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Her2 Positive

Petal88
Member

Re: Her2 Positive

Hi everyone. I hope you are all doing well and that Cassa is ok with the first chemo.

I have a question: Has anyone else had Herceptin by injection and had puffy hands? I am having problems because after my surgery the drain had trapped a nerve and I still have a lot of pain and can't move my arm properly yet. Now I have pain on the back of my hand and my fingers are even puffier than of late. I will obviously ask the consultant when I see him but I am trying to work out what is actually causing it. I had my second jab yesterday, having previously had infusions of Herceptin when having chemo, and I wondered if that could cause puffiness.
Petal88
Member

Re: Her2 Positive

You'll find strength you didn't know you had, Cassa. Once you get started the fear of the unknown goes and you just deal with what gets thrown at you. I'm not saying chemo is a walk in the park but it is do-able and each cycle is a step nearer being cancer free. Everybody reacts differently but it always helps to ask questions on this site and nearly always there is someone who can help and understands and can reassure you. The hair loss is not so bad, just messy when it starts to fall out. I had mine cut very short beforehand and some people get to a stage where they just get it shaved off. See how it goes but nothing comes so suddenly that you are taken unawares.
I didn't have FEC but went straight into TCH which had strong side effects but I survived them with help and support from my December Angels. Good luck on Wednesday, we'll be thinking of you.
Cassa
Member

Re: Her2 Positive

Hi everyone, another sleepless night !! But have taken your advise and have posted on the monthly thread, guess I will be flicking between between forums over the next few months grabbing all the advice I can off you all, so keep it coming. Hugs to you all Cassa xx
Petal88
Member

Re: Her2 Positive

Hello ladies. I agree wholeheartedly that it is a good idea to join the monthly forum for your chemo group. I have found mine a tremendous help. Good luck to you all, each day is another one closer to the end of the treatment. I still have a couple of lingering side effects but my hair and eyebrows are slowly returning now.
EAM28
Member

Re: Her2 Positive

Hi cassa,I'm so glad the ball is rolling for you! All that waiting before you see oncologist is the worst bit. At least you know what is a head of you now & you can work through each bit at a time. I am at the same stage as love wine - half way!:). So will be starting tax & herceptin on next round (5th June). Couldn't agree with love wine more in that its good to join the monthly chemo groups. Good luck for next wed,will be thinking of you xxx
Lovewine
Member

Re: Her2 Positive

Cassa, good luck!! It's not as bad as you fear!! Xx
Cassa
Member

Re: Her2 Positive

Hi Lovewine thanks for your encouraging post, no I haven't joined a monthly thread yet but will do so over the next couple of days as I can see that being a big help. Haven't bought my wig yet either, although have tried a few on just to get past the fear factor !! So that's on the agenda for next week along with other head wear - going to have to get practicing on tying scarves, take care Cassa xx
Lovewine
Member

Re: Her2 Positive

Hi cassa, so happy you are feeling more positive. I felt very like you before chemo- it's manageable and mist of the time you will feel "normal!! It's amazing how you can get used to things that frighten you to start either the chemo or hair loss. I was so upset when my hair came out on day 17 after 1st fec, but I had already bought my wig which is a good match to my own hair and after getting over the fear of it blowing off which of course it never did I don't notice I am wearing it now! Also couldn't bear looking or anyone else looking at my bald head, but after a couple of weeks even that has passed and become " normal" ! If you are not already I would recommend joining the monthly thread for chemo as everyone else is going thro it at same time: the tips, support and comfort you get from other ladies is fantastic , good luck, hope it goes well for you, I was told a very wise quote at beginning of mine. " there IS life after chemo- but no life without it " !! Xx
Cassa
Member

