63302members
332969posts
cancel
Showing results for 
Search instead for 
Did you mean: 

July 2018 Chemo Starters

Community Champion

Re: July 2018 Chemo Starters

Hi Georgie
The only time ladies seem to struggle with sleep is when you have to take the steroids. For me, I had to take them for 3 days... The day before, on the day, and day after. It really is difficult to sleep then. And I felt sooo hungry! Found myself getting up at midnight, craving sausage sandwiches!
Xx
Member

Re: July 2018 Chemo Starters

Many thanks for the replies; it is so so good to be able to share on here isn't it! 

 

Do many or any of you have sleeping problems during chemo? My treatment is to be FEC T with herceptin and bi-phosphates with, and radiotherapy too after chemo.  No hormone involvement.  I'm having sleepless nights already with the stress, and the oncologist suggested I I obtain some zopiclone from my GP.  Are there any rules about who supplies drugs?  (I mean GP or hospital?)   I'm off to the GP tomorrow morning to ask about a few health niggles I want to check out before I start the chemotherapy, e.g. A rash that is very itchy and close to bleeding, and may be an infection risk.  Just want to go in to all of this with as much of a head start as I can..... 

 

And well done one to those who have braved getting shaved! Let's all hope that we only have to do all of this once in our lives!! 

 

Thanks again GG x 

Community Champion

Re: July 2018 Chemo Starters

Georgie

I did have further tests after surgery......a bone scan and a ct scan. But it was because my lump was quite large, 45 mm. My oncologist said they normally do them if the area is 50mm or more and so , as I was near, she did them anyway, just to be on the safe side. Luckily all clear. 

The chemo will do it's job by killing off any stray cancer cells. The radiotherapy will target the specific area and again will kill off any stray cells. You are having all the right treatment and the oncologist will do all the right  things for you. 

I hope this reassures you. 

sue xx

ktk
Member

Re: July 2018 Chemo Starters

Hi Karen. Well done for braving the shave. I found it very liberating and it really was a family affair with husband son and daughter all having a go! If you would like to pop over to the June thread you will see some of us who have posted pics to encourage others. Don’t forget the sunscreen!! Kxx
Member

Re: July 2018 Chemo Starters

Hello all,

Hope all is going well for those having chemo this week.

Welcome Georgie, I understand your frustration at wanting to get things going with your treatment. The waiting is very hard and I too convinced myself other things were going on and the stress of this causes more anxiety. I asked for a head scan and they agreed without quibble and it all came back ok, headaches and neck ache then went away 😬. Hopefully you will get a start date soon, mine was a wait from 2nd May to 29th June which seemed an age. Chemo before op for me with one under my belt now and pleased it’s started..
I have felt well this week but had to brave the shave as handfuls of hair was falling out last night. We both had a glass of wine and my husband very gently shaved it off. I did have tears and have to admit it was hard to look in the mirror at first. Today I donned my wig and went to B&Q it was fine just a bit hot, plus I kept thinking it was wonky 😂.
Booking a cruise for the week after the next session to celebrate my birthday, making the most of it whilst I am off work and thinking why the hell not try and enjoy the good weeks.
Hope you are all having a lovely weekend.

Best wishes

Karen x
Member

Re: July 2018 Chemo Starters

Thank you ktk 

ktk
Member

Re: July 2018 Chemo Starters

Hi Georgie. I would ask your BCN for advice tomorrow but I doubt that further scans will change your treatment. If you are having chemo before surgery they will be aiming to shrink what is there and it will also get any new nasties. I think they will scan you after chemo to check that what was there has shrunk and will find anything else if it is there. I know it is hard, but try to keep positive and have faith that they know what they are doing!!😁 xx
Member

Re: July 2018 Chemo Starters

Thank you ktk too; I really appreciate your reply.

Can I ask another question here please?  When I saw the oncologist, I asked about having a further scan, as surgery showed a grade 3, HER2+ve, hormones -ve 29mm tumour and 2 lymph nodes involved plus some micro metastasis.  The biopsy was taken in late May, so I asked about another scan as it is now at least 6 weeks ago.  Have had a few pain and breathlessness episodes so am a bit concerned about possible further spread.  The oncologist started to shake her head before the end of my question, and said they would not be doing any more scanning.... and yet I hear on forums that others have had these.  The tumour grew 4mm in about 2 weeks so of course I am wanting to rule out anything else before chemo.  I am going to speak to breast care nurses too on Monday and also seeing my GP about the extra symptoms... 

ktk
Member

Re: July 2018 Chemo Starters

Hi Georgie. I have lost 3kg since starting chemo, based on the hospital records before each session. I find I don’t have much of an appetite in the first few days, then it gradually comes back. A bit like being on the 3:2 diet for that week. Also, I have lost my appetite for sweet stuff and am drinking less alcohol. My chemo nurse said he expected me to lose weight. I haven’t found the steroids increase my appetite because they are taken when you are feeling nauseous so don’t want to eat.

