@Georgie - I have my first Zometa infusion tomorrow (right after Herceptin injection, which is right after radiotherapy). I'll report back on my experience, but the combination of stuff will make it hard to tease out the cause of anything (also have Zoladex injection and start AIs on Friday).
A tip: @Feenix, from the May 2018 surgery thread, mentioned that she was counselled by a fellow patient to take some paracetamol before Zometa to help with the flu-like symptoms that can sometimes hit. FWIW, I met someone last week who said she got herself all wound up with worry about what would happen with Zometa and she didn't experience any side effects. (She did have a rough time during chemo.) So, as ever, there's a range of possibilities...
Thanks for your replies, and Reddi, for your confirmation of side effects from herceptin.
I wish I could meet even one professional in my team who would admit that there are side effects with this drug! I know they don't happen to everyone, and that many will not experience the sleepless nights etc., but it certainly is not my imagination!
Im so keen to have my hair back properly..... my daughter gets married in June, and I would love so much to have my hair back to style by then. Kip I love your latest profile pic! Your hair looks lovely, and if mine is as 'long' (!) as that by June 1st then I will be very happy 😊.
I might go back to work part time at the end of this month. Need something else to think about, and perhaps that will help with sleep too!
Is anyone on zometa (zoledronic acid)? It's for bones. I have my second dose in March, but again the side effects include hair loss, plus lower immunity and aching and nausea, plus many many more! I'm a bit terrified to have it....
Shi, oh yes I am a great participant in the duvet hokey cokey... last night I think I did it on repeat! Afternoon naps sound lovely.. might have to participate.
Kip 😘😘😁😁it’s the duvet cokey, you put you left leg in, you left leg out you do the duvet cokey and you shake it all about 😁😁it’s your new normal 😘😘afternoon naps are quite common too. Hi reddi 😘😘💕💕✨✨Shi xx
Hi Reddi, you are so lucky with the sleeping... I wish my Mum had popped the vacuum on when I was small then... I am tossing and turning at the moment, hot or cold then stiff and crampy.. oh dear. Funnily enough don't seem to tired during the day though. maybe I get more sleep than I feel I do?
@GeorgieGee I'm getting Herceptin, but also Zoladex to turn off my ovaries, and I'm having no trouble sleeping -- just wake up sometimes from hot flushes (less so than during chemo), and once I've regained a comfy body temp, I get back to sleep quickly. But I've always been a pretty good sleeper, even when I'm anxious about one thing or another. My mother says it's because she'd vacuum in the room with my crib when I was a baby, in hope I'd learn to sleep through anything. (Downside: I used to have a real problem sleeping through alarms.) I have found that I sleep the very best when I've had some good walking during the day -- though walking isn't the exercise for everyone. I've also been working tons over the past month, and getting back into a routine of work has helped me -- less time thinking about treatment, more time thinking about other stuff (but also taking more of a what-gets-done-gets-done attitude to it, as my OH has me under strict orders to decrease work-related stress).
Herceptin does sometimes cause hair thinning! I've been using the Lush red dot shampoo (called New) recommended by Shi and my hair has come back pretty well -- though it seems to have stalled, growth-wise over the last couple weeks. I'm definitely still in caps, as much because the little wiry grey stuff does not like to sit flat. Looks like I've got terrible static. And it doesn't look like anyone's idea of a haircut, not even a brutalist pixie, just yet.
How is the not-UTI pain? Has it got better for you? I hope so. 🤞
hi Shi - thanks for dropping in .. .this is the third attempt at posting .. they keep disappearing.. perhaps I am a robot! Must check into Club Tropicana as could do with a boogie and a cocktail!
