And wow…I didn’t mean to write so much
Hi ladies hope everyone is doing okay just popping in from the November thread… I’m on weekly paclitaxel and 3 weekly herceptin and docetaxel. I was grade 3 and had a lumpectomy In August lymph nodes clear. I’m 45 married with 2 grown children and a grandson. I’m on week 8 and have 10 weeks to go so far se not too bad hair just starting to go but wigs at the ready. I find the weekly steroids and not sleeping for 30 hours at a time the hardest! When chemo finishes I have 4 weeks of radio to look forward to and then tamoxifen for 5 years. If I can support at all In anyway just ask sending good wishes your way! xxx
I feel the same way Tandy, keep thinking just need to complete this then I read how it comes back for a good few women. I’ve only just turned 33, was about to try for children and then this all happened. Chances of a child are slim now, as my cancer loves the oestrogen so will be on tamoxifen for 10 years.
I do think that we are allowed to feel the negative, but always look for something positive in the day…doesn’t have to be about the cancer or chemo…just something. Today mine was the rain bouncing on our decking. It made me smile and when I got scared/peeved at the thought of going through all this and for it to come back, I just thought of the rain. Sounds silly, but it reduced my stress level.
Oh and yep doing the fec-t. Lovely pink colour!
Welcome pammy!! You stay lazy, think it’s deserving x
We only bought our house near 4 years ago Tina! And we are the same, trying to sort and save. I’m still living out of boxes! At least you can celebrate your 50th in style for sure!
My partner leaves for work tomorrow as well so I will be with you on the tears front! One of my friends, who is going through another medical problem, recommended that if you are going to have a low day, no matter what, watch a cartoon movie like a Disney. As something that simple will help bring a smile around and they can also help induce some healthy tears. I’m planning on watching Tangled!
Hi all, I had my first dose of AC on 18 Dec, with cold cap. So far no hair loss at all, but I guess it’s early days. Has anyone else started on AC this month & using the cold cap? I would be interested to know what to expect will happen when with AC, in particular re hair. Thanks and all the best.
Happy new year all. Hope you are all doing ok. Seems so much to catch up on since last on here again. I have been feeling ok this week. My eldest turned 11 on new years eve so we had things planned for his birthday.
I am also having the same sort of side effects Tandy and Nadz. Days 1-6/7 the worst then feel a bit better each day. Also had sickness and really bad headaches too.
Oh and is it just me or is anyone else on fec waking in the night really thirsty and even though drinking a whole glass of water still waking 30-60 minutes later really thirsty again? This keeps happening lately. Also really vivid nightmares. Last night I dreamt I was swimming and then I was completely starkers and bald all over. Not a single hair. It was awful. Got up twice today feeling dizzy too. Not entirely unusual for me as have naturally low blood pressure, but odd it happened twice so close to each other.
My hair has been shedding a little more than usual since the 29th, but after a call to the department that issues the wig vouchers to ask about where I could use it I have things sorted on that front. They asked what the problem was and I explained and they faxed a new prescription order over to trendco so I can get the wig that matches my unusual colour. “Happy Christmas” the lady at the hospital said. I was actually rendered speechless. So picking it up Monday. Also Monday another Zoladex injection, 6th bloods, 8th 2nd fec. Seriously dreading it. Felt so ill after last one.
Finding it hard to sleep I am dreading it so much, that and the nightmares and the thirst. I am drinking plenty in the day btw.
Can’t wait for the summer and for all this to be over. Do you all know your treatment/s after chemo? Apparently they don’t know mine yet and rads are to be discussed later after chemo. I know I won’t be on herceptin or any other hormone drug after as mine is er- and her2- so doesn’t respond to it. Really don’t want anything else after 3xfec and 3xT. It is doing head in literally already. Having allergic reactions to the film plasters on the picc line too.
Sorry moaning and ranting. Tired but can’t sleep.
Will try though. Night ladies xx
Morning everyone, I hope you managed to get some sleep red Robin? For the first time I had difficulty falling asleep last night but that may have been due to going to bed earlier than the 2am time I’ve picked up over the holidays? Though I am with you on the nightmare front, every night I get them.
You might be waking up with dry mouth? Try taking little sips at night, with your first sip just hold it in the mouth for a few seconds then spit out, then take a sip of water to drink. See if this settles the urge? They also recommend lemons after eating.
Glad to hear about the clippers Marina, even if it’s just to help with worry of seeing your hair come out, get on the lemon/honey warm water and get some vit c into you! Will help towards the cold, give you a boost in time for the bloods?
Good luck to you ladies starting again on the 8th, I’m not until the 15th, the only good thing I can see is that we know what to expect and how to try and make ourselves more comfortable this time round. For instance I will be going straight home to bed instead of walking about a hardware store!
Hello ladies
Tina I’m sensing you a massive virtual hug. I completely get what you mean , I hate being alone .
I’ve cried a lot especially a couple days ago when I had to shave my head , what made me eventually stop was the fear of losing my eyelashes !!
My 2nd chemo is tomorrow .
Anyway just wanted to say I was thinking of you xxx
Hi ladies, popping in from Sept starters. I wouldn’t worry too much about eyelashes and eyebrows and nose hair. I was due my last chemo and my head was starting to get stubbly, thats when I lost eyebrows, eyelashes and nose hair. You can get a constant drip from your nose but vaseline round it helps. It is hard but you will get there. Take any help offered as some days you will struggle just getting out of bed. A short walk every day helps as well. You will find the support from the groups on here invaluable. Any questions just ask, we’ve all had different se and severity of them. Happy new year to you all. xxxxx
Hey everyone, so I got my Oh to shave my head this morning (a sentence I never thought I would say) actually feeling ok, the patchy look was more upsetting for me.
