Hello ladies I am newly diagnosed with stage II, HER2 pos, E/P receptor neg breast cancer. I have been reading your posts this week and feel very comforted by the great combination of information and support. The process has been very confronting for me, but the kindness of others that I have experienced along the crazy path of investigations has been very welcome! Next week I will start on Docetaxel, Herceptin and Perjeta. I will have breast surgery after 4 cycles, and then stay on Herceptin for 1 year. I was wondering about other people's experiences with this combination - how were the side effects and any tips for treatment days? I am also wondering about making the choice for surgery between mastectomy and lumpectomy/radiation. This seems to be left up to each woman to decide. My gut instinct is to get rid of the breast tissue to decrease further risk in the future, but is this the best option from a recurrence perspective? How have others made the decision?

Hi @Mischa, I found Docetaxel a bit of a trial. I sailed through AC in 2006 but struggled with a new round of treatment this year. To be fair, I'm a lot older and second hand now than I was then.Given the responses you've already had, I'd say you are starting to get the picture that the great medical standard of 'Everyone is different' rings true. There are some things that you can reasonably expect, issues with your bowels (either concrete or pressure hose and not much in between) and changes in your taste buds. And hair loss. But apart from that, nothing is a certainty. I think a great many of the things we expect are hang overs form the time when chemo was absolutely terrible--pale wane patients chucking their guts up and losing heaps of weight spring to mind. That is not necessarily the case now. The management of the worse side effects has come a long way. Thankfully.As far as surgery choices is concerned--you really have to listen to what advice your team gives you and then balance that with what you personally think you can live with. Many of us have opted to get rid of the lot, with or without reconstruction. If you think you are going to endlessly stress about what is happening under your shirt, it can make sense to minimize the amount you have to worry about. The jury really is still out regarding the reduction in your chance of recurrence by having more aggressive surgery. Some surgeons say your chances are the same, some say it helps. I had both boobs off, and then got a recurrence in my armpit. Go figure. I will say that, given my temperament, the decision was a good one for me.Good luck, it's a shitty time, these first few weeks, but once you start to get a plan, learn some of the language and figure out who is who in the cancer zoo, things get a little easier. Marg XXX

I was on Docetaxol and Cyclophosphamide. I needed extra pre-meds or I would have a reaction. Most of the pre-meds were intravenous so no biggie. For some reason my worst day in each cycle was the night of day 5. Awful bone aches but then again I was on a special med of a needle the day after chemo to increase my white blood cells so it might have been from that too.I chose single mastectomy which after pathology turned out to be the correct choice as the other side of my breast had suspicious cells which had not turned into a tumor yet. I still have one breast which means I still need mammograms but I hope if the cancer ever returns, it finds its way to the other breast rather than stay hidden somewhere else in my body until its too late to treat.Most of my hair blew away one afternoon while walking on the beach! I figured the quicker it was gone the quicker it could begin growing back. I am 18mths post chemo and my natural hair is all back to normal now. Before that, it grew back in tight grey curls. Now its long and straight with not a lot of grey at all. Little tip when you have no hair, wear a cap in the supermarket or your head gets cold in the freezer section. :)

Hello @laureen,Sorry to hear of your second breast cancer diagnosis. You may like to call the helpline at Breast Cancer Network Australia, our phone number is 1800 500 258 and we are the cost of a local call from anywhere in Australia. We have a breast care nurse and cancer nurse available on our helpline tonight who would be able to assist you with your query regarding accommodation. The helpline is available from Monday to Friday from 9 am till 5 pm AEDST and on Tuesday and Thursdays we have extended hours and are open till 9 pm AEDST.

Thanks to everyone - there is a lot to research and look into. I am going to have the ice/cold cap (not sure which system). How have people gone with using that? One of life's ironies is that I still have my hair plaits that my mother insisted I keep when I had my hair cut when I was 12-- they are now 48 years old! Not sure if they are too old to use for a wig????I have medium long hair and my daughter suggested that I have it cut short to start with -- did anyone else do that?

Welcome and sorry you face all these difficult decisions. I can only answer in part as I did not have docetaxel but others who have will be able to comment. Dittoperjeta. I did have a year of herceptin and had as far as I am aware no side effects. It can damage the heart wall but you will be carefully monitored for this. I had no problem. I had a mastectomy, I had limited choice as the tumour was too large for a safe lumpectomy - so mastectomy or partial mastectomy. Couldn't see the point of half a breast and I have never regretted that decision. I suspect I would have chosen a lumpectomy if I had had the choice but 5 years on, I am not so sure. But it depends enormously on individual cases, actual pathology and what your medical team recommend. Ask lots of questions now rather than later, would be my advice. Best wishes.

