This thread has gone very quiet. I hope all of you are coping well and not feeling too bad.
I had my 3rd FEC on Tuesday and didn't feel so sick this time - taking Domperidone instead of Metoclopramide - although I still feel lightheaded and useless for doing much. I'm looking forward to a better night's sleep when the Dexamethasone has fully worn off and stomach settles down. I've just noticed that I have to take double the dose of Dexamethasone with the Docetaxel so no hope of sleep then!
Has anyone started Docetaxel and Herceptin yet? I'd be interested to hear how you're doing.
I have had Emend each time, plus Ondansetron and Metoclopramide. The first two do bring relief from the worst sickness- I get a few hours after taking each when I feel grim but not nauseous or retching. I certainly notice when they wear off. You only get enough for two days so after that it is just the Metoclopramide, which I didn't find much use. On day 1 now and hoping for an easier time. If only!
Hope everyone else if feeling ok and enjoying the sun x
I was all braced for EC3 at 5pm yesterday, even braving Miso soup to plump up my veins (as recommended by those on the June thread). Had my bloods done then went to pick up my Emend from the chemo unit so I could take it an hour before. Was gutted to find out that, although a chair was booked for me, my treatment hadn't been prescribed. Too late in the day to sort it too. So today it is.
Hope you are all feeling much better.
Diana, what a roller coaster : ( I can't say much as I'm day five (the BAD day!) post FEC number 2 but I just wanted to say I hope your mum is ok and so glad your scan turned out to be ok xxx
I am resurfacing again after a rotten couple of weeks. It was wonderful not to feel sick thanks to the Emend tablets following my second FEC but I then became so fatigued that I missed my grandson's second birthday. I was so washed out that I was convinced I must be anaemic. My blood test showed otherwise and while I was there I had another dizzy episode. The doctors wanted to rule out a clot on the lungs so I had to have a scan. The dye that needed to be injected had to be delivered quickly and the PICC line is too narrow so I had to have a green cannula ( big needle!) . Trouble was, my veins wouldn't co-operate and it took 5 attempts..ouch!
Scan turned out to be fine. While all this was going on my elderly mother was in A&E with a fractured collar bone after a fall at home.
I was too ill to drive so had to rely on lifts to visit mum, who is still in hospital.
Thankfully I feel a lot better now and am able to drive Yay! I've been staying with my dad to keep him company. Hopefully I will get one good week before the next onslaught .
Chemo went ahead today. Took a bit longer as the the usually busy unit was extra busy today. Guess who popped in, yes, the Head Nurse! She's everywhere, I bump into her all over the unit! Last nightI developed sore feet, very red soles, dry skin and painful burning feeling, made worse when I walked, it had eased by bit by this morning but was showing the nurses my feet when "she" popped in. Had a look, "not chemo related" she says, What??? Of course it is, you just have to do a quick google search to see that it is a common side effect of the two drugs I am on, Doxetaxel and Cyclophosphomide. No point in arguing with her, I made a comment when she left the room and the two chemo nurses both burst out laughing, adding "I'm saying nothing!" which said it all really. Anyway, was sent away with a small tube of Diprobase and told to keep an eye on it. Just waiting to see what lovely side effects this cycle will bring. Oh the joys! Oh and got cannula in on second attempt despite me forgetting to take the miso soup I had bought and the hospital not having any heat pads available.
Rosieflower and Pookie, I asked what my liver enzymes were but they wouldn't/couldn't tell me, so when the nurse was out of the room I sneaked a look at my blood test print out, full of medical terms that I don't understand but wrote down the readings and am off to "google" to see which one, if any, is liver enzymes
Hi Rosie, sorry to hear that. It's a pain isn't it. When it happened to me, they delayed treatment by five days and I was allowed to have it as the enzyme levels were seen to be falling. By the time I did have the second dose, they weren't back to normal, but the oncs were satisfied that they were on a downward trend so went ahead. They did reduce the dose of the E by 20% as they thought that was the likely culprit! So I'm not sure whether they would need to do the same for the t, maybe just waiting a bit to ensure the levels start to go down will be enough.
i hope you don't have to be delayed too long, i know how we all feel just wanting to get to the end as quickly as painlessly as possible. Best of luck to you. Xxx
Just popped in from June thread and can see you were delayed due to liver enzymes raised. I Was meant to have my 1st Tax today (chemo 4) but they rang last night to say my ALT liver enzyme was raised from 12 pre chemo to 290, and therefore chemo delayed and bloods again on Monday.
