Member
Posts: 148
Registered: ‎22-01-2018

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
Posts: 428
Registered: ‎01-01-2010

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
Posts: 92
Registered: ‎12-02-2018

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
Posts: 148
Registered: ‎22-01-2018

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
Posts: 92
Registered: ‎17-12-2017

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
Posts: 148
Registered: ‎22-01-2018

Re: February Chemo Starters 2018

Hi everyone - anyone having Herceptin injections? 

Member
Posts: 92
Registered: ‎17-12-2017

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
Posts: 141
Registered: ‎16-05-2014

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
Posts: 92
Registered: ‎17-12-2017

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
Posts: 141
Registered: ‎16-05-2014

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
Posts: 148
Registered: ‎22-01-2018

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
Posts: 92
Registered: ‎17-12-2017

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
Posts: 92
Registered: ‎17-12-2017

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
Posts: 141
Registered: ‎16-05-2014

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
Posts: 92
Registered: ‎12-02-2018

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
Posts: 92
Registered: ‎17-12-2017

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
Posts: 148
Registered: ‎22-01-2018

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
Posts: 141
Registered: ‎16-05-2014

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
Posts: 65
Registered: ‎21-01-2018

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
Posts: 1,993
Registered: ‎01-05-2012

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