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HER2 positive and chemotherapy

14 REPLIES 14
Guest user
Not applicable

Re: HER2 positive and chemotherapy

Hi all of you ladies on chemo and herceptin ,I have to make a decision next Friday wether or not to have it , because I have a lot of other health issues makes it an even bigger decision to make I had mx and full clearance on march 6 and I have a large hemetoma and bruising which can't be reopened to clear it .i really need to talk about it all with people who understand .im new to all this ,I've tried to post this before but for some reason it hasn't worked I must be doing something wrong,
all the best to you all I look forward to hearing from you ,thanks for listening
jose x
Mazzalou
Member

Re: HER2 positive and chemotherapy

Hi there MAC123 and I'm yet another HER2+. Fancy being diagnosed on my birthday of March 7th - I found my 'lump' on March 11th 2011 with my diagnosis confirmed a couple of weeks later. I had my mx almost exactly 2 years ago now with no node involvement. I then had 6 chemos (3 FEC and 3 docetaxel) then 15 rads and 18 herceptins spread over a year - in other words the 'Full Monty'. If you are going to have herceptin ask your ONC to have your veins assessed as I would recommend having a portacath as my veins packed up and playing 'hunt-the-vein' everytime you have to have a blood test, chemo or herceptin is no fun. A port makes life soooo much easier and you won't feel a thing if you have to have one inserted. Losing my hair wasn't much fun, but it does grow back and on the plus side at least you won't have to worry about shaving your legs for a while! We had to cancel both our holidays that were booked for that summer, but our holiday insurance paid up ok. Quite personally, once I started on chemo I wouldn't have wanted to be abroad anyway, especially for the weeks when your immune system is down and always wanted to be able to get to my hospital at a moments notice.
Good luck for Thursday and my philosophy with chemo was that the sooner I started it then the sooner I would finish it. I took my treatment in bite-sized pieces ie number 1 and off the starting line, no 2 was 1/3 of the way, no 3 was 1/2 way and no 4 was 2/3 done. Number 5 was the penultimate chemo with only 1 more to go and then it was number 6 - done!
Chemo is doable, and compared to it rads and herceptin are a doddle.
I kept all my family, friends and colleagues up to date with where I was in my treatment by sending them a 'Round Robin' email every so often and I have posted a copy of this on this website. You can find it at:-
http://www.breastcancercare.org.uk/community/forums/undergoing-treatment-breast-cancer/my-journey-th...
It is rather long as the emails were spread over the course of a year, but you might find it helpful to read my account of MY journey through my breast cancer treatment. I am now out the other side and there is a life after BC although maybe somewhat different from you life before, but life is sweet so hold on tight and we will all be there when you finish your treatment too.
Take care
Mazzalou xxx

mangochutney
Member

Re: HER2 positive and chemotherapy

Pam
My surgeon told me it was "very unusual to be both hormone positive and HER2+". I do know that only 25% of breast cancers are HER2+, and, from what I remember reading on the Cancer Research UK website when they announced that BC is now 10 different diseases instead of 4, only something like 12% are positive for both.
Thats as much as I know. Not sure I want to know any more to be honest!!

Good luck
Mandy xx

Mac123
Member

Re: HER2 positive and chemotherapy

Thankyou to everyone of you for your kind and encouraging comments. I was feeling pretty deperate this morning when I posted and you've all helped me. I've seen my Onc this afternoon and start FEC next Thursday. Not looking forward to it but at least I now have a plan so onward and upward . Best wishes to all of you xxxx
Guest user
Not applicable

Re: HER2 positive and chemotherapy

Pam, there are quite a few ladies on the forum who are both - I don't think you can generalise at all about whether one type is more pos. or neg. these days! Every person's type of BC is individual - someone can start off just ER+ and end up HER2+ aswell, so no-one can say for sure.

Jen

Pammyx
Member

Re: HER2 positive and chemotherapy

I am the same as you I have the same attitude ie throw everything at it and not have the cold cap. Can I ask how unusual is it to be hormone positive and her2 and is it considered to be positive rather than negative . Many thanks PAm
mangochutney
Member

