Hi rosa1, I am really feeling so sorry for you at the moment as I was in hospital for a week at the beginning of this year with pneumonia and it really is horrid. You will probably feel extra tired when you return home so please do try to take things as easy as you can. Thinking of you and wishing you and all you other lovely ladies well. Take care.
Sunshine21
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1 week after having dose 2 of paclitaxil and despite reassurances that it would be less harsh than EC, sadly thatās not been the case for me and I have felt rough now for weeks. Aching from the waste down (lasting about a week post treatment), nosebleeds, pins and needles and sore feet.
Tonight though Iāve got a really sore and swollen hand, the one where all of my cannulas have been sited. Pinkie keeps cramping and is now constantly sore. Iām really not sure if I should be worried about this (vein damage) and should I phone the out of hours number or wait until Monday and call the local unit. Help please! Iām being completely indecisive! 
Thinking of all you fellow warriors x
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This sounds like an absolute nightmare. I agree with you 100%, it seems so dangerous to put people on wards who have low immunity on wards that have COVID on. Im so scared to go out anywhere at the moment due to covid being rife in my area.
Just wanted to give you some reassurance (maybe?). I have TNBC and I have not been offered immunotherapy or been on it for the whole of my treatment, Ive only had chemotherapy. So please try not to worry too much about the impact it might have if you have to stop it.
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If its causing you discomfort, phone the out of hours service just to be safe. Better to be safe than sorry! Hopefully they can offer you some advice 
As for the paclitaxel, i am sorry you are still feeling ill! I have suffered nose bleeds since starting it and aches and pains which normally start around day 3 but wasnt sure if these were down to the injections. Please speak to your oncologist about the pins and needles as they may need to lower your dose x
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Thanks @glitteryrainbow. Iāll give them a call. I did mention the pins and needles and they just said keep an eye on it. Iām never sure how bad things need to be before seeking advice from out of hours! Last time I called them I felt like a nuisance 
but then did end up in hospital with a chest infection so felt validated!
I had the aches a few days after my injection on the EC regime but nothing like on the Paclitaxil. Fortunately I was prepared with pain relief for the 2nd cycle so got on top of it quicker this time.
Only 2 more to go and I really donāt want to extend it, but obviously would if advised to.
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You are never a nuisance! We have to put ourselves first right now. Ive got slight numbness in my fingers but they arent concerned about it right now.
Youve got this! 
@glitteryrainbow Thank you for those words needed to hear them.I think immunotherapy is being spoken about the new wonder treatment for tnbc, like you said not everyone has it and still goes through treatment 
@Rosa1 Sorry to hear you are poorly,im wishing you a speedy recovery
@Lepw1705 That sounds sore,as Glitteryrainbow said i would definitely ring to ask advice.Donāt ever feel you are a nuisance.Hope you feel better soonā¤ļø
Sorry to hear about the hospital trips and admissions. Hope @budsbails2301 and @rosa1 are starting to feel better.
@lepw1705 did you call them? How are you doing?
@glitteryrainbow I totally get you on the hot sweats. My goodness, I have had a few but since the third round i have had them a lot. Iām constantly hot all through the night, especially in this weather. Throwing my leg out the sheets and sleeping half in and half out in an attempt to regulate my temperature. Triggered by eating, drinking and my kids stressing me out I think. I bought one of those super-duper hand fans from Amazon that all the Olympians seem to have and it does the job for now. I had a proper period on my first round of chemo, then a two week period about two weeks after than and nothing since. At 45 I reckon I was heading into the menopause anyway, herceptin affects it as will tamoxifen so Iāll see how I go. Good luck with the house move x
Iām starting to feel a bit better today post chemo on weds which did go ahead. Iām also noticing some hair regrowth on my head - fluffy grey duck fluff but still hair - made me super excited.
Keep going folks x
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I hope youāve been able to phone the out of hours and got an answer to your issues.
If youāre on Docetaxel or Paclitaxel they a cause peripheral neuropathy which can cause tingling, numbness and other symptoms and your team need to know.
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Iām starting to feel a bit better. Hopefully I can go home tomorrow.