My chemo started 6 weeks after surgery. Kx
Member

Re: July 2018 Chemo Starters

Thank you Sue C,

That has already reassured me....... I feel like I am on the starting line for a long and gruelling race, but things just keep stalling the start.  I do want to lose some weight (not loads, just a bit....) get ready and prepare as best I can, so yes, I will take your advice about meals and head coverings.  I'm especially concerned about having steroids, as I know they can pile weight on and as I already struggle with weight, it's seems just another thing to add to the cancer.  I do read the forum with interest, as people here know the ropes.  I'm finding that people I know are all over their own 'shock' at my diagnosis, and they so often ask 'when do you start the chemo?' but then they seem to lose interest when I say I don't know yet!! Thanks for reading xx

Community Champion

Re: July 2018 Chemo Starters

Hi Georgie

And welcome to the forum thread.

My chemo started 6 weeks after surgery , which I think is about average. I was told it needs to start within 12 weeks. I managed to speed things up slightly by signing the consent form on the day of the oncologist appointment. She did say go away and think about it, but for me, there was nothing to think about. I just wanted to get on with it. 

Use the time to prepare and relax. The first week of chemo is the toughest and you may not want to do too much. So you could prepare some meals and pop them in the freezer. Also have a think about what you are going to do about your hair. If it's long, I would suggest getting it cut short. If you would like to get a wig, then also do this in advance, as it can take a little while to come through.

Best wishes

Sue xx

Member

Re: July 2018 Chemo Starters

Well I thought I would be joining this July community, but after seeing my oncologist on Wednesday, for what I thought would be my appointment to start me off next week, I was told that I need to wait another couple of weeks to go back and sign for consent. Then chemo may start 'in another couple of weeks'.  

I just want to get on with all of the treatment, and I know it's not going to be a walk in the park..... has anyone else had these delays? Sorry to be moany!  I'm just getting tearful and so frustrated. 

Shi Community Champion
Community Champion

Re: July 2018 Chemo Starters

Iammstillme👏👏👏well done, 1st one ✅ drink plenty of water and take meds as prescribed, if antisickness doesn’t work, ring your rapid response number, they’d rather get you on meds that will prevent any sickness if they are not working. Pace yourself and even if you’ve no temper erasure but not feeling right ring the number. Days 7-14 are your nadir days when neutrophils are at their lowest and you will need to be really careful and usually week 3 is everyone 💃🏻💃🏻🕺🕺💃🏻💃🏻Week, before you bounce off the walls with steroids again. For the jabs, grab a bit of belly fat, wipe with antiseptic swab wipe if you want and plunge needle in, press down till you hear the click, this will bring needle back up on itself and voila, all done, takes less than 5 seconds, do alternative sides of belly button, once you get 1st one done it’s ok, promise, I was 😳😲😳😲about needles too when I started chemo, but promise it’s really ok and doesn’t hurt ❤️❤️❤️💕💕✨✨✨shi xx
Member

Re: July 2018 Chemo Starters

1st of 3 EC went well today. They have given me 3 types of anti-sickness tablets & a pack of steroids to take over the next few days. Also I have the G-CSF injections to do for 5 days starting on Tuesday - terrifying thought for a major needle-phobe (okay, so that's not a real word) like me but I will try to do them myself and ask my GP if they will do it as a backup.
I slightly wavy kind of head straight after the chemo (normal on C the nurses said) and on my way back to work I was sweating like there's no tomorrow! Probably a mixture of the heat & beginning of menopause but I'm going to monitor my temperature just in case. Also I'm very windy for the first time ever! Anyone else had that?
I feel a little weary now but that's probably because I went straight to work afterwards and, although I tried to take it easy, I may have fallen into my old ways and worked at normal pace. This is going to take some time to change but hopefully I'll do it before my body has to make me. A lazy(ish) weekend is on the cards I think.
Take it easy my fellow chemoers xx
Member

Re: July 2018 Chemo Starters

Hello all,

 

I'm trying to straddle the June and July starters threads, as I had first cycle of FEC (after that TJP) on the afternoon of 29 June. Just realized that I hadn't updated here, for those who aren't reading the June thread.

