69196members
363270posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Anyone just having EC?

Highlighted
Member

Re: Anyone just having EC?

Hi everyone,

Glad u out of hospital herewego Im on ec5 & just 1 infection but so many trips to hospital with various se I've lost count.

Hopalong .. Charm Bracelet sounds lovely & hope PICC line out soon.


Carmen .. Hope you having good well week.

I'm day 6 after EC5 & feeling rotten. It just seems to get worse with each flipping dose for me. Been floored from day 1 this cycle.

Sorry to moan but hate the way the chemo wrecks me x











Highlighted
Member

Re: Anyone just having EC?

thanks Carmen and hopalong. Got released y'day evening so will be enjoying a day of doing nothing at home.. well maybe basking in the sun with a cup 🙂

Hopalong your charm bracelet is a lovely idea. I still have 2 ECs and 12 Taxols to go but we'll all get there in the end xx
Highlighted
Member

Re: Anyone just having EC?

Yeah Hopalong!!! Congratulations on getting through the trauma of chemo!

Pleased you found a nice charm bracelet too 🙂
Highlighted
Member

Re: Anyone just having EC?

Hope your feeling better Herewego, I had 1 hospital admission. It was on my 1st cycle and didn't relish it being repeated after every session, but it was a one off
Today is day 22 of cycle 6, ie the official end of chemo. I marked the occasion by opening a packet of Tamoxifen. Have still got my PICC so waiting for District Nurse to give it a final flush, back to oncology unit on Wednesday for bloods and removal. Neutrophils not high enough last week.
I have found a charm bracelet and intend getting it on Thursday, it's from links of london.
Take care everyone x

Highlighted
Member

Re: Anyone just having EC?

Oh no, that's horrible. Hope they let you out tomorrow and you feel better soon xx
Highlighted
Member

Re: Anyone just having EC?

I'm jealous - the first sunny weekend and I'm stuck in hospital with infection. This 2nd chemo has been much rougher than the first.
On the afternoon of the chemo(Tuesday) I ended up in bed with a bucket next to me just in case. Hubby was supposed to pick the girls up from nursery but there was absolute carnage with the trains so I ended up going the pickup in my pyjamas, green to the gills and not speaking much. I managed to keep the girls entertained until hubby arrived 1.5hrs later than planned.
By Wednesday morning the antisickness meds had got on top it all and I felt ok'ish until Saturday when I just slept and then the temp started going up. Hence the 2nd night now in hospital with iv antibiotics. Hoping to get out tomorrow and get to enjoy some of the spring air xx
Highlighted
Member

Re: Anyone just having EC?

Hi peeps,

Hope you had a good weekend, or as good a weekend as you could post chemo! Our lounge gets loads of daytime sunshine too, I often feel like I'm a cat lying in the sun, it's great.

 

I had a lovely busy weekend, done so much walking around that my feet are sore! Probably walked more over these past three days than I have over the previous eleven.  So pleased the nausea has gone and lovely to have my family around to keep me company. Terribly difficult decisions of which bandana to wear out each day!!! Didn't get to archery though as my PICC line arm is really sore, has been for a week now, but GP checked it out and couldn't see why. Went to the zoo instead 🙂

 

Take care xx

Highlighted
Member

Re: Anyone just having EC?

Week 3 definately best for me too girls.

Wow no anti sickness meds definately progress Carmen. Im still on the emend & onsansetron & feeling yuck but my house facing the right way for the sun & its glorious out there. Sunshine always cheers me up.

Sounds like youve got lots to keep you busy next week Carmen but dont beat your self up about feeling bit down. Think it helps to come to terms with stuff sometimes.

Hope cardio appmt goes ok next wk & probs just a reaction to the F (appropriate) drug.

Archery sounds interesting. Its great that youve got something you all enjoy together. Gets harder as boys get older. Weve all go to the gym. Tho not at the same time & they both play & love foortball. I pretend to like it but thats between me & you lol...

Hopalong hope your recovering well & did u find a fab charm charm bracelet.

Enjoy your weekend girls.
lots of love xx

Highlighted
Member

Re: Anyone just having EC?

Agree week 3 is the best. It's good to keep busy, stops me wallowing! Yesterday I went the whole day without anti-sickness meds, things are on the up.

Have a lovely weekend xx
Highlighted
Member

Re: Anyone just having EC?

It's good to make plans Carmen, but don't put too much pressure on yourself.
Week 3 was always my best week, actually felt normal again.
Have a good weekend everyone xx

Highlighted
Member

Re: Anyone just having EC?

