Cat - congrats on finishing your radiotherapy. It's a good feeling isn't it.
Like a number of others I'm suffering from joint pain and pins and needles too (I'm also not on any other drugs as I'm TN). For me it started between Christmas and New Year. I thought it was my menopause symptoms returning as about 18 months previous I'd been experiencing pins / needles and stiff fingers / painful Achilles etc. After a load of tests to rule out other things my GP concluded it was as a result of falling levels of estrogen due to menopause. So on to HRT I went. Some of the problems started to lessen straight away and then everything completely disappeared after about 5 months. But I had to come off HRT for chemo and the symptoms suddenly returned with a vengeance late December (about 5 months after stopping HRT). I'd just come to the conclusion it was just because the chemo had reduced my estrogen levels even further. I mentioned it to my onc last week and asked if I could go back on HRT but that's a no. I'm seeing my GP in March as he mentioned there were alternatives to HRT so I'm hoping he can pull something out of the bag for me as like others I'm hobbling when I get out of bed or if I've been sat for a while. I'm also trying yoga as a colleague told me this helped them but I'm only a week or so in for this so it's too early to tell.
So if anyone finds something that works for them - please share.
I started to get SEs about 3 weeks in but nothing that bothered me too much. I had similar symptoms to prickly heat so took anti histamine tablets for the itchiness.
I wish the hair on my head would grow quicker too! I guess we have to be patient….sigh.
I also feel like a 90 year old some days, but I’m thinking that exercise should help. So far I haven’t done anything more than walking.
Thanks! That was exactly what happened to me, I posted the messages and then they disappeared! Very strange isn’t it.
I’m not sure how long I will remain on Tamoxifen for, I think I might be moved to Letrozole, or something else, after a couple of years. No idea how they decide who has what when.
I hope you get the pain in your feet sorted, sounds painful.
Take care everyone
Cat, Congrats on finishing radiotherapy.
I have also had problems with sending messages. I keep writing them and then posting and then they disappear! This is my third attempt today...
In response to your question - I’m on Letrozole not Tamoxifen, although I think SEs are similar!
Tarnia, I am also struggling with muscle/joint problems and I’m fine for a while, then when I stop or sit down and really struggle to get up and start moving again. I also feel like a women of 90, especially when I get up in the morning!
My my feet are also really bad- pins and needles and then if I walk for a while, they start to hurt and throb......oh well I’m seeing Oncologist next week, so I will see what they say.
Glad to hear you’ve finished radiotherapy with very few side effects. I’ve had 9 of my 23 so far so getting there and up to now no side effects 🤞🏼 Using cream 3 times a day.
My leg hair has returned in fact everything seems to be slowly returning to normal ( although wish the hair on my head would grow quicker)!
Im getting really bad joint pain currently and im not on any other medication so i’m assuming it’s a late side effect of chemotherapy. I’m ok if I keep moving but after I rest then move again I’m like an old woman of 90 which is really annoying. Up to now I’ve continued with my running but I think it’s time I stopped for a while to let my joints heel which again is annoying as it’s the one thing I love to do and it’s kept things “normal” through treatment so far ☹️
Take care ladies
The reason I have been quiet on the forum for the last few weeks is because I tried to send responses but for some reason my posts are not appearing, so I’m trying again on a different device in the hope that it works this time!
I finished radiotherapy last week – hooray! I had a round trip of over 60 miles each day but didn’t suffer too much with SE’s other than a bit of tiredness and the usual soreness/redness. For a couple of days my nipple was sore and weeping but that was short lived thankfully.
My hair is growing back, but very slowly, only have a few centimetres so far (not sure if it will be curly yet, but probably as my hair was naturally curly before!). Nothing under my arms or legs yet which is fine by me!
Hi Jude, good to hear you’re getting on well at work, not long now until your holiday! Sounds like we’re all booking holidays which we definitely deserve. I’m off to Tenerife with my OH mid March but haven’t managed to lose the weight I put on during chemo yet! I’m also on Herceptin and recently started taking Tamoxifen too. I still get tired if I try to do too much but not sure if it’s after effects of treatment, Herceptin or Tamoxifen or most likely a mix of all of them! I’m not getting nose bleeds any more.
Hi Tarnia, I hope the radiotherapy is going well, I think you’re half way there now. I found the last couple of weeks went by quickly. Keep up the moisturising, I’m sure it helps a lot. I’m trying to decide when to dye my hair for first time, at the moment I don’t feel I have enough of it!
Hi Sue, good luck with your trial. And good to hear acupuncture is making a difference, I have thought about having acupuncture too if needed. Congrats on going public with your own hair, I’m going to a Spa in a few weeks time too and a few days later I go to Tenerife so will go public with my own hair then…eek!
Hi Jo, I’m getting aches and pains in my joints too but think it might be a SE from Herceptin, not really sure. Are you on Tamoxifen? I don’t know if I’ve been on it long enough for all the SEs to kick in yet….time will tell.