Re: Her2 Positive

Hi Ladies a big thank you to you all, I feel like I have come on in leaps and bounds since my first posting on the 29th April when I was asking about delaying treatment. I met my oncologist today (it seemed a long time coming) she was lovely and went through everything but it was only because of all your posts and information that I was prepared. Like most of you I am having 3 x Fec and 3 x Tax with Herceptin on the 1st Tax which seems to be the norm for Her2 positive. My first one starting next Wednesday 21st May, wow after what seemed like such a long wait everything is now moving quickly, just hope I am still feeling this strong next week (doubt it). I am still frightened about side effects, hair loss etc. but as you all seem to say I am just going to try and take one day at a time. Thanks again. Cassa x
Petal88
Member

Re: Her2 Positive

Hi, thanks for all the replies. I am hoping for some advice now. I contacted the BCN yesterday and she told me to ring my GP as I have tremendous nerve pain from under my arm to my elbow when I try to move. The exercises are so difficult with the pain that I end up with tears rolling down my face and the nurse thought it may be a nerve trapped by the drain. The GP has prescribed Oramorph which takes the edge off the pain enough to attempt the exercises but I am worried I am not moving my arm enough. I don't want it to stay immobile but should I be letting it heal before much movement? I haven't been told very much about what to do next. Obviously it should be more comfortable when the drains gets taken out. I just want to do the right thing to avoid problems in the future and I read about needing to lift your arm up when you have radiotherapy and the very thought of that terrifies me!
Cassa
Member

Re: Her2 Positive

Hi Petal88, pleased to hear both you and your sister got through your ops ok, one day at a time now, take care, sending hugs, Cassa x
Lovewine
Member

Re: Her2 Positive

Hi petal 88 , you must be relieved op is over, one day at a time! Hope everything goes well with recovery!
rosie14
Member

Re: Her2 Positive

Hi Petal88 glad your op is over and hope each day will see an improvement. x
Petal88
Member

Re: Her2 Positive

Hi All. Just a quick posting to let you know I am home from my op. Managing the drain but will be glad when it's out again though I am losing a fair amount of fluid so far. Exercises are painful so I am trying to keep the painkillers topped up.
I am pleased to say my sister has come through her big operation; she has a long way to go so I feel I mustn't grumble. Hope you are all keeping spirits up.
rosie14
Member

Re: Her2 Positive

Fortunately I purchased my dress in the January sales before returning to Cyprus after Christmas! I got a bargain the ticket was marked at 99 pounds, reduced to 69, then 49 and finally 39!! I must have known I wasn't going to be up for dress shopping!
Lovewine
Member

Re: Her2 Positive

Hi Rosie, yes I read your posts too over on April chemo thread..glad we have both found this thread too!!
At least you have a lovely event to aim for in august , but it is very daunting isn't it with all we have to go through! And yes it must be hard to think of what state you will be in- but chemo will be finished by then and you will hopefuly feel well, your family I am sure will be so happy to have you there, but yes I stressed over little things for my sons wedding without all the added worry over what we are facing this year that you have, but what a lovely day to look forward to for you all!! Wendy x
PPP
rosie14
Member

Re: Her2 Positive

Hi Lovewine I only found this thread this week too! I seem to have the long haul that you have. Our youngest son is getting married in August and I have told the oncologist I must be at the wedding in the UK! Heaven knows what sort of state I am going to be in by then?!!!
Lovewine
Member

Re: Her2 Positive

Hi ladies, I also have just stumbled on this thread, I have been posting on April chemo thread too.
I am HER2 + , I am having chemo first -3 fec and 3 tax, I am due my 3rd session next Thursday.
I found my lump in February, had biopsies, ct scan and sentinel node biopsy in early march, at the moment all I can see are weeks of endless treatment, surgery, herceptin and radiotherapy it's all very daunting!!
I am 51 , with a lovely husband and 2 sons aged 25 and 23 and a beautiful daughter in law and last year all I had to worry about was choosing a nice outfit for my sons wedding! And all this was just around the corner, when I look at the wedding photos of such a lovely day I can't help wondering if the cancer was there then.
Good luck with your operation petal, and to everyone else on this thread!
rosie14
Member