Thanks for your lovely supportive message, it was great to get out. It's been a beautiful day here and I completely tired myself out with an hour and a half walk up a hill!  Think I overestimated my energy. 

 

My BCN is lovely, she's very sympathetic to how I'm feeling but also makes me feel like I'm actually allowed to be feeling rubbish and that helps make me feel better! Whereas other people (my mum) end up making me feel bad that I've upset them by feeling bad! Was doing ok until the cardio nurse rang me, now really stressing at having to deal with heart problems as well as cancer treatment.

 

Next cycle (3) is Monday 16th, so I've got all next week to be me again, so I need to get a grip and not waste it wallowing in self pity!  I have reflexology and meeting a friend for cake on Monday. Tuesday I'm going to Pilates. Wednesday hubby is working from home so he can take me to the hospital (for the heart scan) so we can have lunch out. Thursday either Pilates or Piloxing depending on how energetic I'm feeling. And no plans for Friday.  Tomorrow we're going into Chester and Sunday we might go to archery (our family hobby)... see I have all these plans to get me back to being me just for a while!

 

I know these next few weeks will be rubbish for you, but then only one more to go and bye bye chemo. Like you say we will get through it.  Thinking of you and those nasty se and hoping that maybe this time they won't be so bad for you. 

 

Take care honey and let everyone look after you xx

Highlighted
Member

Re: Anyone just having EC?

Oh Carmen i know exactly how you feel I get very down a few days b4 each chemo. .. then get mad with myself as should be making the most of my well days. Ive lost count of the times ive bubbled over & said just carnt do this again as feeling so down and wretched.
Hope you bcn sympathetic mine is lovely.

We will get through this you know Carmen as loads of women before us have. Think weve just got to let ourselves cry sometimes & then pick ourselves up as each treatment we have is nearer to blasting the disease out of sight.

Sounds like you had the most horrendous time on fec. At least you not been as bad on EC. Is the next cycle number 3 and which day.?

Its number 5 for me its knocked me for 6 again but hay it will pass.

Hope you feeling better after your walk and hope family being at home over weekend a distraction. If you can get boys off xbox...

im always here to listen so rant away lovely ...

Love .& Hugs Caroline xxxx

Highlighted
Member

Re: Anyone just having EC?

Hi 🙂

 

My two love the Xbox as well, the older one is Forza mad (car racing) and the younger likes Skylanders.  It's a good distraction for them, stops them worrying about me all the time! 

 

Feeling completely fed up at the moment, like there's no end in sight... hoping a busy weekend with my family will help me out of this misery! Again it's such a lovely day outside... I will force myself to go out after this instead of moping about the house!

 

No, they don't routinely check heart but with 1st cycle I was at A&E twice with low bp, fainting and rapid heart rate, which is why they dropped the F of FEC. Still have palpitations with EC but nothing like how I was with FEC.

 

I know it's over a week until cycle 3 but I know what you mean about not being ready for it.  And knowing that we'll feel more tired as it goes on really doesn't help.  I really need to get a grip, was blubbing on the phone to BCN this morning while lying in bed listening to The Smiths, of all the depressing music in the world! 

 

Ok, giving myself a kick up the backside now and going out for a walk before the boys get home... sorry for the misery!  Hope you don't feel too bad today xx

Highlighted
Member

Re: Anyone just having EC?

Thanks Carmen.

Bet your boys back now & you no time to be bored. Mine are both home, fed & now playing fifa on xbox. Football mad my two!

I not keen on xbox but must say its been a blessing when ive been feeling rotten.

Glad the nausea on its way.

Ive had loads like yours today. Think we so busy just getting on with our lives pre BC that we find it really hard to do nothing.

I keep telling myself (& my boys) that its ok to be bored sometimes & just think things over.
Easier said than done tho...

Blimey... do they think its the chemo making your heat race? Great that been picked up & your getting well looked after. Good Luck with the cardio thingy next week. Think mine races in first few days after chemo infact ive got palpitations now. Yikes....does your hospital check your heat routinely?

Treatment quick & went ok but
feeling down as know whats coming with the SEs. I didnt feel ready for the treatment today as have felt much more tired than usual this cycle. Nurse assured me its the cumulative effect of the chemotherapy.

You seem to be doing so much better on EC. Must be such a relief.
Im finding it a right old slog carmen. Will be so glad when its over.

