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February Chemo Starters 2018

Member

Re: February Chemo Starters 2018

Hi all

Bibi - i've had 8 herceptin injections so far but no tummy troubles. Looking at the side effects it sounds very much like the herceptin might be causing it but so difficult to know sometimes. I have a constant runny nose and  joint pain especially knees and fingers. Started on Ramapril as BP too high and that causes an irritating cough  which combined with the runny nose makes me sneeze - feels like a never ending cold ! 

Also on Tamoxifen so just the hot flushes and night sweats although i have noticed they arent so intense if i eat well and not too much sweet stuff. I only had 5 days of RT (reduced as in a trial ) but can sympathise with the boob redness - it became quite sore and tight after i finished. Pilates is helping to stretch it all out though.

Chrissy - sorry to hear you are feeling rough. Do you need to go back to work for financial reasons ? I couldnt decide how long to stay off but decided just to throw myself back into it and see what happens. They have been fab and just let me do whatever but actually i feel pretty good. The herceptin injections are 3 weekly and pretty thick so can be a bit stingy but they give them over a few minutes so not to bad.

Looking back on everything i feel the chemo was pretty easy - just feel like all these side effects albeit minor are just never ending. Have been looking into taking Turmeric/Curcumin - anyone had any experience of it or taking any other supplements ?

Member

Re: February Chemo Starters 2018

Hi everyone bibi you are  allowed to rant I finished my rads 2nd aug but past few weeks been getting bad side and chest pain that it’s keeping me awake at night . Bibi everyone is different so don’t give yourself a hard time. After radio I had bad reflux and had to have a gastroscopy which was vile . I still feel so tired and have such aches in my legs since treatment . It’s 8 weeks since I finished treatment and don’t feel much better and worry that I need to get back to work . How often are the herceptin injections? Is it painful ?

Member

Re: February Chemo Starters 2018

Thanks for your replies Flora and Wee Burd - I’ve had the 4 Herceptin with chemo and 2 injections so far - still 12 to do. The radiologists are adamant rads don’t cause nausea so I’m at a loss -nausea is listed for Letrozole and Herceptin so who knows🤷🏻‍♀️ I suspect it’s the Letrozole as I have it fairly regularly in the morning but it has been worse since the Herceptin jab last Friday. Just having a feeling sorry for myself day as I felt so bad - loads of people say how easy rads is compared to chemo and yet I’m feeling rubbish and tired. And my boob is starting to cook - very pink. Cant wait for it to finish - sorry for rambling moan - hope you are all OK .

Member

Re: February Chemo Starters 2018

Hi Bibi

I have had about 12 herceptin injections now, and am on letrozole, but don't ever get nauseous.  I'm also on zoladex to make sure i am post-menopausal.  I suspect it is more likely to be the rads making you feel unwell. How far through are you?    I finished my rads at the start of June.  I didn't get any side effects apart from skin peel as though i'd been sunburned.  I was more tired from driving from home, to work, to hospital and home again, as I did all driving for all but 3 or 4 of the 20 sessions and live 40 miles from work and 50 from hospital.    

 

Best wishes to everyone.  I haven't posted much as I have felt pretty much fine and well throughout, and finished chemo before most of you, because I was having only 4 sessions.  The herceptin was more important for my treatment plan.   Just waiting for an appointment for ovary removal now.

xxx

Member

Re: February Chemo Starters 2018

Hi Bibi I'm on herceptin injections. Had my first 3 along with the docetaxel and also had tummy issues however they cleared up when the chemo stopped. I've had another 5 since then and haven't had any noticeable side effects after the injections. I'm on tamoxifen just now and will be changed over to letrozole after 2 years. Mainly I get hot flushes and can't seem to shift any weight off but nothing else that seems to be from the treatment. Hope you get to the bottom of it.
Member

Re: February Chemo Starters 2018

Thanks Chrissy - I’ve had 4 with my chemo and had horrible tummy troubles afterwards but wasn’t never sure whether it was the Herceptin or the Docetaxol . I am just curious if anyone having the injections is having any side effects like that with the injections. I am having rads as well as Herceptin and Letrozole and something is making me nauseous and since injection last Friday I have been feeling a bit yuk - been quite bad today - trying to pin down what it is.

Hope you are keeping well Chrissy x

Member

Re: February Chemo Starters 2018

Hi bibi

as I am triple negative nothing else will work for me but I hope you are getting through it ok have you got many sessions booked x good luck x

Member

Re: February Chemo Starters 2018

Hi everyone - anyone having Herceptin injections? 

