Hi - had a pretty rough day today after the Red Devil yesterday! So hope tomorrow will be better xx
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Hi everyone, Iām starting chemo this Monday, the 18th. I have invasive breast cancer that has spread to the lymphnodes but nowhere else thankfully. HER2+, Eostrogen+ and Progesterone+. New to all the lingo, but think that about covers it! Having two lots of 4 cycles of chemo and then mastectomy, followed by more treatment that I havenāt absorbed mentally yet. Iāve just had my eyebrows microbladed in preparation. Canāt face the cold cap on top of everything else, and I dont have a public facing job or young children (they are 23, 18 and 16). Iām āokā about the hair loss but the eyebrows part tipped me over the edge! Iām thinking at least its winter and I love a beenie hat regardless! Trying to be positive but am a little scared about the chemo as I hate hate hate being ill - something to do with loss of control I think. Zero control right now!
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@kimmy4 Oh no 
Have they given you plenty of meds ? Donāt hesitate to ring the number on your red card if side effects are too much xx
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@rfg welcome 
Iām starting mine a week this Friday , pretty scared too ! Iāve had a mastectomy already . Do you know what chemo you are having ? It all seems a lot to take on board doesnāt it ā¦. I found it best to just look at getting through each type of treatment anc not thinking too far ahead xx
Iām not cold capping either ā¦ I just couldnāt be bothered with it 
There is a her2 thread if you want to join that too x
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Hi @arty1 Iām having EC (which I understand to be Epirubiicin and Cyclophosphamide) every 2 weeks for 4 cycles, then PHESGO (which they tell me is Pertuzamab, Trastuzumab and Docetaxel) every 3 weeks for 4 cycles.
Thanks for the advise about joining a HER2 thread (I think that was you!). I will do that! Iām surviving on a very fine balance of ignorance is bliss and needing to know EVERYTHING! Only just finally made a note of the actual cocktail of drugs Iām gettingā¦
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I can imagine that those of you who have had surgery first must be dreading the chemo so much more as you have already been ābatteredā so much!!! I feel like that (hence not wanting the cold cap) just from having all the biopsies - jeez the one that was mamogram guided was not lovely - so goodness knows how you feel if youve had surgery already.
@rfg yes it was me that linked to the her2 thread x itās been a godsend for me since I was diagnosed x
Iām having herceptin for a year after chemo and trying to view those future injections as just a minor inconvenience!
If itās any consolation I was in less pain after my mastectomy that I was after all the biopsies ā¦ the mammogram ones are the devils work !
They usually inject pain blockers into the chest wall while still in theatre and I was given fentanyl when I first woke up and was away with the fairies 
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Is anyone going into chemo with an ongoing seroma? I developed one after my axillary clearance three weeks ago, and Iām going to have it drained for the third time today. Itās so big that it has reopened the wound, and Iām concerned about the infection risk; even if the wound heals again before chemo thereās no guarantee that the seroma wonāt refill and cause the same issue.
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@flower5 I do have a seroma but it doesnāt sound as nasty as yours , I had an infection in it about two weeks after surgery but itās been fine since then apart from just being annoying . I think you need to speak to your oncologist about that or ask to speak to the breast nurse ?
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Hi!! Iāve only just seen your message!! Iām having chemo first then surgeryā¦ā¦ so x4 lots like you!! also HER2 hormone positive!! I started my first round of chemo last Thursday (7th)ā¦ā¦ I was so so nervous like you but also tried to think of it as a positive, I know itās hard but it helped to go in with confidence and not dwell on side effects.
So itās been a week now since Iāve had my first treatment and although everyone deals with it differently, Iāve been on the whole 95% fine. I havenāt cold capped either, as didnāt want any unnecessary side effects, like headaches. So Iām going to call the wig place tomorrow and book an appointment!! Iām 38 and I love my hair. Itās my comfort blanket if you like, so it will be so hard when I lose it but itās only temporary andddddd itās winter time and Iām also off work while on treatment (as I work in retail) so I wonāt have to go out much, apart from walks!! Caps and hats for me (and wigs, hopefully).
I just didnāt know what to expect at all with chemo, definitely the fear of the unknown but youāll be absolutely fine!! just drink LOADS of water the day before and day of, and then try your best to keep up drinking lots to flush the chemo out as much as possible!! youāll feel better for it. Take snacks to your treatment and something to do too, as it can get a bit boring.
Message me whenever you like if you want to know anything?! not sure I can help but Iām always hereā„ļø and definitely call number on red card with any symptom, even if itās minor as they have so much medicine that can help with side effects!! I called about my acid reflux!! they couldnāt have been more helpful.
Sending so much love and luck for your first day!! Xxxxxxxxx
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When I went in tonight they confirmed it was infected so Iām in for a delay to my portacath surgery and chemo, both of which were scheduled for next week. I might end up being a December starter!
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@flower5 oh no thatās so frustrating 
have they given you antibiotics?
Better to get rid of this infection first but understand you donāt want a delay . 
