@mrsjelly I had my first Zolendronic acid with my first Kadcyla, which was about 5 weeks after surgery, and before radiotherapy xx
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@leelee1 well done on making the decision - its your decision so the one right for you, and fab to be finishing sooner zx
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@erica I think your GPās response was a box ticking exercise. My GP in Wales didnāt bother with me after my diagnosis. I only contacted them when I had symptoms during chemo etc and most of the time they were guided by what my helpline had said they should do. Iāve had been back to the GP afterwards and they werenāt up to date with the details. For example with Letrozole you need to have your cholesterol checked annually and the GP wasnāt aware. If it was me I would talk to my team and if need be go back to GP and say āMy team saysā¦ā , it works for me.
@maria1970 i have looked and yes they are listed separately, maybe itās a newer regime they havenāt researched yet. I told suggest you co tact them direct and see what they say so you get the right information. The nearest they have is FECT but thatās an extra drug you arenāt having
Hi @janske welcome to the thread. Nausea is common on Paclitaxel, let your team know and they can swap your anti sickness. Pins and needles could be start of perishable neuropathy, so let your team know aswell. Anything you are concerned about just ring your helpline. They would rather you call and it be noth8ng to worry about than something getting worse.
@mrsjelly Hello! Nice to hear from you. Iāve had 2 Zolendronic , due 3rd next week, so Iāll probably be quiet for a few days. I was told only invasive treatment such as extractions or root canal prevent the treatment. Just try to keep up with good oral hygiene, I struggle to floss between some teeth and just try different flossing items. I also use a sonic toothbrush which can remove items between teeth. My dentist was a bit off with me and said he had lots of older ladies on Alendronic acid nd they were fine. She ignored the fact Iād had chemo and that changes things within your bones/ jaw. I have a lovely team who deal with my questions about dental issues. I had to be referred to a dental hospital have some gum removed on a tooth that was capped and needed replacing, the wait for appointment meant the gum grew. She wanted to send me privately and I had no I should get NHS treatment and Iām on the list.
@leelee1 I couldnāt understand how my stray chin hairs stayed out all chemo and my eyelashes and brows more or less disappeared. The ones you want to loose are so much stronger!
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Congrats to all new community champions @arty1 @salbert @galdiolus @gromit12
And welcome to all the new ladies, the her2 thread has lots of buddies!!
I am now 7 days post surgery (immediate recon with implant) having completed chemo prior to that. Now back to dreaded wait for results. Trying to stay optimistic.
Having lots of sharp nerve tingly feelings but I assume everything is knitting back together!!
How long after op did people start going for walks and doing low intensity exercise?
Xx
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@purple_rain I was told I could walk as soon as I wanted to post surgery, but I couldnāt do anything with impact for 6 weeks post surgery as this could affect stitches / healing
@naughty_boob no one has mentioned to me having cholesterol checked on letrozole- on my list of questions for Tuesday! 
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Hello my darlings and it pleases me immensely to be making my first post as a Community Champion! It is both an honour and a privilege to be part of such an amazing and much needed organisation and I hope I can do the role justice. I must confess to having a smidgeon of self-doubt (what should I sayā¦ should my posts become more wisdom-filled and seriousā¦yada-yada) until I read @erica 's post and was instantly itching to respond and realised that I will continue as before and figure it out as I go. (Donāt hold your breaths on the wisdom bit though!)
@erica I had something similar happen. A GP worried me sick over something that was said and when I called my BC nurse she was really rather annoyed. Her words were āWho told you this? A GP? A GP is a GENERAL practitioner and this is highly specialised treatmentā. I will always remember it. No offence intended to any GPs who may read this but I do see her point. My oncologist told me that HER2+ breast cancer has now become one of the best cancers to have due to Herceptin which has been a game changer. Perhaps your GPās information is out of date or maybe she meant that it wasnāt such a good cancer in relation to DCIS perhaps. Anyway, if you get the chance to do a survey on the care you have received (my GP practice sends them out to be completed if you pass within a 10 mile radius of the place) then perhaps you should ask them to reinvest their care plan call budget into training on how to deal with people who have had a cancer diagnosis. She has been as helpful as a chocolate teapot and has caused you unnecessary stress and suffering and Iām sorry for that.
Moving on to cold capping, what a good conversation to have @leelee1 and good on you for making an informed decision. Itās interesting to see and hear the results of cold-capping on individual people. So good to see your lovely face @norts and I too can report gravity defying hair! A friend gave me some extra thin straighteners for very short hair but they are no match for my upright mesh of obstinate curls. I have them double-gelled at present but the hair is winning and there is nothing I can do about the wings above my ears! Letās both check back in on 26th June to see who has the tallest hair! 
@sez I also like to tell myself that the hideousness of cold capping was worth it. My head hair has grown back very well but my body hair, not so much. Although my mother tells me this can also be down to the menopause which would explain a lot.
@genericuser1 I once forced a study on my oncologist. He was telling me he knew of it already but I wanted him to read it plus notes by my statistician professor friend. I won in the end! 