 

Last week I noted that I'd been pretty SE-free. But then, last Saturday, my Day 9, my temp started to climb -- first 37.5, then 37.7 (my usual temp is around 36.2-36.4)... so I called the chemo hotline. Only other symptom was dull lower back pain, sort of like I'd get with PMS. So the onco on call had me monitor with a plan to call back if it went up. It was the hottest day of the summer thus far, and there was a chance I was just overheating, though I was taking it very, very easy and drinking about 3 litres of water a day. But my temp kept rising.

 

When I got a reading of 38.2 under the tongue while on the phone with the onco, she had me go to A&E. Bloods came back and I was neutropenic; they admitted me to hospital for 48 hours of IV antibiotics, more filgrastim injections (I did them myself at home Days 1-5), and close monitoring while in an isolation room. Thankfully, the temp didn't spike again, and I was discharged with 5 days of antibiotic tablets. 

 

All this to say: Please do watch your temps, especially as you start to approach your white blood cell trough in Days 10-14. Febrile neutropenia is serious. Stay safe! 

 

xo,

r.

Member

Re: July 2018 Chemo Starters

Hi CDC1811, Thanks for you message on here had my Treatment on the mobile bus yesterday meet lovely people.  Came home and slept for a few hour''s.

 

Take care, have a lovely weekend.

Member

Re: July 2018 Chemo Starters

Hi Warcol, have a lovely weekend.  My first time on the bus for chemo just love meeting new people.

 

All the best for Monday.

Member

Re: July 2018 Chemo Starters

Have a great weekend Warcol and good luck for Monday.
Sam xx
Member

Re: July 2018 Chemo Starters

Thank you cdc1811. Yes of course you can Smiley Happy that sounds great I will definitely take a look.
Sam xx
Member

Re: July 2018 Chemo Starters

Had pic line fitted today all ready for chemo on Monday! One last weekend to enjoy before the chemo bus hits me x have a lovely weekend everyone xx
Member

Re: July 2018 Chemo Starters

A few of us have put our photos with and without head coverings on the June 2018 Chemo board. You are very welcome to take a look.
Highlighted
Member

Re: July 2018 Chemo Starters

Best of luck tomorrow Iamstillme and all of those starting on Friday. Yes chemoers is a great word! Might have to borrow it if you don’t mind!
Member

Re: July 2018 Chemo Starters

PICC line went in Tuesday - which was painless at the time, a bit achy yesterday but now fine - now ready for my 1st EC tomorrow (I think!).
Good luck to my fellow chemoers (this should be a word if it's not IMO), fingers crossed that it treats us all kindly xx
Member

Re: July 2018 Chemo Starters

Hope all goes well tomorrow Lynsparkle with npminimal SEs. Sending best wishes and hugs xxx
Member

Re: July 2018 Chemo Starters

Hello all, have my second Chemo tomorrow on the mobile Chemo bus, my first Chemo i was a bit tired and a sore mouth, but that was all. Good luck to all of you going through treatment.  It really lovely that people are sharing their experience,

Member

Re: July 2018 Chemo Starters

Well done also for getting through 1st cycle Lai . I had my 2nd cycle of 8 yesterday. The steroids affected me badly too so now have a reduced dose. If you keep a record of any side effects it’s really useful to discuss these with the oncologist the next session. Mine has really made a effort to alter my medication to reduce the issues I was having. I had my head shaved the day before my 2nd chemo. I knew it was time as whenever I put my hand to my head it was just coming out and my scalp was itchy. I’m so glad I did- it was empowering for me as others have said and I’m almost used to seeing myself in the mirror at home! I wear scarves/turbans and hats when out and about- it’s quite fun experimenting with different styles.

Hi Allypops I have a Avery similar diagnosis to you Stage wise and ER positive at 8/8 Original tumour bigger than originally thought and then I found another on the other side which was confirmed as a tumour by MRI and further biopsies. I’ve already had Breast preserving surgery which worked on the left but had a re-excision on right which found further cancer cells so I will also need a mastectomy after 4xAC and 4xtaxol. I’m 50 and have a 9 year old. She’s been great but a little more concerned now the effects are more evident. I’ve tried to reassure her that this just shows the chemo is working. Good luck for Friday and all others starting soon. Please feel free to ask me any questions and I’ll see if I can help.