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Hi.
Im really late in the door here. I started chemo on 29th april but looking at april threads it seems that end of monthers join next monthā¦ so here i am if youll have me!
Ive inflammatory breast cancer, hence username 
, triple positive. Im in Ireland so might be subtle differences but overall course of treatment is 6 docetaxel and carboplatin every three weeks with pertuzumab and herceptin. Then a further 11 cycles of subcutaneous herceptin every three weeks. Im having mastectomy and axillary lymph node clearance after the chemo, and 8 weeks after surgery a month of radiotherapy. Then some form of hormone treatment after. Kadcyla has been mentioned if margins not clear, but living in hope for now.
So im two weeks into my fourth cycle and its kicking my arse. Fatigue, endless nausea, dodgy bowels. Eating a lot of carbs. My dose was reduced after first cycle as i had a lot of uncontrolled diarrheoa. This is the first cycle (no 4) ive had actual vomiting on. Number 3 was delayed by 3 weeks when i got covid 
. I normally get a good week before it all kicks off again, but thats 9 days away and im still quite ropey.
Physically i can cope day to day. Mentally im dreading the next two cycles. I really rely on those āgood daysā to keep me going, and it looks like its gonna be a very short window this run.
Things that have helped me so far.
Ayr for my nose (hard to get, try amazon).
Probiotics with oncologist permission -optibac s bouliardi was recommended to me for loose bowels.
Taking immodium when i get cramps rather than waiting for diarrheoaā¦ and not stopping it until ive had normal bowel movement.
A gel mat at night for hot flushes.
Wearing roomy trainers for exercise, my nailbeds are bit unstable too.
Im now taking chlorophenicol at night prophylaxtically as ive had blepharitis twice, prob due to eyelash loss.
I def need to be on proton pump inhibitor and take fair wallop of gaviscon for most of cycle and not just around chemo days. In fact, most of my meds were originally prescribed for shorter duration than i ended up needing, its okay to challenge this.
Anyway, i think im going to need some venting buddies to get me through the next 6 to 7 weeks 
. And thats only the first bit! Thanks in advance.
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Hi @jaffaboob welcome to the May chemo group. I started my chemo on 3rd May so very similar timeframe to you. I started with 4 cycles of EC every 3 weeks and am now on paclitaxel weekly for 12 weeks with phesgo injections every 3 weeks. Iāve got my 2nd paclitaxel later today. The EC was really tough, about 10 days of feeling tired, disgusting taste in my mouth and messed up stomach/bowels. So far paclitaxel has been easier as I havenāt been tired or had taste issues but my stomach isnāt right and Iāve had some random aching in my joints. I only have to have 3 filgastrim injections now but Iām starting to suspect they might be the cause of a lot of my discomfort and Iām starting to hate them even more.
Iāve had a lot of trouble sleeping over the last 2 weeks - probably a combination of the hot weather and hot flushes. I donāt get any steroids to take at home anymore, only a dose in the drip before chemo so I canāt blame them. Not really sure what is going on with my body to be honest.
Sorry to hear youāve been in hospital @rosa1 and @budsbails2301 and everyone else who has been suffering horrible side effects.
Thinking of you all going through this.
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Thanks @dragonk. Iām on Lipegfilgrastim (lonquex). They gave me Mefenamic acid (ponstan) to take 3 times daily for pain and tramadol hydrichloride as back up. Essentially was described to me as bone marrow pain. Worst in my pelvis, femur and tibia. Again these were meds prescribed for 3 days but i comfortably need them for 5, starting eve of injection before tapering. This is the easiest of my symptons to control. I know from trying to brave it out how bad it can be without them. I only needed the ponstan this cycle, maybe took one tramadol one night only, but i took the full whack of postan and honestly, i had no bone pain. Still felt crappy everywhere else 
but small wins. Hopefully you get sorted.
Im going to speak to my oncologist about the sweats just to see what she suggests as I cant get a restful night sleep as Im constantly battling with the covers. I didnt think I would be experiencing menopausal symptoms at the age of 28 but here we are! I have a desk top fan that I have on all night which does help a lot!