How long were you delayed for and did they give you reduced dose? Am hoping it might mean reduced dose of Tax as its a body basher by all accounts!!
It's annoying being delayed isnt' it, as you plan stuff around it.
Hope all is going well now
Oh, Once Wild, so sorry to hear that. How disappointing. Hold on to what JenJen said though, as I've heard the same thing from others too. I'm scheduled for weekly paclitaxel too after my last FEC and so have been doing lots of research. The side effects definitely seem to be far less for most people. Let's hope we're in the majority! Xx
Loving the idea of you two in matching wigs! Mine is firmly nestled in it's little box and quite probably will stay there for the duration- though I do try it on every now and then just to see if by some magic I can bear it.
My clever planning has been scuppered. I asked the scheduler a while ago if I could move from having treatment on a Friday (thereby ruining my weekend) to a Monday. He checked with the team and said that was fine so my EC3 is now on Monday instead of tomorrow. At my request he also made my appointments late afternoon as it is so quiet there is hardly any waiting about and my hubby can join me after work. So I thought all was set for this new pattern. But no. I wanted additional anti sickness meds and spoke to the breast care nurse last week. Mentioned that I hadn't had any confirmation of appts and she said she would follow this up. She phoned yesterday clearly having worked very hard to get all my appts for the rest of my plan sorted. I just wrote down the dates then checked the calendar - yes all are on a Friday and all are in the morning. So from when I start weekly Taxol at beginning of September to early Nov every weekend will be ruined. I am gutted.
On on top of this she said the doc was keen that I persevere with anti sickness meds already prescribed or she said I could ask my GP. Am deciding on whether to just brace myself or to give into panic and build an arsenal of meds for the impending dark days post EC3. Oh for a simple life!
Haha! That is a coincidence. Glad you like it though, it makes feel more confident that I've made the right choice as my natural hair is curly too and I had to get my real hair wig (which is long and brown) permed! Feeling slightly worried that I'm going to prefer the synthetic one and will have wasted a considerable amount of money on the real one : (( Never mind, live and learn! And I can always donate it at the end : )
I bet blonde orangutan is very cute! X
Oh Alex, so sorry to hear about your horrible side effects. Hopefully the nausea will wear off soon and you get a good night tonigh. I've just started to feel grotty, so have taken myself off to bed with a Domperidone and a instructions to hubby to bring me soup in half an hour!
on the hair front, my eyebrows and lashes are still all there but I gave myself a grade one head shave yesterday......it helped minimise the friar tuck look I had going on, so now I'm happy to go around the house bald (husband said I looked like a cute alien - I can work with that!), but wear my wig when out. I'm actually just about to buy another one, Jon renau Julianne, (maybe the same as yours?) even though I'm naturally dark, I'm going to get it in blonde, just for a change!
Really hope you feel better soon, lots of hugs, xxx
Hey Ladies, it's been very quiet on here lately! Hope it's because you're all out doing fun things and not because you're feeling rubbish.
I finally managed to have my second FEC yesterday, hurrah (although they had to reduce the E by 20% - a little worried that it won't therefore be as effective, but I guess it's a toss up between efficacy and long term liver damage!). I'm now 1/3 of the way through though, so not complaining. Feeling ok today, a little nauseous and a bit fuzzy but generally ok. But I know as soon as the steroids run out I'll have that hit by a truck feeling : (
Anyway, just wanted to say hi. Pookie x
Bookworm it seems we are both in a bad hair place - we could set new hairstyle trends - the orangutang and the Friar Tuck!