Re: HER2 positive and chemotherapy

MAC123, like you, I was also diagnosed on March 7th!!! But in 2011!! I had an 18mm Grade 3 tumour that was ER+8 and PR+7. I had no node involvement but then they dropped the bombshell that it was HER2+. After telling me initially that it was "very unusual" for it to be hormone positive AND HER2+.
I had everything they had in their arsenal to treat it! And I have no regrets at all. Like others have said, I won't have any regrets that I didn't give it my best shot.
HER2+ tumours are known to be more aggressive, so take everything they offer you. Also, Herceptin is only licenced to be given, when given in conjunction with chemotherapy. I had 3 FEC and 3 Taxotere. I started the Hercepwith at the same time as the Taxotere.
I was devastated when I lost my hair, as most of us were/are. But I had a great wig and lovely scarves etc. so it is bearable. I didn't bother with the cold cap as I wanted the chemo to bathe every single cell and blood vessel! I didn't want any of them shut down with the cold cap!

wishing you the very best of luck with everything
Mandy xxxx

Lola65
Member

Re: HER2 positive and chemotherapy

Hi,

I was diagnosed December 2012. 15mm tumour, lumpectomy, clear margins, clear lymph nodes, no vascular invasion. A stage 1 cancer. However, it was HER2+++ after a second test. Any HER2+++ is aggressive and needs sorting with everything that can be thrown at it, in my opinion. Herceptin is the wonder drug that had to be fought for only a couple of years ago because it is so expensive. It has to be given with chemo or it doesn't work properly, which is a shame, but there it is.

I have just started on this journey. I had my first loading dose of Herceptin yesterday, and my first chemo today (Docetaxel and Carboplatin) which I will have once every 3 weeks for 6 cycles. The Herceptin is once every 3 weeks for 18 cycles. I will have my rads after my chemo and continue with the Herceptin.
12 months and a bald head is a price worth paying. I had my hair shaved a couple of weeks ago in readiness because i didn't want to put myself through the cold cap treatment and didn't want the trauma of it all falling out from being long. I am now used to it being a number two cut, and love my wig.

Your Oncologist is the one who can show you your own personal statistics as to how much benefit you will get from chemo, herceptin and rads, or one or the other. It will be your choice, but for me it was a no brainer. My chances of it not recurring in 10 years were increased by 17%.
MrsSloth
Member

Re: HER2 positive and chemotherapy

Hi Mac,
I was diagnosed in March 2010, originally triple negative but biopsy showed HER2+, no lymph node involvement so I had lumpectomy, then FEC-T for 6 treatments (FEC at 75% and T at 100%), then started Herceptin and had radiotherapy. However my Herceptin was only for 6 months as I was on the Persephone project to see if 6 months is as effective as 12 months, normally it is for 12 months, every 3 weeks.
I cleared my diary from March - December for treatment, but was able to do evening/days out quite happily apart from the last couple of months of chemo (I had a problem with steroids, sadly, which complicated things). We did have a weekend away 6 weeks after my surgery, for our wedding anniversary and for me to see Stereophonics in concert (one arm protecting my breast, one arm in the air!), however my team were more than happy to accommodate treatment around any longer holidays if I'd had them booked.
No, chemo isn't nice, but with a mix of anti-nausea tablets, mouthwashes, painkillers (for mouth and tongue ulcers) and a over-reliance on mashed potato (with cheese, with curry paste, with margarine....), and lots of comedy DVDs, I got through it. Radiotherapy was just tiring (and a bit of "sunburn"), Herceptin I reacted against so they had to slow down subsequent doses and give them over 90 mins instead of 30, I just felt a bit fluey on the day.
But then I reacted to everything, I was queen of making a drama out of a crisis! Have just had my third year mammogram and waiting for results. Last year was no evidence of disease (NED).
All the best,
Evelyn

Guest user
Not applicable

Re: HER2 positive and chemotherapy

Mac123
I'm ER+ and HER2+
I've had m/x, ANC, TCHx4, and rads x15 start 29th Apr. I will continue with H(herceptin) for a year.
You've been diagnosed ER+ and HER2+. Regardless of lymph node involvement, if you're HER2+ then chemo/Herceptin is recommended as HER2+ cells are more aggressive than ER+ cells. HER2+ responds to Herceptin, but can't be given without chemo. Th ER+ cells will probably be treated with hormone therapy after chemo - I will start on that after radiotherapy.
Like KahrenQ and Mejane said, discuss planned holiday with your onc. now, because once you know when your treatment dates are, you may still be able to go, or rearrange.
Jen.