Got signed off by radiotherapy yesterday, phew. All well, they are happy with me and have appintment for first mammograme 11th April (exactly 1 year since diagnosis) then follow up appt on 23rd April. Not looking forward to that but what will be will be. Also asked about my stiff butt/legs etc and she doesn't think its anything sinister and has asked me to self refer to physio to see what they can do, but I can also request a scan if I want reassurance. She said she would be very surprised if I wasnt stiff and achey as this is very common after chemo, rads and tamoxifen so have to go with it for a while and hopefully it will get better. Going to try Glucosamine and Chondrin which she suggested too.
Hope everyone else is doing ok?
Hi red rose 😘😘hows the dress shopping going? Have you found anything to rival that beautiful one you shared before? ❤️❤️❤️Not long now Mrs 😁😁😁hi June girls hope none of you got snowed in and any going through rads, hope alls well, club Tropicana thread awaits 🏖🏖🏖💕💕✨✨Shi xx
hi RedRose, those tattoos are incredible aren't they. Unfortunately would look a bit daft on my flat chest but would be amazing for some people wouldn't they. How are you doing? Found "that" dress yet?
Hi Ktk... thought I’d pop on here and say hi ... really good to see you are getting some energy back ... love the thought of cross trainer TV viewing... the only way to exercise.
Hi Georgie Gee, lovely to have you back but sorry to hear you are suffering with SEs. Lack of sleep just has to be one of the hardest things to deal with.. I think you can manage many things as long as you have had some decent sleep. I finished chemo at the end of Sept, then had node clearance (thankfully none remaining had cancer in them) then had 15 x rads which finished at end of December . I have also started Tamoxifen in November. You are not alone in finding it hard to get back some normality. Although my sleeping is not too bad, its nowhere near like it was in the good ole days! I have hot flushes during the night which wake me and I am suffering with terrible stiff joints which can be troublesome during the night too. Not sure if the aches and pains are chemo hangover or Tamoxifen or everything. But I was really hoping to ping back to the old me once treatment ended but that doesn't seem to happen for any of us really. I guess we have to expect that. A friend of mine who is 2 years clear now told me yesterday to be kind to ourselves and give ourselves time. . we have spent the good part of a year being poisoned and mutilated so its only understandable that things are creaking and moaning. I just want the old me back but am trying hard to get to like the new one! Luckily for me I work from home all the time (and just mornings) so its easy for me to carry on with that as its not always busy and I can crash on the sofa if I need to. I;ve also developed minor lymphodema so have a sleeve to wear when exercising or doing heavy work...plus more exercises. Just been doing stretching for the poorly side, can't miss a day or it seizes up. Oh the joys.
Hair - mine is growing a lot but completely different to anything I had before, completely grey, wiry and going curly.. not sure what to do with it. But everyone's growth is different so I am sure yours will catch up. I was HER- so dont have herceptin so can't comment on that but apparently Tamoxifen causes hair thinning too.. no escape
I hope the Dr gets to the bottom of your problems soon and that you can finally get a good nights sleep.
I thought it time for a good old catch up 😊. Have not been on here for a little while.
As you can tell if you look at the time I posted this, I'm not a sleeping beauty this morning!!
I think it is the herceptin that is the culprit. I simply cannot sleep. My GP stopped sleeping meds as he thought I might get addicted to them, so for the last 2 weeks, I have had terrible trouble, even though I'm exhausted emotionally and physically, getting to sleep. Last 'night' I was still awake at 6 am. I finished rads at the end of December and so am now just chilling and recuperating before I return to work. Should be tired from that; I kind of am, but still cannot drop off to sleep.
Occupational health have suggested I don't go back to work until end of Feb, but I am thinking I might start a bit before that. Am on half pay too, so the sooner I have proper salary back, the better! I will be on a phased return for 6 weeks, and can work from home too for some of that.
How are you all getting on with returning to 'normal' lives and work?
And how are ladies getting on with hair growth?
Mine is very uneven and I have very patchy regrowth. I am therefore still in scarves. As some of you know, I was very unwell on chemo, and the oncologist stopped it after 4 rounds and 3 bouts of sepsis, each worse than the previous one. So I finished chemo end of October. I am led to believe that herceptin also slows down hair growth, so I think that is happening too. But obviously I don't want to stop the herceptin because it is life saving for those of us with HER2 positive BC.