Love Caroline xx

Highlighted
Member

Re: Anyone just having EC?

Hi Caroline,

Hope everything went well today and that you get some respite from the nasty se.

 

My nausea is lots better but feeling bored and lethargic today. I'm kid free until 5pm but have no drive to do anything, such a waste of a day!  

 

I got a call from the cardio unit yesterday, they want to do an echocardiogram next week because my 48hr heart trace showed an episode of SVT (supra-ventricular tachycardia) in excess of 220bpm. I remember it happening at the time but didn't realize quite how fast my heart was beating! Think it was definitely a good thing that oncology changed me to EC. 

 

Hope you're feeling ok xx

 

 

Highlighted
Member

Re: Anyone just having EC?

Hi Hopalong,

 

You must be sooo relieved to have finished the chemo .... whoop whoop! and well done for getting through it. Glad you've got nice things planned. Loving the idea of a charm bracelet. Hope you find something fabulous.

 

Ive just been for blood test in preparation for EC 5 tomorrow and been for a walk trying to shake off the fatigue. Now needed to sit down....lol.

 

Lovely sunny day here. Noticed snow drops in the garden. Heck amazing considering we had snow here on Monday xxx

Highlighted
Member

Re: Anyone just having EC?

A charm bracelet is a great idea... congrats on finishing chemo xx 🙂
Highlighted
Member

Re: Anyone just having EC?

That's me done with active treatment. At the oncologist tomorrow for tamoxifen. Then off to the hospice for some complementary therapy.

Treat wise am thinking of getting a charm bracelet currently looking at what's on offer will need 8 (surgery PICC line and 6 chemos.)
Am arranging an afternoon tea and several lunches with friends.

Highlighted
Member

Re: Anyone just having EC?

Hi Carmen,

 

You will love the Looking Good course I went after last treatment and it was great to meet other women in same situation. I picked up some nice make up tips and was given a couple of lovely freebies.

 

Im with you regarding the treats. We so need something to look forward to on our good days but especially when the chemo is over. I love the idea of your fire engine drive and the trip to London will be great for you and your family to look forward too......not to mention the cake x Im planning a pink party! (lots of cakes).

 

Hay Hopalong, Sorry your feeling grim today......hang on in there. I think it's best just to give in and sleep when your feeling rubbish. The nausea is just horrible. crystallized ginger has helped for me but cut into slithers as big chunks for me have the opposite effect.

Is that you done with EC? If it is Fantastic!

Iv noticed fatigue been much worse this cycle and has gone on for longer. Im due number 5 on Thursday all being well but Im sill feeling much more tired than usual. Presume it the cumulative effect?

Hope your feeling better soon and return to good health quickly.

 

Love Caroline xx

Highlighted
Member

Re: Anyone just having EC?

Hi Hopalong,
Sorry you're feeling so rotten... But you are so close to the end now so that has to feel good! You deserve the biggest treat when this is over, actually you need a whole series of treats!

LGFB is between cycles 4-5 and I'm really looking forward to it. Especially as my free reflexology sessions will have finished by then. I'm trying to build in lots of mini treats to keep me going. My big one is a charity driving event for after chemo is finished... I get to drive a fire engine lights and sirens blazing (amongst other things)! Really can't wait! And I want to take my hubby and boys to London so I can eat cake from The Hummingbird Bakery cake shops! And maybe have a wigs and hats birthday party too.

The best thing about chemo will be celebrating it being over 🙂

Really hope you start feeling better soon, meanwhile plan some treats xx
Highlighted
Member

Re: Anyone just having EC?

Carmen, you will enjoy your look good. I did mine just after cycle 3 and felt it was the perfect time as really needed a pick me up by that point.

I'm now day 16 from my final EC. Feeling abit sorry for myself today, have been struggling with fatigue since sunday but trying to battle on when really should just give in. Vomited last night, thankfully still have not removed my plastic bowls from lounge and bedroom, couldn't make it from bedroom to bathroom. Still in dressing gown. Am going to write today off.

I loose between 2 & 4kg in week 1 of each cycle due to nausea, and not being able to eat normal size portions. (think that was the problem last night)  Just about manage to put it back on by the time the next cycle started, by loading up on empty calories. I started with thrush on cycle 3 and it has continued. My main problem though is dry mouth and it is that, that is causing me the most distress. My oncologist has given me biotene which does help, but hope it doesn't hang around too long now chemo is over.

Hope everyone else has a good day.

 

Highlighted
Member

Re: Anyone just having EC?