Take care ladies…..I really hope this post gets to you!
No beard for me at the moment 😂
I’ve had my hair coloured again but a slightly cooler shade & it looks a lot better now it’s thickening up & the coverage is more even!
take care ladies
Jude - sorry to hear you're not liking your chemo curls - I have read previously that they don't last for ever so hopefully your hair will soon return to its pre chemo state 🤞. I'm looking more and more tufty every day and as my hair gets longer ie about 2cms now - I'm finding that my wig is sometimes slipping which is becoming a real pain.
On another note has anyone else turned into a bearded lady?? I've noticed over the last week or so the fine downy hair on my face seems to be getting longer. However I'm not sure if it's just returning to its pre chemo state and that I'm noticing it more cos theres no other hair around my face to mask it or if this is a genuine post chemo gift 😬. Luckily its very fair and fine at the moment but if it goes the way of the hair on my head I'll have a grey beard in time for my hols 😂😂.
Have a fun weekend all
Im pleased to report that my hair is now growing well. Eyebrows and eyelashes actually resemble eyebrows and lashes! I had to shave my legs the other day.
I went away with friends at the weekend and survived......thought I would get tired but managed ok although this week I have been shattered!
Sleeping really well but definitely still tired overall.
I’m not on herceptin so can’t comment on SEs but I know the hormone tablets are causing me achy joints and tired muscles, sometimes I get up in the morning and can’t actually walk as everything has seized up. Also if I have been sitting down for a while my legs just seize up, oncologists said I need to get back to proper exercise not just walking as that will help muscle issues.
Take Care all.
To be honest they are very unattractive curls mainly around my ears and my hair is still very short, I’m really not liking it 🙁 I’ve also got a tufty area on the crown!
I am pleased with how my eyebrows & eyelashes are growing now though & like you Tarnia the hair down there is making an appearance although I didn’t lose it totally
Re tiredness how are you all feeling? I’ve been back at work for 2 weeks & although I feel ok I am tired but not sleeping particularly well. I’ve read that the side effects of herceptin include tiredness & insomnia so it could be that. I’m also continuing to have a few nosebleeds within a week of each herceptin injection - anyone else? It’s not down as a side effect so who knows!
Take care all x
I didn’t lose all my hair because of cold capping but all of it has started growing really curly which for me is really strange as I’ve always had dead straight hair! Not quite sure what to do with it but I’m just thankful it’s hair and growing 😂 I finish radiotherapy on 8/3 so I’m going to book myself in to get it dyed on 9/3 something to look forward to!
My eyebrows are growing back too and top eyelashes on one eye but no signs on the other eye just yet...oh and my lady garden is growing well too 😂😂 not that I’ve missed that!!
sue glad your nasal hair is growing, no more runny noses for you 👍🏽
Take care all
Curly hair Jude - how exciting! Mine is still at the spikey stage - i look like I'm a leading character in the Tufty club 🤣🤣. I went public with my own hair yesterday - Im at a spa for a few days so not able to wear my wig in the steam rooms and saunas etc
Giud news re the nasal hair!
My is coming back as well & it’s great not to have a permanent runny nose!
my eyebrows & eyelashes are filling out as well which is good, but quite mascara ready but getting there
My hair is starting to go curly...
I might be over sharing but this will mean nothing to the others in my life - but I was so excited to see just now that my nose hair is back 😂😂👏👏👏.
Happy Monday all
Sue xx 😘😘
Glad the acupuncture is working for you. I’ve also heard that massaging the scalp helps the hair to grow. I’ve also heard that black Jamaican castor oil is also very good for hair growth so I’ve been massaging that into my scalp and leaving it overnight to see if it speeds things up! Only time will tell!
Have a good weekend all
That’s good news that the acupuncture seems to be helping your hot flushes!
I’m going to take up the hairbrush challenge, it’s definitely worth giving it a go, pleased that it’s seems to be working for you
Morning ladies - hope ur all doing ok.
Just wanted to let you know that the Acupuncture sessions I've been having for hot flushes etc seem to have produced positive results - whilst they haven't gone completely they have reduced in frequency and intensity so probably worth a try if you are being affected by them.
And also I've been doing a little solo experiment too! I remember reading yonks ago that brushing your hair encourages it to grow - something to do with stimulating the hair follicles if I remember correctly. So, whilst my hair doesn't by any stretch of the imagination actually need to be brushed I've been religiously brush my hair / scalp twice a day for the last week and I don't know if it's coincidence or if this actually works but I'm convinced I've had a growth spurt since I started. I'm not saying it's definitely worked but I'm going to continue to do it - so again anyone who's frustrated that your hair isn't coming back as fast as you'd hoped maybe reach for that hairbrush. I'm obsessively doing ten stokes front to back in sections all over my head. Fingers crossed.
Enjoy ur weekends and if anyone takes on the hairbrush challenge - post updates on the results.
Tarnia, I do drink more now than I did pre chemo I think it is a good habit to get into, although without scaremongering it can be a sign of diabetes so may be worth seeing a doctor or mentioning it to your oncologist or breast care nurse if you are excessively thirsty.
