassion, and love for each other . Sorry to be gushy mushy, it's just the way I am. Say it as it is! But I truly believe it, I just need to remind myself I'm one of you too. All I can see is my toad chin 😏Xxxxxxx

[Sue H-S]

Hi Bottyboo,

It may be a very good idea to check in with your GP - thrush and vaginal atrophy can be side effects. Thrush because of the interferance with our immune system and vaginal atrophy due to loss of estrogen.

The antibiotics you have been having could have caused thrush, too. So get it checked out - for both there are medications. Just makes sure that they know you are on chemo for BC so nothing wrong is prescribed.

Hus

Sue xxx

[lightfootpatricia]

Morning 

I have just picked up on this thread. I have lobular breast cancer and had my first chemo 12 days ago. I fasted for 84 hours around the chemo. I felt like I had flu, had headaches, felt slightly suck, my head felt weird and I lacked energy, but I never went to bed during the day, walked, did social stuff and did not feel too bad. I will definitely fast for the next one.  I have put back the weight that I have lost and intent to gain a few pounds before the next round.  Has anyone else fasted.  Pat

[AngeNut]

Yes the lovely nurse showed us and said that would happen. You can't lose a needle inside you.

It only needs to go under the skin, doesn't it.... 

[AngeNut]

As I said I had my 1st chemo yesterday.

It went smoothly and I felt OK if a bit muzzy headed. I've eaten well. When I slept, I slept well, but once awake, that was it. Quite a lot of burping so kept bowl by bed. Not usually sick, so I thought - if the bowl is there I won't be, if it's not, I'll want to be sick. I ended up taking 2 paracetamol for the 'hangover' headache and managed to sleep again.

I had a surprisingly good day, felt quite good except for weird chemical taste rising up in mouth and slight head now and then.

There are so many alarms on my phone for pills ... including antibiotics given on Wednesday by surgeon for a rock hard and sore, red boob. I went to get underarm drained, but nurse called surgeon in who was holding a clinic. Well he squeezed and pushed underarm and on the boob to draw out fluid. He prescribed antibiotics to stem any infection. Underarm is great now, 1st time in 4 and 1/2 weeks. But large hard lump back in breast so mentioned it yesterday and they are making another appointment with surgeon next week. I'm not supposed to see him until June 2017!!!  

Feelng not too bad today, I was like the Duracell Bunny, pottering, sorting and tidying - don't know if it was the steroids or the fact it was our 1st day IN for ages (weekend away and 4 hospital visits this week) and I couldn't stand the chaos.

Hopefully being shattered now, my battery is running out ...  sleep  💤💤

Have a good night Ladies! 

Ange X

[sonyacheet]

Hi AngeNut.
I did my first injection today and it was really easy to do. It hurt a little bit but once it the full amount had gone in the needle retracted back in to the strange.
Good luck xx

[sonyacheet]

Hi girls.
This may sound really silly but my head has been really itchy this afternoon and strands are coming away. I'm only one day in from my first EC. It's far too soon isn't it? My hair is very fine anyway and I am all prepared with Lucy my wig and scarves. I've cut my hair to suit my wig. But it's strange seeing it happen.
Any advice xx

[AngeNut]

Nobody told me about injections, but I saw that some of you have had them.

I had 1st FEC yesterday and they just said:  - (along with the boxes of pills to take home) 

"Oh and there is a surprise for you in the fridge - a box of injections!" 💉💉

Whattttt! I have to start them tomorrow (48hrs after chemo). I don't think I can do it myself but my husband will be quite happy to stick needles in me! 🤓😷

The nurse said "Just pinch a bit of fat from around the stomach" .. Well there is plenty of that!! 

My Slimming World regime has gone awol! 

[AngeNut]

Beautiful!!!!

I want those eyebrows - probably needed them these past 10 years!! 

[RosieFlower]

Hi Bottyboo.

You may have something called BV - Bacterial Vaginosis, which can give off a bit of a whiff. Its just an imbalance of the vaginal flora, and can go away on its own accord and right itself, or can be treated with antibiotics.

xx

[Julia S]

Hi Kim,

not sure about that one: was thinking 2 days before & 1 after, so could still eat 4/7 days?

