October 2016 starters

Hi all

And here is the October 2016 chemotherapy starters thread!  Hopefully it will become a lively and supportive thread for all of you having to go through your various regimes of chemo. Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave.

Any side effects you do get please note them down for your treatment team. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle are likely to be the same throughout, as long as you are on the same regime.

Here are some helpful links for you to prepare and support you.

Chemo preparation - 

forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Preparation-for-Chemo/m-p/10…

If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you - 

forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363…

And this one covers everything from food to make up and wigs - you may have to explore in more depth to find something specific you are looking for - 

forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks…

HI Sue,

 

Thanks for starting this up. It feels like something of a milestone for me as I was one of The Class of October 2015. Absolutely can’t believe that almost a year has gone by since I started chemo.

 

I believe it’s something of a tradition here for folks from the previous year’s thread to come and support the new bunch so I’m offering my services to anyone from The Class of October 2016. 

 

For anyone about to embark on this journey it’s amazing how once you get started the time whizzes past. This time last year I was terrified about it all and could not believe I’d get through it without serious consequences. But here I am and I am mostly feeling pretty well. My big piece of advice would be to try and get yourself as healthy as possible before you start if you can. Lots of nutritious food - my smoothie maker was on the go constantly. Apart from one skin infection when my hair started to fall out (on my back of all places - who would have thought my back was so hairy) I managed to dodge any major infections or illnesses. Not sure if that was down to luck but I like to think that I’d built my defences up before I started. I also ate tons of pineapple which apparently contains an enzyme that’s good for oral health - I had very few mouth issues and only the odd small ulcer throughout. 

 

Anyway, hope I can be of some assistance in the future. Good luck to everyone who ends up on this thread.

 

Ruth xx

Thank you for the lovely welcome Ruth and Sue :slight_smile: I can’t tell you how pleased I am that forums like this exist to help me through what is undoubtedly the most terrifying period of my life. I cannot wait until I am in your shoes Ruth and able to offer support to the October 17 cohort!

By way of introduction, my name is Jo and I am a 39 year old mum to 4 children - ages 16, 14, 9 and 2. I work part time as a self employed office manager and was a marketing manager in a former life until July last year when i decided I wanted a bit of a simpler life, giving up my pension, private healthcare, regular salary, sick pay, for a life of uncertainty. Oh, hindsight is a wonderful thing :slight_smile:

I found my lump in May this year, after being vigilant to the point of paranoia after my mum died of BC in 1999. After a long and drawn out diagnosis period I was diagnosed with a 10.5mm grade 3 IDC with another 1cm of high grade surrounding DCIS.

I decided to have a double mx with immediate strattice reconstruction and had my surgery on 25th August from which I have recovered really well.

I met with the oncology team earlier in the week and will be starting 4 FEC chemo sessions on 7th October, zoladex and zoledronic acid injection and 10 years of tamoxifen. Chemo gives me a 2% reduction of recurrance over 5 years and 5% over 10 years. Small percentages but very worth it to me.

I have had my long mousy brown hair cut into a short bob and bleached white blonde in preparation for the chemo, I already look so different that it won’t be such a shock for the kids if I lose my hair - will be attempting cold cap but am quite realistic about its likelihood of working. I am also a complete wimp with the cold and can’t even cope with cold swimming pools, so may rip it off my head after 5 mins.

It will be nice to help and support each other throughout this journey - sorry for the essay length post, will be more succinct next time :slight_smile:

Jo xxx

Hi Jo, hi Swampy.

 

Sorry you have to be here but it’s a great place for support and reassurance. Jo, as you say, it’s so great that forums like this exist. I can’t imagine how isolating it must have been for people going through this say 20 years ago when the internet didn’t exist or was only in its infancy.