I have full respect you for managing fortnightly ECs. I am on 3ECs then go onto weekly Taxol for 9 weeks, plus i will start Herceptin. I have been told that SEs are less on Taxol so I am banking on this and hope for us all that this will be the case. Maybe weekly doses are smaller therefore more tolerable? Will be very pleased to stop EC as am dreading no. 3 already. Still feels like a long haul ahead but on a very positive note so good to be off work in the summer rather than the winter. Also good to be about more for the children, not that my independent teens need much from me, and have their company.
That did make me smile Oncewild. Baby orangutan!! Gorgeous! I'm more like Friar Tuck and that's with 3 cold cap sessions. Feel the same about my wig too oncewild. Prefering headscarves/bandanas at the moment. First weekly Taxol tomorrow......shoukd I keep going with coldcap or not? Very anxious about starting new drug though glad to see the end of fortnightly ECs which gave me no let up from SEs and has wiped me out. Hopefully it's wiped out any cancer cells too though. Hope all July starters doing ok. Anyone else on weekly Taxol? It's the fear of the unknown all over again. Xxx
The hair or lack of musings are familiar to me. I am sporting a very odd look at the moment the saga of which goes like this:-
At my last pre-chemo hairdressing trip I decided to forgo my midbrown colour and instead go for a vibrant red - thought why not, as it was soon all going to fall out. Exactly 2weeks after EC1 I started shedding loads so hubby bravely clipped it to 1cm all over. Lots more fell out but I was left with a threadbare look. This has grown a lot and, even though 2.3 weeks after EC2, no more has fallen out. The end result is that I have a hairdo that a baby orangutang would be very proud of. Not a good look on me but I can't bring myself to shave it off.
I have a clutch of swag beanies and a couple of easy tie headscarfs (which are foolproof and stay on) which I live in. 'Blessed' with a large head I have had to look hard for headwear that doesn't squish my head, including a wig. The latter looked great when I tried it on but now it looks and feels very wiggy - wonder if it is because I am now used to having no hair? Too hot and too tickly and just not me. Can't imagine wearing it but maybe in winter I might appreciate it more........... no doubt more hair challenges to come but for now just need to keep remembering to don something before going out of the door and frightening the neighbours!
Wigs - thereby go a number of laughs and challenges. I bought mine before chemo and had it cut to my exact style by my usuall hairdresser. I wore it initially, especially when going to work and facing my customers. I had to buy some wig tape to stick the sides above my ears down, so a) it would not fly off my head, when windy b) the sides started sticking up c) to stop it moving and me constantly pulling it back into place. Washing it did make quite a difference, it softened considerably. The only real challenge - it is long hair and it gets badly tangled at the back - and it is far too hot, despite its construction - in the warm weather.
Over time I gained confidence in wearing elegant long scarves simply tied at the back - a look, which suits me well. At home I now longer put anything on my head.
Now - just past FEC number 5 - I rarely wear any head covering - going shopping, going to work - apart from facing new clients (wig) or going to the pub (scarf).
It is amazing what style statements can be made with a bare head - funky long earrings and cleverly applied make up - brows and eyelashes have said good bye by now - . No one seems to figure out I am a chemo patient - althoug I am now approaching number 6 and it will be my last one.
Perhaps I am just lucky....
There are some scarf looks -on the page of this link - https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...
So glad you're feeling ok Suze, you're a third of the way there now : ) Looking forward to getting there myself. And you're lucky to be able to wear slouchy beanies. I have tried hats, but I seriously look awful in them, my head's too small. The only thing I can just about get away with is a long scarf tied back in a pony tail, that's fun. If you do fancy trying another wig, check out the ones by Jon Renau, not real hair but super realistic (if you get the lace front and mono top) and hopefully you won't end up looking like a grenadier!
