HER2+ and need some buddies

Yes. Felt the same after lumpectomy and node clearance. Dont underestimate how long it takes for general anaesthetic to get out of your system.

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Good morning all

I hope youā€™re all doing okay.

Currently having chemo and targeted therapy.

I am just wondering what is the experience of those who have finished surgery and chemo and are just on the phsego or Pertuzumab.

What are your side effects.

I guess Iā€™m worried about about the next year.

Chemo has not been kind to me so far Iv had every side effect on the list.

Thank you :blush:

I had a lumpectomy & radiotherapy 6 weeks later & was told to use moisturiser twice a day straight away. I used Cera Ve. Iā€™m 4 months post surgery & my scars from both lymph node removal & lumpectomy are barely visible & very neat.

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Thank you everyone for your replyā€™s regarding post surgery products and when to use these.

It is helpful to know so appreciate it!

I am so amazed by the different advice for the same surgeries across the country.

Cheers everyone! :smiling_face_with_three_hearts:

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On a different noteā€¦.

I was wondering if anyone knew or had experience about personal injury law?

You are an intelligent bunch so thought I would ask :thinking:ā€¦

I suffered a serious injury which is close to expiry for the 3 years to bring proceedings.

I have contacted a few solicitors but not getting anywhere and was wondering if the 3 yrs of bringing a claim is set in stone or are there any mitigating or extenuating circumstances and reasons that could be accepted such as breast cancer diagnosis and treatment?

Trying to pick up the pieces of my life before the cancer diagnosis.

Thanks :smiling_face_with_three_hearts:

Oh @chakakhan Iā€™m so sorry to hear about your serious injury. The most I know is about all the adverts on the TV. I would hope that your breast cancer diagnosis would be taken into consideration if there is a time limit, but youā€™d need to seek legal advice for this.

My home insurance has legal protection, so worth checking your own.

I found this after a quick google on the LV website which states that personal injury is included with their legal cover. https://www.lv.com/home-insurance/what-does-home-legal-expenses-cover

I hope you find the answers you need :smiling_face_with_three_hearts:

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Hi lovelies

@magl Have you read ā€˜Ticking Off Breast Cancerā€™ by Sara Liyanage? She had exactly the same as you. Mine was hidden away in a duct and never showed up on scans but fortunately I got some symptoms and it was a biopsy of a cyst that finally showed up the cancer cells. Were you the same? I feel so lucky it got found and that my body told me something was wrong.

@isthisreal It must be so disappointing and upsetting to have to get back on that chemo train. Zoledronic acid gave me aching limbs and joints so hoping itā€™s that that caused the lady on the other groupā€™s similar symptoms. It really helps to have online friends going through the same experiences as you. We are cheering you on.

@pennyp I start my radiotherapy next week so I will let you know what my team say about Flamigel.

Hi @lilly123 From what Iā€™ve read on here, some people get side effects from the Phesgo or Pertuzumab and some donā€™t. Iā€™m lucky in that I get none but I know others get the same side effects every 3 weeks when they get their injection. It seems like it is luck of the draw. Funnily enough, after doing well on chemo, it was zoledronic acid that floored me! Iā€™m glad that is only every 6 months. Sorry to hear you are having a tough time on chemo. Big bear hug.

@chakakhan Iā€™m afraid I have zero experience with personal injury law. As usual @naughty_boob comes up with a sensible suggestion. Iā€™ve said it once and Iā€™ll say it again, everyone needs a @naughty_boob in their lives! :smile: Is it still possible to speak to Citizens Advice? Although the one time I did that I was misadvised and left terrified that I was due a large tax bill that would have crippled me. Fortunately the Citizens Advice was bad advice!

Love to all

Salbert
x

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I hadnā€™t heard of that book but Iā€™ve just ordered it. It sounds just the thing Iā€™ve been looking for.
I had an intermittent pain in my breast. My GP referred me to the Breast Clinic and an enlarged node was seen on scan in the breast. I had ultrasound and biopsy the same day and they confirmed the dreaded verdict 2 weeks later - Stage 3 and Oestrogen Positive in lymph nodes. I canā€™t remember if that was when they said it was HER2.
I too feel very lucky it was found. The pain had stopped by the time I saw the breast consultant and she said the pain had probably been caused because it had been putting on a growth spurt. If the pain had stopped sooner I wouldnā€™t have gone to the GP at all.

Thank you Naughty Boob and Salbert.

Very Good advice but I do not have insurance.

CAB are not what they used to be in my experience like you Salbert and I have just found out I have until Friday to raise my claim!

Anyway I am just going to crack on and do something myself not been able to get any legal advice as they are not able to act at short notice.

