October Optimists??? 2013

[Guest user]

Sorry the brilliant and where can I get one is in relation to apandy's sleep cap poem! Still not got hang of posting on forum! 🙂

[Guest user]

Brilliant! And where can I get one?? x

[Guest user]

Hi all, hope you're all well and treatment is going as planned. 2 queries...hair started coming out two days ago - now have large bald patch at front of head. How long does it take for it all to come out and ls it ok to shave it off? Also, really, really under the weather today. Temperature, severe headache, sickness, stomach pains and general exhaustion. Have ended up sleeping most of the day - but this is week 3 of treatment cycle - which is supposed to be the good week?! Could how I am feeling still be chemo related or more likely just a bug? x x

[Shelly_8]

That's so lovely Anne, i love mine best too! x

[apandy]

For those of you not in the Facebook group, I posted this today.

Ode to my Sleep Cap

I have a little sleep cap
that keeps me warm as toast
I've lots of other headgear
but I love it the most.

When evening winds are drawing
I snuggle in my bed
But I can't hear your snoring,
my sleep cap's on my head.

And even in the daytime,
The postman's at the door,
I quickly grab my sleep cap
that's lying on the floor.

When first I lost my lovely hair,
My first thought was, 'Oh no!'
But now I have my sleep cap,
It really doesn't show,

I have a hat that's itchy,
A scarf that moves around,
I have a wig that's far too hot,
And fling it on the ground.

My sleep cap's on my pillow,
Or caught around my toe
My sleep cap hides all round my bed
And often doesn't show.

But I love my little sleep cap
It keeps me cosy warm
It wraps itself around my head
And well into the dawn.

I've many different colours,
In brown and green and red,
One for every week day
Of when my hair is shed.

I'm funny in my sleep cap
A swimmer or an elf
Although I don't look very glam,
It's ok (note to self).

I have a little sleep cap,
That keeps me warm as toast
I've lots of other headgear
but I love it the most.

[sarkev123]

Sounds good shelly. ..take care tonight and drink xxx

[Shelly_8]

Yes, hope all goes well Sarah.

I think my festive plans are to be snug, watching some good telly, ( +my niece lent me her entire Harry Potter dvd collection, bless her!), seeing family + friends, reading, walking on the beach and hopefully catching some comedy shows/ live performances ( providing nobody sneezes near me lol)

Feeling ok thank you Biddlybee, just constant nausea as usual but the tablets relieve it.

Glad you're starting to feel ok again.

Hope everyone's getting on ok.

Shelly x

[Biddlybee]

Fingers crossed for bloods on 13th Sarah! How are you feeling Shelly? So glad you scraped through ok. Hope your se's are minimal. I am on 3rd fec day 10 and starting to feel ok again but really needed the paracetemol this morning. Backache was like early labour pains!! Xx

[sarkev123]

Hi girls! Wow we have been busy on here. I've had 3 fec and still got 3 to go! Feel so lucky that I haven't had to inject myself...honestly don't know if I could!
Ooops shouldn't have said that, my next cycle is fri 13th!!! I will b praying for good bloods (!)
I said on the fb page; it's strange how we hope to be poisoned isn't it! It works great for me if I do manage on the 13th for xmas so fingers crossed xxx
Anyone have any nice plans over the festive season? X

[Shelly_8]

Hi everyone,

Thanks Potts for your information re neutrophils, sorry to hear so many of you have had to be admitted to hospital. Mine came up from 0.8 to 1.4 last week, and by Monday had come up to 1.5 so i just scraped by to have my 3rd FEC.

Apandy i will (touch wood) be starting Docetaxel on the 23rd, don't know yet about side effects but Nikki has a pretty good idea, so i kind of know what to expect. I've had conflicting information about hair re-growth, i'm still hanging onto my eyebrows and eyelashes so far, and was told they're unlikely to come out now...but i've also been told the Docetaxel can cause hair loss, meaning my hair won't start to grow back again until all the chemo is over.

So much conflicting information but maybe part of that is we're all individuals!

Lulu i will get round to attempting FB, i think i need someone to sit and go through it with me. Doh! But a lot of the girls seem to be back on the forum now, which is very supportive.

