Hello, 

i was grade 2 invasive ductal carcinoma and mucinous, clear margins no lymph node involvement....my onco couldn't rule out rogue cells so wanted me to have a chemotherapy flush.....I just wanted to throw everything at this to help lower the risk of any future reoccurrence.....

good luck with it all, will e interesting to see what your onco advises ....xxxx

Hi,

What does a chemotherapy flush mean, is it an easier treatment to have? How did u get on with it? Any hair loss? This is the part I’m dreading,

Hope you are well, thank you xx

Hi LindaAG,

So sorry not rreplied and thank you so much for your message!  Such a brave choice you have made, and I know you are doing this to make sure your kids have a mum for a very long time...it's going to be worth it and that's how I'll be getting through it.  Just horrible being in this position, its a normal we definitely don't want.  But you will be fine, and fingers crossed you might get the reduced doses. 

This is a big story...apologies in advance and remember I know someone and have read loads of stories where ladies have just felt a bit yucky for a few days with no sickness at all. 

Thursday went great initially, cold cap was manageable (fine after 10 mins), receiving drugs was fine too.  Had anti-sickness prior to treatment by IV, however around 3-4 hrs later I became really really sick and this continued with less & less of a gap inbetween, so my husband called 24hr helpline and they said i should be seen at local A & E.  They were really thorough as my blood levels inidicated infection (they thought it was in my brain as my head was so sore...yikes) but also said it could be caused by severe sickness, so they gave me anti-biotics just in case.  Anyway I had CT scan in middle of ngt and all was clear, so I was given morphine and anti-sickness, stayed in hospital 2 ngts to stop the sickness and my blood went back to normal. 

Feeling really well now, just a bit tired and like I've had a bad hangover.  Totally dreading the next one, but we just need to push ahead, we can totally do this....6 horrendous hangovers and it'll all be over!

What a bummer about the cold cap....is there any alternative place you can get your treatment where you have the option to have it?  I had 2 options where I could get treatment, one was a bit further away but they didn't mind me going to either.  My scalp is a bit tingly/itchy right now, which doesn't feel good as I think that's what happens before it all comes away, but will keep you posted!

big hugs and stay positive getting on with everything, will keep in touch

xxx

Hi [@een39]‍ 

Great to hear from you and have thinking about you and hoping all was well. What an eventful first cycle, can’t believe how quickly it took for an infection to take hold! Is there a chance the bad headache was maybe caused by the cold cap? Read it can bring on migraines. Brilliant you found it fairly bearable too!

Re the tingly scalp, I didn’t think loss of hair would occur so quickly, supposed to be around day 19 or so hopefully it is just after affects from the cold cap itself, did the nurse give you any info on it?

My oncologist seemed to be a bit dismissive of cold capping so didn’t suggest alternative hospitals unfortunately so have gave up on that idea now which is a shame. But fingers crossed it works well for u, so many success stories out there so stay positive!

I called the hospital yesterday to check if any confirmation on number of cycles planned for me, have been told 4 but not sure what type just yet. Hair now cut up to shoulders, brows done, wig ordered etc (had been dreading going but lady looking after me was brilliant, so funny but also really understood how difficult it was being there too) so I’m feeling more organised now. 

So pleased you are over the first cycle now and feeling much better, hope you can get back to some normality between now and round 2. 

Keep in touch and take care of yourself, will let you know how I get on in 2 wks time.. 

big hugs xx

Hiya LindaAG,

That's great its 4 cycles, this is going to be over before you know it and then we will have peace of mind we have blasted it and any residual cells!

My hair is still there, so could be paranoid about tingling hahaha - I usually wash my hair everyday as quite oily so maybe that and the dry shampoo is annyoying my scalp.....fingers crossed it just thins.

I think I had a migrane (i get them every couple of months) and you are right maybe brought on from the cold cap or the sickness.  The great news is I'm feeling mostly normal, so if the inbetween bits are like this everytime then that will be manageable.

That's great you've got your eyebrows and wig sorted....this will help so much to feel and look less ill, any bit of control we can get! 