 

Jo, I had a single MX with strattice reconstruction and like you recovered really well. I know I have been fortunate and am very pleased with the outcome of surgery. I started my chemo on October 9th last year so quite similar to you. If you are on the three weekly cycle and keep on track without any infections inbetween treatments it’s a good time to start. It meant that I had a treatment a few weeks before Christmas and the worst of the side effects were over and I could actually taste my Christmas dinner and enjoy a glass or two of wine. I bet your hair looks great just now and I really admire you going for the bleach. Being a dark brunette, albeit with quite a bit of grey these days, I really fancy going blond while my hair is still short. Perhaps you will inspire me.

 

Swampy, don’t be disheartened by the comments of your chemo nurse. The first one I saw was equally cynical. I have to be honest and say that the cold cap didn’t work for me. I got to a couple of days after my second treatment and developed a large monk like bald patch on the top of my head. For me it was all or nothing and I decided it had to go but there are a lot of people here who have had good success in keeping a fair proportion of their hair and several I know of have really great hair growth post-chemo because of it. Worth giving it a shot. For me the hair thing was not the biggest deal – I actually like my short crop now and am a bit cross with myself for sticking with same hairstyle for so many years – but I totally understand that for some people it’s a huge issue.

 

Ruth xxxx

 

 

Hi Everyone.

 

I had a 60mm Grade 3 ER+ Tumour and because of it’s size, I had a MX last month.

 

I saw the Oncologist last week and I’m due to start my Chemo on Thursday 13th October. They are going to give me FEC-T (3 cycles of FEC and 3 cycles of T so 18 weeks in total). That will be followed by three weeks of Radiotherapy.

 

The Oncologist has said that I need a Flu jab because if I catch the Flu, it will prolong the treatment. Has anyone else had the jab?

 

Thinking about the PICC line as everyone seems to recommend it and might try the Cold Cap for the first treatment. (I did go to a wig shop today to see about getting a wig just out of interest. The NHS will pay for it apart from a set £68 prescription charge.)

 

Does anyone know of a good accurate thermometer to get? I have heard that Braun are quite good and they do an in-ear (infrared) thermometer which looks good. It’s expensive though (about £35) and I don’t know if it is worth it.

 

It would be nice to hear about any other pre-treatment tips as well as how everyone is getting on.

 

Jo xx

 

 

 

Hi All,

 

well now the post is up and i know i will be starting next month, not sure what treatment i wil have yet as i have my first oncolgy appointment on thursday. All i know i had 22 nodes removed and 3 had cancer in them, i will find out more on thursday. 

 

I am triple negative, but told a trace of estrogen was found so i need to ask if this is still triple negative.

 

I am really scared of this treatment mainly due to the side effects, the sickness and everything that goes wit chemo. I have not brought a wig yet or any scarfs, have you?

 

looking forward to sharing the ups and downs in the bump in the road, and getting to know  everyone.

 

Oh my name is lisa i am 45 and have twin boys who are 5. i have nto yet told them about everything they just know i am not well.

 

love and hugs xxx

Hi Everyone,  My name is Mary and I am 57 years old, married with two boys 31 and 28, I took early retirement in March this year, in June I was referred to the Breast Clinic and was finally diagnosed with Grade Two ER+ Invasive Lobular Cancer in August. I had a MX on the 1st September, the lump was 70mm and 14 lymph nodes were removed as well (until op all tests showed lump to be 40mm and no nodes involved), had my biopsy results a week ago and 3 nodes had cancer cells but there was no cancer outside the lump and no vascular involvement. Have had a CT scan as a precaution but still waiting for the results.

Today I saw the Oncologist and the plan is for 3 x EC and then 3 x T to begin in the next 2 - 3 weeks followed by Radiotherapy and tablets.