Super exciting about your hair growing back!! I have the grey duck hair too, but only on my armpits lol 
. Im still yet to loose all my head hair, Ive got quite a lot of it still going but everywhere else fell out weeks ago.
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Hi everyone, just catching up.
@rosa1 how are you feeling, any news on getting home? Also do you mind me asking when youāre due to give birth? Feel free not to answer that xxx
@budsbails2301 how are you feeling? I had the same thought when I was admitted, just sitting in not much more than a waiting area with who knows what floating round in the air for 39 hours was quite scary.
@jaffaboob welcome, sounds like youāre going through it with everything, but also like youāre very in control and on top of everything.
@lepw1705 did you call and get sorted?
@snoop182, hair growth? Fantastic! Iām still sporting a very bald spot on top of my head but hanging on to enough hair to disguise it.
Iāve got a bit of a scare at the moment, Iāve possibly found a new lump on the same bad boob. Iām getting it looked at tomorrow but absolutely terrified. My head keeps flicking from the fact its probably nothing as Iām on chemo, to itās a new cancer thats growing and not responding to chemo.
I hate the fact Iām going to be a hypochondriac for the rest of my life!
If anyone has good news please share xx
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@tori123 Iām hoping I can go home today. Iām now on oral antibiotics which is good. They may try and give me an iron infusion as my haemoglobin was very low. My due date is end of September but the obstetrician wants to induce me around 37 weeks which is the first week of September.
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Im sure it is nothing but glad you are getting it checked as soon as possible. Im sure that all the chemo is working and its just a cyst or something like that. I have everything crossed for you, please keep us updated!
Dont worry, I think everyone will be a hypochondriac now! Bit like this morning I woke up feeling hot, took my temperature and it was 36.9, so Iām checking it every hour to see if it goes up feel absolutely fine in myself though! Just warm.
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Saw my oncologist yesterday, spoke about the hot flushes and he just said āwe are so close to finishing chemotherapy, I dont want to give you anymore medicationā. Feel really frustrated by this because Im really struggling with them at the moment and i feel like we arent close at all . I understand what hes saying though and i never argue with professionals so just kind of took it on the chin. It felt really weird as most of the appointment was speaking about after chemotherapy which hasnt been the case so far!
He then scared the living sh** out of me, by saying if we dont get a clear margin from the operation, i will be put on chemo tablets. He did say its rare but has to prepare me just incase. He then said i will have radiotherapy which could be 5 days or 3 weeks depending on the margin. I kept it together at the appointment but when I got home, i cried my eyes out at the thought of more chemo, radiotherapy (radio wasnt on my original treatment plan) and being off work for even longer (im going sloowwwlllyyy insane). Trying to think positively as it was a really positive appointment but just feel really scared again, almost like im back at the start of treatment!
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Thank you, Iāve been a little obsessed with my temperature in this heat as well!
Itās just soul destroying when they ādropā extra treatment on you. I had so much of that at the start of my journey I just assume the worst case scenario now. If it helps, almost everything Iāve heard about radiotherapy is that itās a walk in the park compared to chemotherapy and if they say its unlikely not to get clear margins, hold on to thst thought x
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Hi @tori123 im on the mend thank youā¤ļø still quite tired but better than i have been.Ive got an appt on Fri with my oncologist to speak about a plan going forward.I should have been finishing Cycle 4 Thurs but it has been put on hold for me to recover.So far out of 12 weekly abraxane i have had 8 due to being unwell.I would be due to start 4 cycles of EC from the 15th Aug so not sure if they will go straight into that now.Theg are still thinking its the filgrastim injections causing all my problems, so has been mentioned about a reduction in chemotherapy dose.Will know on Fri hopefully. @glitteryrainbow I feel your pain with the night sweats,mine are crazy.I was in HRT prior to diagnosis and have been menopausal for 2 years now.I dont know how much the sweats are chemotherapy or coming off HRT.My oncologist offered me an anti-depressant as these help with flushes.To be honest when i read the side effects i thought i will persevere until Oct when Chemotherapy finishes and see how i am then xx
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