I have also since way before Christmas, been having terrible pain which I assumed were 3 or 4 UTI infections, but my GP said that they could not find anything growing in samples so does not want to give any more antibiotics, which is understandable, of course. Told my oncologist about this, and she arranged an MRI today, to rule out anything nasty. When the pain and uti symptoms come, around once every 2 weeks, it is quite unbearable and onc prescribed oramorph, which I've thank fully only had to take once last week.
It's been nice catching up on everyone's news, and I'm sorry I fell off the edge of the forum a little while ago. Would be interested to know if I am alone being able to do tigger impersonations all night long, or if others are finding herceptin having this effect? I'm negative to hormone involvement so no tamoxifen or anything....
I guess it's time to head on up to bed and try once more to sleep for a while.
All the the best to everyone.
Georgie Gee xx
@cdc How are things going? I realize you're still early on in your recovery, but I'm thinking of you and hoping everything goes smoothly.
Hi, don't panic... my hair began to sprout around the end of FEC 3 and then continued to grow throughout the 3 x Docetaxol's. My nurse said its quite normal and that they don't know why, she said if they did 3 x T first it would start to grow when you start FEC. Other ladies on my thread found they had started sprouting too. My eyebrows and lashes didn't go until I began T but they were back within a couple of months really.
As for the nails it was only about T No 2 that began the ridges on the nails. T definatley affects the fingers and toes more so keep and eye. Around Christmas time (3 months after finishing chemo) my nails have become brittle and the white bits snapped clean off, wasn't painful just very short nails. They are growing again now and the new growth at the bottom isn't ridged anymore. Hope that helps, its always a worry isn't it.. I used to worry about getting side effects then worry about not having the ones I thought I should...
PS just remembered... the day I had my first chemo, a lady sat opposite me on her 5th (3 x FEC and 2 x T) and I rememnber her telling me her hair was starting to sprout too!
I've just popped in from December thread. Hope you don't mind me asking as I'm sure I can remember you posting something before but just wondered when it was that your hair started to grow back. I've only had 2 FEC so far, due 3rd next week. Then scheduled to have 3 THP. I'm sure my hair has started to sprout a little so freaking out a little that chemo isn't working as well as it should!!! Also, I haven't had any discolouration or ridges on my nails. Is that more likely to happen with the Taxotere?
Thanks for your help x
Fabulous KTK... go you!! I'm very impressed.. its amazing how low on fitness you get over a few months isn't it.
Hi everyone, glad we are finding out ways back to the discussion. I think I have worked out how to get to my threads now, I click on my little photo up in the right hand corner, then go to my profile. When this loads, there is a drop down box somewhere to the left and you can select either "topics I participated in" or "my latest contributions'. My latest contributions brings up any threads I am currently chatting on, i.e. this one or May Surgery etc. So far that seems to work and I just reply to the last reply on there. Not sure if this right but seems to work for me without bringing up endless lists of other threads. I haven't dared change a topice heading or goodness knows what happens!
CDC - good to hear from you, glad all going well, keep up with resting, you look amazing on FB!!
Reddi - fingers crossed for February start date for Rads for you, been a wait hasn't it but they will fly by once you get going.
I'm still feeling the stiffness but have started doing some gentle exercises for my butt tendons to build them up a bit and seems to help a bit, with heat pad and less walking hopefully this will sort it out. Slept well last night too as put a pillow between my knees on my side and that definately helped. Still have the Tamoxifen shuffle when I wake up with old lady knees and feet. My morning routine is getting longer... I have started the Head Space App so do my 5 minute meditation, then I have to don the lovely lymphodema sleeve and do those exercises followed by arm massage and moisturise, then the butt ones and then finally get dressed... phew.. only glad I don't have to sort the wig and put that on as well these days as I'd need to be up at dawn! Musn't moan if it all helps its worth it. Sometimes I even fit in a 10 minute hoola hooping session whilst doing arm stretches... good job the neighbours can't see me!!