Hazel, I just wanted to back Pookie up in what she said about having a moan if you want to. We fellow travellers can all understand, and i'm sure we all have our down days and times when we feel we can't face it, and it can be hard to stay positive, especially when there are setbacks and complications.
Pookie, it's interesting that you've taken to wearing wigs. The only time I tried mine - which looks quite similar to my own hair - it felt weird and just didn't look right. The style is short and spiky, but it was a breezy day and the wig was sticking up like a busby. Maybe a real hair one would be better but I'm reluctant to invest in one if I'm not likely to wear it. I've been sporting a 'slouchy beanie' all the time, which my husband says makes me look like 'girl with a pearl earrring'! What are other people finding works for them?
It's day 5 after FEC number 2, and I woke up at 5.15am but feeling quite good and hopefully through the worst. Big hugs to any of you who are not feeling so great - I hope it passes soon. x
I just wanted to wish you all a happy weekend. I hope the weather where you are is as lovely as it is here in London and I hope that you are all feeling well enough to enjoy it. I'm going to get lots of vitamin D and fresh air.......and maybe an ice cream or two.
Suze, I hope you're starting to feel better now and wow! well done with the fundraising......especially managing to eat cake ; )
Hazel, I just want to say please don't worry about posting the bad stuff if you want to have a moan! This is the best place to do it and we all understand. Better than bottling it up......and, as you said, sometimes reading about other people's problems helps you feel better about your own and lets you know you're not alone.......so you'd be doing us a favour : ))
AJ and Debhummingbird how are your eyebrows doing? Still hanging in there? Mine are staying put for the time being and as for my hair.......unfortunately, I've lost everything from the top and crown but have a thick, dark grade 3 mass around the back and sides. I look like Friar Tuck ; (( I actually wish it would all go as totally bald will be a much better look than strange bald old monk.
Is anyone else getting obsessed with wigs? I'm having so much fun with them. Bought a very good real hair one that's almost identical to my old hair, but I also got a relatively cheap blonde one for fun and now can't stop lusting after more and more and more! This is definitely one of the silver linings.
Hopefully getting my second FEC on Tuesday now, assuming liver enzymes are still falling, Hope yours goes ahead too Alex. And Diana, how's the PICC holding up? I had my port put in and so far so good. So if there are continuing problems with you line, there is always another option.
Anyone heard from Taran? Hope she's ok.
Thanks for your kind words, sounds like you're having a pretty rough time as well. It's not exactly been plain sailing for me but others have had it worse. I must admit I do find it (sadistically?) comforting that others are finding it tough also. I tend not to post when I'm feeling bad for a few reasons, firstly I'm the kind of person who retreats when feeling low, tend to just want to lie in a corner and "lick my wounds". Secondly, I don't want to scare others and thirdly, don't want to sound all "doom and gloom". I'm sorry your chemo has been delayed and wish you all the very best. Re: the coconut oil, I tend to have my showers at bedtime rather than in the morning so I use it after my shower before bed. I use it all over my body and was also told to massage into my nails and toenails. It can be a little greasy being an oil so I find using it before bed works the best for me. I tend to pat any excess off with a towel. I've had a good day today, got another wig, more blonde with a fringe so that has cheered me up too.
Pookie - Sorry to hear your chemo has been delayed also.
Suze - Hope you're feeling a bit better today and well done on the fundraising.
Hope everyone has a good weekend.
Forgot to mention that at the Breast Cancer Care fundraising tea yesterday, organised by some of my old work colleagues, we raised £115. I even managed to eat a piece of cake!
Alex and Pookie, so sorry your second FEC was delayed. This treatment is such a roller coaster ride isn't it, but without the fun. Belle, thanks for the tip about the seasickness bracelet.
I'm not getting over FEC 2 quite so well as the first time but at least I got to have it and tick another one off. I had a real fit of the shivers yesterday evening and had on two vests, a tea shirt, two fleeces and a blanket to try and get warm. I felt very achey as if I was getting 'flu but my temperature was OK. Thankfully, I slept well and feel much better today.
Hope you all have a good weekend.