Like most of us I like to be as prepared and informed as possible so most of the info I recieved yesterday wasn’t a surprise, have had my flu jab and visited the dentist already, the part I am really struggling with is the hair loss may try the cold cap but don’t deal with cold very well, I found this blog written by a Breast Cancer Surgeon with BC liz.oriordan.co.uk/CopeWithCancer.html which I thought was really helpful together with everyone on here, Hugs and Best Wishes Mary xx

Welcome to all the new starters,

 

I had my last chemo 6 weeks ago. I’m just dropping in to give you the perspective of someone who found chemo hard and support difficult to find. For me the anticipation of chemo was no where near as bad as the reality. It was the calm before the storm. I’m in a minority and I do hope that this thread doesn’t have a “me” or worse. I got through my chemo - some don’t.

 

When I was first diagnosed the plan was to use Chemo to try and shrink the lump. It was over 3cm and I have small boobs. It had spread to my lymph glands. 

 

The good news is that it worked!  I had 3 x FEC and 3 x T. After the first T I had another ultrasound. They couldn’t find the lump and it needed another mammogram to find it.

  

The bad news for me was just how gruelling chemo was. 6 weeks on and I still have the side effects. Survived though and side effects are slowly going. 

 

By far the worst for me was the nausea and vomiting. Dizziness and weakness. My clinic was hopeless. I had problems finding anyone who wanted to tackle the problem. I was sick all through most of my chemo. In the end I made a complaint to the head of services at the hospital. 

 

This resulted in someone helping me work through a long list of possible anti-sickness medications to find something that controlled it. We got there in the end but it showed the deficiencies of a NHS department stretched to the max and not able to support people with problems through chemo. 

 

My breast cancer nurse was useless, my oncologist often not there. The hospital expected the overworked oncology nurses to deal with side effects but they were simply not trained to do so. There was a bleep number but no one useful at the other end. MacMillian in my area was a chocolate teapot.

 

I was too sick to use a computer or leave my bed at times or talk on the phone or write a letter. Too weak to fight for the help I needed.

 

I had to recover and then take charge and insist on changes to get my nausea/sickness treated and to through chemo - make my cycles 4 weekly rather than 3, get the drugs reduced etc.

 

My advice would be to “plan for the worse and hope for the best”.

 

Buy a bucket for the bed.

Pack an overnight bag in case you need to go into hospital.

If it gets too bad talk to your consultant and insist that they take it seriously. There is a lot they can do but they may need a firm hand. 

 

Chemo is do-able in most cases. Some patients however have to give up on chemo as the side effects are too serious. Hope this doesn’t happen to any of you. 

 

I survived in the end, the lump shrank and I know how lucky I am to still have a breast. I do feel lucky even after a horrible 5 / 6 months of chemo hell. The side effects are slowly going but I am still largely housebound with a wheelchair for the occassional medical trip outside.

 

Hope this story helps someone. I started chemo unprepared for how bad it could get.

Hello to all of you just starting out,

 

It can be a frightening place that you’re standing in right now but it will pass.  Chemo is very individual and there are many many variations of side effects.  I found it helpful to talk to others who’d gone through it and read as many different accounts as possible.  No two were the same.  We all find our own way through and many of us here found the support available on these forums invaluable.  I blogged my way through it to and if any you want to read my account, you can find it here: gettingabreastofthesituation.wordpress.com

 

One thing is sure.  It will pass.

 

B x

Hi

and welcome to the newcomers! this really is a great place for support and we shall do the best to help you through this time.

As Belle says - it is a very individual experience for each and everyone of us and this can be for many different reasons. Underlying health issues, age, fitness level, etc., etc. can all make us react different to the treatment we have been prescribed. I am sorry to read Flopsy, that yours was so very challenging. However, if I may be so bold - it is more the exception than the norm, as to what happened to you and that you could not get the help you needed.

Please ladies, do not be scared - I had my last chemo treatment on September 1st this year - so 28 days ago. My treatment team got the accompanying medication right first time - so I did not have to ask for adjustments. You may have read many posts on other threads from ladies who have had some rather challenging times. That is why they post - they need our support. Those, who are coping well post less often - hence you may perhaps get a slightly screwed picture. 

I was able to work fully through my first 2 chemo treatments - albeit from home the first week post chemo.

And I continued working for 11 days out of the 21 day cycle for my remaining 4 treatments. Yes, fatigue did set in and also chemo brain - but I managed to work with both - and not home based either. I was fortunate to have G csf injections throughout most of my treatment, which I am sure helped. G csf injections support your bone marrow to stimulate white cell growth - i.e. helps with the immune system. They are not routinely prescribed, as they are very expensive.

And - I am not a spring chicken, lol. And I am fully back at work since day 14 post my last chemo.

So you can see - it does affect us differently!

As you have your first chemo - monitor your initial side effects well, perhaps even write them down. it is usual to have to complete a sheet with various questions re your side effects the day you arrive for your next session.

When you have your pre chemo introduction meeting - please listen carefully - and ask whatever question comes into your mind. You should be given a chemo helpline number. If your se’s are severe - you must call them. Your medication can and should be adjusted. You also should have had a breast care nurse assigned to you - they are there to support you. Call them - they can advise, as they have access to your treatment team.

Hugs to all

Sue xxx

 

Hello everyone. I am so blessed to find this place after i had a session with Oncologist this morning, i am her to talk about my fears

 

I am 50 , mother of 3 beautiful kids was living a normal life till i noticed a lump making place in my left breast, July 31 i was diagnosed with Breast Cancer~ I went through double Mstecnomy to reduce risk of getting cancer in my right breast along with the left one having tumour.

The stage identified was IIB with Her2neu +3. I am starting my chemo therapy regimn TCH from 04 October and i am really looking forward to hear from ladies going though same regimn or taking Hercipten along with some other regimn? I am suggested 6 cycles of chemo and one year Herceptain targeted therapy and i am already freaking out with what is coming next week. And yes i realised all my life i never needed any serious medical help, but Cancer buzzed in just when i have no insuarnce!!!

 

Ladies,  

  • How many of you were suggested to have steroids one day before chemo and what dosage?
  • I need suggestions on any rapid changes in my diet plan that can soothe the effects  of chemo?
  • I am not sure what is cold cap, and how it helps?
  • Is there any one else taking same chemo regimn as Oncologists are too busy to response my each fear (i understand they have loads of patients to deal with)?
  • Should i make any necessary changes in my bedroom, and my house??

I am reading stories of all beautiful ladies here and feeling much better that so thankyou everyone~~

Hi all, wondering if anyone here has any other health problems as well as BC? I’ve got ME/cfs, and before starting chemo I’m already worn out just attending appointments, 3 hour round trip to hospital! Not much heed taken by any of drs or nurses to my existing health problems,  so a bit worried how the added chemo treatment is going to affect me!

Had a bit of a bumpy time so far since I was diagnosed at beginning of August. I’ve got a fairly large tumour and from day 1 was told the plan would be chemo to shrink the tumour followed by surgery.

Blips so far have included having a severe reaction after MRI (ended up in  A&E), oncology appointment being postponed so many times that I had to get MP involved, and getting severe infection around lymph node biopsy site and having a week in hospital on iv antibiotics and another operation. 

A bit peeved with breast nurse, as when I rang to ask her about painful swelling told me it was normal and just keep doing the exercises! So even though I was in loads of pain, I thought I was just being a wimp. A few days later I ended up as an emergency admission in hospital, with the consultant saying i must be a tough cookie as by that stage I had cellulitis and you could have cooked dinner off my boob! I phoned the BN twice now (left message) to let them know I was missing my chemo, and then to say I was discharged, and have never heard from her! Doesn’t fill me with hope…

 

So now hoping to start chemo (3xfec, 3x T& heceptin) next Wednesday, as long as infection cleared.