Re: Her2 Positive

I speak very little Greek Petal luckily we have private medical insurance here so I can go to a private hospital where most of the staff speak English!
Petal88
Member

Re: Her2 Positive

Hi Rosie. I didn't realise it was you I had contacted about nails as well on the other forum! I'm not sure if I envy you or not, living in Cyprus but having to go through treatment. Is it at a local hospital and do you speak the language? (Greek or Turkish?)
What an adventure to open a school! All the best for your recovery, at least you can recuperate in the warmth!
rosie14
Member

Re: Her2 Positive

Hi Petal88 I am taking one day at a time and make sure I have something to look forward to in between chemo treatments. We live in Cyprus so these forums are my greatest support. We came here to retire early and ended up opening a school!!! I am not involved with the teaching since my diagnosis in March.

Petal88
Member

Re: Her2 Positive

Hi Rosie. Sorry to hear of your diagnosis though I don't know anything about Paget's disease. How are you coping? We all seem to have different treatment timetables, don't we? I try to be positive but I can assure you I have had many a wobble and I have certainly been helped by the support on these forums and I am very happy if I can encourage others.
rosie14
Member

Re: Her2 Positive

Hi everyone I have only just found this HER 2 pos thread! I was diagnosed with grade 3 ductal invasive cancer an Paget's disease in March. I only found out that it was Her 2 pos 2 weeks ago. I have to have 8 sessions of chemo, 4th one coming up on Thursday and I have to have Herceptin added on the 5th round. Surgery will follow late August followed by rads and then the hormone drug! Not a pleasant journey. But Petal88 you have had it rough and are an inspiration to all of us!
Petal88
Member

Re: Her2 Positive

That's reassuring, thanks. It still seems a long journey just now.

Has anyone else had an irritated bladder on Herceptin? I had it several times during the chemo cycles and have had umpteen courses of antibiotics in case of infection but now it doesn't seem like an infection but is driving me crazy and I am so worried I won't be able to have my operation on Friday.
Curleychris
Member

Re: Her2 Positive

Hi ladies.,
I am Her2 Er and Pr+ but have completed treatment apart from tamoxifen was diagnosed Oct 2013. Had Mastectomy and total clearance of lymph nodes 1 of 16 positive. It's a long road but just wanted you all to know doable and worthwhile.
Cassa
Member

Re: Her2 Positive

Hi Queenbee1407 hope your feeling better soon xx
queenbee1407
Member

Re: Her2 Positive

Day five.
Feeling quite washed out today.
Indigestion is rife, here comes the rennie. I have started to give my own injections in my to stomach to help my white cells. That was quite a challenge to do, watching yourself stab yourself. I have burst of energy. Take one step at a time.
Your body tells you you can not do any more.
Petal88
Member

Re: Her2 Positive

Hi Cassa. Another thing I have done is moisturise well especially around the cuticle area. I have to take the nail varnish off this week because of having my op so I'll let you know what happens to my nails!
Cassa
Member

Re: Her2 Positive

Hi Petal88, so pleased you have posted and like EAM28 says welcome and good luck for Friday. Thanks for the info on dark nail varnish, these seem silly little things to worry about especially after the difficult time you have faced these last couple of years, so again thank you. Keep us posted and take care xx
Petal88
Member

Re: Her2 Positive

Thank you for your kind words. I was starting to think there weren't many HER2+ postings so I'm glad I found this thread. It is confusing that the doctors treat us differently even when we have similar diagnoses. I do feel for you having this so young and wish you well.
Moonglow
Member

Re: triple negative breast cancer

My first time posting.... but wanted to share my experience and hopefully help some that are going through this at this time.

 

I was diagnosed triple negative, between stages 2 and 3 with my lymph nodes significantly enlarged 8 years ago. I read about a small study that was done with flaxseed, where one group had flaxseed muffins daily and the other test group had none. What was found was the ones having the flaxseed, the tumors reduced in size, while the other group's tumors didn't.