Have now read the latest reference comparing Docetaxel & Taxol long term:

Long-Term Follow-Up of the E1199 Phase III Trial Evaluating the Role of Taxane and Schedule in Operable Breast Cancer http://jco.ascopubs.org/cgi/doi/10.1200/JCO.2015.60.9271

and it turns out in the long run 3 weekly Docetaxel is better for hormone positive HER2- women, which is my case, than weekly Taxol. Haven't made final decision yet.

If you have questions about the fasting experience (and why the chocolate! Science) let me know.

X Julia

[Julia S]

Hi Bottyboo,

no such experience, but just writing to say it's something you (and the doctors) should take seriously since an infection is an infection is an infection, no matter where. So my advice would be to get it checked out!

I suffer from chronic thrush an have been using yoghurt (yes, officially recommended by NHS) to keep that under control, but since chemo diet prohibits any live culture yoghurt, I doubt they allow it in our case. They may have other recommendations for safe creams to keep your labybits more comfortable in the mean time, if it turns out it's not a infection that needs to be treated.

[Julia S]

Buster1 that all sounds really horrid. I hope things get at least stable so you can get on with the treatment and start seeing the end of the tunnel.

Anyone else having bad side effects from filgrastim injections? First of all can't get myself to do them, so relying on kindness of neighbours/friends (my husband will try tomorrow - another recipe for divorce). Second, they give me horrible back bone pain, can't really walk, only hobble, can't be active at all.

I'm quite surprised at these: are they standard, is everyone having to do them? I'm supposed to do 7 days worth, starting at least 24h after chemo. No one had ever mentioned these injections and (so far) they have the worst side effects! Am now taking paracetamol but checking temperature first. Any other experiences or tips?

Back to bed and netflix,

Julia

[Bottyboo]

I'm so sorry for this personal question ladies but do any of you have the side effect of sore lady bits? I am quite bald down there now, actually lost that hair before my head hair but it is so sore and sometimes a bit 'whiffy'. Sorry for tmi but it's bothering me. I suffer with lichen sclerosis anyway and had thrush when I started chemo due to having had a month of antibiotics. Just got on top of that now this. It's a different type of sore to anything I've had before.
Any ideas?
Xxx

[Bottyboo]

Hi Deb. So pleased to hear from you. I was thinking about you all yesterday and today and had mentally composed a pm but I'm suspicious they don't always get through. I'm so sorry you've had a bad time. Have they delayed your 2nd chemo? They did mine by a week and after discussion with the oncologist I'm now having 4 FEC instead of 3XFEC and 3xT. So now half way through. I have a 'chin' anyway so haven't noticed any difference. My main issue is the horrid taste and texture of the inside of my mouth. It is truly disgusting.
Love and hugs
Sarah xx

[Kimucoughdrop]

Hi Julia

i am interested in your fasting, I think I will give that a go. If you were to do weekly T how would you do the fasting as you would not eat much for four days out of seven? 

Kim xx

[Anon16]

I'm still craving - mainly Mexican food???

Plus on the opposite scale I look like I've got a suntan, like my face pigment has changed or something.

Think I may have had both of these things when breastfeeding my daughter so maybe it's hormone linked

[haz25a]

Hi Sonya,

So glad you've posted and that the first treatment went relatively well for you. I've been thinking about you as I remembered your first chemo was yesterday.

My first one will be on the 4th July. My treatment plan arrived in the post today with the dates of all my appointments. As I'm also having Herceptin injections my last treatment date is the 29th June 2017. At least I can celebrate my Birthday next year as I'll be having my pre chemo assessment on the 29th this year.

P.S. I AM bad tempered and moody! Lol

Take care.

Love Hazel. xx

[Anon16]

Big hugs Sonya and buster xx

[Belle]

Just want to say much love to you Buster! I'm not surprised you're feeling miffed. I would have had several full on tantrums and thrown all my toys out of the pram long ago. Miffed is the least of what you're allowed to feel. Sincerely hope they get you sorted soon. It's bad enough without all the additional problems you're having 😞

Hugs,
B xxx

[Sue H-S]

Hi buster1,

you really ae being put through it, aren't you. Glad you are holding up mentally.

I hope they give you the G csf injections moving forward, unless you are already on them.

Your skin - is challenging, as this may be due to the loss of estrogen in your body and our skin is much more challenged during chemo, too.