@cdc I don't think any of us understand how to reply to the general, rolling convo anymore. You're not alone.
So glad to hear you're resting and recuperating -- give your body the time it needs to heal and stitch back together. 💕 Are you watching or reading anything interesting? Or mostly napping and (I hope) being waited upon?
I had my RT planning meeting yesterday (CT, tattoos), but I'm not scheduled to have my first radiotherapy session until Thu, 7 Feb -- 56 days after my surgery. I'm not terribly pleased by this, but haven't heard back from the oncology secretary to confirm that the delay is fine. I'm guessing they gave me my first Zoladex injection, to suppress my ovaries, on 16 Jan in part to get me started on some treatment for the chemo-resistant but ER+ tumor in my left breast, which is the one getting irradiated. I'm also trying to feel assured by the fact that my surgeon got 3mm margins around the tumor. Herceptin injection no. 7 (of 18) was today; I'll get my first bisphosphonate infusion with no. 8 in three weeks' time. I'm feeling better about that infusion after learning that jawbone necrosis seems to happen in less than 1% of cases, and also after listening to Radio 4's From Our Home Correspondent from this past weekend, as the woman sharing her BC treatment journey talked a bit about starting bisphosponates herself. Have any of you been listening? It's not really news for any of us on this journey, but she's got a cozy voice.
Thank you, @Shi! 🌸
I'm wary of changing the subject line so that it's back to referring to a general rolling conversation among June 2018 chemo starters, but this topic / thread has morphed from forum redesign to broader things -- and I suspect is no longer attached to the general thread. 😞
Just working out if I am replying properly I’m here. The change of format is confusing me. All going well with my recovery. Just have to keep on top of my pain meds. They had to split my pectoral muscles to reach my vessels for part of the op and that’s now the most painful part of my body at the moment,
How do I see the conversations when I’m replying in general? My memory is not what it was so I need to see the conversations to see what’s happening with everyone x
Hello dear ladies,
i was just about to let you know what's going on with me.... I know I haven't been on here for a while - but I am afraid of putting this in the wrong place now. I will post and see what happens!
Oh dear Rosie that doesn't bode well does it. I think I'm finding my way a bit, just does some very odd things sometimes and seems difficult to follow a conversation. I won't give up though... these ladies are a god send to me!
Hi I am just browsing over posts this morning to see that other threads are struggling with the new format! I too accepted the invitation to take part in the trials but I gave up as I didn’t understand it either! 😬
Hi all, I hope I'm replying correctly, this is awful, this forum is my lifeline, I click in and out all day long and now I can't find where I want to be... grrrr..
Anyway, I will hang in there and hopefully post in the correct place.
Reddi - thanks for the advise on mindfullness apps... Ive downloaded HeadSpace to give that a try, only done 3 minutes so far, switching off a wired brain is quite difficult but a 3 minute sit in silence was nice though.
I hope we don't lose any ladies because of this site...can't do this without you guys.
@Anna_BCC Your forum rule -- that only the originator of a thread (or 'topic', to use the language in the Options pull-down menu) can change the thread subject/title -- sort of makes sense, since I could change the subject on a reply where the subject line originated with a post of mine...
But then why did my reply to @SallyG63 get a new subject line???
All I did was hit 'reply' under SallyG63's post, which had a subject line Re: June 2018 Chemo Starters, and my post was given a new subject line populated by the first sentence of my post (@SallyG63 Couldn't have put it more perfectly, with all replies to it as Re: @SallyG63 Couldn't have put it more perfectly).
@Jill1988 also replied, and had the same thing happen. Her post has the subject line 'Sally - that really made me laugh - it's a bit loud isn't...' But it ought to be part of the same thread as Sally's original post -- as should mine.