Member

Re: February Chemo Starters 2018

Hi miss green

well that hats been out again today. It’s such a lovely day but I think I’ve over done it today and have walked to far. You have been through so much. Where did your cancer come back in 2014. My reason for asking is that you had DIEP reconstruction so this is tissue from your stomach. So this year has the cancer come back in the chest area again?

you are right about self examination and I think they should teach it in school . I found my lump by chance so I was lucky. I expect you aren’t going back to work are you?

anyway I’ve got to get my 12 yr old from school she’s hurt her ankle ! Hope you feeling a little better xxx

 

Member

Re: February Chemo Starters 2018

Hi Chrissy

I am chuffed to hear you went and bought yourself a straw hat. I have worn mine so much this year it's getting a little battered.

Yes my recurrances are on the same side as my original diagnosis. Back in 2003 I had a mastectomy and immediate reconstruction (fat taken from my stomach which I think is a DIEP). I lost my nipple too but have a beautiful flower tattoo in it's place. Because of tumour locations and my lymphnodes were involved they gave me chemo and radio. I had a WLE in 2014 on the same boob but just put back on Tamoxifen and then at the end of Dec 17 I found out in was back. This time it also spread so it's now called Metastatic BC. The chemo seemed to work on the areas it spread to.

I think anyone who's had a serious illness get really anxious. It's normal. Checking your boob is a good thing so never beat yourself up for doing that xx
Member

Re: February Chemo Starters 2018

Hi miss green thankyou for your reply I scanned back in the blog and always remember the pic you put on with your straw hat and hubby having a little drinky. In fact in liked it that much I went and bought a straw hat too !,

i cant believe you’ve been going through this since 2003 ! It’s a good job you found them . I found mine by chance it was small 1cm but it didn’t make a difference as it had spread to my lymph glands and I do worry as they didn’t do a clearance and recommended just radio for it . When I wake at night my anxiety creeps in and I am examining myself . I can’t remember what surgery you have had already ? I had full mastectomy and nipple removed and SNB and implant . It sounds like you found the cancer again on the same side as you mention scar tissue. Has the cancer spread else where ?

I hope you are ok I bet you can’t wait for the end of Oct . I shall be thinking of you ❤️

Member

Re: February Chemo Starters 2018

Hi Chrissy

Yes that is secondaries. Well they think they were which is why I had chemo. I found my both recurrances by self checking my boob. Each time I thought I felt small lumps. Must admit I am not gentle like the professionals when I check. The BC Consultant even struggled to feel them but luckily they didn't just dismiss me and did an ultrasound. We honestly thought the areas I felt were scar tissue or fatty lumps but there again on my initial diagnosis back in 2003 the consultant thought it was fatty lumps. Seems to be a theme. Yes the WLE is a Wide Excision. I don't ever want to scare anyone with my experiences but cannot say enough to ladies "check check and check again" xx
Member

Re: February Chemo Starters 2018

Morning ladies - good to hear from you all

Wee burd your skin reaction to rads sounded painful - hope you are fully recovered from it now. 

My hair is thickening up- didn’t lose it is as I used cold cap but it definitely went thinner. It’s greyer and courser than it used to be - although I used to colour it so it could have been like this for ages lol. I’m hoping it will grow quickly but have read Herceptin can slow growth down - my daughter is getting married next May so I’m hoping for a longer style by then. Can’t decide whether to colour again or just accept the grey - going to wait till at least after rads and see how I feel.

Chrissy - luckily don’t have the lead legs but finding it hard to move them at any kind of pace when out walking - stamina is not up to much. I have a Fitbit and have had steps set at 5000 just to get me moving but have decided to up target in a bid to restore fitness. Some days I do a lot more than 5000 but if I’m too active for a few days - like last week went away and did loads of walking and cycling, I then need a few days rest and feel really tired.  It will keep plodding on - have just downloaded an audio book - Sapiens- and am aiming to walk and listen each morning to reach my target.

Miss Green can totally understand why you would want yearly scans - living with secondaries must be very hard. Think I am down for yearly mammograms for 5 years and 🤞will have no reoccurrence.

OK - off on my walk now - have a good day everyone x

Member

Re: February Chemo Starters 2018

Hi weeburd

lovely to hear from you your hair looks quite thick in your picture. I describe mine as looking like action man and it seems to be growing fast and is straight how I was before but grey 😭.

 

miss green omg I can’t believe what you have been through once is enough for anyone. Excuse me for my ignorance so is this secondaries that you have? How did you know it came back what symptoms did you have? Will you have more chemo after WLE (is this wide lobe excision?) I hope you are coping ok it’s really hard when treatment finishes as the emotional part seems to then kick in. 

 

I wanted to ask everyone have any of you still have lead legs I call it . When I sit down it is difficult to stand for a few moments and they ache . I used to be really fit when I do anything now they ache I feel like an old granny !! Sorry to any old granny’s out there ! It’s the top of my legs !

