Hiya LindaAG,

Aww that's a shame you missed that appointment, but great you've got another so quick!  Thanks for tips, we need all the help we can get, I'll order the nail stuff and take hot drinks etc.  I'm determined I'm going to stick out the cold cap....the oncology ward manager said that I would know pretty much if its going to work after the first session!  He said we need to wear it for 30 mins before, then about 1.5 hours for meds and the a further 1.5 hours after.  I spoke to the lady having the cold cap...she had had her meds and was doing the last 1.5 hours....she said it wasn't too bad and tolerable (so fingers crossed)!!!!

Just had an echo heart scan to get a baseline on how my heart is before treatment, think that's if you have heart trouble during treatment they can compare it and see any damage.

BTW those wig websites I mentioned are scams so don't order from there.  I noticed the exact same pic on a geniune wig store (that i'll be visiting tomorrow).  It was £890 in the store and £140 on urhair.co.uk...anyway I googled a bit more and apparently there is a big wig scam, essentially chinese companies pretending to be in the UK and sending horrendous wigs (joke shop quality).

The oncology ward manager said I was lower risk with a score of 21 (same for you at 25) and said that's probably why I wouldn't be getting the T part of the chemo - but he wasn't completely sure. He actually thought she made a mistake missing it out, so need to ask about that.  But the oncologist and BC nurse were very much 'pushing' for chemo....there was defo no mention of choice, they were very clear that grade 3 is fast growing and whilst they were confident it hadn't spread (small and -ve nodes) this is a step worth taking when under 50 so it doesn't recur.  Which I know is a big fear for us all.

I was thinking the same about these Oncotype scores, at 21 I'm a 6.5% benefit, but if I had score 20 I would have been 1.6% benefit.....I find this different so massive with one point that I would still have wanted to throw everything at it (just as you mentioned, I want to do everything now and never have to deal with it again).

I'll keep you posted on how it goes and will look forward to hearing how you are too!  Let me know when you start your chemo, and sending lots of positive wishes these cold caps do the trick!!

big hugs, xxx

Hi [@een39]‍ 

Just wanted to wish you good luck for tomorrow, hope yr feeling ok , you will sail through it I’m sure!

Had my oncologist appointment today, bit of a curveball, she said since my test score indicated low benefit from chemo she was leaving the decision up to me. Really didn’t expect this!  Also cold capping wasnt available at this hospital ( in Belfast), so disappointed about this. When asked if I didn’t have the chemo but it came back would it be available to me then, she said if it came bk elsewhere (not the breast) they would not be able to fully remove it and chemo would be given to manage it only, not what you want to hear.

So it’s booked for the 27th and like yourself an echo beforehand. FEC-T x6 ( the dreaded T) but then she said there was a chance I could get 4 lesser toxic cycles as some low benefit women in England have been given this, but won’t know until the first day.

My head all over the place now but think I would be selfish/ foolish not to take the chemo. Just didn’t expect this from today.

But anyway good luck for tomorrow, will be good to get the first one out of the way! Please let me know how u get on , best of luck with the cold cap too.. 

Take Care 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

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