hi ladies
hope you all got to enjoy some of that lovely sunshine yesterday. cancer or no cancer a bit of blue sky is always good news.
well my chemo never went ahead last thursday as my blood counts were too low so rebooked for last monday but same story so now we are trying for friday. gggrrr. I kicked up a fuss and am now at least getting GCSF injections which should boost my blood counts - picking them up from the hospital later this morning. wished they’d given them to me before the delay happened rather than after. those of you on docetaxol i would make sure you ask for these injections from the off as some nhs trusts seem reluctant to hand them out until after you’ve had problems.
despite only having had one dose of my new chemo my nails seem to be going downhill fast - have got big splits in them and am terrified of snagging them on something and ripping them (OUCH!). so have got plasters on those affected - it’s a real sexy look especially when combined with the skinhead hairdo!! Karen thanks for the heads up on black nail vanish i might try that…
wishing you all minimal side effects and no ruddy complications!
x
Hi Karen,
I’ve heard of the black nail varnish before, but have some questions. Is it only T regimens where this is adviseable, or FEC aswell? Also, should we wear it throughout every cycle, non-stop?
And PS - don’t forget your toes!
TC CHEMO, CYCLE 1 , DAY 19, CC
Hi Valentines
Hope this finds you well or at least not too bad with SE’s.
Xmas eve we are definatly on the same course bloods and onc today. Herceptin for me tomorrow…6 hour infusion as its my first and Chemo Friday. Phew what a week!!! Really looking forward to the weekend and being on the sofa with a good movie.
My hair loss is frightening if I scratch my head I loose a clump of about 100 hairs it seems. There is hair everywhere. I know most of you have been there already it sucks!!! Looks likethe CC didn’t work for me. Not sure what to do about Fri CC it still looks like I have hair but i,m imagining taking the cold cap off and having a massive icy bald patch on top like Friar Tuck!!!Lol !!! Well i,m not really laughing!!
I too keep a diary I can vent in it and can already see the difference in my feelings from first diagnosis. I have calmed down a lot but there are not too many moments when BC is out of my mind.
There is a really touching post on here today called Three years ago today it made me cry (in a good way) and gave me hope. What a wonderful lady to put it all so beautifully.
Well yet again our house is a sick house. My eldest still unwell ith virus now hubby has a temperature. Its driving me nuts what on earth do I do for chemo round no. 2. Scared i,ll end up in hospital again but hopefully will get injections time???
I’ve decided to book some treats for the end of the year and try to focus on them it will be good to have some nice things to look forward to. I’ve booked a week in Devon in a luxury lodge overlookng the sea. We normally go for basic but this year I said to myself S*D IT we’re upgrading. Lol !!! I’ve also booked the Lion King which i’ve wanted to see for years in September. My poor credit card !I’m going to plan lots not all expensive things just days out and small things too but will be good to look at the calender and see some fun stuff coming up.
Ok must go now will be playing that hospital game again… How many needles does it ake to get blood out of me!! Lol !
BIG HUGS TO ALL
Jackie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi
I think the black or dark mail varnish is just recommended for when or if you are on ‘T’ - something to do with the taxene’s light sensitivity. I aimed to keep the varnish on for the duration but couldn’t be bothered to maintain this although I make sure my nails are painted for treatment day. Now into round 3, my nails are a bit flaky and weak; I can even scratch off the surface so perhaps I should have repainted regularly. I do use hand and nail cream almost constantly as my skin is incredibly dry.
Hope everyone’s side effects are bearable today.
Diane xx
Linda, Good news indeed – do you have a start date? Will you be doing the trial – it sounds interesting and worth looking into. You can probably see the initial results from America and Europe – if you need any help looking at scientific journals then let me know I may be able to get the complete works for you with my athens account.
Kath, Sorry you’re having a bad day and hope you are feeling better and more positive soon. It’s easy to forget how each cycle gets you. With my next cycle looming (tomorrow) I have started to look through my diary to see all the side effects I am up for. Some I had totally forgotten about (like feeling cold to the bone and drying out), whereas others I am prepared for (I have loads of nibbles and fibrogel in place). Get yourself snuggled down and take care!!!
Dyane, I hope the antibiotics are doing the job and you keep on track. I am hoping my leg improves enough for tomorrow, but after a week and a half of antibiotics I still had infection in one of my ulcers yesterday. You have to wonder how they survive it!! They are looking much better than they were though and I am no longer in pain.
Diane, It only took 15 years of persuasion to get the puppy – keep at it!!!
Chris, I am keeping a diary of all side effects and any foods that I get indigestion with – it’s very factual, although I do put my moods in too (but not a dear diary kind of thing). It is a great way of keeping track of what is good/bad etc. Plus it’s all too easy to forget certain side effects and when they happened and this allows you to be prepared each time.