Take care everyone, be strong, we are getting through this x

[Ann123]

Hi Pots. I suffered with severe constipation after chemo 1 and yes got the dreaded piles. Told my onc who gave me movicol and to take it the day after chemo day , 2 sachets per day for a couple of days and never got bunged up again. Just had round 4. He gave me Anusol ointment for the pile that cleared up so all ok now. Hope this helps. Xx

[Joeyv]

Hi thanks for the tax comments they are really helpful. What are the symptoms of oral thrush. Thankfully I have never had it but as my tax is on 20th dec I would like to get something sorted just in case.

[Pots14]

Hi Anne,

 I agree with a lot of what Nikki69 said. On the constipation front, tax is meant to give you the trots. I seem to be normal with it but with fec I got a bit bunged up with the 2nd cycle. All bran and "go cake" (you'll find the recipe on tips for getting through chemo) got me sorted; tried the same thing with cycle 3 - no go! Ended up with suppositories (which you shouldn't have if you're neutropenic - but I was desparate and would have done anything). I'm still suffering now in that it's painful and I bleed everytime I go (am not sure if I have a piles or more likely a tear - need to speak to my GP, but am putting it off hoping it gets better on it's own) Have regular all bran now, movicol if I need it and my little stool for putting my feet up on to get into a better position. I never want to experience that again! - I'm sure you won't be stupid and leave it nearly 12 days like me! Sorry to talk about poo, but sometimes that's just what us girls need to do.Hope you manage to go soon.

Pots

[Lols]

Hi girls, just popping in from august thread , had last chemo today!!! Can't believe I'm saying that.
Anyway I've had t part everytime for 6 sessions, not sure if hairs growing back but although I lost a lot and shaved the rest off I've always had stubble all over head and never went shiny bald. I've constant muscle pain mostly in thighs but I find a good walk everyday helps even when tired. And boy do I get tired!! Very annoying. I always get oral thrush by day 5 but I now ask for a course or fluconaziole which I start on the Thursday and I find it really helps. I've hardly any taste at all but I'm still eating!! Not much fun though. But looking back its all doable not much fun and I've had some tears and probably more to come as se's will be arriving soon! The steroid part is a pain I asked onc if could reduce and he said no its to help with reactions and nausea, not had much nausea at all. Hang in there it goes quicker than you think, good luck girls xx ju

[Biddlybee]

Thanks Pots, very helpful. Those little white cells are so important, just trying to eat really well is sometimes a push but we have to look after ourselves. Yes there are aches with the bone marrow boosting injections but paracetemol really helps. After taking temp of course 🙂 all the best xxx

[Nikki49]

Hi Anne,
I'm from the September group and having my 2nd tax tomorrow.
I can only tell you my experiences as you know every one is different...... with regard to hair growth I'm pretty sure that I've got a very very fine growth of white bum fluff on my head (pre chemo colour was dark brown).
The nausea is zero, yay 🙂 (only one September girl has report feeling nauseous.
Constipation no 🙂 I think the anti sickness meds caused that.
Trouble sleeping, yes around chemo time due to amount of steroids - it's double the dose that u took on FEC & starts the day before chemo.
Yes taste goes to pot & oral thrush seems to be fairly common amongst the stars, it takes hold really bad if you get it get meds quickly.
I've suffered from weight gain all the way through, eating little and often on fec seemed to help with the sicky feeling, steroids on tax just makes me constantly hungry.
I've also got peeling skin on my hands, it started out like heat rash, really itchy but has now gone very dry, I'm constantly putting on hand cream, e45 and even bio oil
Take care xx

[apandy]

Thanks for the info, Pots. It was me who mentioned the aching I believe. I think I have been relatively lucky so far, both with side effects and the neutrophils. At least I haven't been admitted to hospital yet, as some of our group have. But for me, it is almost as if there is a different side effect every day/week. Today's issue is constipation!

Some of us will be starting tax soon (I am going to be starting Doectaxel on 18th). I know that there is less nausea on this drug, and more muscle ache. But what about the other side effects (constipation, indigestion, trouble sleeping, taste changes, loss of appetite, weight gain/loss etc). Do you know how all these other symptoms change? Can we expect our hair to start growing back once we start tax, or does it take longer?