Unfortunately I was in an accident that left me with serious injuries I then got hit by a car as a pedestrian just days before a holiday of a lifetime and then diagnosed with breast cancer whilst facing eviction from my home during the Xmas periodā€¦it really has been a difficult and challenging time and that is not the whole story! ā€¦

I was unable to deal with my personal affairs during this time other than my breast cancer treatment and other hospital appointments due to my accidents so I do hope that they will take this into consideration:hand_with_index_finger_and_thumb_crossed:

Love n hugs :heartpulse:Xx

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Hey everyone just wanted to rant and reach out on here.
Had my 4th round out of 6th a week today.
Really struggling this roundā€¦ i feel awful! Been sick and that awful acid you get bleh! Finding it emotionally harder tooā€¦ pretty much been in bed for a week, my mum has my 2 year old but having proper mamma guilt.
Also i have very little hair now and that as triggered me too! Im 33 and just feels like this is :poop:, i know no one should have to go through it no matter what age! I know there is better days to come and i have 2 more rounds to go! So far after 3 rounds my nodes were clear again which is amazing progressā€¦ so still trying to keep that in mind. Cant wait for all this to be bloody over! Feel so down today.

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@magl - You will probably read that book and be shouting ā€œYes! Me too!ā€ as you go through it. I have stopped and am about to start again where she starts radiotherapy as I decided when I started it back in February that I wanted to go through it with her. It validates what you are feeling somehow. I had a bit of pain and a weird buzzing feeling in my dodgy boob but I was told this was probably due to the Hadfieldā€™s Procedure op Iā€™d had a year previously. Who knows? Just super grateful it got found. Arenā€™t we fortunate.

@chakakhan What a terrible year this has been for you. Yep, crack on, I say. Now that the op is out the way you will be able to pick up where you left off and focus on everything else. Really good luck with that.

@jeml Oh love, I want to give you such a big hug. I really feel for you. Do not underestimate how tough this is. Chemo is cumulative and youā€™ve done so well up until now. You are still kicking its butt but sometimes you need a duvet day or even a duvet few weeks. 33 years old seems bloody unfair, especially when you have such a small child. You are bang on, it certainly is :poop: but you are getting there. One day at a time, it does pass and you will come out the other side. You rant away on here whenever you feel like it. Whatever anyone says, losing your hair is hard for a woman and although we all try our best to see the positives, itā€™s absolutely ok to say THIS IS CRAP! My hair is growing back really well now as I finished chemo on 4th July but my latest problem is that without a fringe, any spots that pop up are really visible. Spots at 53 and when Iā€™m post-menopausalā€¦ I ask you :roll_eyes: We take the blows but we donā€™t let it beat us. Here is another hug. :hugs:

Love Salbert
xx

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Aww thank you so much for the lovely comment @salbert it made me well up again ( all i have done is cry today )
I know brighter times are coming! I guess the chemo week is always a bad oneā€¦ i like to keep going and busy so being in bed and binging netflix is getting pretty boring. My two year old as been wanting me a lot this round, luckily i stay at my mums for my chemo week until i feel up to going home, in my old room i feel like a teenager again lol. Its hard though when i can hear lil one crying etc i cant switch off and sometimes she been shouting me and its given me massive mummy guilt! Hopefully with her being so young though she wont remember and she dont understand fully about being poorlyā€¦ she was pretending to put medicine on my boob eaerlier was cute :woman_facepalming::smiling_face_with_three_hearts:

Hi Lilly123,
Iā€™m on Phesgo and have made it to 10/18, having had the first 4 with Docetaxel before a break for surgery and rads. I was diagnosed exactly a year ago.
I find I still have to manage my energy a bit, but not really sure if thatā€™s just a hangover from chemo (finished in March) or whether the Phesgo (or Letrozole) is the culprit. Iā€™ve been making up for lost time and crammed a lot into the last few months so that probably doesnā€™t help, but the targeted treatment alone is much, much more manageable than chemo. I hope that is good news for you.
However Itā€™s very depressing having to go back in the chemo unit for the injections which doesnā€™t help with mental health and ā€˜moving onā€™. If there is an option to have the injections in another place (GP, outreach clinic) do take it. On the physical side, my only problem is skin rashes, particularly on my scalp which I had during chemo, went away during my break for surgery and have returned worse than before. The dermatologist I saw didnā€™t think it was connected, but I beg to differ! Oh well, at least I have some ā€˜lotions and potionsā€™ to help but just accepting the fact it probably wonā€™t resolve until I finish next spring. Everyone is different - Iā€™ve always been the ā€˜rashyā€™ sort - so maybe you will be fine.
Wishing you all the best for the remainder of your chemo. It will get easier.

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Iā€™m a bit disappointed it hasnā€™t got an index.