Masses, and I mean masses of moisuriser - preferrably paraben free. and body moisuturiser, too. I am using the Palmers Cocoa products and they, so far, are doing the trick.

Hug hug

Sue xxx

[buster1]

Hi girlies, glad a lot of you are sounding upbeat. I've only just come out of hospital after nearly 3 weeks in and out for a few 'blips' following my first chemo. I've been ok psychologically trying to stay strong. Initially I had an infection so needed iv antibiotics. Then became neutropenic so couldn't come home. Then was discharged and then rushed back in with chest pain. Kept in as certain tests were suspicious. Then discharged again and read admitted with cellulitis in my reconstructed breast 🙃 Which is still hard a a rock. I was still relatively ok with this as others suffer a lot more with the yucky side effects. BUT, after losing my boob, then my hair, etc etc, my chin now looks like a 80yr olds and I've had enough !!! My skin is so saggy around my arms but my chin is horrid. Anyone else had any strange skin changes. Honestly it's like a toad and nobody warned me. I'm still ok really but do feel a tad miffed at yet another thing to make me feel ugly. I hope it is only temporary. Love to you all. Keeeeeeeep fighting xxxxxxxxx

[sonyacheet]

Hi ladies.
Had my first EC yesterday and so far all I can say is that I feel strange. Different so to speak.
My visit to the hospital lasted most of the day as my anti sickness drugs had not been ordered and we diddnt know we were supposed to collect them from the pharmacy before treatment. The nurse I had was absolutely lovely and kindly went through everything I should expect from the treatment. Whilst waiting for my drugs to arrive she was able to take her dinner break so I think she was quite happy.
When I saw the syringes I was quite worried and as she administered them it seemed like it was going in very fast. I felt very woozy and spaced out during the C syringe. She said this was normal. I got a very prickly bottom and my head got really itchy. We diddn't end up leaving till after 3:30. The woozy feeling carried on all last night and I diddnt end up sleeping very well.
This morning I have taken all my anti sickness drugs that they have prescribed. I have yet to take my daily injection. I was hoping a district nurse would come and show me how to do it but apparently the nurses on the ward feel it's better that we do it ourselves and only contact the dn if we need help with it. I'm still in my pj's sitting on the sofa. I just feel really lethargic today. Food tastes really salty but I'm managing to eat. My mood is OK. I'm not particularly bad tempered but sometimes it's easier to raise my voice to get the hubby and kids to listen to me. They think I'm moody lol.
Well I hope everyone is OK today.
Lots of love Sonya xx

[Julia S]

Hi All,

had my first chemo (EC) on Thursday 23rd. Had been doing the fasting thing (water, tea, coffee, herbal teas, and some chocolate if I felt too woozy, for 3 days before and 1 after chemo) and I must say so far I have not been suffering much from nausea. Anyone else had that experience? I just feel tired and a bit out of sorts - and that could be from staying up watching Brexit disaster unfold!

Also did cold cap and it was fine (for me) or maybe not working (not cold enough)?

Has anyone else been offered choice of either 3 x 3 weekly EC followed by 3 x 3 weekly docetaxel vs 3 x 3 weekly EC followed by 9 x 1 weekly Taxol? I'm worried about the extra nasties of docetaxel (permanent hairloss among them, oog), but not convinced the 9 x 1 weekly Taxol is really equivalent in terms of outcomes.

Will go get some sleep now, hopefully

Julia

[Bottyboo]

Belle I can't face chocolate!! Or coffee! Disaster!!! Hopefully it will rectifyou along with the gin issue.
Emma lovely post!
I watched The Big C and Me on catch up last night. A firm reminder that however rubbish we feel now it is worth for our chance at a future xx

[Belle]

Nice idea!

[Sue H-S]

Hi ladies,

Wow! Met this Triple- lady whilst waiting to go into my oncologist appointment today. Semi permanent brow tattoo - before she started active treatment - and she has now completed it. She is using body glitter rubbed on her scalp to hide the initial patchy regrowth.

What a lady! Apologies for the large pic - but  the 'hair do'might be easier to see.

Hugs to all and have a great weekend and few side effects

Sue xxx

[T]

Hope you girls have a good weekend - gin free for some:-( and hopefully sick free for all 🙂 x

P.S No-one has made me feel down - just amazed how awesome and strong you all are - such an inspiration 

Big hugs x

[Belle]

Hope all goes well Ange,

B x

[AngeNut]

Love that - worrier to warrior! 