 

My Oncologist recommended to treat me with Taxol, at the same time I took 16 -1200mg. of flaxseed oil caps 4 -4 times a day throughout my chemo treatments and stopped just shortly before my surgery. My surgeon was utterly amazed that the tumor had shrunk to 2 millimeters and after all my lymph nodes were removed on my right side they all tested clear! I didn't have to go through any radiation nor any other medications. I still take 4 caps of flaxseed daily as a preventive. I'm still keeping my fingers X'd that it doesn't reoccur. I wish you all the best.

EAM28
Member

Re: Her2 Positive

Warm welcome petal88,I'm so so sorry to hear your story,must be so tough for you. I'm glad this website is supporting you - its a god send isn't it! Well as far as I know with having her2 + at least it can be targeted with the herceptin which locks onto the her2 protein & stops it from growing & reduces risk of cancer coming back. I read that it wasn't available 5 yes ago so we're lucky! I hope Fri goes well,will be thinking of you,take care xxx
Petal88
Member

Re: Her2 Positive

Hi there, I hope you don't mind me joining in, I usually post on my December Angels forum as that is when I started chemo. I am, however, HER2+ as well as weakly oestrogen positive and can answer you about the nail varnish. Certain chemo therapies, not all kinds, affect the nails and you need to keep the bed of the nails, down by the cuticle, from getting UV light so the darker the nail varnish the better.
I have to say it is good to know this forum is specific to HER2 as I have been quite frightened about that. I was diagnosed after a routine mammogram last October and told I had mucinous ductal cancer that shouldn't spread and should be slow growing. I also had calcification and that was found to be malignant and I had 2 biopsies and a metal clip inserted but I kept saying I was sore under my arm and a further ultrasound showed it had spread to a lymph node and was fast growing due to being HER 2+

I therefore had chemo first and had 6 cycles of TCH (Taxotere, Carboplatin and Herceptin). Side effects have been quite bad and I was in hospital with neutropenia twice. Now, however, they say I have responded well and I am due to have a lumpectomy and node clearance on Friday. I will have radiotherapy afterwards and possibly hormone tablets and I am now also having Herceptin every 3 weeks by injection, the first one being last Monday.

Life has been tough these last two years as I lost my husband very suddenly and my sister has terminal cancer but I am surviving and have had tremendous support from this website. I do hope you are all coping well and getting support from your own chemo contemporaries.
Cassa
Member

Re: Her2 Positive

Thank you for posting and thank you for warning me about my nails, ok didn't realise they might come off ugh, but I want to know everything and try and be as prepared as possible, I am sure it's nothing when looking on the bigger scale of things to come over the next months. Going to be checking the nail thing out later, someone else mentioned dark nail varnish, is that because they look unsightly ?
You have done really well and it's so encouraging, anything else you can tell me please do so. Good luck with your Radiotherapy keep us updated xx. Anytime you want to rant and rave or just chat I will always get back to you, even on the PM section although not quite sure how that works yet, take care and stay strong, sounds like you are doing amazingly xx

spudlab
Member

Re: Her2 Positive

I too was diagnosed HER2 positive, oestrogen positive and progesterone positive breast cancer the first week in November. 

I simply noticed my left breast felt a bit odd on a Tuesday evening. I was seen that Thursday and had mammogram rapidly followed by ultrasound and biopsies. The consultant then told me I had an 80% likelihood it was breast cancer. I had gone on my own and was rather shell-shocked.

I had a mastectomy and axillary clearance on the 3rd of December. Unbelievably the tumour was 8cm and 11 out of 15 nodes were positive. My CT scan showed a blip in my right lung and I have already had another scan that is highly encouraging that it is nothing to worry about.