Fingers crossed we all get through it with minimal problems. Sorry for the big moan but been a rough couple of months xxx

 

Hello all.
Another one for the October group! Up to now I’ve had routine mammogram then got sent for recall. Told repeatedly how lucky I was they had caught it early then after biopsies then more biopsies they said it had spead to just over half of my lymph nodes. The first was a shock, the second bit which was weeks later a bigger shock weirdly. Went into tearful meltdown occasionally but then had to focus on having a WLE and full lymph node removal. I know I’m lucky though to not have had to have a mastectomy. 7 weeks on and I’ve just seen my oncologist and starting chemo in about 1 and a half to 2 weeks. They can’t be exact as apparently there’s a waiting list!! I’m having FEC-T but don’t quite understand about it all yet…anyone else on this or about to start? I’ve had a few tearful moments about losing my hair but am trying everything going - hats, scarves, wigs, including cold cap if I can stand it! I’m so glad there is a forum like this. Unfortunately I’ve had to rely heavily on Breast Cancer Care support as I’ve had a not at all good breast care nurse so I’ve been very grateful for the advice and support from BCC. I don’t know what I would have done without them. This is probably the most challenging thing we will all ever go through but as someone said it’s doable and we are stronger than we think sometimes. Since being diagnosed I’ve had to learn that allowing myself to have a cry sometimes and to allow people to help and support me is a good thing not a bad one! Lots of hugs to all of you. Sue xx

Hi lovely ladies. My name is Karen, aged 58 and was diagnosed in July… I have had a masectomy with immediate implant reconstructin which I have recovered from well.  I am starting my chemo on 6 th October and have tried to be calm about it but now it’s getting nearer I can feel the panic setting in,! I am having 3 X EC and 3 X T followed by some radiotherapy . I am so glad I checked onto this thread. So many with similar situations and so much advice. Good too that people share all their experiences, good and bad. 

I was advised to get the flu jab before starting if possible so I had this 10 days ago and have sorted myself a wig (with the help of a good friend to give me an honest opinion) .  I decided I needed to do this now as not sure I would have been able to do this if I was not in a good place once treatment started.

i have made myself a list , as suggested, of supplies I may need in the coming weeks. My main fear now is that having geared myself up for Thursday , for some reason they don’t go ahead with the treatment . I need to get going now and move forward with this whilst I am still just about holding it together!

Wishing everyone starting on this journey, or already on it, the very best and sending positive thoughts and hugs. Xxx

Good morning everyone :slight_smile:  My name is Lee, I’m 43 and was diagnosed in August.  I had a lumpectomy at the beginning of September and intially was told that chemo would not be required, only radiotherapy and hormone therapy.  However, when they opened me up there was a second tumour that they did not pick up on the scans, and the lab report regraded me from slow to intermediate growth, so due to my age and that, I’m starting 6 cycles of chemo this week.

 

I have to say, I am a bit apprehensive.  I have two children (11 years and 4 years) two beautiful girls and I’m finding myself focussed more on making it easy for them, but then at 2am in the morning waking up and it hits me.  I am very positive about the treatment, and so very grateful they caught it early enough to treat, but as I wasnt expecting to have chemotherapy as well its taking a while for me to get my head around it!

 

I’m a little anxious of the side effects, but as I experienced hyperemsis on both pregnancies, I think that was practice for getting me through this!  

 

I’m really looking forward to talking with everyone and being able to support each other :slight_smile:

 

 

#fightlikeagirl

 

 

Lee xx

 

It must be hard to explain if you’ve got young children. My two lovely girls are in their mid to late twenties but I’ve still had to be quite careful as to how much information to give them and when but gradually after being very shocked and upset they are handling it better now. One of the hardest things for me is that I’ve had to stop teaching as my breast surgeon and doctor said that’s one job he wouldn’t let me do due to the high risk of infection. I was devastated as I love my job. I used to reach in a special school for children with severe learning and physical disabilities. As I have recently moved I had a chance to start a new one this Sep but had to withdraw when I found out I had bc as I couldn’t start with the newbies in Nursery/Reception and couldn’t say when I would be able to start. It was hard seeing them all going back in September.
I haven’t had a meeting re my pre chemo meeting yet but I guess they’ll do it in the next week. I do know I’m having a PICC line in. Anyone had one? I don’t really know what to expect with that if it’s in all the time.
Having a wig appointment on Tuesday. Don’t know how I feel about it but I think I will feel better being out at things with hair sometimes when it’s people I don’t know as it’s easier not to have to keep explaining why I have no hair! Thinking I should get something to help keep my hair off my pillow when it starts to fall out too as I have shoulder length hair…at the moment! :smiley:
Sue xx