However, I just tested it, and anyone can edit the subject line on a post. I didn't realize that the subject line was a live input box on Android OS mobile, but it is. So you don't have to hit the menu buttons (there's no 'edit subject' option there, either); instead, you just click the text, delete it, and type something new in its place.
Separately, I decided to put 'June 2018 chemo starters' in my new subject lines so that people reading an email alert of a new post would know what forum/sub-forum it came from. It seems silly to have to manually add that information, and I doubt I'm alone in getting alerts for multiple forums with some of the same users posting across them and finding it incredibly helpful to know the subforum up front.
I know all web redesigns having teething problems, and that users familiar with a site almost always dislike redesigns, but once they've spent time getting used to it, all is fine. But this redesign seems to be throwing up a lot of issues with threading and ordering of posts, at least in the monthly threads, which tend to be the most active.
p.s. FWIW, I think there is just way too much dead air in the design, on both laptop/desktop and on Android OS mobile (I can't speak to iOS), for a forum. Unless your redesign has advertising blocks in mind, that dead air does not make the site more navigable -- it just forces the user to scroll more. I know this is pretty common with mobile-friendly designs these days, but it only makes sense for an advertising-heavy offer. (Does this redesign mean advertising is on the way?)
EDITED TO ADD: I'm not sure if this will help with everything, but for others struggling with the presentation of posts, try to navigate to the subforum (e.g., June 2018 Chemo Starters) and find the Options pull-down menu; if you're set to see Sort Newest to Oldest, then check the bottom of the page and make sure you're on page 1. This should put everything in straight chrono sequence, newest to oldest, regardless of the post topic/subject line.
Anna, the whole forum is a mess, not just the bit you refer to. The threads are not in date order for a start and I can't find any continuity . I do not have a mobile phone, only my laptop, which was fine until today. I may not persevere with it all as it is a very user-unfriendly site and is frustrating and time consuming.
Thank you for your feedback regarding the new look responsive Forum. I am sorry that you are having some issues. To edit the subject line you need to be the one who started the thread, that hasnt changed. To do so on mobile, click on the 3 grey dots in the top right hand corner of the post and then click edit. That will also give you an option of changing the subject line as well.
I Hope this helps
Digital Community Officer
I tried to change the subject line of my 2 most recent posts to make the topic of each post somewhat clear. But I was only able to do that on my laptop; I didn't see an easy way to edit the subject when accessing the board from my Android mobile.
I'm imagining the redesign is supposed to make the forums more mobile-friendly. However, whatever team made the changes didn't take into account that most of the individual boards aren't (currently) threaded by subject line/content; they're mostly rolling conversations, with each post touching on several topics and replying to lots of folks' posts. When you've got a board with 2,000+ posts like the June 2018 chemo starters (which is nothing close to Shi & Co's Oct 2017 chemo starters board) with haphazardly threaded posts (some posts made using the general reply button, some with a reply button on a specific post), the posts are going to be a mess. And now that posting requires replying to a specific message, and creates an alert titled with a 'subject line' populated by the first sentence of the post (rather than the general board name), it's a headache to parse the alerts, especially as I get alerts for quite a few boards (all those on which I've posted, and some others, too). Ugh.
I tend to really hate sites designed for mobile, even when I'm on my mobile, so I won't gripe about the design changes made on that front. (Though I'd be happy to do so, if BCC is looking for focus group feedback!)
Edited to add: For some reason, clicking on June 2018 chemo starters takes you to posts made in August 2018. Which makes no sense as a default view set-up, and I can't find where to play with those settings.
@Kip Here's the 2018 best mindfulness apps list that I shared earlier on the board. I chose 10% Happier; I think someone else (can't find the post) recommended Headspace.
Thanks Jill. I am such a dumbo when it come to techie stuff that I panic and get cross! xx
Don't know if this is going to end up on the right page, but here goes...
I can't work out how to find posts from before so may have asked this question...
I want to download an Mindfulness App to try, anyone got any ideas of what ones are best?