@carrie5 Wonderful to hear of your daughterās life after cancer. Always great to share those stories on here.
Hello and welcome to @janske. It sounds like you are having a horrible time of it on treatment so Iām sending you a hug. Many of us have suffered from nausea but what do your medical team say about the redness, swelling and pins and needles? Remember that our wonderful Breast Cancer Now nurses can be reached on 0808 800 6000 for medical questions. I wonder if any others on here have had similar reactions?
@sooz1 I had so little hair left after cold capping all the way through that my hairdresser told me to shave it all off and said it would grow back faster. Iām still glad I cold capped as by the time I shaved it off it was growing back. Personally, even keeping the small amount I did, was easier for me than losing it all. I respect and admire those who just go for it and let it fall. Anyone dealing with this disease is beautiful in my eyes, whatever the state of their hair. Ultimately it was very cathartic for me to realise that hair didnāt matter as much to me as I thought it did. I hope your walk to the coffee shop for some cake was restorative. Psychology appointments can be both exhausting and draining. However, I think a good purge and cry is an important release so well done on doing something so positive.
My dear @mrsjelly - always good to hear from you whenever you drop by. Oh my wordā¦what can I say? If the bounteous cream of the blessed Germaloid tree cannot do the job then you truly do have my commiserations. Alas I can offer nothing better. I have fallen at the first Community Champion hurdle. 
Seriously though, Iām sorry to hear you are having a rotten time of it. I hope it all passes quickly and although it seems interminable right now, you will get through it. Iām having the latter of your two surgery options so Iāll let you know how that goes for me. It will probably be May or June; Iām waiting to hear at present. As for zoledronic acid, I had my first one on 11th July after finishing chemo on 4th July. I had started chemo on 22nd February so about 4 and a half months. Definitely worth asking your medical team about your options here.
Hi @purple_rain - Glad to hear that your surgery is over. I started going for walks almost immediately and doing gentle stretches as advised by my medical team. Keep us posted re your results. Weāre here for you, whatever they are.
This afternoon involves meeting a friend who wants to pick my brains although Iām not sure what she is expecting to find up there! She mentioned cake so I said yes. This evening involves more Dadsitting while my mother goes to do her Easter craft evening at the WI. My father wants to sing the songs of Perry Como. Iāll let you know how relations with the neighbours are tomorrow.
Love to all and thanks for your messages of encouragement and congratulations,
Salbert
xx
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@salbert youāre above answer is why you are now a community champion ! Congratulations!
Iām still annoyed too we didnāt get to meet on the same training day (huge sulk)
Congrats to @gromit12 @galdiolus too xx
@erica Iām sorry your gp has put the fear of wotsit into you - honestly I feel some gps need to think more carefully before speaking and remember that we are human beings not a ādiagnosis ā - to level out , there is no such thing as a good or bad cancer diagnosis , cancer is cancer ā¦ itās rubbish ā¦ and no one wants that diagnosis , however todays treatments are fantastic and treatment for her2 cancer is the best itās ever been , monoclonal antibodies such as traztuzamub, rituximub etc are absolute game changers for certain cancers ,
I feel relieved personally to be diagnosed with this now and not twenty years ago .
I remember when I saw my gpā¦ she sane straight out and said she thought I had inflammatory breast cancer and to brace myself for a grave diagnosis ! Thanks to her I didnāt eat or sleep for three weeks , convinced I was going to die ā¦
Please donāt take on board what your gp has said but instead chat to your team , they are the ones that know your diagnosis and your treatment , a gp is not a breast surgeon or an oncologist x
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@salbert Your most important role as community champion is making us laugh, please keep doing that!
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I didnāt get that, but I work in a GP surgery and know we do whatās called ācancer care reviewsā, where we invite the patient in and let them explain whatās happened (really patient led) and find out if they need anything (this could be pain relief or something for nausea, or if itās something inappropriate from a GP they may contact the oncologist and let them know the patient needs whatever). Itās meant to support the patient in case theyāre overwhelmed with hospital visits. If someone is behaving like a bit of a cold robot they probably are either poorly trying to follow a script I would imagine or possibly not good at that part of their job (for whatever reason, lack of experience etc.). GPs donāt (and shouldnāt) have much, if anything, to do with your cancer care plans, theyāre not specialists and communication with hospitals and oncology etc is usually pretty poor. They get copies of letters but most of the time know very little thatās going on. I would advise just relying on them for side effects, and even then know they may have to contact the oncology team or BC nurse cos they canāt do much.
Reception staff hate inviting patients for these cos communication with hositals is often poor and we have no idea how informed the patient is, if they even have been told a diagnosis (weāre supposed to get a notification that tells us theyāve been diagnosed AND told, sometimes we donāt get it when we should). I often wouldnāt say the c word, and often resorted to calling it a ācare review following your hospital visitā just in case.
Not sure what other GPs do and if your GP has attempted this (poorly).
