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Small HER2+

25 REPLIES 25
dclem4
Member

Re: Small HER2+

Hi Debi, by now you should be through your taxol and radiotherapy I hope! How did you cope with the taxol chemo? I had lots of weird pains but on the whole found it easier to cope with than EC as no nausea.

The last few months have been a bit of a rollercoaster and I'm glad to say I just finished my last docetaxel chemo last week, starting to come out of the side effects though still tired but I made it! I had my 1st Bisphosphonate infusion along with my last chemo and will have them twice yearly for the next three years.

Planning session for radiotherapy on Monday and then a weeks accelerated RT starting on June 16th. It seems the way forward to cut down hospital attendances is to use the results of the 10year trial of accelerated RT for early stage breast cancers as it showed no detriment to the 3 week version - I'm trusting in my teams confidence in this and it makes the travelling to get it easier too. 

Hope this finds you well and still bouncing!

Denise

dclem4
Member

Re: Small HER2+

Hi Debi yes it’s ER0 means oestrogen negative. 
Keep me updated about how you’re getting on, it’s a long road ahead but will be worth it to be cancer free. I’ll  let you know how my chemo goes. 
sending all best wishes and hugs your way too. 

denise

 

 

Give Yourself Permission
Member

Re: Small HER2+

Hello Denise,

So glad you were able to get a good explanation of why there you won't have Herceptin. I'm not sure what ER0 is (estrogen negative maybe?) but what the nurse said makes a lot of sense. I hope your treatment goes well. It's important to have peace about your treatment, and I'm so glad you have that! 

I just finished my halfway mark for Taxol. Still a very long way to go, with radiation coming after Taxol and a whole year of Herceptin. I have a heart valve issue, so I'm hoping it doesn't affect my heart function. I've been bouncing on my rebounder (mini-trampoline) to help with lymphatic movement and energy. It really has helped a lot. 

Hope your weekend is a good one! 

Lots of hugs and positive thoughts.

Debi

dclem4
Member

Re: Small HER2+

Hi debi, 

My meeting with chemo nurse went well, at last I got an explanation as to why just chemo. Because I am ER0 and progesterone negative the initial HER2+ indicated (to me) that Herceptin was a given. However the oncologist explained that Paget’s disease and DCIS sometimes stain as HER2+ and because my IDC was only 5mm in the centre of the 25mm mass she wasn’t convinced by the appearance of it and grade 2 result that it is HER2+ and may in fact be triple negative. She explained gold standard first line treatment would be chemo for both types anyway when there is no hormone involvement and I’ll have a reduced dose of Docetaxel. As I had no lymph node involvement the proposal is radiotherapy afterwards. She felt giving me Herceptin was overkill and was concerned it would cause more harm than good-I had pneumonia 2 years ago and my lungs are slightly scarred as well as my heart murmur. I felt she listened to my concerns and took lots of time with me. I now feel I have to just trust they know best and get on with the process. Hope you’re still feeling well with treatment. Have a good weekend!
hugs, Denise xx

Give Yourself Permission
Member

Re: Small HER2+

Hi Denise,

6th chemo treatment today and still feeling fairly well. I wish the same for you! Keep us updated!

Hugs,

Debi

dclem4
Member

Re: Small HER2+

Hi Debi, glad to hear you are feeling reasonably well, always reassuring that not everyone has an awful time on chemo. 
I’ve got a consultation to be fitted for my wig before chemo starts which because of Covid restrictions will mean I’ll be shielding. I think I’ll feel better knowing I have it and some headwear so I feel the best I can during treatment. 
My bcn phoned to say chemo nurse was overwhelmed at clinic due to short staffing and that’s why she hadn’t phoned me back. Promised to go through all details thoroughly on 20th. I was told that the protocols in Glasgow means Herceptin is not licensed for 5mm tumours as the clinical trials didn’t show any real benefit over just chemo at that size related to life expectancy/recurrence with clear nodes. I will investigate further on 20th with chemo nurse. 
just trying to do my relaxation and visualisation audios to be in the best headspace possible for what lies ahead. 
stay safe!

hugs

denise x

Give Yourself Permission
Member

Re: Small HER2+

Got it. I have purchased a few wigs, because Taxol almost always means total hair loss. One of the nurses said there was one person she treated that managed to keep about half of her hair, so I guess there's a chance (LOL).  If you can go somewhere to try them on, it is helpful. A couple I bought online didn't work out so well. Paula Young has good ones, but I'm not sure they ship to where you are. 