Ooh excited, just booked on to Look Good Feel Better in April 🙂
Highlighted
Member

Re: Anyone just having EC?

Hi Caroline,

I was so down during cycle 1 when I was so fatigued that I could hardly get out of bed but I think I was very lucky to only have that. I feel for you having two weeks of what you've been suffering. Definitely make up for the lack of eating this week... as much cake as you like and then have more just in case!

 

I made a healthy start this morning and had porridge with banana and blueberries in the hope that it would keep me feeling fuller for longer than toast... I'm sure that'll be wishful thinking!

 

We didn't get any snow yesterday and today looks like a nice day. It feels good to be in March, psychologically it's a lot nearer to my end point in May! 

 

Have a great day xx

Highlighted
Member

Re: Anyone just having EC?

Hi Carmen,

Ha ha your making me laugh.....
Great your up and about tho & eating well.
Your body must need the calories to recover & you must listen to your body!

It has opposite effect on me I really struggle to eat & drink for the first two weeks as get sore mouth & oral thrush and awful smell & when I do eat get stocking reflux.

Have been getting appetite back by 3rd week & digestion seems to settle by then.

I have tabs for se but then they give me the runs .. oh joy ..... soooo glad nearly done with it!

Hope reflexology nice & relaxing I didnt get to my aromatherapy session as weve had snow again so chaos here this am. Going to re book for my next good week.

Ive been catching up with friends over last few days with tea & lots if cake.

Hope you have nice day tomorrow. Oh & cake.

x

Highlighted
Member

Re: Anyone just having EC?

Ha 57 cycles, that would be horrendous... bad enough to have 6!

 

Definitely make the most of this week, I am trying to do stuff already (week 2!).  

 

The nausea is better but I still feel horribly sick when I'm hungry which unfortunately seems to be a lot of the time.  I am eating like I'm pregnant with a whole football team! Today in addition to three decent sized meals I've had two lots of sandwiches, tortilla chips, minstrels, Welsh cakes (homemade yesterday for St David's Day) and more biscuits than I care to mention and there's still time to eat more before bed!!!  No wonder I put on 3kg between cycles 1 and 2... I'm very conscious that I'm eating so much but I'm really genuinely so hungry!  

 

But apart from eating, I had reflexology at the hospice today and the district nurses came to do their stuff with my PICC line.  Tomorrow I'm meeting a friend at our village tea rooms - more eating required. Overall, EC is way better for me than FEC, the nausea is much worse, but I am actually able to get out and do things, even if it's only for an hour or so. Went to Subway for lunch yesterday and it wiped me out.  

 

Enjoy your energetic days before your next cycle and hope you don't suffer too much from the se!

 

Oh no hubby 's just brought me some cheese puffs... he's not helping you know!

Highlighted
Member

Re: Anyone just having EC?

Thats ec 5 NOT 57!!!! Omg imagine that x

Highlighted
Member

Re: Anyone just having EC?

Hi Carmen,

How you getting on. Hope you feeling better this week & the nausea has passed.

im due EC 5 7on Thursday. Been making the most if feeling well. Although have felt much more tired this cycle. Assume its the cumulative effect.

Hopalong .... good that you got warning to avoid oils etc.. with foob.
Great your scar fading to silver already.
I keep getting asked if ive had or will be having recon & folk seem suprised ive jot gone for it till I tell them what it would involve for me.

X

Highlighted
Member

Re: Anyone just having EC?

Hi,

Not had any problems with dye but then was told not to let foob come into contact with oils and lotions.

I only use johnsons baby lotion on my scar and give everything a good rub/massage from clavical to about an inch below scar and all the way around back side to shoulder blade at night. Had surgery in September and scar already becoming more silver.

My friends were surprised at my decision not to have recon, being a busty bird who always showed cleavage, but its not something I am desperate for at the moment and definitley not immediatley. If I do have recon I will need a back/tummy muscle one as because of where my tumours were I had to have a radical mastectomy and no skin could be saved. I am completley flat.

Another prosthetic option I have is a stick on but am happy with the one I have now.

Highlighted
Member

Re: Anyone just having EC?

Don't blame you for not wanting that sort of reconstruction at the same time, sounds traumatic!
Highlighted
Member

Re: Anyone just having EC?

Hi Carmen,

 

Hope the nausea passes quickly for you. It has become the norm for me Im afraid even tho I take Emend, and three others tabs that I carnt rmbr the name of. I was so very sick after my first EC and it went on for 8 hours solid. I went back to hospital the following morning and was given iv anti sickness drugs and eventually got sorted out. Im very scared of that happening again.