Hey Alex, I just wanted to say you're not alone with chemotherapy being delayed. I also was supposed to be getting FEC number two yesterday, but have had to postpone due to elevated liver enzymes : ((
It's so weird being disappointed not to be able to have it!
Hang in there, we'll get there in the end.....even if it is a little later than planned.
Good morning Ladies,
Hope you are all doing well. It's been pretty quiet on here of late. I've not posted for a while either mind you.
Day 14 after second cycle of TC & Herceptin. The second cycle floored me a bit to be honest, was so exhausted and fatigued for the first whole week. Also had to get some cyclizine to add to my ondanestron and metaclopramide, no vomiting thankfully but pretty nauseous. Heartburn was quite bad too but already on esomeprazole and ws advised to take an extra dose in the evening when required. Gaviscon also helped.
Posted this on June Starters by accident, the rest of the post is on there, can't seem to copy the rest.
Hello everyone. Has anyone tried the 'seasickness bracelets' to help with nausea? Do they work?
Had my second FEC on Tuesday, and whereas the first time I felt less sick by day 3, I'm still feeling icky today and have a Breast Cancer Care fundraising tea to go to this afternoon. I'm taking hubby to eat my share!
Alex, I know you had your second FEC on Tuesday too - I hope you are feeling OK. Hugs to all you fellow travellers xx
Good morning dianabrew,
so glad to hear that you are doing better, especially with the nausea and sickness. I am sure it makes a great difference. Fabulous to hear that you have been able to get out, but yes, it does take it out of us.
Fatigue is mainly due to our red and white bloodcells. unfortunately, being attached, too. So it is not surprising to hear that you felt washed out.
Hoping your blood counts recover adequately. One thing to watch out for is that chemo has a cumulative effect on our blood count, so you might feel more fatigued as you move through your treatment. If you are concerned about your counts, it may be well worth discussing with your team, so that all can be put into place to support you through your treatment.
Hope you are all doing ok. You're absolutely right Pookie1, we're not being good role models for PICC lines!
I can understand your anxiety about having the port, especially if the surgeon has had misgivings but sounds to me that the medics have had a good discussion about your case so fingers crossed for you that it goes well.
My news is good. The Emend has been fantastic! No nausea or vomiting! I'm having a much better time for my first weekend. I may have overdone it yesterday though, I took my granddaughter to the park, watched the town carnival procession etc. but today I'm feeling washed out. I think the chemo is attacking my red blood cells so that would explain it. I was boarder line for a transfusion before the chemo. Will ring the unit if it gets worse.
Am watching the Olympics on the couch.
Oh Diana, we're not very positive role models for PICCs are we?! I really hope yours gets sorted and you have no more problems. I'm still in limbo after my surgeon said he wouldn't put in a port, but my onc team booked me in for the procedure on Tuesday! I asked them to speak to my surgeon (you'd think they would have done so already!) so they cancelled it, but have now rebooked it saying he's on board. I'm totally nervous as its obviously not a clear cut decision....eek.
As for my hair, Bella, I've still got loads although if I pull it, a few strands do come out every time. I do have very thick hair though, so I think the loss is just a bit less noticeable, rather than being slower than usual. I do have the clippers at the ready though!!! And on the plus side, I have just received my truly amazing wig that looks just like my old long hair but better. My brother didn't even realise I was wearing it until he remembered that the last time he saw me I had short hair : ))
I really hope the t is better for you and you have enough energy to get back in the saddle. You must miss that loads. I used to ride when I was younger, but it's just prohibitively expensive for me to do it regularly now. Good luck with FEC no. 3 on Mon, that's one milestone cleared, on to the next phase!
Suze and Alex, good luck on Monday, I'll be thinking of you. And Bookworm, congrats on finishing ec. Fingers crossed that t will be better.