My only complaint at the moment is I can't drink tea...it tastes funny to me now and I used to drink quite a few cups a day!!! Enjoy the next couple of weeks and keep yourself well and strong....take care and speak soon xxx

Hi LindaAG,

Been thinking about you today, hope your first round went well and you are home and feeling well!

Great to get the first one out of the way and one checked off the list. 

I’ve bought travel sickness bands and hospital are giving me a antisickness patch tomorrow before my next one on Thursday....got everything crossed the sickness isn’t as bad and that you are managing it ok!

take care xxx

Hi [@een39]‍ 

Have been wondering how you have been getting on too, how did you find the past few weeks? Did the tiredness ease for you?  And do you think the cold cap is working for you??

Yesterday wasn’t too bad, they struggled to get the line in and needed an ultrasound on the 5th attempt which thankfully worked! But they are referring me for a Picc line for next time as most likely will get more tricky each time. So I’m on AC chemo, A being one of the most powerful I’ve read and nicknamed the Red Devil lol .. They said I was getting plenty of them both, oncooogist said it was less harsh on the heart but just as effective as others. Slept well considering steroids given late in day just had a headache by the time I went to bed. Today just feel tired, bit headachy and groggy, but so far so good. Once steroids finish tomorrow evening might find side effects get a bit worse, so we will see..

Were you bad with sickness? Travel bands a great idea, hope they work well for you. Hope tomorrow is less dramatic for you and you cope well with round two. After tomorrow you are almost half way there! :-)

Take care, big hugs for tomorrow!

linda  xx

Hi Linda,

thats fantastic I’m so pleased for you that it’s went well...PicC line sounds like great idea, no point messing about if a bit tricky first time! Oh man the Red Devil hee hee...but that devil will be sorting out any wee stray cells (if there was any)! Not heard for the AC regimen but there are just so many aren’t there! Is it still only 4 rounds you need with this? Mine is still 6 rounds of FEC80 -the nurse says this is quite a low dose because I’m low risk!  Wish I understood all the regimens and how they come to these decisions etc. Just need to trust as they are the experts.

Got everything crossed for u that your symptoms will be manageable! It really was fine for me, I’ve been a bit more tired than usual but honestly only a couple of days that I actually had to take it easy, apart from that I’ve been pretty good! Some diarrhoea for about a week but not horrendous and bit of joint pain but ibuprofen sorted that! 

my hair has thinned but it’s still there, although it’s horrible greasy as I’ve not been washing it (only once per week) but really just waiting on waking up bald ‍ will you defo lose your hair with the AC regimen?

anyway will keep in touch, so happy you’ve started on this, one less to do necessary but we will be done and dusted on this stage at least by Christmas !

take care xxx

Hiya,

Great things have been fairly easy for you these past few weeks!  And they did say you would know by the first session if the cold cap would work for you so that’s super!. Don’t think you need to fear waking up bald, hopefully they will reassure you tomorrow on this. Read you just need to be careful that the hair is soaking wet all over to avoid patches. Greasy hair in the meantime will be well worth it but know what u mean, hate that feeling too lol.

 For me yes it’s inevitable mine will go, day 14 seems to be D day for it. But good chance I’ll keep eyebrows and lashes though  will be delighted if I do! First head scarve came today, hair piece arrived at the shop but they will cut and colour it anyway I want so think I’m going tomorrow if I’m feeling the same as today, actually out cutting the grass tonight and walked the dog with my son just can’t shake the headache but it’s bearable enough. Just going to take each day at a time..

And yes roll on Christmas for this part to be over :-)

Very best of luck for tomorrow, let me know how you get on when yr feeling up to it, 