 

Thanks for telling me about your reconstruction. It sounds lovely and I do think your brave. Its great that they can lift the other one in line too. Heck! a women I work with has recently paid to have hers lifted up a bit...lol

 

I think might have considered it if they could have just inserted an implant instead of the breast tissue but the surgeon told me that because Ive had radiotherapy in the past, the blood vessels under the skin in the affected breast were likely to be damaged. Therefore, would have to reconstruct taking skin and muscle from my tummy/back etc and I wasnt up for that well, not yet anyway.

 

My boy home from now and he okay.

 

xx 

Highlighted
Member

Re: Anyone just having EC?

Hi Caroline,
It's weird feeling nauseous all the time, I didn't have it after cycle 1 as one domperidone sorted it out. But then I felt so rotten with other se maybe nausea was the least of my worries... on the plus side though it's not stopping me eating, salty snacks are my downfall today! Might be easing a bit now.

I was unsure about immediate reconstruction at first because of longer recovery times but was more worried about body image so had mastectomy and reconstruction on Dec 11th, they were supposed to put the silicone implant in at the time but because the tumour was really close to the skin they were worried that they'd have to remove more skin if the pathology showed any cancerous tissue in the samples. But luckily the skin was clear. They added saline to the expander implant twice giving me my final size boob for new year! The shape looks amazing in clothing and is lovely and perky out of clothing, might need a lift on my real one though! Apparently removing it to put in the silicone one is quite a straightforward procedure, not sure when I'll get it done. I have to wear quite supportive bras all the time, even in bed, to support the implant as it pulls the muscles otherwise... hoping this will stop when I get the silicone one. I'm glad I had it done straight away though and I'm overall happy with my fake boob!

You'll know if or when the time is right for reconstruction, zumba-Caroline was planning on having hers done after she'd recovered from all treatment but said she'd felt like she had already lost two years of her life to BC so put it off. I haven't seen her for ages but she was happy and positive about her decision and getting on with living her life.

I hope your son's finger recovers soon, feels like we live in hospitals!

Love Carmen xx
Highlighted
Member

Re: Anyone just having EC?

Hi Hopalong,

 

Thanks for the advice. Im alo close to Nicola Jane shop but think like you will wait till treatments finishes before I buy the bean bag one.

 

Im not totally happy with the NHS prosthetic as moves across. So Ive asked to go back for a refit and will ask to try lots of different ones.

 

Have you had an problems with dark coloured bras bleeding dye onto your prosthetic? as I have a black bra from Amoena with which this has happened. I spoke to Amoena and they told me that oil (i use bio oil) causes a reaction in the between the fabric and the prosthetic which causes the dye to bleed.

Should come with a warning me thinks as bra £34.

 

xx

 

 

Highlighted
Member

Re: Anyone just having EC?

Hi Carmen,

 

Sorry your not feeling so great today.  Think you and I on same meds for sickness. (looking at your previous post) nausea is horrible and I sympathise. crystallised ginger helps for me. I cut it into slithers tho as big chunks seem have the opposite effect.

 

Orrr your boy sounds a love, bless him.  My boys very affectionate just now and keep coming for a cuddle... we talk a lot about whats going on as I dont want them second guessing.

My youngest came home yesterday with a bruised and swollen finger after playing basket ball in PE at school. He insisted on going football training last night but this morning the finger much more swollen so took him to A&E and it they think it may be fractured. So he is strapped up....and going back next week to check it again.

Carnt keep away from the flipping hospital ...lol

 

Dont think all loose lashes and brows and I hope that you are one on the lucky ones.

 

Its good to know Zumba is doable as a uniboober and that lady sounds like a right warrior... amazing.

There's hope for us!

 

Think you are very brave having an immediate reconstruction and I think you are doing amazing well.

When did you have it done? Are you happy with it?

 

I just couldnt face it but may change my mind later on as finding bras and prosthesis that feel exactly right proving to be harder than I expected.  Also having daily 'what to wear' issues as pre surgery clothing just doesnt seen to look right anymore. Maybe a bit of retail therapy is needed....

 

Had lunch with a couple of old friend today and that was lovely.

 

Hope your feeling a bit better. Look after you. xxx

 

 

 

 

 

 

 

Highlighted
Member

Re: Anyone just having EC?

