HER2+ and need some buddies

Thank you so much for sharing and for the hugs!
It’s so surreal but amazing to know how much support is out there!
It’s reassuring to know the anxiety shouldn’t last for long!
Huge hugs back! X


It certainly is one big and supportive community. The saying is ‘Welcome to the club that you never wanted to join, but which has the best members’. Ain’t that the truth. X


Dear @hhad, me too: please consider yourself virtually hugged. We are all here to support you. I have to say for we Her2 +ve folk the treatment journey, it seems can be one of the longest. It’s definitely a marathon and not a sprint!

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Dear All, I probably should start a new thread, but I have such lovely friends here I thought I’d ask you as my preference.

We all know that our immunity is battered during chemo and the medics measure its recovery by doing blood tests and counting white blood cells. But, what about all those lovely antibodies to every cough and cold going that I’d built up over my 60 years of life? Are they killed off by chemo too? I was one of those people who rarely caught the office cold or bug when it was doing the rounds. My family more generally too. But now hubby and I clearly got a virus just before and over Easter. He recovered and I was just about kicking the back of the cough when another one has landed - sore throat, running nose & cough etc. There’s no fever but I feel more rubbish than many chemo days. Of course I’m still on the Phesgo, but I don’t think it’s that?

Any thoughts…

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@suedot Makes total sense to keep all us HER2+ves in one place as we can all share and compare. That’s a very good point you make re antibodies. Do we lose them through chemo? I’m going to ask my oncologist when I see him next which now isn’t going to be until Thursday 9th May but I’ve put it on the list.

I’m really sorry that you are still going through the mill after you have finished the bulk of the treatment. That’s a bit rubbish. Would help if the flipping weather would warm up.

I have finished my EC (YIPPEE!!) and have had my first of 12 Paclitaxels which seem to be easier than the EC so far. I even got to go to Sissinghurst Castle at the weekend which would have been unthinkable just 3 days after EC. I also had my first Phesgo injection on Thursday. I felt that was quite a milestone.

Love to everyone and I’ll let you know what my oncologist says re the antibodies.


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Hi @salbert if it helps, this is what I’ve read: After chemotherapy, immune system recovery may be slower than believed | Fred Hutchinson Cancer Center.

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And @salbert great news that you are coping so well on the taxel regime so far. I remember Sissinghust from a school trip many many years ago!… like last century :grinning:

Thanks @suedot That’s interesting. I may not rush back to the office. I think staying working from home may be the way forward to give the immune system time to repair.

I’m 53. Quite sobering to realise that anything I did in my 20’s was last century!! :grimacing:

Hi all, I was diagnosed last September with a 15mm stage 1 grade 2 HER+ er+8 pr+8, no lymph node involvement. Had lumpectomy but was advised by my oncologist that as statistically having chemo and Herceptin would only benefit me by 3% and weighing up all the side effects including I was told would definitely loose my hair just to have radiotherapy and letrozole. I am now worried that I really should have had the chemo and Herceptin. Has anyone else opted not to have it?

Hi @sue2
As I had lymph node involvement, chemotherapy and Herceptin were a definite for me. However, I was told that if I hadn’t had lymph node involvement then I would have just had surgery and radiotherapy.

I was HER2+ but hormone negative.

Are you able to get a second opinion at all? I was not happy with my original team so I switched to Royal Marsden.

I would also recommend calling the number on this website as the Breast Cancer Now nurses are really helpful and knowledgeable. They may well be able to put your mind at rest.

Salbert x

Hi @suedot

I’m on Herceptin and the information I was given states that it can lower your immunity. You have two antibodies in Phesgo so would possibly explain the cough and cold and taking longer to get over it.

I’ve just had my Covid spring booster and was eligible for the Shingles vaccine 2 parts 2 months part (most people have them 6 months apart but was advised I’m still consider immune suppressed- chemo finished in December).

Take care :smiling_face_with_three_hearts:

Thank you, thats really helpful. I have a phone appointment in May so will try and get more information then🙂

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Great news that you’ve started the Paclitaxel and that you feel so much better than with EC. The chemo is cumulative so over the weeks it will take more of a toll.

I had 12 weekly Paclitaxel and the first 2 weeks were ok, then I had an allergic reaction, 8 weeks got infection, ended up in hospital for 6 days, reduced dose again for last 4. Don’t panic, just a warning that you could feel worse. It may not be the same for you.

Take care :smiling_face_with_three_hearts:


Welcome to the group.

How are you doing? Did you get your treatment plan?

