Hi everyone
I had my first T yesterday… yay! I had it at last. Only 75%, with only 50% steroids…
They gave me chlorphenamine, also known as piriton, to take up to 3 times a day. I called to ask them which symptoms it helped with… nurse I spoke to didn’t know, but will get back to me.
So so far no achey legs or fatigue as it is only day 2, but my eyes are hurting a bit and I have a flushed face which is getting a bit hot and itchy…
any clues Ladies?
Thank you so much xxx
Georgie xx
HI Georgie,
The piriton is to stop allergic reactions.
Hi Georgie Gee, well done with the T. Can’t help with the flushed face bit, but CDC has had that with Paxitaxel, and hers seems to go after a couple of days, keep an eye on it though, and call that hotline if you are worried. Have you lost your eyelashes yet? I lost mine during T No. 2 and although my eyes didn’t sting, they have watered constantly since, it could be that? Watery eyes is a side effect of T. Again, ring that hotline if you are concerned.
Kip
Kip and Sally,
Thanks for your replies.
I called the bcc nurses and they said that itchy eyes (no eyelash loss yet…) and face flushing could be helped by piriton, so suggested I take one now (no driving) and one at bedtime, and then see whether it makes a difference. I did mention too that I was only on a half dose of steroids, so she said it sounded like a good idea because of that as well.
Also, Kip, when you had your knitted knocker (such a clever name aye?..) how did you size it? My bra cup size one side is what I would want for the flat side. Mastectomy not yet planned but like you, I don’t want all of the surgery for reconstruction etc.
Thanks
Georgie xx
Hi Georgie Gee - I LOVE MY KNITTED KNOCKERS! I now have a selection of them, my Mum knits them for me now but originally I got it from the Knitted Knockers website. My natural breasts were 36A, so I just opted for that size, the great thing about knitted knockers is they have a hole in the back with a draw string and come with some extra filling, so you can adjust them, put some more in, take some out to match your normal boob! I can’t remember if they just come in A cup, B cup etc, or whether you put 36, 34, 28 or whatever, bu tI know I just used my normal sizing and that works fine for me. Good luck with that, I have never had any problem being flat, just concentrate on getting better thats my motto!
Kip
x
Cheers Kip, that’s so helpful!!
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Wow you are clever Reddi, I have to get my Mum to knit them, she can do 1 a night! I want a swimming one next so will get her on the job! Not that I can swim yet!
Kip
x
Hi Cdc,
Bummer about the chemo . I have also had the feet thing, though not hands, but that’s partly chemo and partly diabetes. I find its bad for a day or 4 after chemo then settles by the time I have the next one…which I won’t cos I had my last one today 
Typically I slept through a significant portion of it. Now have a week and a bit off work to chill before I start hormones and drug trial.
georgie gee, visceral tears will help eyes while on t, a tip passed to us from may17 ladies when we started the t. CDC, the other one is abraxane, mishy18 went in that when she had reaction to t, I wimped out and took another fec for my last one after the reaction on my second t. Hope that helps. Lisa Marie, I was tattoo virgin too till the dots, hope you get good artist, I ended up with a dot like a current on the front they had a oppps moment, good job I like currents ?it’ll sound strange but further on when I see mine now, I look at it and all I see is the beautiful amazing friendships from all the amazing great ladies who are in my life now from these threads and Hope the same for you my darling ???
Shi xx
@cdc Abraxane is a form of paclitaxel. You’d have to check with your oncologist about whether it is different / different enough to the paclitaxel you’ve been receiving to try it. It may not be.
So sorry to hear that neuropathy has become a grave issue. The quality of life trade-off is huge if it becomes permanent. I know you are already thinking double mastectomy – is that a firmish plan? If chemo gets truncated, surgery is sooner, and you’ve already had 3xAC and half of the taxane regime – which is a lot of cytotoxins. I say go for the surgery sooner , and happily, if neuropathy might be a longterm complication. xoxo
@cdc Ah, just saw that you are meeting with the surgeon at the Marsden. Given her position, I am sure she will have good counsel on surgical options should chemo be truncated.
@Sally Congratulations on your last dose!
Cdc, sorry hear more delays witn the chemo but good that they are taking your foot issues seriously. You dont want to have permanent damage. Hope yoh get the gold standard treatment next!
I have been having a panic over my surgery and made the grave mistake of googljng about node involvement… wish j hadnt as i just scare myself. Has/is anyone else had or heard of anyone having just level 1 nodes removed? I know i i should be thankful they are just taking 1 level but i keep panicking about the rest. Also im worried by the fact that i had chemo inbetween my surgeries, is that normal, most ladies i found either had neoadjuvant chemo then surgery and clearance or clearance and surgery and then chemo… Im doing surgery chemo surgery rads? Im just gettjng myself worked up pre op j think but my head is in a whirl! I keep telling myself that they know what they are doing but im adding 2 and 2 and coming up with 5!! Im aIm also now stressing sb8ut the size of my lump which was 55mm… thats big! I think mh chemo fug is clearing sna suddenly my brain is in gear and scared!
Kip,
I don’t know what level my nodes were from the to but there were only 11 of them so unless I have very few of them it can’t have been all levels. My clinical letters don’t say though . I would imagine that where they take them from may depend on the position of the lump and theres no point taking them from an area where there’s no route from the cancer to thenodes. That thru just take ones connected to the lump area makes sense to me. I would also assume theres less chance of lymphodema if they only clear one level.