Karen, I am glad you find the blistex good – I hate lip balm normally as it’s really greasy, but this one is all but perfect!!! I think I will have this permanently in my handbag (must buy a handbag first). Ohhh – I love jelly, does it have to be raw as trifle is now flitting through my mind!!! Perhaps a whole trifle to make up for dilution!!! I haven’t worn nail varnish in years – but feel like a good pamper so will get some whilst in town this afternoon. Not sure on black though – will probably try a dark colour or even scarlet (seeing as I am not on T).
Jackie, I am sorry the CC doesn’t seem to be working. This does seem like recurring theme. The girl next to be on chemo 1 had CC and she was thinning, but it looked OK (she was on cycle 3) – not like a cancer head (which is mine right now). Perhaps it would be good to ask the nurse next time you are there how it usually looks at this point in treatment and you’ll get an idea whether it’s worth continuing. Never give up without a good fight!!!
I am keeping my fingers crossed everything is good to go for tomorrow, my leg does seem to be better and the scab is firmly attached to the stubbornly infected ulcer, so this hopefully means that all the infection is now healed and I can go ahead. I am not looking forward to the injections though as the SEs do sound awful.
Hope everyone is feeling good in themselves
Alison xxx
I have heard the tip about black nail varnish when on docetaxel, I was wondering what happens if you are admitted to hospital as surely the pulse oximeter that they put on your finger won’t work… do they just take the nail varnish off?
Good morning everyone,
Thanks for all the answers about black nail varnish. Looks like I may be saved having to use this as I’ll be on FEC only, but may have to think again when I start on Herceptin. I always wear a colour on my toes, but normally just clear on my fingers, but I do like my nails and don’t want to spoil them.
ALISON - thanks for that offer. I have been surfing about and have found lots of interesting stuff about this new drug, Perjeta. It does seem to be a wonder drug for HER2+++ patients with fantastic results, but only approved for use on Metastatic Breast Cancer people, and all the results and statistics are geared soley at metastatic patients. There is no information on how it affects primary/early stage BC. As this trial I have been offered allows primary/no node involvement BC patients to enter, it seems they are now testing it for non-metastatic patients. I will go to the introductory meeting to see what is what, and then make my decision. It’s not an easy decision for me because it does have nasty side effects - it is given over 12 months, and my own tumour was removed with good clear margins, no node or vascular involvement.
I don’t have a start date as they are waiting on the trial discussion and decision plus a portacath to be fitted. I do have a pre-chemo appointment booked for the 15th March, so it won’t be long now!
QUESTION - are any of you HER2+++ Valentines that will be having Herceptin on the FEC x 6??
I will read back through all the latest posts this afternoon, meanwhile, take care everyone and good luck with everything.
Linda xxx
FEC 1 day day 8
only feeling a little bit nauseous today day so is manageable . Have very little energy so doing s** all.
Hope all valentines are having as good a day as possible considering our circumstances!
Im off to make a cup of oxo to drink. These strange food cravings are something else.
Tup x
Hi Linda
I am her2++++ but on a different chemo regime to you. Im on TC and will be having my first herceptin with chemo cycle 2 this week.
Other news after being in hospital with neutrapenic sepsis my onc id going to prescribe injections for me this time. He said without injections the chance if it happening are about 30% but with only 10% chance.
A very dear friend drove me the 65mile round trip to hospital today and my appointment was only half sn hour. I feel very very lucky to have some wonderful friends.
Saw a post earlierfrom a March 2012 lady who was wonderful at reassuring current March group. She said how her group had met up one weekend. Perhaps we could do the same next Feb as we are the valentines. We will have hair again and be past our cgemo and hopefully life will be settling back to some kind of normality for us. Whatever normal is. What do you all think??
Take care Jackie xxxxxx
Sorry didnt finish sentence i meant to say 10% chance of neutropenia with injectiobs as opposed to 30% without. xx
Fec T
Fec 2, day 7
Phew, chemo fog finally lifting, but I have been asleep most of the day. Burning, acid stomach appears to be improving too, so not feeling too bad at the moment. Thank you for all your kind thoughts. 
Linda, I’d always wondered why I was having Fec T and not just Fec, thanks for explaining that difference. Sorry you have to have a portacath fitted though, although it might be a good thing in the long run as you are to have 12 months Herceptin. Will be interesting to see if you think the trial is worth it (nearly put portacabin). 
Karen, day 10 isn’t so beloved for me. That’s the last day for injections, and last time I had that horrendous nerve pain all night, so looking forward to day 11.
Angie, glad to know I’m not the only one fantasising about curly red hair. Although I quite like the idea of being pure white too. Maybe I could have red on one side and white on the other!! 
Sandra, couldn’t summon energy up for a proper screaming fit, so just had a moan instead - I could get into the habit of doing that. 
Diane, I too have a bit of a sore arm. Odd thing is, it’s the side of surgery and not the side I have chemo on. Also have a little hard lump under that armpit. Onco says it is nothing, and it’s not too bad. Think I’ve been carrying a bag on it once too often.