Yes, Iāve already had two lots because infection was suspected, but they donāt seem to have helped, so now sampling another! The delay is frustrating, but I donāt feel well, so it is probably in my best interests!
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Hi rfg
I think you have hit the nail on the head with not having control
Itās a key thing to get your mind around . Getting the microblading done is something you have taken control on , your brows will look fab !
Wishing you all the best for Monday but more for the time to follow . Small steps but each step closer eradicating BC - Iāll be thinking of you
My second cycle commences on the 25th and Iām hoping to enjoy next week .
Big hugs to you xx
Sorry to hear that flower5 hoping they can sort this out quickly so you can get your treatment started xx
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Hi all, Iāve just been scrolling through. I am due to start chemo on 22nd November 3 x EC followed by 3 x doc. I am absolutely petrified.
I was diagnosed with stage 3, grade 2 ER+, HER2- in August this year. I had a left side mastectomy and auxiliary lymph node clearance- 4 out of 17 nodes cancerous.
I met my oncologist over two weeks ago and was offered the Optima trial. The trial means the small possibility of avoiding chemo (depending on if Iām tested and what the results were). Iām so scared of chemo. The oncologist says that there is only a 5% chance chemo will help me. I have spent the last couple of weeks in turmoil, wondering if I should take the trial. There is a high chance in the trial that chemo would be given but I was so tempted to enter it, with the hope of avoiding it. Then I got scared re stray cells and this week I told them I would just go straight to chemo. I am absolutely dreading it. Iām so scared of vomiting and Iām really struggling with the thought of losing my hair as Iāve read it can take so long to regrow. I keep second guessing my decision!
Anyway, Iām due to start next Friday and I wanted to link in with all of you. Sending so much love and hope you are all getting through xo
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@sam3 Interestingly Iāve got exactly the same diagnosis, even the same number of positive nodes, but I wasnāt offered Optima and chemo was strongly recommended. I do know the benefit of chemo depends on whether you are pre or post menopausal, so perhaps this was a factor, though I am old enough for Optima. Iāve got a friend a few months ahead of me on the same chemo regime and she said that nausea has been really well controlled with medication, for the EC her worst side effect was fatigue. Iām planning to cold cap to try and hold onto my hair or at least speed up regrowth.
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Hi, thank you for your reply 
Iām 47 and premenopausal. My oncologist seems all for the trial but I have struggled to get straight answers about things. I was querying my pathology a couple of days ago as I mulled over the decision and I was a bit miffed that my oncologist seemed to not have looked in great detail at my pathology, that worried me. Iāve chatted to others who say their oncologist was leaning toward chemo. I think thatās what has swayed me. I really am terrified. The other crap thing is that my hospital (Belfast) donāt offer the cold cap at all so itās not even something I can try.
Iāve been sat tonight trying to research things to help hair grow after chemo but Iām going in circles! Iām awful with nausea/vomiting so I really do hope they can control it. How far are you in?
X
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@sam3 Iām 42 so we really should be getting similar messages from our oncologists. Have a read of the RxPonder trial, this is what my oncologist referenced when he told me to have chemo, it shows a 5% increase in invasive disease free survival for premenopausal women who have chemo compared to premenopausal women who donāt. For what itās worth, I think you have made the right choice. I am scheduled to start on the 20th, but expecting a delay due to infected seroma. I canāt believe they canāt offer you scalp cooling in Belfast, I thought it was a standard. x
Hi Sam
I have popped on from the October chemo starters thread. I am 43 so pre menopausal I was diagnosed on the 18th June with grade 2 invasive ductal ER/PR positive & HER2 negative. I had a right side lumpectomy with bi-lateral breast reduction & sentinel node biopsy. They removed a 25mm tumour with good clear margins & no nodes were involved. They did say that I had LVI present (lymphovascular invasion) which means that the cancer cells were in the blood supply to the tumour. I had my sample sent off for oncotype DX testing & I came back with an oncotype score of 25 which meant I would benefit from chemotherapy. They say that for my age anything 16-25 that chemo would be of benefit to mop up any microscopic cells that may have escaped.
Iām suprised that your oncologist has suggested that you may not benefit from chemotherapy especially being stage 3 as chemo works really well on faster spreading cancer cells. Also the fact you had lymph node involvement I would have thought that they would also have suggested chemo as a belts & braces so I think you are making the right decision.
Iām having 6 cycles in total. Iām having 3 rounds of EC followed by 3 Docetaxel. I had my 1st round of EC on the 24th October & had my 2nd round yesterday. Try not to be scared I think the worst thing has been the fatigue & some heartburn. The anti sickness meds have been great & I feel the steroids also work with helping the nausea. I did cold cap for my 1st treatment but started shedding my hair after day 17 & had lost quite a lot by day 20 so I decided to brave the shave & im not cold capping going forward. My hair was long down the middle of my back but I had it cut to shoulder length before treatment so itās a bit of a shock having no hair but Iām looking at it as temporary.
Really hope your treatment goes well. Take care x
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