I have a heart murmur as well, but I guess it isn't that bad since they thought it was ok to go ahead with Herceptin. Let us know how you are doing! I am feeling fairly well after the 5th weekly session.

Hugs,

Debi

dclem4
Member

Re: Small HER2+

The sessions for both drugs are 3 weeks apart with 3 sessions of each drug so will take 18 weeks in total. I have a heart murmur so am going fit an ECG, might be an issue, will know more on the 20th. 
the EC component pretty much guarantees hair loss from what I d read so exploring wig/headwear loptions before I start. 
Hope you manage to keep some if it’s held on this long. 
thank you, hugs right back at you ❤️

Give Yourself Permission
Member

Re: Small HER2+

Thanks Denise,

So 3 weekly sessions of EC and three weekly sessions of Docetaxel? I am on 12 weekly sessions of Paclitaxel (Taxol) with Herceptin every 3 weeks for a year? Radiation comes after the 12 weeks. I think it's smart to ask about the Herceptin, especially if your heart is in good shape. I just finished session 5 of Taxol and I still have most of my hair, although it started falling out this week. 

Sending hugs, positive thoughts!

Debi

dclem4
Member

Re: Small HER2+

Hi Debi, thanks for all the info and advice. My chemo will be EC x 3 then Docetaxel x 3 which may have more side effects, certainly hair loss with EC but to cold cap means a lot more time in unit which I’m not keen to do. I don’t really want to lose my hair but it’s very fine and  unless there was no loss I’d probably still have to wear a wig/headwear anyway. 
I emailed the breast cancer nurse and she’s passed my email on to oncology team so will hopefully be able to ask a few more questions this week. It seems to be a lottery what you’re offered depending on where you stay and your particular hospitals protocols in the uk. I’m in Scotland and we are very lucky not to have had surgery/treatment cancelled due to Covid though there are some delays in reporting tests. My main concern was why I’m not getting Herceptin when it seems to be the drug of choice for HER2positive tumours. I will probe further as to her reasons, as long as it doesn’t affect my long term chances of recurrence I understand we, and our bodies, are all different. Will update when I have more info. 
hope you continue to do well, hugs

denise x

Give Yourself Permission
Member

Re: Small HER2+

Hello dclem4,

It's interesting, and more than a little frustrating that we are seeing different opinions for seemingly similar situations.  I was actually hoping to be able to get radiotherapy and Herceptin, but no chemotherapy, but my oncologist said they only do Herceptin when they do chemotherapy. I have since learned that many people have Herceptin without chemo.  I asked that my oncologist get a second opinion with MD Anderson as she is associated with that organization.  Their recommendation was Taxol (chemo) every week for 12 weeks, and Herceptin every three weeks, even though I have a mitral valve defect. After the 12 weeks of Taxol, I will have radiotherapy and continue with Herceptin every 3 weeks.  The stats my oncologist gave me were for the combination of Herceptin and Taxol with radiotherapy, and for radiotherapy alone. MD Anderson is very current, and I went with their recommendation.

I am doing well so far, and will be having my 5th chemo session on Wednesday. I have had 2 Herceptin treatments (the first and the 4th).  From what I've read, Herceptin is very good at stopping Her2+ cancer and there are few side effects, except for possible heart issues (which is no small problem).  

I have purchases a mini-trampoline that I put near my desk while I work for a couple of reasons:

1. Exercise is very important during chemo/Herceptin, and I hate the cold weather, and walking/running outside in the winter would just not happen for me. Also, I have a neuroma on my right foot, which makes it painful to walk long distances, and bouncing on the mini-tramp doesn't hurt it.

2. The bouncing action helps flush out your lymphatic system, which helps remove the toxins from chemo, and apparently increases white blood cell count (that is a little harder to verify) . I try get on it for 3 minutes every hour, which is pretty easy to do. 