Willie it’s great you have minimal side effects and might be able to reduce no of cycles. Fingers crossed.

Sue thanks so much for sharing your encouraging post chemo hair experience.

Take care everyone xxx
Member

Re: July 2018 Chemo Starters

Hi all

Good luck to those starting chemo this week seems to be a few for Friday 13th!

I 'm day 15 after 1st of 8 x Fec-T - first 7 days were grim mainly due to steroid insomnia- since then not too bad - just a bit more tired tend to fade about 4pm but that could be down to heat as much as anything else. Just starting to shed hair - had it cut short before I started but just wondering at what point I need to go for the shave - not annoying at the moment so will wait a bit.

Hope everyone who hads started still feeling ok .

Lal
Member

Re: July 2018 Chemo Starters

Just to add, I am 45, have 2 children (15 year old and 12 year old), live on border of South London/Surrey and have decided not to cold cap.
Member

Re: July 2018 Chemo Starters

Hi Everyone! I have had my pre-chemo blood tests today and they were ok so I am all ready to start chemo on Friday 13th 😱
I have been given Emend tablet to take 1 hour before my appointment on Friday.
I am having chemo first as my tumour is bigger than first thought and has what looks like tendrils so quite spread out. Grade 2 er+ 8/8, pr+ 8/8, HER2-. Sadly, I also have some cancer cells in the lymph node that they biopsies so chemo was on the cards whether before or after surgery. It’s looking like either single or double mastectomy (I also have some bleeding from nipple on good boob and despite clear mri, I am anxious about it as the bad boob had the same a couple of years ago).
I will be having EC x 4 (every 3 weeks) then accelerated Taxol x 4 (fortnightly). Then surgery and rads but I’m trying to concentrate on getting through chemo first!

I think I’ve rambled on enough, so that’s me for now. I hope you are all doing ok xx

Allypops x
Member

Re: July 2018 Chemo Starters

Hi there, checking in.  

 

It's Day 14 for me.  Still no side effects, nothing.  I'm aware of a few hairs coming out, in my fingers, although it's not dropping out in lumps - yet.  Luckily it's really really short already, I'm happy I did that.

 

I've got a catch up with my oncologist today, I'm sure he'll be expecting me to trip in with a list of woes, but I've got nothing.  Well, one question.  His letter laying out my treatment said 4 FEC cycles and 4 T cycles but a document I got from the oncology nurses showing my drug list from the first chemo session and it says I'm having 6 cycles.  If I could reduce it to 6 from 8, I'd be cockahoop!   Although, then the sensible side of me says maybe I should just blitz those cells with the extra cycles.  

 

I'm also going to try to get a definitive answer about exercise.  I don't know what I can/can't do with a picc line in.  I don't want to do anything to compromise it.   Also, I wondered if doing intensive exercise might cause a problem with blood pumping through it at an increased rate.  Anyway, I did a spin class last night and I'm still alive, for now!

 

willie xxx

 

 

Community Champion

Re: July 2018 Chemo Starters

Hi Ladies
Losing your hair, sadly is upsetting. There's no getting round that unfortunately. But you can take control. I had my hair cut really short and then when it started to shed, I used scarves. Some are brave enough to shave and that seems empowering to a lot of ladies.
I just wanted to say that it is temporary. My hair grew back very quickly...... Weirdly curly!..... And now, 18months on, can nearly pull off a bob.
Hugs
Sue xx
Member

Re: July 2018 Chemo Starters

Hi Shi. Good to hear some encouraging words tonight. I’ve asked about booking on to a LGFB session but there is no availability till November. I’m hoping I’ll be finishing my treatment by then! Finding it hard today because whilst I realise that losing my hair is no biggy in the grand scheme of things, it is still a shock when it just comes out by the handful! Will try and get the rest shaved off tomorrow. It feels really itchy at the moment and I’m hoping that feeling will go once the hair that’s left has gone. I e donated to Little Princess Trust before but my hair isnt long enough this time around,

Thanks for the positive words. Best Wishes xxx
Shi Community Champion
Community Champion

Re: July 2018 Chemo Starters

Hi beautiful 💪💪💪ladies, just a reminder to book your look good feel better sessions through your local Mcmillan centres, its a make-up session with other ladies and professional make up artists and free goody bag of beauty products 😘also please think about donating hair to little princess trust who do wigs for kids with hair donations. Pace yourselves on this journey ladies, keep 💪💪💪and look at those bells in your units, tell it each visit, i’ll Be ringing you soon. Mai7 who’s posted her blog is the angel who took me under her wing on this journey. Us Oct 17 Chemo ladies are on hand if any of you need us, just jump on our thread and let us know ❤️❤️❤️💕💕✨✨✨shi xx
Member

Re: July 2018 Chemo Starters

Hiya Willie,, it just so happens I'm doggy sitting for the next two weeks. We could meet up somewhere pretty like Elvaston Castle and walk the pooches xxx

Member

Re: July 2018 Chemo Starters

Hi all
Hi Kate I’ve also had surgery - bilateral therapeutic mammoplasties then a re-excision and will also need a mastectomy after my 6 months of chemo. I started in June and I’m due my second cycle next Tuesday. I’m having AC then T. I’m also in the June chemo thread but may well be starting taxol with some July starters as my regime is 4 x AC and followed by 4 x T and not 3 FEC and 3 T. Hope all goes well for you next week and if you have any questions please post on here or the June thread. Everyone is always ready to help and share their experiences x
Member

Re: July 2018 Chemo Starters

Hi all -- I am trying to catch up on everyone who has posted since I was last in this thread. As ever, it is so great to hear from everybody about their experiences. And so I thought I should add my report, for those joining.

I am now at my 1-week anniversary of neoadjuvant FEC cycle 1 (29 June PM, so barely made the previous month).

So far, so good, despite the heat -- barely any SEs. I seem to have come off the steroids with minimal weepiness and I haven't had to take anti nausea meds since the required pills ended on Day 3. My chemo nurse suggested that I "get ahead of the nausea" by taking my mandatory 2 pills before breakfast and supper, and take 1 of the "as needed" before lunch. I gave them all a nice 30-45 minutes to settle and they seem to have done the trick. Might be worth asking your nurse about this option. Only small bit of nausea I had was on the night of chemo, and it may have been provoked by the lingering taste of Corsodyl.

I am fatigued -- but cannot work out how much is chemo versus the heat and lack of sleep (first the steroids, now the loo trips). I work from home freelance, so I am just trying to do things at a comfortable pace.

On Day 6 I woke with my scalp tingling, which the Junebugs have observed means the hair is beginning its journey to the bin. I am set for a wig-fitting this Tuesday, but not yet decided if I want one. My hairdresser volunteered to come with me, however, and I know he wants to help out in some way. (He's been cutting my hair since I moved here 9 years ago, and cutting my OH's hair for 25+ years.) I am trying to think in practicalities: come November I might be happy to have a second layer of warmth on my scalp. Plus, I think my hormone therapy on the other side of surgery means my hair will be returning slowly. I stocked up on beanies and some scarves because I think I will use them more often, especially through the early autumn.

Last night was my first temp scare -- I have been taking AM and PM simply because I tend to run a bit cold -- and found I was at 37.6C, which my hospital has decided should get a call to the chemo hotline. I took it 4 times with 2 different thermometers to be sure, then phoned. The on-call onco was with another patient and asked if I could call back in 15 or so minutes. Somehow my temp dropped to 37.2C in the 20 minutes I waited, so I decided to just keep monitoring it in the night during my loo visits. Back to my usual 36.2 this morning. Phew. (I started chemo 10 days after my biateral sentinel lymph node biopsy surgery, and one side sprung a leak in surgery day, so I had a bit of worry, all the more so since I have finished my neutrophil-boosting injections, too.)

Now just back to the SLNB side effects -- the tingling pain in my hands, the pain in my left biceps. By the time I recover I'll be having surgery on the breasts themselves! (All my nodes were negative -- best news in months.) I am hoping that getting back to my Knitted Knockers will distract the nerves and provide some relief.

Take care everyone -- and stay hydrated! I have been aiming for 2 to 3 litres each and every day, given the heat, and that may be helping a lot.
Member

Re: July 2018 Chemo Starters

Hi Sam , I'm Kate and I'm 52. I will also be starting chemo on the 13th ! I was diagnosed in Feb and had several operations and still have to go through a mastectomy at the end of the chemo .  Feeling a bit anxious about next week as I feel so well at the moment . 

