HER2

Hello there, I am 59 and Stage 3C HER 2 neu positive and had bilateral mastectomy right axillary clearance (10/36 nodes) . That was 30th October. I had a reconstruction at the same time. On 17th November I had to have one of my silicone implants removed and another put in and put on some pretty strong antibiotics. Other than that I picked up OK from surgery and saw a physio weekly for four weeks to make sure my arm was working better post axillary clearance. It went really well actually. Arm working perfectly and I see a Lymphoedema nurse monthly as a precautionary treatment. None yet, but I have to have 30 radiotherapy apps yet.

My chemo was 4 rounds of AC, which I have finished and then I will have 12 weeks of Paclitaxel with the year of Herceptin. I'm getting a PICC line put in the next couple of weeks to facilitate the Paclitaxel . So far the side effects were not real pleasant first round of AC but once I got all the anti-nausea tabs sorted. Pretty much smooth sailing. Quite a bit of crying and tiredness and 5 kg weight loss. ( which wouldn't hurt, I always carried an extra 5k.) Good luck, Ria

Morning Airlie, I have a small spot in my vertabrae around the bra line.  All my nodes came back clear so I thought I was OK.  It was so small that I had to have an MRI as a double check and the latest one showed that there had been some healing after the chemo.  So who knows with the Herceptin and hormone med's it just might clear itself up!!

Do you have to travel from Gladstone, Rocky would be the closest?  Thankfully mine was every 3 weeks so I had a break from needles etc.

Have they discussed having a port put in?  With having Herceptin for 12 months it might make it a little more comfortable at injection time.  Mine doesn't worry me too much and it makes it so much better on chemo days.

I'll let you know as time goes by if I find any strange effects from the Herceptin.

Kari

Hi Airlie, sorry to hear that you are going through this too. But this network is great for finding people who have gone through what you are going through and who I have found have such great advice. 

I am HER2 positive but Stage 1 borderline Stage 2. Am doing 4 rounds Taxotere and Cyclophosphamide, Herceptin for 12 months and 30 sessions of radiation.

I have been unfortunate in that I had one hospitalisation for 6 days due to fever during round 1 of chemo and another 2 hospital visits/treatments for fevers during my second round. This has meant lots and lots of antibiotic medication through IV and tablets. I have my third round of chemo tomorrow. They have never found a definite source of infection. I have always had poor immunity even before chemo - my doctors think it's a complication from being born premature (although I am now 47 so go figure!)

To help me try and avoid infections/fevers I am using biotene tooth paste and bicarb mouthwash from the chemist 4 times a day. a lot of anti bacterial wipes (I buy in bulk from Costco). A lot of hand washing to the nursing standard (singing 2 happy birthdays and washing down to the wrist, then moisturise as your hands will really dry out - I use Moo Goo Skin udder cream for this) and use hand sanitiser (it's all over the house). I have betadine antiseptic wash (that brown liquid iodine stuff that they use in hospital) after noticing a scratch from a rose bush and have stopped all gardening. I aeroguard and am careful not to get bitten by mosquitos in case I scratch and get an infection. Nail brush also gets a workout. I only drink bottled water (as suggested by the hospital because of my high risk). I wash all fruit and veg and try to eat as healthy as I can. From now on if I have to go to the doctor at anytime during chemo I will wear a mask. As all my fevers start with a sore throat I am now sucking antibacterial mouth lozenges and have another antibacterial mouth wash on standby as well which was suggested to me from other wonderful ladies on this network.

My oncologist prescribed Neulasta injections to boost my white blood cells and neutrophils that has helped to minimise the time I am actually IN the hospital.  

When I ask my oncologist why I keep getting fevers she tells me it's probably viral which I can get through the air. Now I have decided to stop working to see if I can get through a cycle without these problems.

So I guess I am doing everything we can think of to stay as healthy as I can. But we'll see what happens with cycle 3. I hope your anxiety over germs can be kept under control. Be reassured there are treatments if you get sick. The oncology staff are exceptional at taking of chemo patients so don't hesitate to call them about your concerns once you start chemo.

Take care and keep in touch ----    Nadine

Hi Kari,

Wow you are very young.  I am 56. 

I live in gladstone and the heat here has been dreadful lately. Very humid. 

Sorry to hear about you having secondary. Can I ask where.  I have had CT and Bone scans and cardiograph last week.  That's always in the back of my mind, has the damn thing spread.

Chemo drugs are Epirubicin/Cyclophosphamide.

Paclitaxel/Herceptin.

One lot will be every two weeks for 4 sessions and the other every week for 12 weeks and the Herceptin will go for a year I believe.  I see the onco nurse this Wed.

I had a bilateral mastectomy and have go back to surgery to get all the nodes removed from the right side.

Thanks so much for your message and I hope we can keep in touch.  Best Wishes to you Kari.

Airlie X

Hi there, I am stage 3 and HER2 positive (but also secondary).  I finished chemo in November (6 treatments, 3 weekly) with herceptin/perjata continuing for 12 months.  I haven't started hormone medication (starts after radiation is finished in a couple of weeks).

Compared to the stories I hear from others, I breezed through chemo (probably helped that I have teenage step kids who as typical teenagers are pretty self absorbed and kept me busy).  Not sure what your program is but I have 3 x FEC and 3 x Docetaxel/Herceptin/Perjata.  I found docetaxel easier only because I preferred the bone aches to the nausea feeling.  

To be honest, I thought chemo would be the worst but I am struggling with radiation.  Not sure if it is just my skin or because I have larger breasts and live in the tropics, at a different time of the year it might have been a better experience. 

If you are located in Nth Qld and want to ever catch up for a chat just let me know (I am 43, Townsville based).  

All the best and hope it isn't nearly as bad as you are imagining.

Kari

Hi Deanne, Thanks for your reply.  So good to have a chat to someone who has been there and can offer advice.  It has been a huge shock to me and the family, same as everyone else.  Airlie X

Hi Airlie,

I was diagnosed with Stage 3 (but not HER2 positive) Breast Cancer almost 3 years ago. I had Chemo over an 18 week period and can fully understand your anxiety about germs and what is ahead of you.

Chemo was not exactly what I expected and I was actually very fortunate to have not too bad effects for the first 3 rounds. The second type of chemo was harder for me but everyone is different.

Germ wise I used a lot of hand sanitizer. I even had some for visitors to use! Your oncologist and the chemo nurses will let you know when the most critical time immune system wise will be for you. I pretty much avoided crowds for the whole time I was on chemo.

The most danger from germs though is actually from the bacteria you have in/on your own body. So frequent hand washing, frequent rinsing of your mouth with salty water (and I found Biotene mouthwash and toothpaste was excellent). I changed toothbrushes each round too. So generally just be really particular with your own personal hygiene.

I hope that you find, like most of us do, that the time actually goes really quickly. You kind of get into a bit of a routine with it all. This site is great for info and just to chat with others who are or have been right where you are now. Wishing you all the best for your surgery and then the chemo. Deanne xxx