Regards,

Anne

[Pots14]

Hi Shelley8 and October Optimists

just popping in from Sept Stars. am on fec-t and part way through 1st tax

With my 1st fec I had 5 injections (called GCSF - it's just a generic name, but it encourages your bone marrow to produce while blood cells) from day 5 to 10. It didn't help. My neutrophils (the main type of white cell dropped so low they couldn't detect them and I was admitted into hospital for isolation, more GCSF and intravenous antibiotics for a few days. They let me come home when my neutrophils were 0.9. In my area they will give you the next chemo if your count is 1.5 or above as long as the Consultant is happy (although they prefer it to be 1.7).

I specifically asked my oncologist what I could do to give my neutrophils a boost and the answer is you can't. Eating as healthily as you feel able to will help you generally, but you might want to save your money on loads of supplements etc. My injections were increased to 10 days every cycle, I try to keep away from ill people during the infection vulnerable days and that's kept me out of hosptial and my white count has managed to recover enough for the next blasting. If it  hadn't, my oncologist talked about a dose reduction (which I was not keen on or applying to see if they could get funding for another type of injection which might have worked better). Fortunatley for me we haven't needed to go down this route.

Hope this is of some help.

Pots

ps can't remember who asked, but yes you do get achy with the injections.

[Jill1969]

Hi ladies , I'm sorry I haven't been on here for a while, keep using the fb group! I know what you mean about the confusion over tnbc, lulu has explained it best, much of the research is a little conflicting and complicated x Jill

[Shelly_8]

Thank you Lucy,

The rabbit is fine!

Shelly

[Lucy_BCC]

Hi Shelly

Is that picture ok for you, there are lots to choose from in your profile area under avatars if you want to choose a different one

Best wishes
Lucy BCC

[Shelly_8]

Thanks Anne,

you're doing better than me then....hope mine come up over the weekend....keeping snug and warm and eating and sleeping.

Ps Dear Moderator ladies, is it possible i could have a different picture under my name, as i'm not sure what it is but every time i look at it, it reminds me of a hairdryer (which i packed away ages ago, along with the straighteners, brushes, etc) and a head with some spiky hair on!

Thank you!

Shelly x

[apandy]

Hi Shelly

I'm taking the neulasta injection for five days after each chemo, the same one as biddlybee. After chemo # 1 I was found to have neutrophils of 1.7 and since I started the injections they went up to 2.7 after chemo 2, Not a Big increase but clearly going in the right direction.

Has anyone found the injections make your legs feel a bit achy?

Anne

[The]

Thanks Lulu, how's your treatment going ? Xxx Tracy

[Shelly_8]

Thanks,

I think i have definately developed the chemo-fog brain thingy.

The injection i self administer 24 hours after chemo is Neulasta, to 'reduce the duration of neutropenia' ( copied it off the information leaflet! ).

Then i take steroid tablets for 3 consecutive days.

Shelly xx

[Lulu34]

Shelley the injection you get 24 hours after chemo is unlikely to be steriods as they are generally given as tablets.... Dexamethasone.... The injection in your tummy is likely to be gcsf as well. Theres tols of different ones but the one-off jag is usually neulasta. This the one i had.... But maybe you are having steriod by injection but seems a wee bit unusual

Also ladies check with your onc before taking supplement like vit a, as i know somethings arent recommended on treatment, well some oncs dont recommend you take them. 🙂

Lxx

[The]

Hay Shelly thanks for the list it's really helpful xxx Tracy

[Biddlybee]

Phew you have been busy, thanks for the list, I think I have most of those in my cupboards except for zinc and melons and ginseng. Will get some too! Manuka 15 is the one I take, also black strap molasses for iron, been a bit of a veggie too, but am now eating meat instead of quorn. But I am not a good example of this stuff working, with my poor count 😞 another friend mentioned papaya leaf extract too, but she buys it from usa. I am not too keen on buying stuff that isnt UK sourced. Anyway, maybe zinc melons and ginseng will do the trick eh. Thanks shelly xx

[Shelly_8]

Thanks again!

I found the following information which might help, i know we're all different but anything's worth a try. Ps i don't want to mislead anyone, it's only what i've found on the internet.

Vitamin C, zinc, garlic and green tea seem to come up a lot.