Sue, good luck on the trial & well done on booking lots of hols! It’s great having things to look forward to during the winter
Don’t rush back to work. I think everyone needs to do it in their own time. I found that now I’m feeling stronger I felt like I needed to get a routine back & luckily I had changed to a 4 day week 18 months ago. This week has gone ok but I’m glad it’s friday tomorrow!
take care all
I'm certainly drinking more water than I did previously but I think that's possibly habit from chemo days. I also wonder if there may be a chance that your body got used to more water during chemo so is asking for it by telling you you're thirsty?
In other news I signed up for the add aspirin trial yesterday so I'm starting the run in period today, will have a check up in 8 weeks or so and if all is ok I'll be on to the 5yr trial. It's a randomised allocation of drugs so neither I nor my doctors will know what I'm getting.
And in yet more news I've been on a holiday booking rampage and in the course of a week booked 3 holidays which are in addition to the ones we've already got planned. One is only for two nights but I'm still counting it 😂😂😂
We'll done on going back to work Jude - I'm not quite ready yet - I'm starting to do more but still getting tired quite easily so not sure it's the right thing for me to go back just yet as I want to make sure that when I am back I'm not spending to much of.my time away from work during my phased return recovering from being at work. I'm also thinking of going back part-time if that's an option but will leave that until I've been back a while - see how things go
Hope everyone is doing ok
I just wanted to ask you all if any of you are thirsty all the time? I finished chemo 10 weeks ago but I find I’m constantly thirsty! Not sure if this is normal or something I should be worried about 🤔
On a positive note my first radiotherapy all went to plan today. 1 done just 22 to go.
Jude - well done on going back to work. A bit of normality back in your life. It’s good to be getting back to normal.
Good luck with the radiotherapy - don’t forget plenty of water & moisturiser & if you do have any issues tell the radiographers as they can help
Well done on booking the holiday, it will come round really fast
I started back at work this week & it’s going better than I expected!
Jo - hope your check up went ok
Take care ladies
I finally start radiotherapy tomorrow! I’m having 4 and a half weeks. Glad to be on the last leg of this journey but have to admit I’m not looking forward to the 25 mile round trip everyday 🤨
Jude today I’ve also booked a holiday to Mexico going in April! It’s always good to have something to look forward to and boy do we all deserve it!
Hope everyone is doing well.
I'm the same trying to eat better & exercise more, although I have had a bar of chocolate today!
My diet was shocking during chemo & I’ve put a good 7-10lbs on - got to lose it as I’m going to Mexico in just over 6 weeks!
That sounds good, you’ll obviously get monitored more which can only be a good thing
Hope you don’t have any tricky side effects
Its the MonarchE trial, phase 3. Basically the drug is already being used for patients with advanced BC (hormone positive) as it reduces growth/spread. The trial is looking at whether the drug will prevent recurrence in people that have had hormone+ve BC. I’ll still have my treatment as planned - hormone therapy and biosulphates but with the added drug.
Just a little update- I’ve signed up to a trial and have been randomised to get the drug!
Initially pleased about this but pick up drugs tomorrow so starting to get apprehensive 😬
Jo - yes it was good to be know how it will work going forward & I do like a plan
Good luck with your appointment x
That all sounds positive and some reassurance to know you will be having mammograms regularly for ten years.
Im seeing my surgeon on Friday and like you I had surgery in June. Hopefully I’ll get a follow up plan as well.
Sue, I got offered the Asprin trial but I didn’t like the placebo part as I’ve read before how well Asprin works against cancer! So I spoke to my oncologist about it and she’s happy for me to take a low dose Asprin every day 75mg which you can buy of the counter. You could do this yourself too and then you wouldn’t be part of a trial so wouldn’t get problems with insurance 🤔 ....just a thought x
Jude, I’m so glad your hair was a success. Don’t worry about it still being thin in places it won’t take long to thicken up, will be getting thicker everyday x
Cat, I’m triple negative so after radiotherapy I’m on my own 🤨 there is no targeted therapy for tripple negative but hopefully your hair will be just fine on Tamoxifen X
lots of love all
We are going to Mexico mid March for 11 days & we are using Good to go insurance - £260.
I’m on herceptin & bisphosponates & my husband had a brain haemorrhage 12 years ago & is on medication for epilepsy & high blood pressure; so I didn’t think that was too bad
I'm not brave enough to go without headwear or a wig yet, mainly because the growth & thickness is patchy in parts. Although I do sit around the house & answer the door bareheaded 😂
I've got 7 weeks until we go to Mexico so I’m hoping it loooks ok by then
Sorry I was ERnegative so don’t need tamoxifen - hope some of the other ladies can assist, good luck with it
I also just wanted to say how useful this chemo thread has been for me, I think it’s really helped with the physical aspects of cancer/chemo & also the emotional side of going through it with ladies who understand - thanks to all of you 👍