 

I wanted to wish you the best for next week ..... we can do this !! 

 

Kate xx

Member

Re: July 2018 Chemo Starters

Morning All,

Warm welcome to Sam and Calista 😊

Reading the posts I found it funny how everyone is telling us we look better with short hair, I thought they were being kind but now being advised to keep it short after it’s all over! I am not a huge fan if I am honest but time will tell, at least it drys with a towel rather than an hour blow drying my thick mop...

Feeling much better after a tough old week but made it and ready for the next round 👊

Had a steady flow of visitors in recent days and much fun was had trying on my wigs by each and every one of them, they are great fun. My grandson only likes the one the same as my own hair as he said it looks like me again and it’s pretty 😥. He is slightly obsessed with just when I am going to be bald and mildly concerned about me picking him up from school like it.. bless him he is only 7 and have reassured him I will never do that so he is happy.

Today my lovely friend is going to teach me to crochet and this I am hoping will stop me internet shopping and produce a lovely blanket for my new grandchild due in September.

I have arranged for my mammogram I had done privately two years ago to be sent to the consultant for a recheck... Was concerned then but told all was fine and now here we are. Maybe nothing was there then but with the MRI stuff now going on I think like you cdc I could have been advised to have an MRI, would have been happy to pay for it myself.

Good luck to all having treatments today and those recovering enjoy the sunshine while it lasts and have a lovely day.

Best wishes

Karen

Member

Re: July 2018 Chemo Starters

Thank you cdc1811. I'm still trying to find my feet on here and I'm looking forward to sharing my experiences to help others in any way I can as well as learning to get through my treatment.
Sam xx
Member

Re: July 2018 Chemo Starters

Thank you Warcol. I have just requested to join.
Sam xx
Member

Re: July 2018 Chemo Starters

Hi Sam and Welcome Hope you find this forum as helpful as I have.

Hi Calista just realise predictive text changed your name to Alisha in my last post- sorry I didn’t spot that earlier. It’s good you’ve set up the Triple Neg FB Page. I’m not in that category but I’m sure it’s helpeul to those in the same situation.

Hi Willie I’m also out of practise with putting on make - up but have signed up to a Look Good Feel Better workshop- only trouble is that it’s so booked up I can’t get a place till November! I’ll be coming to the end of chemo then! Oh well from what I understand it takes a little while for hair to grow back. I’ve had a lot of compliments on my shortish haircut but haven’t been brave enough to go to a Grade 2. Also had a lot of people saying how well I look! Does make me wonder what I must have looked like before. I’m sorry I can’t offer any advice on fake tan. I’m so ridiculously pale that I really would just look so glaringly peculiar that I’ve never used it. I do think we are supposed to be extra careful with skin products though. Just picturing a green James Bond now! Take care x
Member

Re: July 2018 Chemo Starters

So, it seems my 'prison haircut' looks better on me than my previous full head of hair. Everytime I meet someone who hasn't seen it yet, they say the same.  I must've looked a right state before if a No 2 all over is an improvement!  

 

I'm definitely going to have to put some practice in with the make-up though as I look like a geezer.  I might audition for the next James Bond.  

 

I work from home and only go out to walk the dog or go to the gym, neither of which requires any make up at all, so I'm out of practice.   That's a job for this weekend, along with scarf tying.

 

Anyone got any insight into fake tan and chemo poison?  I'm a little bit apprehensive about anything chemical.  I might turn green.

 

Wx

Member

Re: July 2018 Chemo Starters

Hi Sam and any other Triple Negative ladies! Just to let you know as well as this support group I also co-run a FB closed group called triple Negative Warriors so if you want to join just type that into Facebook and you’ll get a message from me or my other admin lady xxxx
Member

Re: July 2018 Chemo Starters

Hello Karen,

 

Reading your post reminds me of what we have both been through, drain , picc line, it's been the un-knowing for me because left hand had not been talking to the right hand.  (Hospital) But that is now sorted.  Thanks for sharing your post.