3. The exercise on the rebounder should strengthen my heart function and help with lymph fluid buildup.

4. I really feel like it helps with the sluggishness that I feel about 2-3 days after chemo.

I think I would have purchased it even if I weren't doing Herceptin because of all the benefits I've read about. More importantly, it's something I've been able to keep up and it helps me feel better.

I still have hair after 4 treatments, but it's falling out more now. These are my side effects from the chemo:

1. Constipation for the first couple of days after chemo

2. Fogginess/Forgetfulness

3. Slugglishness starting 2-3 days after chemo

4. Extreme thirst/drymouth that doesn't go away after drinking large amounts of water

5. Minor nosebleeds

Other than that, it is a lot easier than I expected it to be.

I don't think the Herceptin is adding any other side effects that I'm not getting with chemo. I did not choose to do the head cold pack (to prevent hair loss) because of the cost/other negative issues, but I did buy hand and feet coldpacks on Amazon to try to prevent neuropathy. I put them on during Taxol.  I'm not having any symptoms of Neuropathy yet, so who knows if it's the coldpacks or just the odds. They were relatively inexpensive, so I thought it wouldn't hurt to have them. I also bought special fingernail polish to try to prevent fingernail damage, which seems to be working. It's an OPI polish on Amazon for chemo.

I would make sure you have water and snacks during chemo. At first, they handed them out, but stopped doing that. No one is allowed in with me, so a book or something to do while you are there is good. (I bring a book because the coldpacks would make it difficult to do anything else).  It takes about 1 1/2 to 2 hours for just the Taxol infusion. 

If you would every like to talk, I would be happy to do that or answer any questions (with what limited knowledge I have), but not sure how to relay contact info on this forum.

Wishing you the best - keep us updated if you can!

Debi

dclem4
Member

Re: Small HER2+

Hi Debbie, I’m really interested that your being offered Herceptin with a 3mm invasive tumour. Mine is 5mm HER2+ and I’ve been told only chemo and radiotherapy as risks outweigh benefits regarding heart damage and the %difference was way lower than you’ve been quoted🤔 I was thinking HER2+ was always Herceptin as it’s the wonder drug but am now feeling very apprehensive about having chemo, beginning to think they’re not telling me everything and can’t stop thinking about it. Chemo due to start on 27th January. 
how are you getting on with treatment? 

dclem4
Member

Re: Small HER2+

Hi Debi, 

I got my results and am HER2+ and ER- so looks like chemo and Herceptin followed by radiotherapy. I was shocked to say the least as was my surgeon who was expecting ER+ from previous results. I am stage 1A and grade 2 with no node involvement. Meeting with oncologist on 6th January for discussion on next step. Doesn’t feel like much choice though. Struggling to come to terms with this as have my step daughters wedding in June and with Covid will probably need to shield during chemo. 

dclem4
Member

Re: Small HER2+

Hi Debi, thank you, little bit nerve wracking waiting! 

Give Yourself Permission
Member

Re: Small HER2+

Hello dclem4,

I am sending positive thoughts your way for when you receive your results.

Debi

dclem4
Member

Re: Small HER2+

Hello, thanks for getting back and clarifying. Will get my results on 16th along with node biopsy results so will be better informed then🙂

Give Yourself Permission
Member

Re: Small HER2+

Hello,

My mother had a similar situation to you, and she only had radiation, and not chemotherapy. The reason chemotherapy was recommended for me was because of the HER2 positive status. I asked my oncologist to have a meeting with MD Anderson for a second opinion, and they also recommended chemotherapy because of my 3 mm invasive ductal carcinoma because of the HER2 positive status. I will also be getting radiation, but that will be after Taxol is done. I apologize for the late response. I will try to keep track of this stream more diligently. Did you find out about your HER2 status yet?

Debi

Give Yourself Permission
Member

Re: Small HER2+

Hello Lottie,

Mine is also estrogen positive. The DCIS was grade 3, and the HER2+ score is a 3 as well. I had my port inserted yesterday. It's pretty uncomfortable, but I think I will get used to it. I start Taxol on Wednesday. How about you? Have you had your appointment yet?  I am sorry for the late reply. I haven't been feeling very well, and I must have missed the email notifying me that there was an answer to this stream. Sending positive thoughts your way! 