My cancer was spread over 110mm with 11cms in 6 lymph nodes but hadon’t spread outside the nodes so I’d not be overly concerned on that.
Kip ???please remember darling all our treatment journeys are specifically tailed to us as individuals, it’s easy to be ???it’s part of the journey and I know for us oct17 girls our new normal, because the slightest thing and we are all back at the doctors/hospital, ladies further along the journey have reassured us we will not go ??as the years go by which is lovely to know. Step away from the google, we’ve all done it and it send our brains ???our teams have seen this all before and will be chucking everything within their allowance at it and doing their very best for you and for all of us as they can 
Now pull those spare Oct 17 gold hot pants up girl, you are ???and are ?:female_sign:?:female_sign:?:female_sign:Kicking it’s ass ??Shi xx
Thanks girls, big gold pants being pulled up as we speak!
Hi Ladies, hope you all managed good weekends, CDC hope those feet are behaving, hows Numble today? Lisa Marie - how are you hands/arms? Hope they are improving and the last chemo can take place soon. KTK how are you feeling now, are the SEs fading?
Physically I’m feeling almost back to normal regarding the chemo bits and bobs, Tingle is still tingling but I think not quite so much, chemo fog has lifted, taste buds properly back now, just left with achy knees and joints etc, but even thats not quite so bad I think. Although every twinge I freak out and think “its spread”. Mentally I’m finding it hard at the moment, constantly thinking of the “what ifs”… I know this is becuase I have surgery tomorrow. I have spent the weekend worrying and wondering what the next set of results will bring…Have had big melt down this morning, those waterfalll tears again, which hadn’t really happened so badly since diagnosis and chemo began. OH gave me a talking to but in the end I rang my BCN to talk over some worries. So glad I did, I got straight through to her (a minor miracle at Ipswich) and we talked over the issues I had. I have been wondering why they never took the next lot of nodes out before chemo and she said they decided I would be better off having the chemo sooner as I am young and it would do a clean up job throughout my body and then have the nodes removed afterwards. They didn’t want to leave the chemo for another 4-5 weeks for me to heal from further surgery as this had the potential for rogue cells to move around. So that makes sense I guess. She also assured me that they are almost certain nothing will be left in the nodes as the chemo will have killed them off. If I was over 70 they would just use RADS as the effects of chemo are hard, especially on someone of that age so as I am young and have lots of years to to go they use the hardest treatment they can to ensure they give me the best chance. I also asked what Stage I am, as I have never been told and she said iin Ipswich they don’t tell you the stage, they don’t really use them, just Grades but I could find out if I want to… not sure if it will help me to know to be honest, another thing to worry about. She was very assuring and very kind and said “just remember you had a bone scan and a CT scan and they showed no problems” so I think that’s helped relieve some of the wobbles, I know the worries will return again and again, but nice to hear some positives. I think as the chemo fog lifts I am starting to realise how much I didn’t really take in from the Docs etc during that time so good to get some clarity. Now just got to remain calm for the operation tomorrow, hadn’t realised I would be so nervous again, nurse also confirmed I will have the dreaded drain again… eek! but that they will just reopen the end of my old scar and go in there, so at least I won’t have another scar to deal with. Just want tomorrow over with, am hoping I’m first on the list as hate sitting there waiting, just want to get home again and start the old exercises again.
Anyway ladies, thats my wobbles down in black and white (again!)… thanks for being there, just getting it out in the open really helps.
Take care all…
I’ll let you know how tomorrow goes…
Kip
xx
It’s good you got hold of your BCN straight away and managed to get some answers and reassurance. Good luck tomorrow. I’m sure you’ll be fine.
Morning ladies, have had to have a change of name! The forum admin email me to say I’m not supposed to use me real name. Ooophs ??♀️. Kip, I’m glad you got trough to your breast care nurse and put yourself at ease on some things, pre surgery wobbles are bound to happen, it a big thing and you have been through so much already. Is it complete node clearing your in for tomorrow? I only had sentinel nodes out when had my WLE as it was confirmed I was stage 1 ie localised to left breast. I understand the worries about all twinges, I am the same thinking everything is cancer being triple neg and BRCA 1. This is why I am determined to do the wedding ASAP as god knows if and when it will return and what surgery will be involved in the future . Hands and arms are ok, lots of tingling but it left leg and ankle that’s swelling and sore the most. Managed to get to watch the step sons football game at the weekend though and was a cracking game and he scored 2 goals! For a defender that’s brilliant. Also it was my anniversary so baked cornflake tart and very pink custard for the o/h with the step daughter. Radiation appointment Thursday for CT scan and tattoos then Friday oncology to see if last chemo gets the go ahead for Halloween ? xx
To right google is addictive I have been reading lots on my diagnosis, it’s my nature to try and understand all I can about it too. It’s all very scary and I think it’s the fear of the unknown that’s the worse. Although I must remember that everyone’s journey on the road is different although we are all traveling the road together, to the destination of being as far away from this as possible. Glad you have all twigged on the new name, yeah it’s my preferred tattoo Reddi. My thoughts will be will you tomorrow Kip and hopefully you won’t have to wait too long in the day. Like you say if traces were get them out, even though chemo should have nuked them away. Try to relax a little (easier said than done, I know) do something you enjoy and pamper yourself my lovely. You deserve it!xx