I completed my 6 FEC-T on 24th April so I am still in the recovery phase from that. I found the FEC OK. I managed to work through it and kept going to the gym. The T is rather different! It is manageable though. I was glad to have met someone who warned me about the following though so I was prepared:

1. About 7 days post dose my finger tips feel like they have been trapped in a car door

2. Joint pain kicks in about day 5 - paracetamol has been enough for round 3

3. Your nails will lift and may fall off - I wear uniform for work so can't wear dark nail varnish. First one is falling off today in my case.

4. You may well get tingling in finger tips - the peripheral neuropathy they warn you about. Mine didn't start until 2 weeks after the 2nd dose of T.

 

I start radiotherapy on 19th May. I was really anxious about having to have tattoos but they really are tiny - almost can't see them. I have had 3 herceptin and am having them subcutaneously into my thighs. A bit stingy but absolutely ok. I start tamoxifen in a couple of weeks.

 

Just to add to the stress of treatment, my husband is working 4,500 miles away and our 16 year old starts his GSCEs on Tuesday!

 

I have not really posted on here before but have just been lurking. I don't know what made me post tonight but there we go. 

 

The chemo is manageable! Just take each day at a time. I will let you know how the radiotherapy goes

EAM28
Member

Re: Her2 Positive

That's OK cassa,yep I will try & keep you posted as much as poss. I am normally on the April 14 monthly chemo thread but this one is a good thread you have started as we will all be going through the same treatment plan pretty much so nice for all of us to follow & get support:). Catch up soon xxx
Cassa
Member

Re: Her2 Positive

Hi Debs, what a tough year you have had so far, sounds like things might be starting to settle down for you for the rest of your treatment, fingers crossed for that. Thanks for letting me in on your journey, it really does help. These bank holidays are not helping ( lol ) everything seems to come to a standstill, normally I would enjoy a bank holiday but I guess nothing is going to be normal for the rest of the year. Take care Debs and keep me posted if you are up to it. x
Debs-
Member

Re: Her2 Positive

p.s I def have chemo brain,excuse mistakes etc.Just wanted to add that i think its my hormone treatment im on for 10yrs. It used to be standard to be on it for 5 but some hospitals have found benefits in keeping it going for longer.

Debs-
Member

Re: Her2 Positive

Hi Cassa,

       Sorry you find yourself on here. I also like the other ladies am her2 pos. Im 40yrs old and went to dr with a slight thickening. Turned out i had 3tumours and spread through breast tissue and 13 out of 22lymh nodes and surrounding tissue there was cancerous too!! I was given heads up at my first mammogram on 23rd dec 2013 and then met my oncologist 6th Jan 2014.Had my mastectomy of left breast 3weeks after that and started fec1 just 7wks after operation.I just had my fec3 yesterday and start tax and heceptin in 3weeks time followed by rads and hormone treatment and will be on someting else for a further 10yrs. The heceptin im on for a year like most of us who are her2pos.

 

I personally had a rough start with chemo(but i never do things by halfs lol)..My fec 3 is treating me well as couldnt of even typed this early on for last two.

 

Take one day at a time,and time scales on her vary with dif patients but even a week feels like forever when your waiting for results,appointments etc. All the best x

Cassa
Member

Re: Her2 Positive

Hi EAM28. Thank you, your timescale is a great help, I know it could differ slightly but it gives me an idea of what to expect. So I'm 2 months behind you, I will follow your progress if your up to keep posting 😊 I cannot express how helpful I am finding this site/forum, and only hope I can be of help to others when I am further down the line, good luck, will be thinking of you x
EAM28
Member

