Cookiepuss - so so sorry to read that about your Mum. Running girl has put it perfectly - we really are all here for you and sending your Mum, you and your Dad loads of love and hugs. It's so hard to keep a brave face on for your family, so you can be totally honest on here. xxx
RunningGirl - thanks for all the feedback on what to expect from the T. I too got the impression from my oncologist and chemo nurse that the bone pain is one of the main side effects and that I would be more tired. Thank you also for the details re your surgery which is very helpful. I will be doing more research once I have an idea of what the surgeon has in mind but any information is useful.
Also condolences again regarding your sister. It must be very difficult for you and your family having to go through it all again. Lovely photo of the two of you X
Evie - thanks for offering to share info too; I have an appointment with the breast cancer surgeon on Tuesday where I may get some more details and will let you know what he says although I suspect he will be non-committal until I have finished chemo and had another scan.
Jacquie - I get the Fluconazole and Nystin and advised that it's on the "must take" list of drugs for me. It does seem to work as my mouth has stayed fairly ulcer free.
Unfortunately, a bit of an emotional weekend for me so I'm feeling quite down. Just before I got diagnosed with BC my Mum had an emergency operation to remove 2 large tumours from her bowel and it was discovered that she had secondary liver cancer. She started chemo just before Christmas but was one of the few people who had a terrible reaction and none of the meds seemed to work either and she ended up in hospital; as a result she made a decision not to have any more chemo. We were hoping that her age meant that the growth of the tumours would slow down but the latest scan has shown it has spread elsewhere in her body and the prognosis is very poor. I'm trying to stay positive in front of both my Mum and Dad but it is so bloody hard knowing that she hasn't got long left.
It doesn't help that they live a four hour drive away so I am trying to visit as often as I can between my treatments.
Sorry, didn't want to put a downer on things but if I get it out here then I know everyone will understand and I can try and keep a brave face in real life.
Hi Jacquie - good luck with the injection and getting over the effects of T. My taste tends to go for just over a week but seems to come back slowly once I start the antibiotics and Fluconazole on day 8. I needed stronger tastes the first week otherwise everything tended to taste like plastic. I thought I had seen all the T effects, but the sore skin between my toes was a new one this cycle. I have just ordered some very attractive toe socks - the type that look like gloves for feet! My toes were rubbing so badly against each other yesterday that I could hardly walk around the house. I hope the new socks might sort the problem. You have all kinds of drugs that I didn't have. I hope you will be fine and won't get any nausea, thankfully that's one thing I didn't get with T.
So sorry to hear about your brother too. He would be proud of the way you are fighting this.
Love to everyone.
Hi Snail. Yes, I've been seeing rheumatology since before all *this* started, it's a very slow process. The oncologist looked at my bloods and it looks like the rheumatoid factor is slightly elevated. He said that if it was rheumatoid arthritis then most likely it would vanish during chemo, and it did. I have one finger that gets a bit stiff towards the end of each cycle, but that's it now. I had an ultrasound of my hands just before Christmas which surprise surprise showed absolutely nothing.
Jacquie - hope you are feeling better today. You are so right, this drug keeps throwing up new surprises. I too have now got a flare up of eczema on my hands and sore toe skin too, and that has really knocked me today.
Jojo - sorry to hear about your feet. But glad to hear about you having a good day. It does cheer me up to read about others having a good day - kind of inspiration to keep going. So keep the good news coming ladies.
Apologies for having a moan and so many posts. I kept reading new posts and wanting to reply and too tired to make notes today.
Wow Running girl, that's a long post. I too found the story of your sister inspirational, so I will raise a virtual glass tonight.
I am jealous of your running, I had to give up around Easter due to knee pain. Knee pain which has totally vanished on chemo. I keep thinking I will start again once chemo is over, then remembering that the knee pain will probably come back. Sad face.
Cookiepuss - thanks for offering to share info when we get closer to surgery. I'll let you know what happens after my meeting this week. Like you I have small boobs so I think that's why he's talking about a mastectomy. I agree with you, I just want to get through the chemo before I have to thinkabout anything else. xx
Running girl - thank you for that amazing post. It was my turn to have a meltdown this morning - but reading that post really helped.
I didn't know about your sister - so very sorry to hear that. She looks and sounds like a wonderful, inspirational lady. I will also raise a glass to her today and I'm sending you especially big hugs.
Glad to hear your nurse was so positive and "the patients' voice". You are so right about this forum and the December group, it is an enormous support.
Thank you for sharing your surgery experience - I have a meeting with my surgeon this week and that was really helpful to read. I have been trying to ignore the surgery as I'm scared of that, but reassured to read that it was easier than the chemo.
I thought I knew what T was going to throw at me, but yesterday it threw sore skin between my toes. Didn't sleep well either so feeling rough today.
Lots of love to everyone. xxx
Hi ladies, sorry to read that some of you are having a tough time, hope you are feeling better soon.
I too have been confused over the nail issue, I have now cut mine short again and painted nail varnish on, they have lifted slightly, the white nail end seems to come further down the finger and now I've cut them I might have gone shorter than normal. 😳 Hopefully they will hold on.
Noticed this morning that the skin on my feet was peeling, how can it suddenly go from so soft to that, it's amazing what these drugs do to us.
On a plus I'm having a good day today, went to sort out our mortgage this morning as rate was just running on a variable, have fixed it now for 5 years and saving £100 per month on the payments, which is a nice bonus considering wages now on half pay. Doc has signed me off work until May so far, still have to avoid those pesky patients with bugs 😳.
Popped into work to catch up and drop off sick note, after 2 hours catching up with everyone, finally left. Been shopping and now putting my feet up with a cuppa before teatime. Steroids will wear off soon so just awaiting the flop.
Hopefully side effects won't be as bad this time as consultant reduced the dose, but at least this time I know what to expect. Will just take one day at a time.
Hugs to you all 🤗🤗
Hi Fiddlercrab - Thank you so much for all the advice on nails and surgery, really really helpful. Do let me know which option you go for on nails. Mine hurt a bit today so am in a panic that they may fall off if I don't do something. xx
Andreaj - so sorry to hear you are feeling so rough. I felt like that earlier this week, I felt like it would never pass again. Can you remember when you started to feel better with the last sessions? Sure it will pass again - but call the nurses/onc if it's much worse than before. I think most of us don't want to trouble them/cause a fuss, but they may be able to prescribe something to help you. I'm taking that from Jacquie's very sensible advice earlier/yesterday to make sure we all report things early.
In the meantime feel free to shout on here or chat if that helps. Be kind to yourself and find something easy to watch/do or just sleep. xx
Ooh the thread has been busy, lovely to read through. Lots of us having difficulties at the moment, which I am sorry to read. Thank goodness we have one another to sound of too and offer support. Hope the sessions go well for those who have them today. Jacquie, I too had a small nasty lump, less than 1cm and 6/7 nodes had cancer in them. Interestingly enough this did not show up at all on my ultrasound and a shock to the surgeon and obviously me, hence why I am having chemo. I have to have a node clearance after chemo then radiotheraphy. One day at a time for me, trying not thinking about what comes next, just need to get through the chemo first, cycle 4 for me on the 9th. Evie, yes you have a lot to think about, making decisions is difficult when going through all of this. I found it difficult enough deciding about changing my chemo never mind all you have to decide upon.
Sorry not made a note of everyone today but wish you all well and a good weekend.
Jacquie & Evie - I have onicolife and was also wondering about how to use it while simultaneously painting my nails a dark colour, when it says to apply to bare nails twice a day. I asked around and people suggested:
Option 1: one or the other. Repeatedly taking the nail polish off in order to apply the drops will probably damage your nails, even if you use acetone free remover. So either rub the drops in or paint them dark.
Option 2: paint them dark and redo weekly, meanwhile rub the drops into the base of your nail/cuticles which is where the nail is forming anyway.
Option 3: use the drops during chemo, then move onto option 2 if your nails look really horrid at the end to hide any discolouration etc.
I still haven't decided!
Hi Evie. I am having surgery after as well, and most likely (90% the surgeon said) it will be a mastectomy. Originally they were going for shrinkage and lumpectomy but the MRI scan suggested otherwise, and I had already started chemo by the time the results were in. I also have to consider reconstruction options, but I like the fact I have got plenty of time to consider them. At the moment I am leaning towards an implant, simply because the surgery is simpler and the recovery time is shorter, and I am not left with two wounds to heal. I already have abdominal scaring from an operation as a baby and I don't know whether that will affect things.
Hi all just checking in, had my 3rd fec four days ago fasted before but dont seem to have had such an easy ride this time.
Feeling rough, eyes puffy, nausea etc just want to sleep a lot and feeling down and beaten.
Last round was so much better than first that I suppose I hoped this time might be the same. I cut the dex down as I started having dreadful waking nightmares when trying to go to sleep at night had to sleep with the light on seriously nasty stuff and very realistic plus I was jittery and jibbering away like a monkey and that was just with the steroid from the drip and two 2mg doses via pill the day ater.
I would like to reply to everyone individually but dont feel up to it ... it seems a long road today and with my next 3 on T to look forward to I feel rotten
hope you all have a better day X
Jacquie - just 2 more to go after today, that sounds good.
I am having surgery at the end of chemo and will be seeing surgeon next week to discuss options. It may be too personal for anyone to discuss - but if anyone feels up to talking about their surgery that would be wonderful. I think I will be having a mastectomy and node clearance - but have to think about reconstruction. All seems too much to get my head around and dreading not being able to do things, including driving, for so long. Thought I could put off thinking about it until later in chemo but no....
Good to hear you are positive today. Just think, another one done today, closer to the end and you are zapping that lump. Or maybe you have had surgery already?
So sweet of you to offer to mail the company - no worries if you forget, I forget everything. xx
Good morning lovely ladies. I make notes and still forget half the things I wanted to say!
Jacquie - first of all, thinking of you today and hope T goes well for you. I meant to say I'm glad you liked Anna Bandana, I found them very good. Thanks for the anti nausea drug tips, the shampoo and nail advice. I am going to order some Onicolife. I think someone else may have asked this - but how do you go about putting the Onicolife on as well as painting nails? (Does that make sense?)
Rooner - hope you are feeling a bit better today? I am going to look at alpacine shampoo - plan to try everything to make my hair grow back as quickly as possible. Interesting that you are all using shampoo, I had no idea what to use.
Jojo - I also meant to say that I'm glad to hear you are doing well after your 2nd T. Interesting about reducing the dose. Bet you have the cleanest house after the steroids - I never actually got that urge! I want a pink wig too - I thought about it when I went, but got the sensible one. Time for a second I feel. Thanks for your advice on wigs. I hope mine will be easy to wear but I also have scarves. Such a surreal world we are in.
Appreciate all the advice everyone has given about steroids - always helps when seeing onc to be armed with info. I appreciate they are the experts, but it's always good to ask questions, especially when other hospitals are doing different things.
Fiddlercrab - all the best for next week's T and H. Hope you find something to distract you during the 6 hours. Let us know when you go in and we can chat on here if that helps?
Hope everyone has a good day. Hugs, xxx
I am starting T + Herceptin next week and also have three days of steroids to take. T can cause allergic reactions (more so than FEC) so I am going to take them but really not looking forward to it. I am having T on Wednesday and H on Thursday and also have to spend 6 hours hanging around at the hospital after the H (but not after the T), which is quite possibly going to be extremely boring. That's if the oncologist actually got round to prescribing it, it wasn't on my records at my last FEC...
Hi Evie, I have two normal wigs plus the pink one. My wigs felt a bit big once my hair went, but on adjusting the strapping at the back, they fit ok. I think the small gap above my scalp helps to keep them cooler and they don't itch. Only I know that they are too big, they look normal to everyone else. At home I wear hats just because my wigs are long and get tangled when I'm sitting on th sofa.
Strangely my hair on the head never completely went (well not yet) though I did take it down to a grade 1. I still shampoo with a tiny amount and still put a towel on my head when I leave the bathroom, my son has questioned this on several occasions, I say it my way of feeling normal.
My consultant was keen to give me maximum dose of steroids as I have severe allergies so didn't want to risk allergic reaction to th chemo.
Hugs jo xx
Jacquie - I spent so long writing my post with foggy brain that mine crossed with yours. First of all happy birthday - as you say maybe not your best, but you are well on the way to making the next one the best.
Thanks also for your FEC experiences. Interesting about your hair. I still have eyebrows and lashes and some still on my legs. Would love the eyebrows and lashes to stay but who knows. Exciting that yourhead hair is coming back. I certainly haven't had the nausea with T and hope you won't either. From what I have read it seems FEC is more likely to cause that.
Brain really ready for bed now. xx
So much useful info from everyone.
First - my experience with T and steroids. I wasn't given any steroid to take the day before T. My first was via IV before the chemo started (think Dex). I then had 4 Dexamethasone tablets (each 2mg) to take at 9pm on day of chemo, then 9am and 9pm the day after. Strange how different hospitals give different doses - Cookie and JoJo seem to be getting almost double what I had, surely there should be a gold standard? My worst days have been 4 and 5 - general aches, tired and that foggy "I'm ill" feeling. I also had horrible palpitations on those days, which they think is a side effect of the Dex. I was given Lorazepam so that I could at least sleep. After that I go back to some sort of normality, though not quite sure what that is any more. Cookie - lucky you getting access to morphine! You will sail through it.....
Agarside - good for you questioning the steroids.
Good to hear that you all had relatively mild experiences with FEC - thanks for sharing and reassuring. Agarside - I'm interested in your fasting, I must re-read that article one of you posted about it a while ago. Just not sure I could go without food, even though it does taste like plastic for the first week. Hmm, on second thoughts maybe I could give up plastic food. I hope you are getting over your cold now.