Big Hugs xxx

Hi Linda,

I'm new to this site and have been reading your posts. I was diagnosed in March with grade 3 invasive. I had a lumpectomy 2 weeks later at the beginning of April. It hadn't spread to the lymph nodes but because there could be rogue cells my oncologist advised I would need chemo, radiotherapy and endocrine therapy . I started chemo on 20th May, 3 cycles of EC every 21 days and I am now on weekly Paclitaxel (18 weeks in total) so only 3 weekly sessions to go. I tried the cold cap but only lasted 5 minutes when I started with severe migraine so I asked for it to be removed.  I started to lose my hair before my 2nd cycle so my daughter shaved my head. Best decision I made, no more lumps of hair falling out which was distressing. I tolerated EC fairly well but needed to sleep most afternoons and sometimes felt generally unwell. Not felt as good on Paclitaxel, getting severe headaches, bone pain and some days just want to rest on the sofa but on the whole have been far better than I was expecting. My eyebrows and eyelashes are very thin now but my hair is starting to grow back even though I'm still having treatment (a fine white downy covering). I'm 65 , my oncologist is giving me every treatment available to give me the best chance of survival . This year has been a blur but treatment seems to be going quickly and you will get through it too. Roll on next year, hopefully a healthy one!. Good luck with the rest of your treatment. Hope all goes well.  

Denise. X

Hi Denise,

Lovely to hear from you, you have been through quite a journey up to now. So pleased you are on your last few weeks of your Pacilatel especially since it seems to be that bit tougher to endure. 

Early days for me but only getting 4 cycles which I’m happy about.. so far it’s been manageable but now that steroids are done I’m wondering if things will go downhill from here, hopefully not!

Great your hair growing back already and sounds like your brows and lashes holding on there too! I’m hoping mine don’t go will be some consolation since my head hair almost definitely will. I would have loved to have had the opportunity to try the coldcapping but like yourself would have had migraines from time to time so probably will have had to stop too.

Wishing you the very best for your remaining treatment, do keep in touch. Radiotherapy isn’t so bad in comparison, my dad has had it a few times and found it ok, just tiring more than anything.

Take care Denise,

Linda xx

Hiya,

Just checking in to say hi!!! Hope you are still doing well after your 1st chemo and getting out and about with your kids and dog :)  That's amazing you have a wig shop that can colour it to suit...mine didn't have that option, that will make all the difference and hopefully you will feel more like you when you need it.

I survived the 2nd one much better no hospital admission but was still sick (but manageable at home).  I've felt so so tired this time around however, so just taking is very easy and got out the house today for first time which was fab!

Not sure how much longer I'll get away without hair! Tried my wig on this mrn again and it really is much nicer than my hair however so paranoid I'll look like I'm wearing a wig....but don't think i'll go out otherwise so will need to just suck it up!

sending lots of best wishes and look forward to hearing you are well xxxx

Hiya,

Just checking in to say hi!!! Hope you are still doing well after your 1st chemo and getting out and about with your kids and dog :)  That's amazing you have a wig shop that can colour it to suit...mine didn't have that option, that will make all the difference and hopefully you will feel more like you when you need it.

I survived the 2nd one much better no hospital admission but was still sick (but manageable at home).  I've felt so so tired this time around however, so just taking is very easy and got out the house today for first time which was fab!

Not sure how much longer I'll get away without hair! Tried my wig on this mrn again and it really is much nicer than my hair however so paranoid I'll look like I'm wearing a wig....but don't think i'll go out otherwise so will need to just suck it up!

sending lots of best wishes and look forward to hearing you are well xxxx

Morning!

Glad to hear yr second round was less eventful for you, had been hoping you were doing ok . You mention yr hair, have you lost much, are you still cold capping?

Well things did go downhill for me once the steroids finished! Only way I can describe it is being totally floored! Started to feel really weak and fragile on the Friday had went into town to collect the wig and had to go straight to bed when I got home and didn’t surface until Sunday evening. Wasn’t in pain but the nausea and zero energy and just feeling unwell was awful.  Gradually over the course of the week some energy returned then had a migraine Friday and Saturday, so pleased I’m feeling fairly ok today.

I was supposed to go to hospital on Monday there to have the Picc line inserted but hubby got appointment put bk as I was in no shape to go anywhere on Monday. It’s now planned for morning of second cycle on the 17th. Dreading what next week brings re hair loss, scalp was a bit tingly part of last week but settled again, think this will be the hardest part for me ️

We each have one more cycle then we are half way there! I had read somewhere that the first was the worst re side effects then it gets a bit easier from there but the tiredness can take a long time to recover from. But we will get through it!

Hope you continue to feel well and can get out and about as much as possible, I’ve found it really helps mentally to get out of the house for a while even if we have to have a nap as soon as we are back home lol..

Take care & chat soon xx