 

 

 

 

Member

Re: February Chemo Starters 2018

Hi weeburd

lovely to hear from you your hair looks quite thick in your picture. I describe mine as looking like action man and it seems to be growing fast and is straight how I was before but grey 😭.

 

miss green omg I can’t believe what you have been through once is enough for anyone. Excuse me for my ignorance so is this secondaries that you have? How did you know it came back what symptoms did you have? Will you have more chemo after WLE (is this wide lobe excision?) I hope you are coping ok it’s really hard when treatment finishes as the emotional part seems to then kick in. 

 

I wanted to ask everyone have any of you still have lead legs I call it . When I sit down it is difficult to stand for a few moments and they ache . I used to be really fit when I do anything now they ache I feel like an old granny !! Sorry to any old granny’s out there ! It’s the top of my legs !

 

 

Member

Re: February Chemo Starters 2018

Wee Burd - it's 12 weeks since I had my last chemo and my hair coverage has become more dense over the last 2 weeks. It now looks like I have chosen the skin head look rather than looking like a cancer patient.

Chrissy - I can imagine being triple negative and hearing about Rachel Bland must have knocked you for 6. I followed her on twitter and I can honestly say I was emotional over her death. My 2nd recurrance was 3.5 years after my 1st recurrance. It all stems from my original cancer that reared it's ugly head in 2003. This time around they also think it spread to my chest lymphnodes and right lung. Chemo seems to have sorted that out for now but wasn't completely successful on the boob area. I will be having another WLE on my recon at the end of Oct.

Xx

Member

Re: February Chemo Starters 2018

Hi All!
Macneech I had radiotherapy in July. The first few treatments took longer while they took extra images but after that it was just once a week that they took an extra picture. Once things got going the treatment didn't take so long. I had good mobility in my arm after surgery which helped but I also found that stretching exercises helped.
I found it much less tiring than chemo but was still quite tired and had a nap every afternoon.
During the treatment I didn't really have anything more than reddening around the breast but it looked much more burnt over the 2 weeks following treatment especially in the crease under my breast. The skin actually went almost black (I am ordinarily very fair skinned and don't tan easily). I couldn't wear a bra or even the soft crop tops that I had and the skin was very broken. Moisturising didn't help very much but the women on my Moving Forward Course had been given something called hydrogel (I think that's what it's called) and one of them gave me what she had left over and it gave instant relief. It's designed for burns victims. It's worth asking for.
Miss Green as far as I know I will be called in annually now for a mammogram but not a CT scan.
Chrissy my nails are still breaking although they aren't as sore as they were last month. My toenails are now starting to look as if they are going to start breaking.
How is everyone's hair? Mine is thickening up although it's growing much more slowly than it used to and it's now going weirdly curly which it has never been before!
Member

Re: February Chemo Starters 2018

Hi macneech, miss green and bibi

Macneech - I finished radio last month . Found it a bit uncomfortable and tiring but not as bad as chemo .i had radio to neck chest and axilla, by week 2 I had a terrible razor blade throat and used dissolvable paracetamol. The worse thing I had was reflux issues I had this during chemo. I rang the radio unit was told by one person it was connected as had radio to the neck area but then told by another it is not connected . Last week I had a gastroscopy which thankfully wasn’t sinister and if I watch what I eat ie not rich or greasy food it helps . The other prob I had and still have is pain on my side that I couldn’t wear a bra for 4 weeks and it still hurts. It Has affected my sleeping and goes along my ribs to chest bone and then across chest . Make sure you cream all your body religiously during radio and cover up although it will be easier now the sun doesn’t come out so much. I Went to moving forward course yesterday was great saw lymphodema nurse who said to moisturise affected arm every day and do exercises for life .

Also macneech I totally agree with you re CT I asked the same question and was told only if I have symptoms to which my reply was ‘it could be too late then’ as I am triple negative I feel even more paranoid as there is a higher risk of return in the next 3 years and Seeing what happened to the beautiful  Rachel bland radio presenter recently I have turned into an anxious paranoid blob . 

Has anyone still got nail issues and peripheral neuropathy ( still bad in hands and feet). Pins and needles wakes me at night.

miss green- why they can’t do an u/ sound is crazy as it wouldn’t even be a radiation risk to you. I believe it is cost issues. Was your 2nd occurrence far apart and was it a new cancer?

bibi- I wish you luck and that time goes quick for your radio. X

lovely to hear from you all good luck in your journeys x 

Member

Re: February Chemo Starters 2018

Morning - sorry to hear the radiotherapy is uncomfortable for you Macneech - I am starting Monday and have the usual apprehension waiting to start a new treatment- hope you can get through it without too much discomfort. I need to read through stuff again - I had forgotten people say to take paracetamol beforehand- thanks for the reminder. 

It would seem sensible to have yearly scans - I guess it all comes down to cost and also balancing effect of scans on body v finding something. 