Hi all,
Waiting (Caroline) I have seen/felt the bean bag swimming prosthesis from Nicola Jane in real life and am going to purchase now chemo is over and my PICC will be leaving me soon. It is very tactile, light and reasonably priced at £30 ish. I've never been a big gym bunny/swimmer but do enjoy my spa breaks so will be ideal for these weekends away.
A tip i got was to go to a shop selling prosthetics (luckily I live 1/2 hour drive away from Nicola Jane) for a fitting before my NHS fitting which I did and they gave me the name size of one I was happy with. I went to my NHS fitting and tried several not an easy job matching an F cup not a lot on the shelf in an appropriate size and don't get me started on mastectomy bra choice!!! Anyway decided on one not the Nicola Jane one and tried it for a month but it kept moving around too much so rang my BCN and they ordered the recommended one for me, which fits/stays in place much better and have even worn it in non pocketed bras.
I guess what I'm trying to say is don't be afraid to try a few different prosthetics

Highlighted
Member

Re: Anyone just having EC?

Hi Caroline,

I think kids are amazing, they seem to just cope with everything. My oldest is a bit more clingy than usual and asks me how I'm feeling a lot, bless him. He even said my no. 8 haircut looked cool and that I was 'like that woman who does sports on the tv'. Turns out he meant Claire Balding(!) I'm certain there was no pun intended!

Dreading losing eyebrows and lashes, but I am pre-armed with a bandana today just in case anyone comes to the door!

I used to do zumba with an amazing lady (also a Caroline) who when I first met her pointed out that she had a fake boob (prosthesis)! She joined a breast cancer survivors Dragon boating team and did a charity Dragon boat event in Venice... truly amazing lady.

I had an immediate reconstruction which is saline filled and pretty heavy, they lift the chest muscles to insert it so there's still a lot of pain if I do too much to exert those muscles. At some point I'll have it replaced with a silicone one.

Having a tv day today as feeling a little queasy, nothing major but not nice anyway.

Hope you're having a great day 🙂
Highlighted
Member

Re: Anyone just having EC?

Ha ha your making me laugh about answering the door.  I had a knock on my door first first thing but ignored it & postie dropped parcel with neighbour.Felt bad but I really didnt want to give him a fright...lol.

 

It takes me ages to get myself presentable at the moment as no hair, eyebrows or lashes now but hay I get there in the end. Ive ordered some stick on eyebrows ....... should be interesting...and hoping quicker than the stencil and powder compact Im experimenting with at the moment. I put it on then take it off,,,,then put it on again.......

 

I love Zumba and pilates but oooo not thought about a support bra for when I get back to exercise although I have looked at light a weight prosthetic

for swimming. Nicola Jane have one thats a shaped but light weight beanbag and looks perfect. It kind of droops like a real boob. 

 

Looks like you will need to draft in some help over Easter or maybe they will put it back a few days as Bank Holiday? Great you will be more than half way tho...

My last one is due 26th March (yeh!!!!) so hoping to be on the mend by Easter which will make a change for us as last two school hols have fallen just a week after chemo.

 

Ive got lovely energetic boys too, mine are 13 and 18 and I hate them having to experience this but I have to say that they both coping just fine.

 

Ive got everything crossed that you dont have to have radiotherapy.

 

Love Caroline xx

 

 

Highlighted
Member

Re: Anyone just having EC?

It's the daily travel for radiotherapy that makes me despair... I'm quite confident that onco will agree with surgical team that it's not required... setting myself up for disappointment here!

I used to do zumba, but since surgery can't cope with all the jiggling around, not to mention the fact that my extra supportive sports bras are so uncomfortable now! BCN recommended Pilates, and if you have a good instructor they will encourage you to only work at a level that you're comfortable with. I'm surprised by how much I like it actually.

I'm dreading Easter hols, as cycle 4 is currently due Easter Monday... not sure how that will work out with two energetic boys (12 & 13)!

Haven't left the house today but did answer the door twice, once to the postie and to our neighbour both times with baldie patch on show! Made me feel very brave 😉
Highlighted
Member

Re: Anyone just having EC?

Hi Carmen,

 

Totally agree about he scare stories. My heart goes out to that poor women tho how awful. I feel confident that our oncologists are doing the very best that they can for us all.  Dont think they are unable to plan for our treatment 100% till after surgery. My tumour also turned out to be grade 3 and not 2 as originally thought but HER2 negative which will be why herceptin not on my list wont it..

 

I hope your plan doesnt change again but at least they making sure that your getting what is absolutely right for you and that has got to be a good thing. Radiotherapy is nothing like as bad as chemotherapy. It makes you very feel tired and travelling to hospital every day can be hard work but the treatment itself takes couple of minutes at the most and you dont feel a thing so please dont worry.

 

Im dead impressed you managed to get to 2 pilates classes last week.  Im really missing the gym and the classes as usually do 3 or 4 most weeks. ive suspended my membership for the time being as just dont have the energy for it. Can just about manage a daily walk in third week.....lol

 

Fantastic half term fell on a good week for you. It was the opposite for me and I felt so guilty being laid up but my bhusband took some time off to sort everyone out.

 

Hope reflexology relaxing on Monday and I agree its lovely  to chat......this site is a god send.

 

Lots of Love, Caroline xxx

 

 

 

Highlighted
Member

Re: Anyone just having EC?

Hi Caroline,

I guess you were just doubly unlucky! I don't really want to put scare stories on here as its not helpful for any one, but just this once to emphasise how random this seems. The lady sat next to me at chemo on Monday had a lumpectomy and radiotherapy last summer. She was told clear margins etc. 9 weeks later she had concerns over an area of her scar and she'd had a recurrence so had a mastectomy on the same day as me and is now having chemo... she started on FEC but ended up hospitalised due to horrific side effects, so is now on something completely different, 1cycle every week for 12 weeks.

 

There are a lot of different chemo treatments that seem to be used, so I guess we all have to trust in the oncologists. For now though I'm quite happy to not be on FEC anymore!

 

The original plan suggested for me at diagnosis was just surgery and tamoxifen. But then after surgery my tumour was upgraded to grade 3 from 2, and because I'm only 42 they suggested chemo as well. Then when I went for first chemo, the oncologist told me that my HER2 was actually positive not negative, so herceptin got added. On Monday, I saw my new oncologist who wants to review my pathology to confirm whether I need radiotherapy or not... I feel like a medical experiment, it's like everything changes every time I have a conversation with them! So yes, I have a long way to go but as long as the side effects aren't too bad, I'm pretty sure I'll get through it! But really hoping no radiotherapy.

 

The good days are great, on week three last time I went to 2 Pilates classes and a higher energy piloxing class (which I did at half power!), and met a friend for cake. And I was fit and well for half term last week having been postponed, although playing badminton was a mistake!

 

Enjoy your aromatherapy, I have reflexology on Monday morning, and good luck for next Thursday 🙂

 

It's really nice talking to people on here, helps to feel we're not alone!

 

Take care, love Carmen xx

Highlighted
Member

Re: Anyone just having EC?

Hi Carmen,

 

Im hoping and praying that this is indeed the end of it! I had genetic testing done back in 2010 as BC is in my family but was told I dont have the dodgy gene and my consultant said he couldnt see any reason why BC should return............mmmmmm.

 

Really glad that your no feeling as bad as your did with the FEC. Long may it continue eh.....

It sounds like youve a way to go Carmen but you can do it and times passes ever so quickly.

 

Ive no idea which drugs are planned for me after chemo other then hormone treatment.

Kinda got my head in the sand as need to get thro the chemo first.

 

I think its fantastic that we are all treated individually rather than a one treatment fits all approach.

Reading various threads on here there seems to be lots of different treatments to tackle BC.

 

Re the FEC/EC thing....Ive spoken to may women at the chemo unit I attend and they all having EC rather that FEC. Im going to ask the nurses when Im due number 5 (next Thursday) to tell  me about the F part just for clarification.

 

Anyway on a positive note. Im making the most my good days and meeting friends and getting out and about but slowly. Im noticing the fatigue is raking up with each cycle .... the cumulative effect I suppose and got an aromatherapy session booked on Monday.

 

Been out for a walk today as the sun is out and returned to the most beautiful flower delivery. Awww......cheered me up no end.

 

Hope you continue to feel well. Feet up and look after yourself.

Lots of Love Caroline cccc

 

 

 

 

 

 

Highlighted
Member

Re: Anyone just having EC?

Hi Caroline,
Sorry to hear you've been through this twice now, but hopefully this will be the end of it now.

I'm having herceptin every three weeks for a year and tamoxifen for 10 years! Unless they change their mind on that.

I have to say that so far I don't think I feel quite as bad on EC as I did on FEC. I'm pretty tired but not exhausted and my bp hasn't dropped anywhere near as low as with FEC so I'm not feeling constantly dizzy, which is great... still early days though!
Highlighted
Member

Re: Anyone just having EC?