GPs can be very insensitive (like any doctor). We have one who used to be a surgeon and he very much behaves like a surgeon (very blunt, loves gross things etc), we often have to reign him in. Heās much better with patients (heās amazing with kids, they love him cos he looks like a mad scientist and sounds like Gru) but even now and then the surgeon comes out. For example after my diagnosis and Iād been off a little while (cos I was so sad) and when I came back to work and was doing much better he walked into a room I was in (hadnāt spoken to me much since diagnosis) and blurted out āso when are we hacking that nastiness off?ā.
Iām totally used to him (heās Romanian so I appreciate heās translating his bluntness into English before he says it and he often oversteps) but my coworker, whoād not been there long, was horrified, I knew what he was like and brushed it off. Same when we knew my treatment plan was a taxel, he said āweāre going to be twinsā (cos he has a shaved head). Doctors can be pretty thoughtless and surgeons especially but I take as their brains work differently to most people. I canāt imagine hacking people open reguarly and not being mentally messed up or enjoying it.
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@sez Your doctor colleague sounds as though heās modelled his bedside manner on James Robertson Justice in the Doctor films - if youāre old enough to remember him. He was always brutally insensitive.
My Surgery must have a similar system to yours. Since I was referred on 17th April last year Iāve had no contact with them whatsoever but I suddenly received a letter yesterday inviting me to a Cancer Review and giving a date and time. The letter doesnāt say what the purpose of the review is so thank you for explaining it. I shall be prepared.
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Want to shape the national cancer plan. Please complete before 29 April
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@naughty_boob Thanks for the advice. I contacted them earlier today and just received this response in relation to EC-T (Paclitaxel), which I thought would be useful to shareā¦
Thank you for your enquiry.
Unfortunately we do not have any specific data for retention/efficacy this combination regimen, all our data is from the Dutch registry for scalp cooling but as of yet does not cover all combination regimens. In the absence of data we generally say it is 50% - meaning you have a 50% chance of retaining half of your hair with scalp cooling, it is also good to keep in mind that scalp cooling does also help with faster and stronger regrowth post treatment with hair recovery and volume been stronger within 12 week compared with those who did not scalp cool.
I have provided a link here to more information on regrowth if you do wish to take a look Hair regrowth with scalp cooling.
We do have some data specific for the drug groups separately - Taxane regimens (such as Paclitaxel) showed the highest efficacy, with 78% of patients not needing a head covering, compared to 40% for anthracyclines and 45% for anthracycline/taxane combinations.
You could also consider joining our private Facebook Group and ask others having treatment for their experience with this particular combination regime, it is a closed group and you can post anonymously Redirecting...
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Yes @mrsjelly I changed mine 18 months ago from British Heart Foundation.
@maria1970 im pleased you have a response. I thought it would be to do with not enough dat for that regime. At least they gave you some stats.
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Thanks @gromit12 and @salbert
Iām finding walking abut difficult at the moment, maybe itās the drain. Iām quite slow on my feet. During my break between chemo and surgery I was walking 4k daily and doing 30 mins low intensity so my days are feeling long!
I cold capped but lost 60% hair so new growth is grey! How long did people wait to dye hair?
Thanks xx
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@purple_rain Mine came back grey and sticking out like a mad professor!! I waited ages to try to colour it- finished chemo end July, still on Kadcyla. Finally plucked up courage and tried a semi permanent organic colour about 8 weeks ago and it was fine. As Iād cold capped and kept 70-80% of my hair Iāve been really scared of moving away from the shampoo/. conditioner I used during chemo even! Nice not to be grey though! I went chocolate colour
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I finished chemo the end of December and used a wash in/wash out colour shampoo thing from superdrug at the weekend cos I hated having white/grey hair (have fought it since I was 14/15 so the idea of not being able to dye it til June was too much for me). I thought as it wasnāt a proper dye it wouldnāt be a big deal (no peroxide, bleach or anything in it). It was a major fail, didnāt take on a lot of the hair and is a bit ginger (was supposed to be light brown). I look very odd (itās really patchy) and itās not washing out as easily as I had hoped. Iāll be sticking with hats/wigs etc. for some time I think.
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Iām a klutz, my hair hasnāt fallen out, thatās all that matters. Iām very blasĆ© about this kind of stuff now. I was never too bothered about how I look (hypocrisy that I hate having white/grey hair but meh) but now being lopsided chestwise, if I make a hair mistake I can shrug it off. I bought another couple of wigs so Iāll stick with them and hats til June, just hate that I overheat (menopause not helping, if indeed thatās what causes my hot flushes). Hope I have some decent length by Summer so I can do away with wearing anything.
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Thanks for sharing @sez
Iāve also had white hairs since late teens and have always gone out of my way to cover them. I will wait abit longer I guess as Iām only six weeks out from last chemo. My hairstyle is a very wispy bob now. I used have thick dark hair but this I think Iāll use scarves and hats for now and give myself more time to get better. Thanks for replying x
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