Have a good weekend x

Member

Re: February Chemo Starters 2018

Hi Macneech

Sorry to hear you're finding Radiotherapy a pain. I have had it but it was back in 2003 and cannot remember what it was like. I couldn't have found it too bad as I went straight into work after each session but there again maybe time as dulled the memory lol.

I agree with you on wanting regular scans. I wish they did ultra sounds on reconstructed boobs. I asked my BC consultant if I will have an annual one now due to having 2 recurrances and neither of them showing on a CT. He said no it will be still down to manual checks. Xx
Member

Re: February Chemo Starters 2018

Anyone of you lovely ladies going through radiotherapy now?. I have had 4 sessions so far and it hasn't been as comfortable as I"d hoped. Having to keep my arms up above my head for what seemed for ages on the first couple sessions was really sore. Taken Brufen and paracetamol before now which has made it a bit easier.Treatment today was done much quicker as they were ' happy with the imagery" thank God! Not sure if it is just me being s big pathetic or whether the Tamoxifen I have not long started is playing with my joints! It takes me half an hour to get my body moving in the morning and I considered myself quite fit!!

Last leg of treatment for me so now the paranoia about recurrence and secondaries is kicking in😔.I asked my consultant why we don t get offered a yearly CT/ bone scan.He says they would only re- scan if I became symptomatic - surely it might be too late then. 

Any thoughts ?? Hope everyone is doing ok and have waved chemo goodbye! 😙

Community Manager

Re: February Chemo Starters 2018

Hi MissGreen

 

There is an information page on the Breast Cancer Care website about all our Moving Forward courses.  There is also a Moving Forward resource pack which you may find interesting or helpful.

 

Many people find our new app, BECCA very helpful for them to turn to after they have finished active treatment.

 

Best wishes
Anna
Digital Community Officer

 

 

Member

Re: February Chemo Starters 2018

Thanks Wee Burd I shall investigate xx
Member

Re: February Chemo Starters 2018

Miss Green the information about the Moving Forward Course wasn't from my care team it came from a random conversation with a lady in the Beatson cancer charity shop when I was buying a pen! I then searched on the Breast Cancer Care website for a course near me. I feel that the hospital/oncology team could do more by way of pointing patients in the right direction for follow on services although to be fair I am getting a home visit on Friday from someone on the Macmillan 1 to 1 support team to discuss any concerns that I have now that my treatment is mostly finished.
Member

Re: February Chemo Starters 2018

Hi Wee Burd

Glad to hear you're back to work albeit on a phased return. I am lucky that my boss bypassed HR with my phased return and I cld work what I wanted. I have been working full time for the past few weeks but having a short lunch which means I can get a later train into work. I have used annual leave to cover quite a few hospital appointments as my company's policy is if you need more than 2 hrs away you need to take it as sick and I only have 3 days left of full sick pay hence using annual leave.

My BC / Onc team haven't mentioned anything about courses to help me. Maybe it's because I have not finished being poked and prodded yet.

Xx
Member

Re: February Chemo Starters 2018

Hi everyone

 

hope you are all well.  I'm on week 2 of my phased return to work.  Doing alternate mornings again this week, and next week will be going Mon, Tue and Wed, but then am off from Thursday for a week's holiday!  Really looking forward to having a break away with my husband and the dog.  We're not going far - just an hour or so away. but it's to a lovely HPB property in the countryside, with a swimming pool and plenty of walking to be done.

 

Work is going fine so far - it's difficult to get up and leave at lunchtime, but I'm determined to be kind to myself and not get swept back into the full on pressure like before.  While I'm on my phased return I can either record the time out of the office as sick leave (in which case I only get half pay) or take it as annual leave or flexi leave (on full pay).  It doesn't seem right, especially as the policies published in the staff handbook don't say anything about that, this is just what I've been told by the business managers.  I've decided to let it be recorded as sick leave until the end of this month, as my doctor's line runs until then, and next week I'll start using the flexi credits and annual leave.

 

My boss has been really supportive and basically left me to decide what I thought would work for me and is willing to come and go with the plan. 

 

I recently discovered that the hospital has free complementary therapies available for cancer patients, so I went last week and today and have had lovely relaxing massages.  My boss has agreed that I can continue going on a Tuesday morning while I'm on the phased return (they only have appointments on Tuesday mornings) and just go into work later.  I'm feeling the benefit of giving myself a bit of extra TLC and would highly recommend it if you get the opportunity!

 

This week is the final session of the Moving Forward course - I would definitely recommend it if you have one near to you.  It's been really helpful meeting other women who've come through breast cancer treatment and sharing experiences.  The sessions have included talks giving advice on looking after yourself and getting to know your new shape, avoiding/reducing lymphoedema, exercise, nutrition, hormone therapies and side effects, and bras/prostheses. Not everything has been strictly relevant to my own situation, but it's all been of interest and the various speakers have been really helpful and answered loads of questions.  I'm really glad I got the chance to go on the course.