Hi Sue,

You look beautiful without hair! Love the wig though. Thanks for sending the pics it gives me a lot more confidence to know they can look good!
I was trying to explain to my hubby to be (getting married on the 8th Oct in the middle of all this! We decided not to put it off ) how although men must find it hard losing their hair for us women I think it’s harder. It’s such a part of us and our identity but things change and I know it will grow back eventually. My girls have said they’re going to buy me lots of nice long earrings so I don’t miss having something hanging near my face :D.
Thanks for the info re PICC line. It sounds a bit worrying when they tell you you’re having that put in as well as everything else! I’ll have to have it in my right arm as they can’t put it in my left die to thelymph node removal. I’ve got the start of lymphodema in my left arm and getting a special bandage thing from the lymphodema nurse so I might have both arms covered with various things :smiley:
Just been helping out at the Asdas Tickled Pink campaign this weekend for Breast Cancer Care and Breast Cancer Now. What a lovely lovely bunch of ladies I met up with!
Sue xx

The injections were a bit of surprise to me when I did my chemo (FEC-T). The Oncology nurse gave them to me out of the blue when I was on the FEC part. It could be because I had an infection on my first cycle. Policy on giving GCSF injections seems to vary.

 

You may be given the injections to do at home after one of your chemo cycles. I did them myself (as used to self inject)  but some people get husbands or friends to do them or the local district nurse.

 

Chemo can deplete white blood cells and the injections are to build them up again. 

 

Bone pain is one of the possible side effects. 

 

When I had bone pain I tried Ibuprofen but it didn’t work for me. Did some research and came onto the histamine connection. This may be particuarly useful if you are normally allergic?   I’ve had allergic reactions before so tried Claritine (antihistamine) and Benadryl. This worked for me in controlling the pain finally.

 

Here’s some more information if anyone is interested

 

breastcancer.org/treatment/druglist/neulasta

 

Hi Lee
I to suffered bad hyperemisis with both my pregnancies. So I know what you mean. Am 46 and have had 2 of 6 fec-TH.
On my first cycle I was given Emend , ondansetron and cyclozine to take home. I was admitted later that evening for iv ondansetron and fluids as I was quite sick. They managed to settle the nausea very quickly so I was glad I went into hospital for afew days and had my own room cause on chemo. Second chemo they changed my meds a bit. I had a syringe driver for first few days at home. A nurse came once a day to top it up with levomepromazine. Plus still taking the other tablets. I was much better and by end of week , nausea was away.?
I have chemo 3 tomorrow. Good luck this week. I will look out to see how you are.
There are lots of drugs they can give now to control the nausea so make sure you tell them sooner than later.
I found the hyperemisis much much worse ? apart from the losing my hair part.
Take care
Hugs Vx

Hi Lee

Good luck with everything tomorrow. I’m 39 with a 6 year old so similar age to yours. I’ve just had 2 out of 6 EC. So far for me, first 6 days are the worst, but manageable. They changed my meds after first session as I was quite sick. Don’t be afraid to request this as there is no need to suffer in silence.
Sue. As the other Sue said, a Picc line is the way forward! I had mine put in prior to first treatment as my veins are really small. I’m so pleased I’ve got it. You soon forget it’s there and it makes things so much easier.
Sue, you rock the short hair! You look really young and really well.
I’ve booked in to Look Good, Feel Better a week tomorrow which I’m looking forward too as make up is not my forte. The creative gene has passed me by I’m afraid so eyebrows, make up etc will not look anywhere near as good as yours.
Good luck everyone x