HER2+ Breast Cancer - Chemo and Herceptin side effects

Hi 

I had very similar diagnosis to you , but ended up needing a mastectomy, but this meant I didn’t need radiotherapy.

The low dose chemo is normally Paclitaxel, given every week for 12 weeks, so this will likely be what you have (although things do change over time) You’ll will lose your hair , unless you are able to cold-cap, and there are also other possible side effects , but you are generally not sick or as physically ill with this chemo. I found the other drugs given with it , steroids, anti-histamines knocked me out for a day , but was pretty okay the rest of the time. My nails took a battering and became infected and my toenails fell off six months after I finished. I know this will all sound probably horrendous but it wasn’t , it wasn’t pleasant but doable. Herceptin , depending on your hospital , was given with my first, 4th, 8th and last chemo , and then every three weeks for the remaining 14 doses. This can affect your heart but you will have regular scans to make sure everything is okay. 

Please aak any questions you have , my treatment finished 4 years ago so things do change so someone may give a different view of the drugs you will be offered.

Hope your second op goes okay

Jo x

Hi 

I had a very similar diagnosis to you (early stage ER+, HER2+; check out my profile for details) and also had a lumpectomy and sentinel node biopsy with no spread.  They tend to give you chemotherapy if you’re HER2+, and I had 12 weekly sessions of Paclitaxel, with my Herceptin injections given every 3 weeks alongside it.

Paclitaxel is comparatively easy to tolerate and I had no nausea or sickness.  My treatment was on a Thursday and my worst days were Saturday and Sunday where I’d spend a lot of time just vegging on the sofa or in bed.  Monday to Friday I felt pretty much normal.  The main side effects I had over those 2 bad days were tiredness, nosebleeds, diarrhoea and I developed a mild cough which took ages to clear.  The 3 days around my treatment day, I was given steroids as I had a reaction to the Paclitaxel and this made it difficult to sleep and also gave me a huge appetite!  You’ll be given information sheets on the drugs you’ll be taking which will detail the possible side effects and also a hotline number to call if you have any questions. Don’t feel worried about calling this hotline!  I contacted them most weekends for the first few weeks as you don’t know what you should be worried about or not.  They were so kind and put me at ease and contacted my team if necessary and I felt very well looked after. I also took my temperature every morning so worth getting a good digital thermometer.

One major side effect to look out for with any of the taxane drugs is peripheral neuropathy, which can be numbness or tingling in the hands and feet. Let your team know if you experience any issues however slight, and they can adjust your drugs as necessary.

With regard to Herceptin, I didn’t have any specific side effects thank goodness, though I did get acne for the first time in my life and think it might have been caused by that but it’s difficult to say!

I hope that’s helped.  Obviously you might be offered a different drug and regime, and everyone reacts to those drugs differently.  But chemotherapy is doable and although difficult at times, it wasn’t as bad as I expected to be honest.  Best of luck with your op tomorrow and for your recovery.

Loffie x

Hello Greylady

I had strongly HER2+, marginally ER+ lump of 52mm with one positive node. I had chemo, Herceptin and Perjeta before surgery to shrink it. They gave me 3 x Epirubicin and Cyclophosphamide and then 3 x Docetaxol + H&P. These treatments resulted in a complete pathological clearance, which was confirmed by the pathologists after my surgery- all the cancer had gone from the tissues removed at lumpectomy and the nodes. I have now have two really neat and tidy scars even although surgery was only about 4/5 weeks ago. I am delighted, as in the beginning I was told I would need complete mastectomy and axillary clearance if I chose not to have the chemo up front.

The thought of the chemo was pretty scary, but the actuality was not nearly so bad for me. The medical team are very good at giving the right kind of antiemetic and steroids etc to get you through. Plenty of rest helps too. They are also at the end of the phone for you whenever you need them. 

Now I am now going through treatments to stop it coming back: radiotherapy, bisphosphenate every 6 months, letrozole tabs each day for next five years and H&P for another 14 doses [1x every three weeks] over the next 9 months.

I am feeling really well now and so glad that I had the chemo. It wasn't fun, but was perfectly do-able.

Good luck and take all the support that you can get from your team. That is what the are there for. 

Hi, I am HER+ and Er+, grade 3.  I had chemo (am having chemo) before surgery.   If you look at my blog, link below, you'll get some idea if my experience on TCHP.  Honestly, I am finding it a lot easier than I expected.  Good luck x

https://community.macmillan.org.uk/cancer-blogs/b/one-life-live-it/posts/chemo-side-effects---hints-tips

Do you know the name of the chemo you are on . I was diagnosed with Her2+ early stage had 6 rounds of chemo first then a lumpectomy and 2 lymph nodes removed . cancer hadn't spread but some pre cancer cells remain. Had radiotherapy and am now on kadcyla for 14 rounds already had 3 and no side effects.  kadcyla is a chemo that also combines herseptin.  Once you know the name of the chemo we will be able to give you more information. 

Stay well

carolyn 

Hi Wallydug, how long was your recovery after surgery?   My original lump was 56mm and is now 10mm, but I won,t know about complete response until after the surgery analysis.  Your progress sounds amazing

Hello Irishgirl16, I only had a little bit of swelling around the area of the axilla dressing. This had more or less gone a week later when I had the dressings removed. I felt great after the op by the time I was back in the ward. I did the exercises twice a day every day, and found that they helped to get everything back to normal.

I am 65 years old this year and can honestly say that I have never felt better. I have had longish dark blonde hair all my life but lost it all with the chemo. However, now I dare to bare [well almost bare}. I have almost a cm of hair now and it is a mixture of light grey and dark steel grey 50-50 mixture. Painted on eyebrows with Maybelline Brow Mascara which has fibres in looks very real, eye pencil [still no eyelashes], bright lippy, dangly earrings and away I go.

I only got the confidence to do this  on realising I had forgotten to take a hat with me when I parked outside the bank. I though what the heck and went in. No one batted an eye and one of the ladies I have known for years said that I 'rocked the look'. I was widowed unexpectedly exactly a year ago. Nothing I can do will bring him back, but having come out the other side of everything life has thrown at me, I am going to grab life by the horns and make the most of every day. 

Onwards and onwards!

Good wishes to everyone, wishing you all a speedy recovery. 

Hi Loffie,

Thanks so much for your reply on Tuesday, it was very informative. I guess everyone gets different side effects so I will have to wait and see. Had my op on Wednesday and recovering well. Thanks again x

Thanks for your reply Jo. Had my op on Wednesday, feeling fine though tire easily. Will wait for Oncology appointment to hear what happens next x

Thanks for your reply, everyone seems to have different reactions to the chemo so I will wait and see with fingers crossed !