Let's add WINNER, too! 😀

[AngeNut]

Oh I love a nice gin and tonic with lime ..... 

I also have some nice prosecco waiting - left over from daughters wedding stash.... 

1st FEC today, just home - so we will see how it pans out! 

Dont think I will be doing spirits or wine, but a small glass of prosecco 'might' freshen the mouth... 

- not for quite a while yet, though! 

[Taran]

Beautiful post Emma!xx

[Belle]

Afternoon all,

I'm on the countdown for Chemo 2 now and have just planned a massive cookathon over the next few days to save me cooking for the first week.  Given how nauseous I was last time, I'm making a lot of ginger snacks for nibbling.  I've also got my best friend coming to stay this weekend so am anticipating a lot of raucous fun and silliness 😄

I hope those of you who started this week are beginning to feel more human and those who are about to start sail through.  Don't forget it's Wimbledon from Monday so there's a perfect distraction on the tele laid on for us by the BBC - hurrah!

B x

[Lucy Lu]

Emma111 great to see you have gone from worrier to warrior so quickly. You are amazing xxxx

[Belle]

Well said Emma!

[Emma111]

Hi everyone and very best of luck for all those going on today for first treatment. ... and I just know you will all come out saying 'phew, that's not so bad'

I've woken up day 3 to a nice day, going to enjoy the day and feeling good 😃

Tinky, before the start of my treatment I felt the same as you thinking I'd be 'bed bound and really ill' .... I can assure you that so far, I certainly haven't been and I can't see anyone else has been that bad on here either. You will get through this i promise. The unknown is always scary but reality isn't.
Never panick looking at all the side effects. We've all had a paracetamol in our life time for, say, a headache , if you read all side effects on a packet of paracetomal anyone would panick, but people don't think anything of it and are fine. Anyone would be very unusual to get every side effect, you won't get every side effect .... promise! You CAN and you WILL do this ..... like we all are💪 And also remember even if you do get a side effect, it will pass and it's not forever. In the long run this treatment is helping us get better .... that's the most important thing! Xx

[Anon16]

Hey T I'm feeling fine today so to have one bad day after treatment but manageable on the drugs is all good. Sorry if I've put a downer on your thoughts below. Going to take it easy today then get back out there this weekend. Xx

[Belle]

Morning T,

My feelings are the world is ALWAYS better with gin 😄 Sadly, I'm just not feeling like drinking it at the moment and that's got nothing to do with feeling poorly - feeling really well now.  I've just temporarily gone off it.  This is shocking in the extreme for me so I am confident that it is temporary.  I bought a lovely new bottle I'm saving for after treatment.  At the moment it's sitting on my dresser and I admire it every morning.

Not everyone feels poorly, btw.  Lot of people get away with minimal side effects and feel fine.  

B x

[T]

Morning lovely ladies

You have made me feel very welcome and not so alone so a huge  THANK YOU Xx Although I must admit it has been hard to read how poorly and low some of you have been feeling but you still manage to advise us newbies and keep a sense of humour x  I so hope you're feeling a bit better today - big hugs x

The advise is great and LOVE the gin & tonic lip balm idea x Off to get some bits and bobs now.

BIG HUGS xx

[AngeNut]

Hi Ladies,

Well I've had my intro and assessment - actually had nice time chatting with patients and asking questions. Had the wig talk and even tried a random sample on - it looked so great, took a photo and sent it to my kids -

I got approval, I am so encouraged with that. One son thought it was my real hair with new cut! I suppose it was all getting them and me used to the idea and the thought that their mother isn't going to look too odd, or too much of an embarrassment, after all! 😀

I had the PICC inserted today - my goodness I hardly felt a thing - it went very smoothly and the staff were so lovely explaining every step too. It was over in less time than they said. It's just a bit sore where inserted, understandably.

I am calling it: 'My badge of honour, which I will proudly wear (along with my sporty new haircut!) - to show that I am joining that elite band of brave warriors who go to war to 'Kick cancer with chemo!'

You know girls there is a sort of uniform/ style here, isn't there - with the hair thing going on. 

When I saw people at different stages of hair loss/growth today, I thought - fighter, winner, warrior, brave .. etc 

Ist FEC dose tomorrow .... 