Other things are vegetables like broccoli, pumpkin, carrots, asparagus, beetroot, spinnach, cauliflower; fruits like melons, oranges, figs, strawberries, also dairy products, yogurt, walnuts and almonds, lean meat and fish (i'm a veggie tho'!), Omega 3, foods containing beta-carotene, vitamin A, selenium, olive oil, ginseng, and plenty of water!

I've been having Manuka honey since i was diagnosed, i don't think we can go wrong with that if it's the good stuff.

It also says to restrict sugar-rich foods and vegetable oils with polyunsaturated fats.

Oh and regular exercise, and reducing stress (yeah, right!) as well as common sense things like safe food preparation and regular handwashing.

Phew! Think that's about it! xx

[Biddlybee]

Also Shelly there are other ladies on fb that have different injection regimes for their particular condition, may be able to shed more light. Private msg Lulu in this thread and she will add you to it. I have been eating plenty of protein and greens and manuka honey all in the hope of increasing the count. Any further suggestions gratefully received! Hope your side effects are tiny ones too hon xx

[Shelly_8]

Thanks Biddlybee,

Hmmm, i didn't know anything like that was available, but hopefully my bloods will be back up again by next week. There seems to be a lot of conflicting information re diet, etc as well, to increase white blood cell count.

Hope your side effects are small ones,

Shelly x

[Biddlybee]

Hi shelly, the injections I have are called Zarzio, a stimulant for the bone marrow to produce more white blood cells and neutrophils. It is a pack of five, which I self administer from days 5-10. I dont have a steroid injection, just steroid tablets. X

[Shelly_8]

Thanks Biddlybee,

What injections do you mean? I have a steroid injection 24 hours after chemo, is this what you mean or is there something else?!

Bit confused, glad you had your FEC 3 yesterday, i guess i thought 'cos the first 2 had gone ok, the others would but it don't work like that!

Shelly xx 

[Biddlybee]

Hi Shelly, I was in that position too. My fec 2 had to be put off for a week. Neutrophils came up from 0.92 to 3.85 by the following Monday. So hopefully you will be ok. Since then I have been given injections to boost them. However Fec 3 yesterday was only just ok at 1.7. Got done ok eventually though, took a bit of finding a vein. Constant worry isnt it. Glad you are happy with your wig. It is great to a complete change! All the best xxx

[Shelly_8]

Hi Lulu, hello everyone

It was supposed to be my 3rd FEC today but neutrophilis too low. Gutted. Thought i would be halfway through it.....has anyone else experienced this, and does it generally just come back up again? Grrrrrrr!

On a positive note i have a great new SHORT wig which i love sooooo much. The long one didn't feel right anymore. So i have made the transition to short hair after nearly 30 years of long hair.

Hope you're all doing ok.....hope i have my FEC next week.

Shelly xx

[Lulu34]

Hello girls

So sorry iv been neglecting you all.... Iv just looked back and the last time i was posting in this thread was about 3 weeks ago... Naughty me!

If anybody is wanting to join the OOs on FB just send me a pm.

Leamangobird i also have a triple neg FB group... As i have triple neg and there have been quite a few new people joining up. Basically triple neg tends to occur in younger women and usually grade 3... Most younger women have a potential longer life span than your average 70 yr old so recurrence in younger women could potentially shorten their life, also grade 3 tumours tend to be more aggressive and more likely to grow faster and also to have involved nodes and as you say they dont have the benefit of longer term treatment like herceptin or hormones. TNBC tends to have a higher rate of recurrence than hormone pos bc in the first 3 years by about 5 years its the same as hormone pos and by 8 years its actually much lower... So long term its better.... Most people with TNBC dont get recurrence though... Although im one of the unlucky ones who has.... TNBC also has a link with genetic mutations and im a BRCA 2 carrier. But TNBC tends to respond better to chemo than hormone pos BC. And you dont have to take hormones for 10 years which brings their own set of side effects... So although TNBC is seen as the bad BC it also has some benefits that ER+ BC doesnt have.

I also have a hickman line in.... It wasnt much fun getting it inserted, which is done under local anaesthetic and wee bit uncomfortable for the first two or three weeks but now its just part of me.... A very dangly part lol.... My veins are appalling and this is my third time on chemo and im having it fairly regularly... Twice a week! And i only had one good vein and i think even that has given up as the last twice its been used it wasnt playing... Luckily most things can go in and come out my hickman.