Oncewild, I too am trying to make some changes to lifestyle that will not only help the immediate effects of the chemotherapy, but also long term. I'm a great believer that if doing something makes you miserable, then it won't be doing you any good, so to that end I'm not planning on becoming a vegan triathlete........but, I am cutting down on red meat, sugar and dairy and I'm upping veg, water and exercise. These are small things that are easy to achieve and make feel I'm doing something positive for myself. I've also been feeling absolutely fine since the first week after first FEC (except for the PICC problems) and have been socialising as normal. It definitely helps keep me sane and positive as I still feel normal. In fact, I'm off to Woburn Safari Park tomorrow with the kids and some friends, hope I don't get attacked by a lion or a rhino, that would be a bummer ; ))
Hope everyone else is doing ok, lots of hugs to you all from me xxx
The saga of my PICC line continues. The original line was removed and a new one put in. They used a vein next to the first one. I was ecstatic when it went in all the way! No apparent blockage or refusal to go round the corner this time...or so we thought. X-ray showed a different story. It had looped back on itself when it got to the blockage. They fiddled about with it, another X-ray , no luck, it was still looped. So in the end they pulled it back a few centimetres and left it very much like the first one had been, more like a midline than a PICC.
Apparently, the vascular team will have a con flab and let me know what they decide next week. I may end up with a central line or a portacath.
The chemo went in a lot slower this time. I told the nurse about my awful pain when I had dexamethasone so she put it in a 100ml bag of saline and I didn't feel a thing.
No nausea yet. Fingers crossed that Emend will work it's magic. Sending lots of positive thoughts to all you lovely ladies.
Hi all, Hazel and Bookworm I hope your feeling ok today. Diana I hope it has gone well and the picc line wasn't too much of a problem. Pookie how's the hair situation? Oncewild I keep thinking about the excercise bit but that is all it is at the moment. I was very active before this started and used to horse ride regularly but with surgery and chemo I haven't had the chance to get back on and the longer I go through chemo the more tired I am getting. I am due fec number 3 on Monday but am hoping once I move on to T I get a bit more energy and can do more. Floppy what side effects have you had with the T? I feel like all my muscles are wasting away...though I am eating very healthily. As for socialising I still tend to go out for lunch and meals wth friends after the first week. Alex I'm with you about going back to do it all again but it's another step closer to the finishing line. And on a positive at least I can watch the olympics for the next few weeks 🙂 hope everyone has a good weekend xx
I hope you are all coping OK. I shall be thinking of you Alex as we both go for our second FEC on Tuesday - hoping you have an easier time this cycle.
In answer to Oncewild's post, I'm reading an interesting book called 'Anti-cancer - a new way of life' by Dr David Servan-Schreiber, which is very readable and talks about how to nurture the body's own cancer-fighting cells by creating an 'anti-cancer' environment. He has had brain cancer himself, and it was in response to this that he started doing research. Certain foods, for example, can encourage inflammation, and it is in these environments that cancer cells might take hold. It is certainly changing the way I shop for food and other products and is well worth a read.
Regarding exercise, I agree with Oncewild that it's so important to try and maintain some level of fitness. The classes I attend are peopled by all shapes and sizes, and I don't feel anybody is looking beyond my baggy teashirt at whether my boobs are perfectly symetrical. A good sports bra and lightweight prosthesis is a good investment. I also had a word with the teachers before the class so that they know I'm in treatment and might have to sit something out. I hasten to add that we're talking about Pilates and Core Stability classes here, not spin or aerobics! I'm doing slightly less walking than before, but I go with various groups, which makes it more sociable.
Last time I had FEC, I went for a long walk straight afterwards, before the nausea kicked in, and I think it helped. I shall try again on Tuesday, walking back from the hospital, but have hubby waiting by the phone in case I need picking up!
Big hugs to everyone, and have a good weekend.
On finishing the EC's. That's great news. Enjoy the garden!
I did really badly on the FEC's but for me, T is proving to be much better. Although side effects are still there I am at least able to get out of bed and bathe most days. Even been out of the house for short trips.
They did watch me closely for my first T and i also asked for a smaller dose for the first one.