@chakakhan it has been a miserable year for you. I hope you get something sorted. A bit of compensation can go towards something nice.
I had to deal with my mothersā€™s estate and sell her house while dealing with surgery and chemo. It was horrendous and hard work so had a solicitor do quite a lot.

@jeml so sorry to hear youā€™ve been feeling rubbish. Have you called your team to change the anti sickness? You arenā€™t supposed to feel sick. At one point I needed two different ones to keep it under control. I was also prescribed Omeprazole for indigestion, if you have this and it doesnā€™t work they can change as well.

You are really a trooper dealing with all of this at 33 with a 2 year old, my children had grown up and I still apologised for putting me first. It was really hard after 20+ years of being a mum and putting them first. This treatment however horrible it is will all be worth it so you can see your child grown up. You are not a bad mum, you are doing your best with what you have got. Clear nodes is great news. Take it one day at a time, be kind to yourself, as @salbert says itā€™s cumulative. Take the good days when you can. We are hear to listen to your moans.

:smiling_face_with_three_hearts:

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Thank you for the reply! I have had them change it twice now my sickness tabs and i still been sick or felt it. Im on lansoperazole too twice a day. I will mention it to my consultant again when he phones me.
Did your sickness go away then? Would be amazing if i can sort it for the next two rounds.
Also been out of breath a lot, did you get that? Not while resting usually if i go upstairs etc. I got that last time too but heard two others i talked to say they were the same.
Gosh it really is hard no matter how old we are, no one should have to go through it!
@naughty_boob xx

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@jeml - Iā€™m so sorry you are feeling so rotten - Iā€™ve no experience of chemo yet , that delight is yet to come but I think you should tell your team and see if you can get some different anti sickness drugs . You are the same age as my daughter and she has a nearly two year old , I canā€™t even imagine her trying to cope with breast cancer treatment too

@norts yesterday was the first day my head was clearer. It made a huge difference .

@salbert I agree , everyone needs a @naughty_boob in their lives ! @naughty_boob you are always on hand with wonderful advice .
@salbert I think it goes for you too actually !

@chakakhan I canā€™t believe what youā€™ve had to deal with , Iā€™ve no idea on the 3 year timeframe , would it be worth chatting to an injury lawyer ?

Ive not had the best few days - Fear and anxiety to be my friends at the moment ā€¦ coupled with having to chase my breast clinic for my two week follow up , to still not receive an appointment ā€¦ Iā€™ve accepted Iā€™m probably not going to be seen now until my results come in . The clinic donā€™t make appointments, they go through a central booking system which is apparently playing upā€¦ I feel quite depressed that Iā€™m just left to get on with it without a follow up

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@jeml So sorry to hear youā€™ve had a tough round. Definitely take the advice to tell the nurses and hopefully they can find a drug to do the trick.

@arty1 Glad to hear you are feeling better physically. I think managing anxiety, emotions and mental health is tough. I found nothing stays the same for long enough to start to process. Iā€™m just out the other side or surgery, chemo and radiotherapy and itā€™s another whole new set of anxiety. We are lucky to have this group to share.

In non-diagnosis news, I told my teenage boys that if a body art calendar is set up then Iā€™m putting my name forward. They looked absolutely appalled. Pleased to see I can still shock them.

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@norts excellent Iā€™ll put your name down to be painted :joy:

Yes itā€™s just a rollercoaster ā€¦ in fact the smiler had got nothing on this trip !!! Or maybe a magical mystery tour from hell :see_no_evil:

I managed to control my sickness with Cyclizine for a few days then added In Odanestron if it continued. I was prescribed both and told to take at different times.

I started on Metoclopramide but I felt sick all the time, Cyclizine worked for a couple of cycles then I needed something else. Was told if the combination didnā€™t work, there were some more options. So always worth asking.

As far as out of breath, yes I struggled. I am already asthmatic but generally well controlled. The chemo and Herceptin/phesgo can reduce the ejection fraction of your left ventricle which will cause breathlessness. I would always mention it to your team. My EJ went from 68-60%, normal range for women is 55-70%. I still struggle with hills walking and aerobic exercise (I donā€™t do a lot) 9 months after chemo finished. I was quite fit before so itā€™s been hard to accept. Iā€™m hoping with time it will improve.

@arty1 You are doing great, be kind to yourself. I know itā€™s frustrating to have to chase clinic appointments. I know, I had to chase my annual mammogram and the lymphoedema clinic, people got very defensive that I had been referred but I wasnā€™t on the list. I think itā€™s part of th course with the NHS, they are so busy. Maybe they are holding off giving you an appointment until the6 have your results. Give your breast care nurse a call , check with them and tell them how you feel. Not knowing what is going on and why can just add to your already heightened emotions at this time.

:smiling_face_with_three_hearts:

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