Mac123
Member

Re: HER2 positive and chemotherapy

Thanks Mejane. I must admit losing my hair is one of my biggest worries and i'm going to ask my Onc about the cold cap. Sopunds a bit insignificant really worrying about hair loss given the long term picture. Some would argue its a small price to pay No one has discussed whether my HER2 result is borderline or not so I will ask that when I go to hospital. Thanks again x
Mejane
Member

Re: HER2 positive and chemotherapy

MAC 123 - this is exactly the same as me! I was initially told just radiotherapy, my HER results were not back from lab when I saw the ONC to discuss my pathology report. The ONC did later contact me to say my HER results were borderline, so they weren't at that point sure chemo and Herceptim would be recommended, so it probably wasn't so much of a shock for me. But when i was offered finally chemo (Adjuvant FEC 75 x 6) followed by rads, then by 18 Herceptim injections, then hormonebtablets for 5 years - I was really upset - and shocked by the length of the treatment. It will take about a year or so to complete.
I then took 24 hours to think about it and when the ONC went through the benefits of the treament (I'm Cancer- free now, I had no lymph node involvement and a 2 cm lump, resulting in lumpectomy in Nov 12) the treatment would mean the chances of a recurrence was significantly reduced with having chemo, rads and Herceptim together, so it was a no brainer for me and I decided to have all the treatment offered. I am doing it because I want to throw everything at it now and know that whatever happens in future, I will have given it my very best shot - and couldn't have done more. Also I have basically said that this year any activities/ trips etc. will be planned around my treatment - it is only year and I have not booked any holidays or anything much. Once rads is over ( end July) then I will think about a holiday.
You still may be able to have your celebration trip - if you speak to your ONC they may be able to be flexible with dates. Worth asking.
I am now 24 hours post Fec 4, and two thirds of the way through chemo. I was terrified of having chemo, it was my absolute worth nightmare, but whilst some of the side effects for the first few days aren't exactly a piece of cake, they are so much less than I expected and all manageable. I am lucky to just get very tired, little energy, but no sickness, the meds seem to work to stop this. So it's not so bad once you get started on the treatment. You might also want to try the cold cap, that also has helped me a lot, I have kept my hair - so far - and this is also helping me through.
I wish the best of luck with tour treatment. Honestly, it's not so bad once you get on with it! It's the waiting around for it to start and waiting for path results that were the worst time for me. All the very best. XXX 🙂
Mac123
Member

Re: HER2 positive and chemotherapy

Thank you Kahren, thars's really helpful. I think its the unknown thats the worse thing at the moment. I'm seeing the Onc this afternoon so hopefully will get a treatment plan then maybe will feel a little better. B
Mac
Guest user
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Re: HER2 positive and chemotherapy

I was diagnosed in May 2011, HER2+ with no node involvement. I have had an mx followed by 3xFEC, 3 Docetaxel and started herceptin with the docetaxel. I have now had 9 out of 18 Herceptin. As the margins were clear I have not had radiotherapy.
I did ok on FEC, lost hair but with the drugs they gave me the other side effects were well managed. Docetaxel hit me far harder, including an instay when I got an infection. It seems each woman has a different experience though. I finished chemo in November and returned to work in January. I now have some hair. I still have tingly fingers and toes and my nails are awful but in myself I think I am nearly there, just get a bit tired sometimes. I can't say I have any problems with Herceptin at all. Sometimes my joints ache for a couple of days after the infusion but paracetamol deals with that.
I would guess your travel might have to be postponed, I would ask the onc. The chemo is do-able and herceptin is easy in comparison. Both are better than the consequences of not having them! It is the unknown that is hardest. You always have what if days, what if it comes back, what if I have problems with my heart etc but they get less and less. My heart is monitored and I am checked for reoccurence - all I can say is so far so good.
Get support from people going through it at the same time on here, it really helps not to feel alone. Remind yourself it is all temporary and take each day as it comes.
I remember the fear and it is the worst bit. You will do it though, with the support of some great staff and friends and family. PM me if I can be of any help and hugs and best wishes.

Kahren
Mac123
Member

HER2 positive and chemotherapy

Hi, i'm new to this and am feeling pretty desparate. In a nutshell, I was diagnosed with breast cancer 7th March, had lumpectomy on 11th March and follow up appointment with breast care surgeon 20th March. Was told there is no lymph node involvement and cancer is hormone responsive and though HER2 results not available at that point, was told unlikely this would be positive so looking at Radiotherapy. However, received HER2 results yesterday and its positive so now looking at chemo and Hercepin. Am absolutely stunned and dread the thought of chemo. Also, we have celebration family holiday booked beginning of June abroad so am thinking this will need to be cancelled. Has anyone else had experience of being HER2 positive with no lymph node involvement? Just looking for some advice please