I am proud to be one of you and hope when chemo and reality kicks in, I can do you proud! 😜

[Bottyboo]

Oh Marije bless you. My daughter had that really bad when she was 2. She's now nearly 19 and works in a nursery and came home with it again in March!!!!
She also brought a kindly shared tummy bug home 5 days before my 2nd chemo and it was so hard not looking after her but she wouldn't let me. Her boyfriend stayed over and helped her.
Ice lollies are the one biggest thing I recommend for chemo. A good way of getting fluid in when the thought of drinking makes you want to gag. Also I craved them and the chemo nurse said craving ice and ice cold things is a sign of anaemia. Sure enough as the blood levels stabilised in the 2nd week I didn't touch another until the 2nd cycle. This week they have been my best friend again.
I am very lucky on that both my cycles I didn't suffer the horrendous sickness but the thought of anything going in my mouth, food or drink, made me want to gag.
If you do feel sick coca cola, NOT the diet variety, helps with nausea.
Well done to everyone though who got through their first one this week.
Love and hugs xxxx

[Bubbles62]

Hi Julie G, I have 2nd Fec tomorrow. Hair has been shedding since Monday, I read somewhere that this could continue until about day 7 after 2nd Chemo then it should slow down. So.. I am going to see how I get on with cold cap tomorrow as I feel it's worth a try, it's so upsetting seeing how much keeps coming out 😥  I hope your wig fitting goes Ok. I chose a wig about a month ago, my sister and I went to a lovely salon and had a great time trying on the different styles, even though beforehand I thought I would be really upset. It's another new experience that we would rather not have to go through, but we can take back some control. I hope you are feeling much better now,  I am hoping that my medication is going to be tweaked to help with the nausea. Will let you know how it all goes Love Bubbles x

[haz25a]

Hi Tinky

Yeah, the waiting is horrible. I'm going to phone my unit tomorrow actually because I don't have an official start date! My pre chemo assessment is on Wed 29th June (My 48th Birthday, Groan!) and they said I would start "a few days after that", I need to plan things so I want an actual date.

I'm trying to be as organised as I can be by getting things in as I'm imagining to be "bed bound feeling really ill" for most of the time. I have an Anxiety Disorder so overthink everything and my glass is always half empty.

Thanks for reassuring us that are waiting to start that it's doable.

H.x

[Belle]

That was a bit tricky and I sent the link to my sister and bowed to her judgement in the end.  The one I've got is actually darker than my hair colour but I'm still happy with it as it's in the right range.  I'll do my best to sort some pics out this weekend 🙂

[Alex2016]

Girls, thank you for advice. I'm checking these all out. Deresina products look good. Belle have already viewed some of your pics on that thread and you look very cute! Would love to see pics with fringe, as think this could work for me. Did you find it easy enough to pick colour of fringe?

[Tinky]

Hi Emma

hope your new regime continues to help, also hope you are so proud of yourself for going from nervous to positive to encouraging other people!   I hope those still waiting for first treatment will try & believe us that it is really not too bad, & we are saying that because we have been there.  Waiting is horrible & you want to be constantly doing something towards it - I remember spending a whole afternoon researching nail hardeners, which was ridiculous, but understandable.

My unit was really hot (temporary portakabin) so blanket, bed socks etc. I had taken all unnecessary!  Dressing with layers might be best, then you are ready for anything.

x

[Belle]

Hi Alex 2016,

I've just got a fringe from Wigs4u http://www.wigs4u.co.uk/pages/headwear/index.asp?cat2=Fringes and I think it could work quite well.  I need to get some velcro tape to use it in more than one scarf but once I've had a play with it, I'll post some pics.

Also, take a look in the Chemotherapy - Tips & Tricks thread https://forum.breastcancercare.org.uk/t5/Chemotherapy/Chemotherapy-Tips-and-Tricks/m-p/1017289#U1017... as there are quite a few posts about hair & scarve etc.

And then there's the Baldly Beautiful YouTube channel: https://www.youtube.com/channel/UCSh7toEk1ZUMO989HLBsuog which has at least one video on scarf tying.  Andrea Pelligrini is a make up artist who made these videos while going through chemo herself.

Hope that helps,

B x

[Taran]

I've ordered quite a few things from deresinaheadwear.com Lovely quality, pretty and comfy.xx