Hopefully getting your plan will ease some of your worries.

We are all here for you. Check out some of the chemo starter groups as I found then really helpful to read to get a feel of what to expect on chemo (even though there are many different regimes)

Here are some useful links from BCN, maybe checkout the younger women’s group.as well.

  • Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
  • Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
  • Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
  • Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.

Thinking of you :smiling_face_with_three_hearts:

Hi Sue2,
I can relate to your message; I was diagnosed in June 2021, 9mm IDC, stage 1, grade 2 and 40mm DCIS. No lymph node involvement or vascular invasion. I had a mastectomy and prescribed Letrozole for 5 years. When I had my histology results, they were still waiting for the FISH test to determine whether I was HER2+ or negative. They said they were expecting it to be negative and even if it was positive, they wouldn’t change the treatment plan of just Letrozole after my mastectomy. The FISH test came back a few weeks later as HER2 positive. I was very anxious about this as everyone you read about seems to have chemotherapy/Herceptin for HER2+. I had 2 second opinions and query it every year at my annual check and go through it all again. I endlessly trawled all the forums and came across a few others who were in the same boat and equally as anxious! I was very worried I was being undertreated and struggled to take on board that being overtreated would not be in my best interests. There are so many others factors that are involved in making the treatment decisions though. I was 57 at diagnosis and now I’m 60. My last mammogram at Xmas was clear which marks 2.5 years since diagnosis. I think it’s definitely worth getting a second opinion even if it just gives you more peace of mind. x

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Hi @sue2

Welcome to the group.

I am bi lateral (both) with no lymph node involvement grade 2 2cm er+ HER2 + and grade 1 9mm er+, I have had lumpectomy, chemo with Herceptin (I’ve had 11 out of 18) zoledronic acid and Letrozole.

I also thought everyone with HER2+ would have chemo with Herceptin. I was 54 when diagnosed. I would contact your team and ask for clarification or ask for a second opinion.

I would also suggest calling BCN nurses for their advice.

  • Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
  • Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.

Trastuzumab (Herceptin) | Breast Cancer Now.

Take care :smiling_face_with_three_hearts:

@MoonAndWaves that’s interesting to hear that you also were just given the surgery and radiotherapy. One thing I am learning is that different Health Authorities and consultants do things differently from each other. I am so glad I switched as another thing I discovered last week is that at Royal Marsden they do chemo before further surgery for HER2+ cancer that has reached the lymph nodes. My original team were still doing more and more surgeries and my consultant would not agree to move onto chemo. Again, REALLY glad I got a second opinion and switched. I’ve been told by my current consultant that there is no rush to do the surgery as all I have left is DCIS which may be dealt with by the chemo. So glad to hear that you are clear 2.5 years after diagnosis. Great news!

@sue2 That is heartening that MoonAndWaves had a relatable experience and is clear 2.5 years later. But still, second opinion cannot do any harm.

@naughty_boob You are always the best when it comes to having the relevant info to share. No wonder they made you a Community Champion. I was hoping you’d provide all that! :smile: I’m prepared for the Paclitaxel to get harder. I really hope I don’t have to go through what you did, though. That sounds horrendous. I’m determined to have my Eurovision party though. Even if I have to do it from my sofa! I actually went to Liverpool last year and it was amazing. It’s the same 4 of us every year and I can’t bear the thought of missing it. I’ve been hooked since Save Your Kisses For Me so some of you will be able to work out exactly how long this obsession has been going on for!

@hhad How are you doing?

This time tomorrow they’ll be putting that horrid cold cap on my head again. :cold_face:
Still, I have hair. I’m looking a bit like Paul Whitehouse when he is one of the Old Gits in the Harry Enfield show but I’m clinging on!! Every day takes me nearer to early July when I can grow it back again. I’ve attached a pic for reference.

Love to all my buddies,


Hi @MoonAndWaves

Thank you for commenting. It must be a relief to @sue2 that you were in a similar situation and remain clear 2.5 years later.

Take care :smiling_face_with_three_hearts:

Hi @salbert

I had to look twice at that photo :stuck_out_tongue_winking_eye:

You’re doing great. It’s so good that you got that second opinion. BCN have a service pledge and work with trusts to improve services for patients. They talk to patients and healthcare professionals and put in place a plan for improvement. They also follow up the trusts to see how it’s going. Hopefully with all their great work there won’t be a post code lottery.

Take care🥰

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Hi all

BCN are running a forum users survey, if you have the time here’s the link

Thinking of you all :smiling_face_with_three_hearts: