Hi! I’ve been trying to get the hang of writing a message without much success!! I had my first round of chemo FECT on July 16th & reading all your posts has been really inspiring! I’m 39 with 2 sons aged 10 & 7, I was diagnosed 4 weeks ago & am having chemo then surgery then radiotherapy. Anyway, just wanted to say hi & I hope this posts this time!! xxx
Hi Ann and welcome ?. You’re just one day after me on this chemo road and my boys are 8 & 10. I hope you’ve got past the worst of this round and can enjoy some of the holidays with the boys. You must be still reeling as everything has happened so quickly. I was diagnosed in May then had a mastectomy and full lymph node clearance at the start of June, 1st chemo on the 15th and after it will be radiotherapy and anti oestrogen treatment.
I’ve got a tingly head today so I’m guessing the hair loss is not far behind a and my purple wig will need to come out ;-).
Hi manicmum, I hope you’re not feeling too bad tonight, x
Thanks for the help with managing my painful scalp - today I think is the day when what I have left comes off! My saddest point about this because yes I know it will grow again is I am an identical twin - we have the same hair as well as evrything else feature wise so it will be like a temporary loss - maybe only a twin can realise what that means. On the positive the scalp will hopefully stop aching and itching and a slightly different hairstyle might be good for me. Second chemo that was delayed because of my WBC count but due for next week so we move onwards!!
Hi Manicmum, glad to hear you’re not feeling too bad and aren’t mums great! I’m so lucky that she has been able to look after the boys and help out.
Hi everyone, I turned the corner on day 10. First day I felt really good and no nausea at all. Now going to try and enjoy the time until the next chemo session on Aug 5th. On Monday am taking my DD to see that new film Inside Out that everyone’s raving about and hope to do other normal things! Been such a whirlwind of surgery (and problems with painful drains and fluid build up), then having a port fitted (which turned out to make chemo much quicker and easier) then chemo. Feel not been normal since June 14th the day before my mx. My hair also feels odd with an itchy scalp, almost as if I’m already wearing a wig and I’ve already lost a few strands. My onc advised me to get it all cut down to a number two ASAP with clippers and go straight on to scarves or wigs. He said that way you take control and you don’t end up with hair all over the bed, clumps in the shower and seeing the slow decline of your hair! I was planning to do it before my 1st chemo but was so busy with wig shopping and the port surgery that didn’t have time and then felt far too awful after chemo to go to a hairdresser! But now planning to do the deed on Tuesday when DD is at a holiday activity thing. Will take wig & scarves to hairdresser! I’ve bought a few from Bohemia and Suburban Turban. The pre tied one one Bohemia actually looks better than I thought (from the website). I ordered a swim hat which makes me look like an ageing Elizabeth Taylor on a bad day - but quite fun! Hello to everyone and hope everyone’s having a good Sunday
Baz x
Morning everyone! Glad to hear most of you seem to be starting to feel better!! Baz you are a day behind me, I’m also hoping to do much more in the next week or so before round 2! And Mazzi I’m glad you’re feeling better too. Manicmum I’m on my last injection today, are you taking Nevistim? I had awful pain the other night & like the nurse said it was very much like labour pains ? yesterday & today I just feel really achey like I’ve run a marathon! How have you been coping with the pain? I hope the injections aren’t as bad this time for you!!
I got my wig yesterday & a couple of turbans in preperation but so far no hair loss yet! Part of me just wants it to hurry up & fall out!! Anyway I hope you all enjoy your Sunday xxx
Hi Joyce, I have 10 which I inject myself starting on day 2-11. So last one is today ?!! Til next time anyway! I’ve only started to get aches from them the last 3 days & the other night was so bad it felt like labour! How are you finding them? The first few times I did them I got a hot flush & racing heart about 30 mins later but ok since then! xxx
Yes all our regimes are slightly different. I only had to inject myself once 24 hrs after chemo - not sure why I’ve only had one injection. I have to have a blood test between day 10-14 after 1st chemo session only & having that Tues morning.
Baez x
Morning ladies,
just wondering if can hop aboard your chemo group…cheating really as diagnosed in April and started neo adjuvant chemo for Grade 2 ER & HER2 pos Invasive DCIS. Im 48, have a gal at Uni whose 19 and live with my hubby,sister bro in law and mum …long story, we’re just like the Waltons!
Just to share my experiences so far…
Currently under going 6 cycles…had FEC x3 and had 1st Docetaxel on 21st July…so day 6 and having 7 days of Zarsio. I found FEC to be manageable…first 4 to 5 days felt fatigued, cotton mouth, nausea…but still managed to get out and about …took anti sickness meds for 2 to 3 days but ate well and despite steroids slept well too. Bought a bike and in week 2 and 3 did regular outings on it and tried to do 5k walks daily…
I havent used cold cap and hsir all came out in 3rd week after 1st FEC…literally in 24hrs!..now use hats or just go brave and bald…i forget my head gear at times.
Now Docetaxel…found this to be different story…knew would have boney aches and pains…affects my knees,thighs,back and hips but OMG…no one told me i may get 'labour ’ type pains…wonder if anyone else has??..have also been spotting for a week too…started day 3 and struggled over weekend…now on regular ibuprofen,paracetamol and prn codeine…helps but not fully. Rang helpline …just advised regular pain relief…i on the other hand had delusions of every single pelvic problem you could name!! Also feel ‘drunk’, dizzy and fuzzy…no taste at all but stil eating well, poor sleep…have no expectations of myself at the mo…bike is staying in the shed for now and im taking it as it comes. phew!!!..long post and like i say Hi to all you ladies.
Take care, its definitely doable and keep well.x
Welcome JKY03,
You seemed to have done so wel on your FEC I’m not surprised that Docetaxol has come with a bang compared . I’m on a slightly different adjuvant regime which is Docetaxol / cycophosomide. I had my its one on 17th July so day 11 today . Your description of SE sounds exactly how I would have described!! Apart from felt like I had been hit by a bus !!!
My worst day for bone pain was day 6/ 7 and felt like you dizzy and woozy I only realised this was from all the pain meds when I started easing off them. Hopefully your pains should now start to ease off soon and you can then ease off the meds also. Once I did this I started to feel normal .
Unfortunately all the meds / drugs upset my stomach and ended up with stomach cramps and diarrhoea for a few days thank heavens that’s now settled but left me with a a curry bum!! Hope you don’t get this also .
Anyway there is light at the end of the tunnel day/10/11 energy levels back to normal and even walked the dog down the beach yesterday ( felt good). Only other slight issue now is that I’ve now got mouth sores and thrush!!! (There always seems to be something ! Unless I’m destined to try all the possible SE !!!) however I have been lucky enough not to have suffered the raised temps / infections at all - so not all bad.
I am trying the cold cap … So far so good !!
I’m 50 ( in fact my dx came literally after my birthday) have 2 daughters age 22 and 19yr old at uni also and live with my husband and dog .
How you have a good day x
Afternoon Ladies, welcome JKY03. How lucky to have got through FEC and started Dox - the end is in sight.
Tomorrow is my 2nd FEC and this time I have been given Emend so I am hoping to get through it alot better than last time after reading good reports about Emend. I have decided to go for the Coldcap again - so far no hair loss. Reading about some of you that have gone through hair loss you seem to take it all in your stride and I hope I am as resilient when it happens. It upsets me thinking about losing my hair! I have had it cut short in preparation - did you take the plunge with a No2 Bazookas? I have a Headstrong appointment booked for 14th August for ideas on headwear. Also like Bazookas I have one injection 24 hrs after chemo. I was told it is to boost your WBC. It puzzles me that some of us are on FEC and have more/different injections.
Joyce11 - do you have a date for your next chemo after it was delayed, sometime this week hopefully.
Also, have any of you had full ANC? I had this on 1st June and I am struggling with cording. I am exercising my arm regularly but any tips would be appreciated.
Hope you are all having a good day.
xx
Thanks gals for the welcome.
Unfortunately Gaynor i have full on curry bum!..upset tummy today but know its the meds, think also causing bits to be a little more tender and fragile than usual…(sorry for graphics)…long lost tub of sudocrem looks to be the hero of the hour at the mo!.
Only taking paras and Nsaids so think woozyness is the chemo, but definitely going for cocodamol tonight for first time…awoke 0230hrs this morning in alot of pain, so really need a sleep thru…cutting down on ibuprofen due to tummy today.
Out in car today so is improving. though was in for MOT which cost me £160 this morning. Chill out afty…had done quick reccy around local outlet whilst was quiet this morning after dropping daughter off at work…getting there.
Have a restful evening all.
Hi Ros, I’m a week behind you - mastectomy and ANC on the 8th June and started FEC on 15th July. I had a thick cord from about half way along the wound through the middle of my armpit right down to my wrist which started about 3 weeks after the op and got worse until a week ago when it has almost gone somewhere in amongst the nausea and headaches post FEC - one positive at least! What I was doing was gently pushing it to the side with my thumb mid armpit when it was pulled tight - I found it easiest on the exercise where you lift your arm out to the side with your hand on your shoulder. I also massaged across the whole armpit on the walking up the wall to the front exercise. I have a feeling it was sth to do with the chemo that helped though. I talked to the Physio at 4.5 weeks post op and felt really fobbed off - just do what you can and don’t push into the pain too much was the advice but if I didn’t push into the pain, my range of movement reduced - so I just decided that I would hold the range of movement on a bad day and not let it get any worse. Spoke to the BCN today and she talked about massaging the cord and would have referred me to Physio if it had not improved - I suppose I’m now 7 weeks post op.