My wig isn't half as much fun as Agarside's or Jojo's and I've only worn it once. Didn't notice til later that it had slipped and looked rather odd, but friends too polite to laugh!! As I used the cold cap for the first 2 chemos I still have some hair, but it's not a good look as it's quite bare on top and some around the edge. Don't even try to imagine. I guess the wig may fit better once the hair has gone. What do you ladies use once all the hair has gone - clearly not shampoo and somehow shower gel seems wrong?
Goodnight everyone and big hugs. xx
Evie - if it's any help I didn't feel too bad with the FEC. I tended to feel a bit crap (very tired, woozy, chemo brain) on days 5-8 but I think that was caused by the crash after the steroids. I wasn't sick after FEC and mainly just felt slightly nauseous which I could cope with. My appetite was fine and mouth ulcers were kept at bay with regular brushing and mouthwash.
Fiddlercrab - like Evie I wrote a few notes to remind me of what I want to say/respond to.
RunningGirl - I found the more I wear my wig the more comfortable it gets. It's a bit itchy for the first 10 minutes but seems to settle down after that. It did give me a headache the first few times I wore it all day but I think it has stretched slightly so has settled to the shape of my head. You can get a wig liner which is basically like wearing a pop sock on your head (nice!) - this provides an extra layer between your scalp and the wig which may alleviate the itchiness. I have a spare one if you would like me to send it to you to try - just message me with your address if so.
I have to say I have worn the wig quite often now, particularly in the last week as I have been going into work every day. If I am working from home I tend to just wear a Cozy Cap.
Nonetheless I can't wait for my hair to grow back either.
Snail - I noticed it was much lighter at 5pm tonight too. Spring is on the way!
I had my pre-chemo check/chat with the oncologist today. He ran through the side effects of the T as my first session on that is next Thursday. He said that the main side effects are severe aches and pains, tingling/numbness in fingers and toes (but if that happens I need to tell them as they will reduce the dose), damage to nails (keep them short and wear dark nail varnish) and fatigue. The aches and pains usually kick in around days 3-7. Painkillers are OK to take but I will also get a prescription for morphine just in case!!!!!!!!!!!!!!!!
I am having T with Herceptin and Perjeta thrown in for good measure!
The steroid dosage has increased dramatically. I have to take 4 steroid tablets twice a day starting the day before chemo, the day of and the day after (on the FEC it was one tablet 3 times a day for 3 days - yikes that is 24 steroid tablets in 3 days vs 9 previously plus whatever they put through with the chemo). I am going to be bouncing off the walls and the ceiling with that amount, not to mention having even more of a moon face and am not looking forward to the crash afterwards.
For the first session they have said to be prepared to be at the hospital for a minimum of 6 hours - although it doesn't take that long to administer there is more likely to be an allergic reaction (hence the huge amount of steroids to try and reduce it) and they won't let you go until the are sure that you are OK. If all goes well then the subsequent cycles are much shorter.
Not sure if that is the same for everyone so will be interested to hear if others starting on the T next time round have any conflicting/different information given.
Hi ladies, day 2 of second T and feeling ok so far. My consultant reduced the dose this time to 80%, apparently this is very common and in trials of the drug it was felt that 80% is just as effective in the end, I was concerned as didn't want to prolong the treatments but still the same amount. He did talk about increasing my steroids but said he would rather go with the reduced dose. Should hopefully reduce the bone pains and nosebleeds.
Had the injection tonight to ready for the side effects of that.
In answer to the steroid question, I have to take two doses of 8mg the day before treatment, the day of treatment and the day after, morning and lunchtime (16mg a day). They are ok for day one, just feel I have loads of energy and buzzing around the house cleaning everything in sight. They on treatment day I get a hot flush and slightly rounded face. Sleep is a bit of a problem on the first day, however after my chemo yesterday I slept well last night.
Been to see my GP again today, just to touch base and get a further sick note, she has signed me off until May 😳 Working in health care not allowed to have patient contact so best to stay away. Missing work but need to concentrate on getting better.
Hugs to all you lovely ladies
Snail888 from what I gather we are expected to take Dex (or equiv) the day before and for 2-3 days after. So far from my reading, the side effects are worse than any benefits, so they will have to show me something really compelling fo me to be even considering taking it.
I too have been very lucky with FEC.
Days 1-4 like a hangover, I fast as best I can and drink 2 litres of water +++ as I can. Day 5 is "Big Mac" day. After this I am fine. I have been floored by a period and a head cold, exasparated by FEC. I declined Dex (took alternatives with much less side effects). No probs with veins, muscle pain but am starting to feel the tiredness and fatigue.
I have a wig, but crikey it is uncomfortable and itchy.... Wore it today and had to keep going to loo to take it off and get air to my head lol, guess I will just have to get used to it. I would go bare, but I still have patches left and it looks horrible, but I do have eye brows and lashes which is good.
I am now reading up on T, and deciding what I will and will not accept to go along with it 🙂