 

Good to hear that everyone is coming through the tunnel!

 

Member

Re: February Chemo Starters 2018

Hi ladies

Well that will teach me to check this page a bit more regularly...thought that everyone was off to other things ! Have read through all that i missed - good to hear all your news.

I have finished chemo and RT now which is a relief. I was lucky enough to get in the Fast Forward trial for RT - 15 (usual treament)  v 5 sessions.. i had the 5 which i am grateful for - everyone was very nice but it was soo boring waiting ofr treatment and tedious having to drive every day. Quite red and stiff arm but all improving.

Mood a bit unpredictable. Have had a few tired days but generally ok - just the motivation to do anything is my problem. Night sweats are awful - fan on low all night. Started Tamoxifen so not sure if thats making it worse - was already having them prior to starting. Nails discoloured but no lifting which is a relief - were extremely tender for few weeks. 

Due 7th Herceptin next week - Healthcare at Home visiting at home....fab service, never knew it existed. They will give me the injection at work if i want to - just need to stay with me for 2 hrs to make sure no reactions. Anyone else get a drippy nose from it ? Hair is growing back at a rate of knots - quite a nice shade of grey...not sure if i'll stick with it though ! Eyebrows and lashes minimal  - dont feel i have much protection from dust etc, same with nasal hair...i sneeze far more than i used to !

Due to go back to work 17th sept on phased return over 6 weeks - worked it all out with my manager but he has said its entirely up to me if i want to slow it down or do more. They have been so supportive but then if a cancer services dept cant do that theres no hope ! 

Chrissy - Cant believe you have to use AL....thats disgusting. I get paid full time from the start - should be the same wherever you work in the NHS.

Take care all and enjoy the rest of the BH...peeing it down here so wont be doing much i feel ! xx

Member

Re: February Chemo Starters 2018

Hi Chrissy - I too work for the NHS and in my case they have been supportive do far. I have been off since Jan and could have half pay until Dec I think.I have had one occupational health review where I more or less told them what my phased return would be.I have also been given 12 weeks free access to our staff swimming pool and gym which is a bonus.Strange how different trusts treat their staff so differently. 

Thank you for the advice 're rest breaks.

Bibi - glad to hear you are doing ok.I am trying to  gradually increase my stamina.Went back to my ballroom dancing class weds eve - got quite exhausted and very hot just doing the Tango!!

I rarely do any manual handling at work now so I hope I will be ok when I go back. It's my brs8n for I am worried about.Just about managed the Tango routine after a few repeats- my short term memory has disappeared! 

Xxx

Member

Re: February Chemo Starters 2018

Hi Chrissy - yes agree the mood swings are just part of the journey. I had some counselling a few months ago and found it helpful so I hope you do too. I have already been through menopause so it’s not that - not impressed to hear that Letrozole which I started today could make those symptoms happen again! Was bad enough the first time. 

Meeting with oncologist was good, have to have CT scan for planning the radiotherapy and it will start 2-3 weeks after that- so most likely looking at late September by the time that starts.I will be having 3 weeks and the a week of boosters , so still a way to go. 

Herceptin injections will start now - just waiting for appointment for first one. 

Lots of waiting about again - makes it hard to plan stuff but am trying to get a few things sorted. Looking forward to another family wedding this weekend - hope my energy levels lift by then - so tired again today . 

Hope everyone is making progress towards the end - hugs to all xxx

Member

Re: February Chemo Starters 2018

Hi Bibi
You sound like you are doing really well and I agree this thread has been really supportive. I did join the radio one but returned to this as felt we have all been through this journey together and understand each other . I’m sure the low mood days may be because of what we have been through it’s normal and good to let it out . I’m starting counselling soon . Since I’ve been off it’s allowed me to think and reflect on lots of things even my childhood and it’s amazing how we sweep things away . So girl you cry when you want to we have been through so much . A friend texted me yesterday and said great you’ve finished treatment and feel normal again . Well I don’t feel normal I feel that I never asked for this to happen and now realise it will be a long process .
I’m not sure Bibi if this treatment has put you through the menopause or you already are but that can also cause mood swings x

Keep doing your arm exercises you will get there soon hope your onc appointment went well x
Member

Re: February Chemo Starters 2018

Morning everyone - agree it’s good to keep in touch even though chemo over - feel a connection on this thread - have read the surgery ones and radiotherapy but haven’t commented on any - this one feels like home 😊

Im recovering from surgery well - breast scar is healed, lymph node one taking longer but getting there - got a little persistent scab that won’t go away.

Pain and movement has started improving rapidly just in last few days , been doing exercises religiously and yesterday noticed I moved without thinking about it so am hopeful Inwill be OK by time radiotherapy starts. 