Member

Re: July 2018 Chemo Starters

Hello. I'm Sam, I'm 48 and live in South Hertfordshire. I was diagnosed with breast cancer on June 18th and recently told it's triple negative with lymph node involvement.
I will be having EC-T (3 + 5) neoadjuvant chemo starting on Friday 13th. My request for the PICC line has been approved and may be put in after my pre-chemo appointment next Tuesday.
Good luck to everyone who is having treatment.
Sam xx
Member

Re: July 2018 Chemo Starters

Hi. Alisha So sorry you’re having tho go through all this again albeit with a different form of BC. I’m glad you’ve had no spread. I’m presuming that my tumours are two primaries but I just happen to have had them develop at the same time. 9 hours?! Wow you really are a hero! Definitely take one day at a time and maybe don’t rush back to work but I do understand the need to get back to ‘normal’ as soon as possible. Take care xxx
Member

Re: July 2018 Chemo Starters

I needed MRIs due to my dense breast tissue too Karen. I am what is known as mammographically occult-they show nothing!. Even the first person who did my ultrasounds at the NHS hospital picked nothing up. Thankfully the specialist radiographer was able to see ‘somehing’ when he compared my MRIs to the ultrasound images. My previous scan pictures from the past 8 years are going to be investigated again to see if anything was missed. I feel aggrieved that despite attending all my mammogram appointments (because of my high familial risk)they were of no valuable. It was a sonigrapher who I went to privately who alerted me to the fact I had dense breast tissue and this could be a problem - she said it was the densest Breast tissue she had ever seen! I had no idea this was even a problem but she was he one who informed me that I should have had MRIs all along. My surgeon is now pushing for me to have yearly MRIs. According to the NICE guidelines these are only offered to women with a proven BRCA 1or 2 mutation. I think it’s ridiculous because surely I am costing them a fortune with all the surgeries and chemo I will have. If they’d found the tumours at a much earlier stage I presume I wouldn’t need so much treatment. It’s good you have time to consider the options and will hopefully get the chance to discuss things with your oncologist and surgeon. Good luck! Xx
Member

Re: July 2018 Chemo Starters

Hi ladies
My name is Colista I’m 43 and live in Staffordshire! I had triple neg bc in 2016 and had lumpectomy 7 x FEC and 20 rads - move forward to April 2018 and following a routine mammo my other breast showed an abnormality which has been dx as triple positive ER4/8 PR 4/8 and HER2+ - my team have confirmed this is quite rare but just got the bone and CT results confirmed that it’s a new primary and no spread elsewhere
So I start the chemo wheel again on 16th July having pic line fitted next Thursday as had Hickman previously and I didn’t like it lol
As I’ve had FEC before I’m now having docetaxol (the T in FEC-T) plus carboplatin and targeted therapies Perjeta and Herceptin! I’ve had lumpectomy again first and 1/4 nodes positive so remaining nodes will be removed following completion of chemo!
As I’m having 4 drugs in one go I’ll be on the chemo unit for 9 hours (there’s better things I can think of doing 🤣)
I worked throughout last time as fortunately for me FEC-T was kind to me! In saying that the T part did put me in hospital with neutrapenic sepsis (had 2 weeks off lol) and I also had an allergic reaction but on the whole it was hard but very doable!
I can offer you support or answer questions as my original dx is where most of you are at now! I’ve said I want to work again but I’ll be taking one day at a time 😀
Looking forward to getting to know you all 😘😘
Member

Re: July 2018 Chemo Starters

Hi CDC

 

Yes, I had surgery first.  I think - I don't actually know! - that it was considered to be one small lump, removable then they'd follow up with chemo and rads.   I definitely had it in a node so they removed 17 of those but it was only in #1.   Each time they went in, they found something that hadn't been on the ultrasound, CT and MRI.   Maybe if they'd seen multiple lumps they'd have gone for chemo first, who knows?  

 

Reconstruction was never offered to me as an option as, the way I understood it from the BC nurses, the implants get in the way of the radiation (maybe one of our champions here will have more info on that?).   I understand I could have reconstruction later - a year after rads? - but that version of reconstruction sounds tough so I'm not going to put myself through that.  To be honest, I don't need it.   I'm not 26 or 36 and I'll still wear bikinis just slightly bigger tops.  

 

wx

Member

Re: July 2018 Chemo Starters

Hi Cdc,

I think it’s very similar to me in that the choices are around the extent of the op required afterwards.

They couldn’t manage to see it on the second ultrasound biopsy as I have dense beasts so they are planning the MRI guided one. Outer one is 23mm but the other is only 4mm and will no doubt shrink to nothing with chemo if it is in fact cancerous.

At least I have some time to consider the options, another appointment has been arranged to discuss with the oncologist and possible the surgeon too 🤷‍♀️

Best wishes

Karen