I’m feeling a bit low, that back to school/work feeling coupled with the up coming chemo. Although the side effects of the first lot were ok, worried it will be worse this time. I also will be getting my ct results back on the 6th, have been so busy with xmas etc I haven’t had time to think but now the fear of it being somewhere else has returned!! The 6th would have been my mum’s birthday so I hope she will be looking down on me.
Are we allowed to take vitamin supplements whilst on chemo? Someone suggested a high dose vitamin c to boost immune system?
Sorry for the ramble, didn’t know I had so much to say
Good luck to everyone having chemo this week xxxx
Check with your chemo nurses regarding vitamins as some can affect how your chemo works. I think you can use immunoace. Formulated to help immune system but please check with your team as your treatment may be different to what I had.xx
Hi everyone, just a quick post before I shower,
I was told ‘no’ to multivitamins, once or chemo nurses can advise but I was told they could interfere with the chemo.
The nights thirsts ( and the weeing!) quite a pain but keep plenty of water by your bed, very dry mouth, for sure. And the dreams, not really nightmares but disturbing or stressful dreams, I guess the frequent waking to drink etc keeps you in the light ‘REM’ sleep?
I read somewhere that the lady garden went quite early…I don’t mind the going, it’s the growing back that will be prickly! Hair feels dull and dry, but no movement yet…first FEC was 24th Dec. I reckon we have to concentrate on the pluses, not shaving of legs or under arms for a while, or trimming the garden!
Now, on the subject of hair loss, here is a link to a blog (if you haven’t found it already) that I think ladies cold capping (also for anyone else) will find useful. To use her own words;
“I’ve been completely honest in this post, and I’m writing as someone who found hair loss traumatic, so if you’re reading this because you’re starting chemo and are anxious about hair loss, be aware this post isn’t intended to cheer you up no matter what - it’s intended to tell you the truth, no sugar coating!”
hbocuninformed.blogspot.co.uk/search/label/Everything%20I%27ve%20learned%20about…
Amanda x
Thanks for info regarding vitamins. I thought had read somewhere they can interfere… I have started to write a list of questions for oncologist on weds!! Another positive… Saving ready quicker without having to do hair, saving on shampoo and conditioner… Every cloud x
Amanda, I have copied your hair loss link onto our Jan 2016 starters thread - really interesting!!
Good luck everyone for your next rounds of chemo, I keep popping on here to see how your getting on and to pick up any tips for myself and my other Jan starters (I have another 2 weeks to go still)
Xxx
my chemo started boxing day so post day 8 today. i had fluorouracil epirubicin fluorouracil and docetaxel. tho i have docetaxel on my list i don’t believe i have had it yet …
has anyone had a double dose of fluoroacil?
i have a very raw mouth and throat . i am drinking but so sore to swallow . no hair lose yet my have painful mussels. my next lot is on the 14th jan
I an having FEC-T, Flowerpot, so three cycles of FEC then three T.
F – Fluorouracil (5FU)
E – Epirubicin
C – Cyclophosphamide
then
T – Docetaxel (Taxotere)
I have not heard of the ‘double fluorouracil’ regime your on but your oncologist will have worked out the bed treatment for your particular case. Maybe try some Difflam rinse and Difflam spray to help your sore mouth and throat. Drink plenty of water, too of course. My next FEC is also on 14th Jan. I’m expecting hair loss to start this weekend or there abouts ?
Glad ad that the link was useful, great idea to share it in the January starters. I have found this one quite good as well:
Amanda x
Thank you, that’s really helpful to know. It’s 16 days since my first AC so if I follow the same pattern as you then I should find out in a couple of days whether the cold cap has worked at all! No-one has mentioned anything about injections to me, when did these start please? I’m sorry to hear that you will have another drug as well as the AC. All worth it in the long run though.
Hi ladies.
Tina I was told by my nurse that he day you have the chemo infusion is day 1. Then go from there. My next fec is 8th at 10am. I’m also a cold capper but I have the ones like ice packs from the freezer instead of the machine. Dreading next cycle as so sick last time. They said they would ask the consultant about changing the anti sickness. The boys are away next weekend which will be good for me not missing time but they will probably worry as they can’t check on me when they want to.
Nadz I am waking with a dry mouth, I breathe through my mouth when asleep. Can’t stop it have tried for years, but it isn’t like just a dry mouth. It is an immense thrist that I can’t seem to quench. Also feeling very hot at night at times. Think that is probably the Zoladex working as it turns off the ovaries to try and protect them. Was told might get menopausal symptoms with it. Think they are kicking in.
Sam B and anyone else having cycle today thinking of you. Good luck xx
Teresa I think you are very brave shaving your head. Mine is still at thinning stage. Hoping it doesn’t go patchy but prepared for the worst.
Amanda thanks for posting the link. Will have a look after work. 1st day back at school today after the holidays. Planning on working all I can through this.
Better go 2nd Zoladex is due in a bit.
Xx
Edelman
Thank you for the info.
Has anyone used the latest cold cap as shown by Victoria Derbyshire on TV today? The one I have used is not a great fit and I wonder if hers is really any better?