I am seeing oncologist this afternoon so hopefully will find out time scale for radiotherapy and herceptin injections. 

Feeling good mostly , get tired - but I am guilty of having days when I do too much just trying to be normal again and then crash and burn for the day. Have been away for the weekend , did loads of walking, came home and went out to friends for dinner, today am on sofa in PJ’s till hospital appointment later 😂. Still having some down days - just randomly - seems to be no pattern but had a very weepy day last week - but felt better the next day- guess it’s just part of the process. 

I hope your return to work goes well McNeech and on your dissertation- my brain is still losing words don’t think I could hope with something academic - hope you manage to enjoy completing it. 

Chrissy hope you get the reflux sorted - I haven’t had any since finishing the chemo 🤞 it won’t come back- I was taking omeprazole and it worked well but have stopped it now.

I am fortunate in that I don’t work so don’t have those worries of reviews/ sick pay 

/ phased return to worry about, but hope you all manage to sort - it’s at the point you need these things you realise the value of good support - sending you all hugs x

I have heard mention of the Moving Forward course but not been given any specific details yet but will look at it. 

Take care and keep getting well all 

Bibi xxx

Member

Re: February Chemo Starters 2018

Morning everyone thanks for your posts spoke to gp yesterday advised to stop esomperazole and he is referring me for a scope ( another thing) ! 

Macneech - I rang radio unit re radio to neck area and was told it wouldn’t cause the problem that I have but you do get a very sore throat so get dispersible paracetamol or ask and they will sort for you. I hope you get started soon . I didn’t find it as bad as chemo but I am tired and extremely sore on the side of chest and can’t lie that side . Just take it easy as your body has already been through a lot .

glad you got away and well done for being wig less ! I haven’t worn mine in ages too warm I just wear a straw hat or Baker boy cap. Mine has started growing and it’s scarey how quick .

i agree with you flushes are a pain and interrupt sleep I’m taking sage leaf but told can take a while to work (if they do) !!

you are brave going back to work before radio hope it goes ok . I’m still off sick hit no pay December so hope to go back in new year .

 

Got another sick review Thursday they insist every 6 weeks although this one has been 8 I don’t find them helpful but stressful got the union rep with me this time. I have to use all my annual leave for phased return even if it’s a half day . I’m not impressed with the lack of support from the trust and I’m still waiting for counselling .

 

Hope you will be ok with work macneech remember if you are tired you are entitled to tiredness breaks under the discrimination and equality act . Macmillan do a good booklet called your rights at work worth looking at . I can’t remember what you do again but I work for NHS and they certainly haven’t been very caring sadly . ( not the staff I work with they have been fantastic ).

 

Also acupuncture may help peripheral neuropathy as I accessed this but only had a few sessions as wasn’t allowed any more. Good luck with the dissertation I admire you.

 

bibi- hope you are getting on ok post op. 

 

Weeburd- how did you find the course ?

 

miss green- have you applied for Pip if you’ve problems with dressing you might be entitled to it .

 

All the best to everyone one look after yourself xx 

Member

Re: February Chemo Starters 2018

Hi all - it's good to still read your posts and stay in touch.

Like you Chrissy - I am waiting on radiotherapy and am planned to have some to my neck area.( supra clavicular)?I was told the chest wall radiotherapy can damage the lung lining slightly so I wonder if the neck radiotherapy has damaged the lining of your throat/ oesophagus causing your reflux?? I hope it will settle down in time. 

I am still trying to get enough movement in my arm to get it above my head for radio - it's getting there😕

I thought I had got away with chemo nails but I have large white lifted tips on most of mine.They look weird so I keep them painted as they look odd.I should be grateful they haven't come off completely. Toes nails seem ok.

Have my eyebrows back and eyelashes despite being a bit unruly😃Hair is coming slowly - I was brave enough to go wigless when we were in Spain - average temp 34°. I was dripping under My wig and couldn't stand it!! One continuous hot flush 😓

Have started Tamoxifen last couple of days - waiting to see what that throws at me. Have noticed really stiff back / sore joints but not sure if because only just back on Glucosamine and COD liver oil capsules ( took them before my diagnosis).Hope these don't interact- anyone know??

Back to work week after next 😣- phased return on part time hrs.Hoping I don't be too washed out.Going to try and do mornings then go to radio appt after before going home.Been told if fatigue kicks in it is usually 2nd- 3rd week or after- ??Expecting to start radio mid Sept.

Will try and look at booking ' moving forward " course - didn't appreciate it was over a few sessions.Also have access to complimentary therapies at our local "Haven't- similar to is it Maggie's centre? Acupuncture is supposed to be good for hot flushes??