Re: Her2 Positive

(DX end of Jan)
EAM28
Member

Re: Her2 Positive

Hi cassa,
I echo what the other ladies have said - positive feedback on all the treatment but just to give you a bit of a timescale -
I was DX with grade 3 invasive ductal ,her2 & er positive (so exactly the same treatment plan as you)
Had lumpectomy 2 wks later
Had further surgery 3 wks later (as didn't get enough 'margin') 1 out of 8 lymph nodes where positive.
Started chemo 5 wks later (but was delayed a little as had a build up of fluid 'serenoma' that needed to be drained every week & looked into fertility options as I'm 28)
So now I'm on 2nd of 6 fec-t chemo & like another lady said - the first wk is the worst but then you get two nice wks before the next one so the good outweighs the bad:)
I'll be starting herceptin for a year on my 4th cycle. I think the side effects are not much more than the chemo but they monitor you're heart more.
I will then have radio for 3 wks so assuming that will be in August as all being well I finish my last chemo end of July!:). So hopefully back to work in sep!:)
Oh & tamoxifen (hormone tablets) for 5 - 10years!
Hope this helps & hope it all goes well for you,good luck xxx
Cassa
Member

Re: Her2 Positive

Hi Biddlybee, thanks for your post and support, yes I know now that I really need to get started on my treatment and hope that's going to happen quickly once I have seen my oncologist. I am finding this forum very helpful and encouraging, I will check out the Facebook page you have mentioned and am sure I will be on here and possibly Facebook more once my treatment has started. Good to hear your improving. Best wishes x


Biddlybee
Member

Re: Her2 Positive

Hi Cassa, sorry to welcome you here, but hopefully you will get plenty of support. I am her2+ too, had mx in august, nodes clear, then 6 x FEC type chemo, no radiotherapy, and am now on herceptin. There are so many different diagnoses and the onc or your breast care nurse will hopefully explain them for you. I just wanted to get it over with, and I didnt want to delay the treatment at all. Not that there was any delay, it all happened pretty quickly from when I found a lump in June. I am 56. I too was fit and healthy, and am starting to get back there again, slowly but surely. No side effects from herceptin, so far so good. Chemo was unpleasant but do-able. It is a slog, but it is lovely to hear that you have good support too, that really helps. Hope you have healed up ok post op. There is a good facebook page, Breast Cancer Buddies if you want to chat on there, or there might be a group formed on here for the same month as you going through chemo. I find the forums very helpful but must admit I have been sticking to the facebook ones recently! xx
Cassa
Member

Re: Her2 Positive

Hi Queenbee, thanks for your reply and information, hope you have been ok today, try and take it easy.
Carol x
queenbee1407
Member

Re: Her2 Positive

I have 3 more sessions, 4 in total. Once you have seen your oncologist you will probably think time is slow, but you will most likely have a Muga scan, radioactive dye inserted to check your heart out before you start chemo. When the appointments start you just need your brain and diaries to be handy.
Keep well. Xx
Cassa
Member

Re: Her2 Positive

Hi Queenbee, so glad you got through yesterday ok, yes please do keep me updated on how you are doing, do you know how many chemo sessions you are having ? I have 2 more weeks before my oncologist appointment, and then I don't know how long I will have to wait before chemo starts, it's the waiting that's so difficult, like you I think once that 1st session is over I will be more prepared to deal with it, take care and stay strong xx
queenbee1407
Member

Re: Her2 Positive

Hi, I was anxious to start with, but then got a little more relaxed. Probably the tension leaving me.I am up know feeling a little nauseous but have had a cuppa and a few ginger nuts to try settle my tummy. Next session is on 21st, so I will be better for that one.
Will keep you updated on my journey. I hope you are doing well. Xxx
queenbee1407
Member

Re: Her2 Positive

Hi, I was anxious to start with, but then got a little more relaxed. Probably the tension leaving me.
I am up know feeling a little nauseous but have had a cuppa and a few ginger nuts to try settle my tummy. Next session is on 21st, so I will be better for that one.
Will keep you updated on my journey. I hope you are doing well. Xxx
Cassa
Member

Re: Her2 Positive

Good morning, I am sure you have had a very difficult night, but the waiting is nearly over for you and once you start your treatment today it's got to be onwards and upwards, will be thinking of you today, will keep in touch, best wishes.Carol xxx