Experiences with Docetaxel, Herceptin, and Perjeta

Afraser
Member
8 years ago
Welcome and sorry you face all these difficult decisions. I can only answer in part as I did not have docetaxel but others who have will be able to comment. Ditto
perjeta. I did have a year of herceptin and had as far as I am aware no side effects. It can damage the heart wall but you will be carefully monitored for this. I had no problem. I had a mastectomy, I had limited choice as the tumour was too large for a safe lumpectomy - so mastectomy or partial mastectomy. Couldn't see the point of half a breast and I have never regretted that decision. I suspect I would have chosen a lumpectomy if I had had the choice but 5 years on, I am not so sure. But it depends enormously on individual cases, actual pathology and what your medical team recommend. Ask lots of questions now rather than later, would be my advice. Best wishes.
iserbrown
Member
8 years ago
@Mischa sorry I can't help but wanted to come on and say Hello. I'm sure someone will be able to help. Good luck with your treatment. Take care x
SoldierCrab
Member
8 years ago
Hi @Mischa sorry you need to be here....
I had Docetaxel and couldnt tolerate it but others fly through with just a bit of nausea we are all different .. I opted for a double mastectomy with no reconstruction I was 52 now 5 years later I am (NED) no evidence of disease.
Take it easy continue any exercises that you are currently doing unless told otherwise prior to surgery.
Ask Questions
Do you have a breast Care nurse ?
Have you got a my journey kit ?
https://www.bcna.org.au/resources/
Keep asking questions on here
we get it ....
hugs
Soldier Crab
Zoffiel
Member
8 years ago
Hi @Mischa,
I found Docetaxel a bit of a trial. I sailed through AC in 2006 but struggled with a new round of treatment this year. To be fair, I'm a lot older and second hand now than I was then.
Given the responses you've already had, I'd say you are starting to get the picture that the great medical standard of 'Everyone is different' rings true. There are some things that you can reasonably expect, issues with your bowels (either concrete or pressure hose and not much in between) and changes in your taste buds. And hair loss. But apart from that, nothing is a certainty. I think a great many of the things we expect are hang overs form the time when chemo was absolutely terrible--pale wane patients chucking their guts up and losing heaps of weight spring to mind. That is not necessarily the case now. The management of the worse side effects has come a long way. Thankfully.
As far as surgery choices is concerned--you really have to listen to what advice your team gives you and then balance that with what you personally think you can live with. Many of us have opted to get rid of the lot, with or without reconstruction. If you think you are going to endlessly stress about what is happening under your shirt, it can make sense to minimize the amount you have to worry about. The jury really is still out regarding the reduction in your chance of recurrence by having more aggressive surgery. Some surgeons say your chances are the same, some say it helps. I had both boobs off, and then got a recurrence in my armpit. Go figure. I will say that, given my temperament, the decision was a good one for me.
Good luck, it's a shitty time, these first few weeks, but once you start to get a plan, learn some of the language and figure out who is who in the cancer zoo, things get a little easier. Marg XXX
TonyaM
Member
8 years ago
Hi Mischa, I had Docetaxel but not the other drugs.In all honesty, I felt like roadkill from a Mack truck between day 3-6.I found it hard going but then we are all different. I originally had a lumpectomy and radiation back in 2003 but the cancer came back in the same breast 7 yrs later(2010) so had to have mastectomy and chemo. I'm fine now and haven't had a reconstruction because of the radiation( can't have implant)The other type of recon is huge surgery. I get by with a prosthesis for now. Do all your research and ask all your questions and then do what feels right for you. There is no right or wrong and ALL bc decisions are difficult.Big hug.xx
primek
Member
8 years ago
Welcome Mischa.

I was diagnosed as stage 1 Es+Pr- Her2+ idc in December 2015. My biopsy path said grade 2 but final path was grade 3. I chose a bilateral mastectomy with immediate tissue expander insertion and change over later. I chose this due to my family history and because of my breast density my tumour wasn't visible on a mammogram 5 weeks prior finding a lump. I felt I would always be fearful. My breast surgeon actually suggested this surgery. I also had sentinal node biopsy which was negative. Although this surgery doesn't prevent metastases it can reduce local recurrence and of course reduce risks of a new primary in either breasts. The downside of course is the loss of my breasts, the sensation loss and the impact this has on intimacy so it is something that needs careful thought.

I had ACT-H chemo /herceptin combo and now on letrozole.

I was quite sick during chemo and was unable to work but was able to return once only on herceptin. My herceptin was stopped at cycle 11 due to cardiac issues which has now resolved. I was on taxol aka taxotere weekly for 12 weeks with herceptin being every 3 weeks.

I also wanted to add you to a discussion about doxetaxol. You may need to have a further chat with your oncologist.

http://onlinenetwork.bcna.org.au/discussion/comment/87177#Comment_87177

Kath x
Mischa
Member
8 years ago
Thanks to everyone - there is a lot to research and look into. I am going to have the ice/cold cap (not sure which system). How have people gone with using that? One of life's ironies is that I still have my hair plaits that my mother insisted I keep when I had my hair cut when I was 12-- they are now 48 years old! Not sure if they are too old to use for a wig????
I have medium long hair and my daughter suggested that I have it cut short to start with -- did anyone else do that?
Afraser
Member
8 years ago
Yes, cutting it very short saves a lot of grief especially with long hair. I didn't shave, but that's another option. I had a mastectomy no reconstruction and use a prosthesis, for a number of reasons I wasn't keen to have more surgery. 5 years on I am fine with that decision, but there are other options. Best wishes.
primek
Member
8 years ago
I had my hairdresser buzz mine off on day 18 as it was coming out in clumps. It was much less stressful for me. The cold cap would definetly be worth a shot and shorter hair might make that easier. I wasn't able to have that in my location.
Zoffiel
Member
8 years ago
I had a #8 clip. Prior to chemo, both times, I had waist length hair. Normal day to day shedding was enough to clog the most robust of vacuum cleaner nozzles. Just the though of great chunks of it everywhere while it all came out at once was too much. Bald isnt the end of ths world, once you get used to it.

The results for cold caps seem to vary wildly. There is only one way to find out if it will work for you. It seriously increases the amount of time you spend in treatment which doesn't suit everyone but nothing ventured nothing gained.

The thing you don't get told is how physically painful losing your hair to chemo can be. Mine felt like it was being pulled out by the roots. Much muttering while I learned to navigate the back of my noggin with a disposable razor and it was all good. The first bald shower is a life changing experience. Wow!