Having said all that, I’m not a Physio and it might be better to take advice than go on mine ?.
I hope all goes well for you tomorrow and let me know how the emend goes as I’m hoping for better nausea relief next time. Xx
Hi jky03, I hope you feel better soon - codeine is marvellous at bunging you up so it may well help, xx
To all you folk out there who have used the cold cap - need some advice. I used it for my first chemo and have lost about 70% of hair and now it has stopped coming out. Concerned about next time as there is very little hair to protect my scalp from the cold and think it will be painful?? Also will more hair come out after the next chemo?? What are your experiences? I have cancelled my next cold cap but now don’t know what to do!!
Hello Josie11 - thank you for the advice. I have now started massaging and continuing to stretch the cord and push through the stretch until it is no longer as painful. I was concerned about massaging as I was not sure if that would lead to lymphodema but I will try gentle massage. It feels as though I am going one step forward and two steps back with it. Had second chemo yesterday taking the Emend which has been really good as this time I have not been sick and only have slight nausea which I hope continues. Bit of advice re the Emend packet. Open the silver foil carefully as I “popped” mine out of the packet and it shot across the kitchen surface and little balls all over the floor. Fortunately the floor had been cleaned yesterday so I desperately tried salvaging as many as I could. Apparently someone else at the Hospital had an empty capsule too.
Hello Joyce11 - sorry to hear your first cold cap attempt has not been too successful. I wasn’t sure about using it for a second time but as the time draws nearer to the next chemo you forget how bad it was. I think if you have 30% of your hair left I would probably continue without as it could be very painful as your scalp will have no protection. Have you chosen a wig yet? I have got one in preparation and just booked a Headstrong appointment to be prepared for what lies ahead. Hope your chemo went ahead today after the delay.
Hugs xx
Hi Manicmum, thinking of you and I hope that you are feeling better for having vented here. I’ve just taken a strip of my boys for playing up - more my tiredness than them really so feel so guilty. I phoned the BCC helpline last week and that really helped - the lady was a nurse but she also talked about how I was feeling. I don’t know if you have a centre like Maggies near you - they have people to talk to and it is really good to be able to say how you are really feeling instead of putting on the face for family.
Take care and wishing you a good, pain free nights sleep, ?, xx
Morning Ladies,
Just looking for a bit of advice. I’m suffering with extreme bloating over the last week or so and am struggling to resolve it (look 6 months pregnant) I was just wondering if any of you have suffered with this and if it is a known SE of T. It’s really getting me down as its so uncomfortable, I have some pure aloe gel that I can drink but not sure if this is allowed ? Any ideas would be welcome . Oh I’m on a slightly different regime to most of you I’m on TC. Due my next one on Friday so would really like to get this under control before then otherwise I might pop!!!
Afternoon all,
have had problems signing in recently…all seems resolved now…obs.
So day 12 post T1…fogs lifting though dont yet feel fully with it, still bloated after eating but tummys much better and the pains now only minimal in my back + ribs and breathless…seemed to go on forever with SEs. Think its because FEC×3 wasnt too bad on reflection…and now T is probably what I assumed chemo effects were…still knocked the stuffing out of me…but hopefully now can enjoy this week before T2 next Tuesday.
Had hard week emotionally too…combined with SEs…mainly due to my sisters’ outburst out of the blue at me…cant seem to shake what she said after having complete fit when i was cleaning kitchen surfaces prior to making lunch (we all live in same house).“walking on eggshells around you”, “i work full time and got better things to do on my days off than clean”, “nothings good enough for you”…crap thing is ive had 4 cycles of chemo and not once has my mum or sister offered to help me with houseworkat all or taken me out for cuppa nor sat with me on my sofa confined days…literally avoiding me at all costs. Im hurt that they are discomforted by me. My hubby has spoken to her un beknown to me and yesterday she texted me to ask if i wanted to go out for coffee/shopping this week.
I dont…as think itll be along time till i can get over the way theyve treated me, but i will to try to ease things.
Sorry re the long post but just had to get it out there.
Hope all you ladies have had better week and have enjoyed the weekend.x
Hi Mazzi,
yeah went thru it all with everyone on diagnosis. Unfortunately as we all share the home i find it difficult to understand how they avoid me…but guess have to accept thats the way it is.
Now have to concentrate on me and getting thru next few cycles…just hope I can not let it affect us all too much in future, but i refuse to be made to feel guilty any more for having this crap disease.
Lets look forward to a good week before it all begins again.xx