Debbie 

whitmic4
Member

Re: Small HER2+

Hi, I did go with the treatment. I’ve just completed 12 weeks Taxol, will continue with Herceptin, then radiotherapy, then Tamoxifen. It’s a very grey area as the normal cut off point for Chemo I’ve since learned is 5mm and above. It was a difficult decision to make but I didn’t want to regret anything by not taking the treatment now. 

Lottie76
Member

Re: Small HER2+

Hi Debbie

Lovely to hear from you and glad you have made a decision.  The recurrence rate with treatment in your case seems to be quite positive.  I am still awaiting an appointment.  Was yours ER (oestrogen) positive? Mine is oestrogen positive, HER positive grade 3.
I was also thought to be high gradeDCIS until the final results but not that surprising give the size of the tiny invasive bit.

Hope your treatment gets underway soon. 

Lottie

dclem4
Member

Re: Small HER2+

Hi Debbie, I’ve just had surgery 10 days ago. Had precancerous Paget’s cells in my nipple, with a 4mm calcification that biopsied precancerous. Pathology found a DCIS with a 5mm invasive ductal carcinoma within it but all margins and tissue shavings clear. I am having a sentinel node biopsy on Monday to check if lymph glands affected. 
I have been told potentially I’ll be having radiotherapy but am waiting for rest of pathology report to check HER2 and other possible hormone issues. 
it sounds as if we have had similar cancers but I’m now wondering if they aren’t being straight with me as chemo wasn’t an option they have mentioned so far? Was radiotherapy mentioned to you? Hope all goes well with your treatment🙂

Give Yourself Permission
Member

Re: Small HER2+

Hi Lottie,

As long as my cardiologist says it's ok, I am going to decide to have 12 weeks of Taxol (one treatment a week) in combination with Herceptin. I'll be doing the Herceptin for a year.  I decided on this because my oncologist said that without the treatment, there is a 23% chance of it coming back compared to about 5% with treatment. I asked what the odds were with just Herceptin and no chemo, but she said that was not recommended. I don't know why, but I have seen online that most do the combination. 

Also, when they did my lumpectomy, they did not know there was a 3mm growth outside of the ducts. They only saw the DCIS after 2 mammograms and and MRI. So they didn't know about the 3mm growth until the pathology came back.  I am hoping that the Taxol and Herceptin will kill anything else that might be hiding. Plus, I know I would worry more if I didn't go with the treatment.

How about you? I would be interested to hear what your oncologist says. There's so much information out there and it's a lot to take in. I wish you the best in your journey. Feel free to communicate if you have any thoughts or questions. We are in this together!

Debbie

Lottie76
Member

Re: Small HER2+

Hi Debi

I am in a similar situation to you mine was also with DCIS 4mm Oncology appointment coming up - did you decide on treatment?

Lottie

Give Yourself Permission
Member

Re: Small HER2+

Hi,

Our stories are similar, except mine was a 3mm HER2+ tumor. Started with DCIS. I guess they didn't see the 3mm spot on the mammogram. I am inclined to go with the chemo. Just wondering how it went for you.

Debi

SaskiaE_BCN
Community Manager

Re: Small HER2+

Hi Whitmic4,

Thank you for posting. This sounds like a really tough decision. If you like, you can reach out to our clinical nurses for support and advice, they are available on 0808 800 6000. If you prefer, you could copy and paste this message into the Ask Our Nurses board where they can respond directly to you.

Hopefully, someone can get back to your query here in the meantime 🙂

Sending you our best wishes,

Saskia 

 

 

whitmic4
Member

Small HER2+

Hi all,

was diagnosed with DCIS, op in April, all removed, alongside for me was unfortunately 2.5mm focus of invasive. I had to wait 6 weeks for SLNB, results this last Monday all clear thank goodness. I have a meeting with Oncology tomorrow where they want to discuss Chemo. From speaking to the nurse it will be my choice. I would rather they tell me to be honest. I’m inclined to go with it as I really want to do everything I can in to try and stop it coming back. I’ve been looking on Nice for some information and found as of yesterday, due to Covid, to allow Herceptin without Chemo. I’m so worried of making the wrong choice and regretting my decision. Any feedback from anyone?