Still getting interrupted nights - supposed to be getting my head around my studying ( dissertation) - hmmm😬

Thinking of you all out there soldiering on!! xxx

Member

Re: February Chemo Starters 2018

I had reflux before my diagnosis and take Omeprozol for it but it doesn't really work. The chemo did make worse. Like WeeBurd I have struggled with opening cans, undoing laces and even getting dressed. Originally thought it was just because of dodgy nails but now think it might ne Neuropathy ( think I have that right ie. Loss of proper sensation in finger tips) . It's not constant though so that's weird x
Member

Re: February Chemo Starters 2018

No problem with reflux for me since I finished chemo. I was avoiding any food and drink that was remotely acidic.
Member

Re: February Chemo Starters 2018

Hi weeburd and miss green

thanks for your reply’s . Yes I have applied to the moving forward course although it’s a 56 mile journey I’m looking forward to it . Have any of you still got reflux . Mine is so bad that I’m eliminating food and it’s not making a difference. Haven’t drunk tea for nearly a week only water and camomile tea (yuk) . My Gp has put me on esomperazole 40mg twice day but after 2 weeks it’s not working. I rang the chemo unit who said to ring gp and I also rang radio unit as I had radio to neck area to see if it’s related but was told yes but then told no . Just wondered if others having problems .?

Member

Re: February Chemo Starters 2018

Hi Chrissy,
I don't have pain in my nails but they are quite discoloured and the thumbnails look as if they might break off so I'm trying to keep them moisturised and avoiding catching on anything. They also feel really weird if I try to do anything that I need to use them for - like opening a ring pull can or trying to undo a knot! I'm on tamoxifen now and getting some flushing but it's manageable so far.
Last week I started on the Breast Cancer Care Moving Forward Course. It runs over 4 weeks. I found the first session really helpful and am looking forward to the next one on Thursday. If you can go on one of these courses I would highly recommend it. It was good to meet and talk to other women going through the same experiences in the same way that it's been great to have you the support on the forum.
Member

Re: February Chemo Starters 2018

Hi Chrissy

The nails I have left still look funny but have stopped hurting. I keep cutting them as short as I can. Since stopping chemo and starting letrozole my flushes got worse. Especially during the heatwave we had !

T

x
Member

Re: February Chemo Starters 2018

Happy birthday Bibi and fantastic news.
Good luck with radio compared to horrible chemo you’ll find it so much easier . I finished mine last week no other treatment available for me now as I’m triple negative so just the road to recovery . Still got the most aweful reflux though medication doesn’t seem to be working so back to Gp Monday . Still got peripheral neuropathy in hands and feet and nail pain and dreaded flushed and sweats . Have others still got issues ? Hope everyone is ok xxx
Member

Re: February Chemo Starters 2018

Excellent news Bibi and happy Birthday x

Teresa
Member

Re: February Chemo Starters 2018

Happy birthday Bibi! Good news !- hope you're recovering well from the surgery.
Member

Re: February Chemo Starters 2018

Hi everyone - really happy to report that I had WLE and node clearance a fortnight ago and today I got results that there were clear margins so it is all out!  It’s my birthday today as well so it feels like the best birthday present ever 😁 Still have radiotherapy, herceptin injections and some other drugs for 7-10 years but today feels like a huge step in my journey. 

Hope you are all keeping well , and wishing you all good luck for the future and thank you all for the support over the last 6 months. Xxx

Member

Re: February Chemo Starters 2018

Hello everyone lovely to hear from you . You sound like you are all going through it but miss green I feel for you and hope things get sorted for you . Do you take someone with you for support. Sending you a big hug 🤗
I too have applied for a moving forward course but certainly don’t feel right to go back to work . I have 2 more radio sessions . They aren’t doing a axilla clearance now just the radio and then it will done for me as I’m triple neg I can’t have anything else . But I’m still suffering from chemo sideeffects . Peripheral neuropathy hands and feet . Nails so painful big toe nail fell off other day and the worse thing is reflux . Gp has put me on new tab esomperazole 40 mg twice day but it’s not made a difference . It’s getting me down . My memory is terrible too x from the radio side of things my throat is like razor blades and psin in chest side. I too weeburd have heard it peaks a few weeks after finishing and can last up to 6 weeks .i hope you all are ok . Keep doing the atm exercises they are so important especially if you need radio x fingers crossed for everyone 😘
Member

Re: February Chemo Starters 2018

Hi all - looks like we are all still having a few issues.Hope your drain came out yesterday Bibi.Sending big hugs to you Miss Green.Must be nice to finish rads Wee Burd.The thought of moving forward and going back to work is daunting😕

I ended up going back to theatre on the 24th to clear a large heamatoma behind my temporary implant.Drain number 2 came out last Fri and all dressings off yesterday so hopefully on the mend now.Still very tender especially under my arm pit although scar stops atleast 2 inches away.Been told this is probably nerve damage where they took the lymph glands out.

