Her2+

Public Archive
1

hi
I have Her2+ finished chemo and rads and now having herceptin for 1 year. the more i read about how aggressive it is the more worried I am of mine returning!of mine returning even though it hadnt spread to my lymh nodes.
I understand it is protein related but do they have any understanding of why we have this type ie causes etc and any advice on helping it not to return!
Hope this makes sense.

Lisa

2

Hey Lisa, I had Herceptin for a year after finishing chemo. I had Her2+++ metastatic cells in two nodes so assumed that was why they gave it to me. I took the opposite view - that this was a kind of belt and braces adjuvant treatment, since Herceptin can be very effective at blocking the receptors on any stray Her2+ cells which might have escaped chemo. Someone else with the stats at their fingertips might be along to reassure you with the evidence but I don’t think you need to worry. Few people suffer any side effects and you should be able to carry on as normal throughout the year as I did. Good luck!

3

Hi Lisa,

I don’t have any stats etc. or tips for helping it not to return! But I was dx with secondaries in my bones back in 2002 and then spread to a number of lymph nodes in my neck, collarbone and chest which 2 different types of chemo failed to check. Herceptin hadnt long been licenced in this country, even for secondaries and my Onc checked on my HER2 status (my original dx was in 1990) and found that the last tumour in 1999 was HER2+++. I started on Herceptin at beginning of 2003 and within days all the lymph nodes shrunk and havent been seen since :). Now that herceptin is licenced for primary bc I hope that many will be spared the no. of times mine came back. I wish you luck with your treatment - it is well worth it.

dawnhc
xxx

4

Hi Lisa,

Please don’t worry. Although her2+ cancers are more agressive, and the prognosis used to be a lot worse, treatment with herceptin has changed all that. Once you have had herceptin, the chances of it returning are the same as if you were not her2+.

5

O yes, that was what I was thinking of - I also remember reading that it evens out the odds for us just as Roadrunner says.

6

Thanks for all your comments. Any ideas on the foods to avoid or eat etc

lisa x

7

Hi, I was Her 2 positive, stage 3 and 1 lymph node out of 22 involved. I finished Herceptin a couple of months back. I see 2 oncologists and they have both told me I have a low to moderate chance of it coming back in the 5 year remission period, but neither of them expect it.

I just stick to a healthy diet, plenty of fruit and veg etc (grow my own veg and salad as I have a big garden). I do a bit of yoga and meditation as well which I find helps me stay calm.

8

Morning!!

My DCIS was HER2+++ but my invasive grade 3 tumour is only HER2++ so we are awaiting FISH testing to see if I’ll benefit from Herceptin. Now, to me it feels that as I had metastatic cells in 4/14 nodes and my DCIS was +++ then ‘of course’ I’ll benefit… but with cost etc, I doubt that the oncs will se it the same way if FISH suggests otherwise… I feel a bit stuck!!

I was told that without factoring in the herceptin, my ‘cure prognosis’ ie beign cancer free & alive at 10 years in 68%… wd be intersting to see how that changed if I need herceptin… all sounds a bit dodgy to me…!!

Also, the diet thing - my onc told be ‘no suppliments of any kind whilst having chemo - we don’t want to support cell growth’ I then asked if I should therefore stick to MacDonalds for the length of chemo for simple sustinance rather thatn supporting cell growth and he was aghast (I was kidding) - ‘no,no, healthy diet’ he spluttered … but surely lots of fresh fruit & veg is fullof cell supporting antioxidents…???

My OH is researching this on line…!

Td xx

9

Hi

keep up the research would be very interested as to what he comes up with.

Lisa x

10

Hi Liza,

I asked a similar question under herceptin - why just a year? my lump was 18mm, grade 2, no lymph nodes involved and her2+. i have been worried about her2 being aggressive and returning. was reassured by 2 ladies and my onc said that if i had no treatment my prognosis was 80%, with chemo and rads upto 90% and with herceptin upto 95% that it would not return. i cant ask better than that. i now have my positive head on, as i know there are a lot of women on here that dont have such a good prognosis but are extremely positive!

sarah 41

11

HI mine was 4cm grade 3 and her2+ 21 lymph nodes removed but no involvement. Have been told there is a very high chance of it not returning.Although it was large it was an early cancer and they are seeing excellent results in early ones, have now had 4 lots of herceptin, so onward and upward.

Take Care

Mary
xx

12

Just curious, did all you ladies have chemo before herceptin?

13

I had the first Herceptin with the last cycle of Taxotere.

14

Hi toffee

I think you have to have had chemo to have herceptin,Idid.

Mary
xx

15

Mary - what were you doing up at 2 o clock this morning !

I had chemo, rads and then herceptin. I don’t really understand why we all can have it differently,

Li xx

16

Hi Liz
Warm and restless and disturbing OH so got up and had a cuppa and a mooch here

Mary
xxxx

17

yes i had the chemo, rads and now about to have 3rd herceptin, which so far i haven’t had any effects from. I am actually starting to feel more human!! Apart from the stiff legs.
L x

18

Hi everyone

Just finished last chemo and feeling relieved. I am now facing rads and also one year of Herceptin. I was told that my cancer was protein based with one micro cell gone into lymph node. At first I was appalled at the long term treatment plan, but hearing about the effectiveness of Herceptin I am grateful that it was offered to me. especiallly as I am no longer young. I have a wonderful family and lovely grandchildren who I want to see grow up. I am keeping positive about the future and visulise a shower of blessings falling upon me. I feel a warmth to all you wonderful women who are having to cope with this surreal situation. Your stories are inspirational and I recommend this forum to anyone I hear who has been diagnosed. Without it I would have felt so isolated. Love and health to you all.

love Judy x

19

Hi,
I had 6 Taxotere and herceptin together.Now carrying on with herceptin alone.
Alli x

20

Dear Judy and everyone
I eecho your sentiments exactly Judy without this site i just would not be the person i am today i have my fourth Herceptin on Monday go abroad for the first time since last August on Wednesday still Neutrapenic they are not yet sure why but hopefully will find out on Monday. Everyone that contributes to this site is so inspirational and if ever cancer had a upside this site and all its members has to be it.
Lots of love to everyone i intend to see my 2 and 4 year old grandchildren get married and the thought they may drive me around in a car sometimes, my daughters doing it has been strange enough !!!
Kate xxxxxxxxx