Hope everything is going smoothly so far.

My treatment on the ENCHANT trial is going well... I finished my first cycle and had a repeat PET scan which showed stable disease... 1 met is 1mm bigger, and 1 is 1mm smaller and the other is just the same. So this means i can continue on the trial. On my week off treatment i went to work, not my normal hours but did manage to get quite a bit of work done. I unfortunately got a gum infection just before my second cycle so it was delayed and had ABs and started my second cycle on tuesday... Not many side effects so far just extreme fatigue on chemo days... Tues and thurs.... My hickman line wouldnt bleed on monday either so ended up having to go to hosp to get it flushed with something called urokinase... Which done the trick.

Also attended a ball in. Leeds last weekend due to being off treatment although couldnt even have a sip of bucksfizz at the reception due to the ABs but had a great time nonetheless.

Im off to glasgow tomorrow for lunch with some of my breast buddies and having a chill out day on sunday before week two of cycle two.

Promise to pop in more frequently in future.

Lots of love lulu xxx

[Teffy]

Welcome leamangobird and Shelly
Sorry I can't help with Hickman line either, don't have one. But there are plenty of ladies on Facebook who I'm sure can help.
Hope to see you both there soon xxxx

[Biddlybee]

Hi Leamangobird, there are some ladies in oct optimists who are triple negative too, maybe scroll down / or do a search of theses posts and you will find them, and they can give you some more info? Otherwise def contact the forum as advised by Lucy. Shame you havent got a contact name/tel for your breast care nurse 😞 Hugs xoxo

[Lucy_BCC]

Sorry double posted!

[Lucy_BCC]

Just to let you know that the helpline is open Saturdays too 10-2 if you get a free moment!

Lucy 

[Lucy_BCC]

Just to let you know that the helpline is open Saturdays too 10-2 if you get a free moment!

Lucy 

[Guest user]

Sorry Lucy didn't receive message in time to call. Will try next week x

[Guest user]

Thank you Shelly, I think it's a long time too. Not been given a named nurse, coordinator or keyworker tho believe we're supposed to have one. Will follow it up with unit on Monday. Hope you're getting on ok x

[Shelly_8]

Hello Leamangobird,

I'm a newcomer to the forum like yourself; i haven't joined FB yet but intend to (once i know what i'm doing!).

Wish i could help you with your query but unfortunately not that clued up on all this.

Mid January is a long time to wait, do you have a breast care nurse who can advise you? Mine is great, i took a list of questions as i needed clarification on  some things i didn't understand, and she explained things clearly.

Hope you are able to speak to someone who can give you proper information/advice. I think if we have information that we are able to understand, the more able we are to make informed decisions.

Take care,

Shelly

[Lucy_BCC]

Hi Leamangobird

Our helpliners are around until 5pm if you are able to call to talk your queries over?

0808 800 6000

Take care

Lucy BCC

[Guest user]

Thank you all for the lovely welcomes I've received 🙂 Am still getting hang of using a forum so please bear with me, lol. Am now confirmed as Triple Negative. Bit confused by what I've read as seems to suggest worse prognosis or higher related risk?! Is this because can't have tamoxifen or similar and therefore return rate could be higher or is there more to it? Not seeing oncologist till mid Jan so not sure who to speak to. Any thoughts? X

[apandy]

Hi leamongobird (what a great name, it conjours up some lovely images!)

Hope to see you in our Facebook group soon,

Best wishes,

Anne

[sarkev123]

Welcome lemonbird.

i also haven't had a line fitted but hope we can offer you support in our little group.

Please come over to fb if you can. 

Sarah x

[alabamasam]

Hi Leamangobird
Sorry you are in this situation but glad you have found us, if you want to join the November Facebook group please just private message me and I can tell you how. I have my first chemo tomorrow so just out doing my last tesco shop now then going to have a wig fitting at 1. I'm cold capping but having the wig for standby if I find one that suits
Sam xxx

[Biddlybee]

Ps I havent had the line fitted, but there are several others who have them and can tell you what it involves x