Bibi like you I am   finding the exercises a bit tricky to do.Dont want to over do it as don't want to induce another heamatoma or seroma. Going to Spain Sunday ( daughter is bridesmaid) - don t fancy going in to Spanish hospital for drainage! Managed to get insurance😀

Some good news - hair is growing back - have about 1.5cm on the top.Eye brows have all of a sudden started to appear and have a few tiny eyelashes!Oh and pubic hairs- they seem to be winning the race currently.So glad the chemo bit is behind me 😁

I have been referred for rads Bibi but not yet heard.I anticipate a 1-2 week wait for onc appt.Then 2-3 weeks before date for 'planning'.Then 2 weeks before start of treatment.Therefore mid to late Sept( Portsmouth hospitals).

Maybe back to work end of August.??(I work at the hospital- planning to have the treatments whilst at work/ just after shifts depending on how it  effects me.

Thinking of you all xxx

Member

Re: February Chemo Starters 2018

Miss Green, so sorry to hear that the doctors misadvised you.  Hope they have a firm plan worked out for you by Friday.  Hopefully there is something they can do that doesn't prolong the treatment for too much longer.  Sending hugs and wishing you luck.

 

Bibi, hope you are recovering well and get a chance to enjoy the wedding at the weekend.  Keep persevering with the exercises, they really do help!

 

I finished radiotherapy treatment today, so no more trips to Glasgow for a while.  They have advised that the after effects will probably peak in about 7 - 10 days' time.  I have invited some friends round for a celebratory afternoon tea on 10th Aug, so I just hope I haven't been overly optimistic about my energy levels by then!

 

Off to visit my parents tomorrow - and to celebrate their diamond wedding anniversary with them.  Looking forward to the break.

 

I have signed up for the Breast Cancer Care Moving Forward Course starting on 9th August which I hope will be interesting and informative.  I need to think about getting back to work and I'm hoping the course will have a few pointers about coping with that!

 

Keep well everyone x

 

 

Member

Re: February Chemo Starters 2018

Thanks Bibi. Feel so angry. They should have got all their ducks in a row before using the R word.

Xx
Member

Re: February Chemo Starters 2018

Oh Miss Green - the emotional up and downs of these pieces of information are so hard and draining - I am sending you hugs 🤗 and hope you are bearing up and they are able to offer a good plan for you 🤞xxx

Member

Re: February Chemo Starters 2018

Hi Bibi


That's great news you could have a WLE rather than a mastectomy. Fingers crossed they got a good clearance.

I am afraid my Oncololgist was premature in saying I am in remission. He referred me back to the Breast team as he was satisfied with my chest and lung but an ultra sound shows one of my tumours had stubbornly remained in the boob. On Friday I will find out what the plan next. Hoping they can do another WLE on my mastectomy.

T

xx
Member

Re: February Chemo Starters 2018

Morning everyone - glad to hear your good news Miss Green - must be such a relief for you. 

How are you coping with the radiotherapy WeeBurd? At least the hot weather has gone now but the daily trek must be wearing - not looking forward to that. 

Macneech hope you are continuing to recover and initial problems after op are easing. Have you had results and dates for radiotherapy yet?

After always being told I would be having a mastectomy - when the chemo finished and I saw surgeon again it was a different (one due to illness of previous one) after much discussion of chemo results ( very good response) and initial diagnosis and much soul searching I was advised I could have a WLE instead . Date for op was delayed a week so went off to the Welsh Coast to enjoy the beautiful weather, but I had it last Thursday- 26th so am just recovering. Drain a bit uncomfortable but 🤞out today when I visit hospital for check up, feeling bruised but much better than I thought I would. Next big step is getting results and hearing the words ‘ clear margins’ so just distracting myself from that- got a family wedding next weekend and looking forward to catching up with everyone plus hoping can get my outfit on! Doing the arm exercises but some a bit painful atm . Take care everyone and continue to enjoy life. xxx

Member

Re: February Chemo Starters 2018

Hope everything improves for you Macneech and no need for interventions. Sounds like a lot to cope with after the chemo. I've now had 10 of my 19 radiotherapy zappings. Compared to chemo it's a scoosh so far although a friend who went through it last year has warned me that the worst of the effects are about 2 weeks after the treatment. But I think for anyone who's been through chemotherapy there's nothing to worry about in coping with the radiotherapy.
I am getting some more hair on my head and arms now but still no eyebrows! I've taken off the nail polish now as my nails were flaking so much. Not looking good, trying to keep them in as good condition as I can manage.
Energy levels still fluctuating - a combination of the early starts, travel to Glasgow every day and the hot weather as well as the radiotherapy.
I've started on tamoxifen now - has anyone else been put on it and are you having any side effects?