Hi Everyone,

Hopaling - wow! You must be so releived...

Carmon ...I will be having hormone treatment for 5 years following chemo. This is my second brush with bc as was here in 2010. Had WLC .& Radiotherapy back then.

For me the hair loss has been very upsetting. Lost so much by 2nd cycle decided to give up on it as was just taking up way too much energy . Some women manage to keep some hair but not many on EC.
Our hair will grow back in time.

My team tell me that im particularly sensitive to the drugs just unlucky I guess.

Hope you cope really well and get through it as well as you can.

Be gentle with yourself.

Love Caroline xxx

Highlighted
Member

Re: Anyone just having EC?

Hi Hopalong,
Congratulations on getting through chemo! 🙂 And on persevering with the cold cap, I'm sure your hair will come back quicker than if you hadn't used it... I'm just not brave enough.

I've had the emend tablets for both my FEC and EC cycles as I am very prone to motion sickness, including motion on cinema screens and computer games! Then for three days have odansetron twice a day and dexamethasone twice a day and then top up with domperidone as and when I feel nauseous, usually halfway between the odansetron doses.

I too had a PICC line put in after my first cycle as my veins are hard to access, it's been a lot easier and pain free second time round with the PICC.

Carmen xx
Highlighted
Member

Re: Anyone just having EC?

Hello all,

I have just had my final 6th EC only (day 9 today). Again I was told when I asked it was due to my no node involvement, my chemo was a belt and braces exercise.

Side effect wise I feel I haven't done too bad, my main problem was nausea but after several drug changes we found something I could cope with. My cocktail was Emmend, 8mg ondansetron and cyclizine as and when. Beware the constipation ladies movicol and glycerin suppositries help!!! I had a PICC inserted as found the infusion too painful for my shoddy veins, but other than that no real problems.

I cold capped all the way and my hair has thinned dramatically but has had 2 haircuts and parting changes to hide my crown bald patch approx 4x5cm, and a wide elasticated fabric hair band hides it well.

I basicaly write off week 1 and then can function reasonably well week 2 and am back to normal week 3.  It is doable and before you know it your at the end.

Hope my info has helped, keep going and good luck xx

Highlighted
Member

Re: Anyone just having EC?

I found the worst bit was waiting to start chemo and not knowing what to expect... way worse for me than waiting for surgery! My chemo se were extraordinary and apparently I shouldn't have felt that bad!
Hope it goes well for you x
Highlighted
Member

Re: Anyone just having EC?

Hi carmen42, I start on 4th March, posting on the March chemotherapy thread x
Highlighted
Member

Re: Anyone just having EC?

Hi Herewego,
Thanks for replying, we have to put so much trust in the doctors that they will do the best for us. Glad your first cycle went ok and good luck for the next ones xx
Highlighted
Member

Re: Anyone just having EC?

Hi Carmen, I'm stage 2 with spread to nodes and grade 3 and on only EC.
My onc was confident EC will be enough for with less SEs and my 1st cycle has been much better than I was expecting.
I'll have my 2nd doses next week so hoping it doesn't get worse as it goes on x
Highlighted
Member

Re: Anyone just having EC?

Thanks Caroline and Karup, I am also grade 3 nodes clear so you have reassured me that I'm not getting second best in terms of treatment... pretty much what the oncologist said. Still seems odd that they are as effective though... maybe the doses are different.

Anyway, at the mo I'm exhausted as the huge dose of steroids I had yesterday for chemo at about 4.45pm kept me awake most of the night! Currently working up the energy to get out of bed for some lunch!

I did cold cap for cycle 1 and was going to persevere for cycle 2 despite a lot of hair loss, but in the week between the cancelled cycle and yesterday so much more came out that it really wasn't worth doing... And it made treatment so much more pleasant without it!

So, (onwards and upwards as they say!) I'll see how I get on this time, thanks for the warning that it still might be a nightmare, its good to be prepared!

Caroline - good luck for your remaining cycles, do you have to have further treatment afterwards?

Karup - good luck with chemo, I hope your se are minimal. When do you start?

Carmen xx
Highlighted
Member

Re: Anyone just having EC?

Yes im the same as you Kurup grade 3 but no spread thank goodness so sounds sensible.
re side effects......
Well, ive had the lot & some but l hope you dont.. Onc reduced my dose after 2nd cyle due to se but still an epic slog for me.
x