Chris, I love keeping diaries, I have loads. one physical one, 2 on iPad and three on PC. Some are just for cancer and chemo notes, others are for general stuff. It must be the latent writer in me. Used to write loads of poems and short stories, even a children’s novel - oh stop bragging kath!! 
In Shock, although I’m still on Fec, I find my nails (especially toenails) are very brittle and instead of cutting them (can’t get down there) I just snap them off. As I have ingrowing nails on both big toes, I’m hoping they come off, as long as it’s not too painful, so I can start again.
Alison, good luck for next cycle. Hope you don’t have as many SEs this time, but I feel things won’t get any better for any of us. Give that gorgeous puppy a special cuddle from me.
Jo, doesn’t pulse oximeter work on the fleshy part of finger and not nail? something I never thought of, but I’m that those who have false nails and nail extensions keep them on through treatment - maybe I’m wrong.
Blimey, what a lot of waffle I’ve posted!!
Big hugs to all Valentines, take care.
Love Kath xxxx
I read a useful tip on one of the other forums recently - you can get really cheap head covering if you look on eBay for “under hijab cap”. I sent off for one and it came today. Cost £1.99 post free and is lovely Cotten bonnet style head cover. I thought it would be useful to wear in doors instead of the wig all the time. Reminds me a bit of little house on the prairie !
Hope you all have a good evening.
Tup x
Kath - please don’t offer sympathy to me for having to have a portacath fitted - I am delighted!!! They are sealed so no hassle with baths and showers, only need flushing at chemo day, and less likely to become infected. I was dreading a PICC line, especially with my over energetic dog and my current paranoia about germs and neutropenia.
Good luck with day 10 - have you got some meds sorted in case the pains do come back?
xxx
Thanks Jackie, My Onc told me I’m not having the Tax because “we don’t give it to node-clear ladies”. Everything I have read about Herceptin says it works better with one of the Taxane chemo drugs, but I wasn’t thinking clearly enough when I saw him to ask him if it works just as successfully on its own!!! My main gripe is that it won’t start until after my 6 FEC cycles, so my treatment will continue a lot longer than it would otherwise.
Good news about the injections - and fingers crossed you will be OK next cycle. What a lovely friend you have. I am so glad my hospital is only 14 miles away. These long journeys must so add to the stress and tensions.
A meet-up next February sounds wonderful - except I will still be on Herceptin!!
Tup - glad your side effects aren’t too bad, and doing s** all sounds rather nice!
I am sorry many of you are struggling to keep your hair with the cold cap. It must make you wonder if the extra pain and discomfort is worth it.
As regards dogs , I have never ever been without one. Mum and dad had one when I was born, and I have had them ever since. I can’t imagine life without. In 1985 my husband was made redundant - he was a Resident Civil Engineer. We took a massive step and bought a run down boarding kennels and cattery, which we built up to being a successful business and a wonderful way of life. Hubby ran it whilst I had a proper job but helped out in the evenings and weekends. For over 20 years we cared for dogs and cats and bred our own little bunch of boxer dogs. When we retired we still had 4 boxers who moved to our current house with us and lived out their lives in total contentment. We lost the last of our own line last year at the age of nearly 15 - brilliant for a boxer. We do have Lola though - one we bought as a 7 week old puppy who is now 5. A proper bundle of naughtiness who we love to bits.
I send all my hugs to each of you and hope everything is going well , Linda xxx
Day 6 2nd Fec
have been very low last couple of days and fatigue this cycle has wiped me out! Will get more sleep and hopefully catch up with you all soon. haven’t been able to read all posts as keep bursting into tears! It’s like being a hormonal teenager again!!! Trying to find my inner chemo warrior! As soon as I do I will catch up!
love to all
Elaine x
Elaine - so sorry you are feeling so crap. I hope you manage loads of peaceful sleep, and tomorrow is another day. Lots of hugs xxxxxxxxxxxxxxxxxxxxxxx
Linda, glad you are happy about portacabin I can see it would be much better for you. All onco said about pain, is that if I have it again, to check temperature then take paracetamol!! What good will that do? Apart from anti sickness tablets and those b****y injections, I don’t get any extra meds from hospital. 
Elaine, sorry you’re having a tough time this session. You are where I was yesterday. So hope you begin to feel more up to it tomorrow. Plenty of sleep, and drinks of water. Take care.
Love
Kath xxx
Linda
Apparently you do need chemo to be given Herceptin sd they work as a fantadtic combination togethrt. As fsr as Herceptin Linsa ive read most oeople say uts a walk in the park compared to chemo so lets hope we are ok xxx
Elaine
Hope youbfind your inner chemo warrior soon.
Rest up and tske care. Hugs. xxxxxxx
Take care Elaine, sorry you are feeling low , we’ve all had those days , fatigue hit me harder 2nd cycle too , hope tomorrow is a better day x