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

23 Replies

Payne
Member
8 years ago
Hi Mischa, Welcome to this site and sorry for your diagnosis. I was diagnosed late October 2016. Grade 3 Stage 11A Her2 pos EP negative. Lumpectomy R) and total axillary clearance. 2/17 positive lymph nodes. Surgery first then 3-4 weeks later chemo. Docetaxol and Carboplatin with Herceptin via s/c. Finished chemo March and Radio in May but continue with Herceptin until mid december. I wore a cool cap so only suffered minimal hair thinning on top. I did cut my hair after first cycle as texture changed and looked dull. Day 2 till day 7 was a write off for me, so zero exercise. The rest of the time just felt incredibly weak and some bone pain, especially following the injection to boost white blood cell production and as my house is on stilts with washing machine etc downstairs, was a challenge managing stairs. Basically just had to stop after few steps and ended up bottom shuffling rest of the way. The axillary clearance affected my Range of Movement in R) arm so only exercise I did was for that. I didn't really suffer much nausea just a yucky feeling and taste buds affected. A few sips of coke (which I never normally drink) cleared palate for short time prior to eating. On treatment days I was given ice cold gloves to wear while the Docetaxol was infusing, supposed to minimise peripheral neuropathy (PN) I did develop PN in fingers of both hands after cycle 4 but has improved to some degree.The constipation was a problem but learnt to start taking movicol day before treatment and continue for next 3-4 days. After that the diarrhorea took over which had its own problems.
The surgeon and oncologist conferred on treatment and as tumor was only 12mm but with lymph node involvement, was decided surgery first and that I would only need lumpectomy. I was incapable of making any decisions at the time so was grateful for surgeons advice. Your oncologist /surgeon/radio oncologist should be able to explain your options. and then let you make a choice.

I have found this site invaluable. Best of luck to you Mischa, stay in touch.

Sue P
Zoffiel
Member
8 years ago
The cancer centre in Albury is, despite their hype, essentially a private facility. They are supposed to be making some effort to address equity of access issues so, @laureen before you get too involved with them try to make them give you some fee relief. It won't be easy and they will probably say that you will have to see one of the minions if you don't pay full fare but in your circumstances you won't find paying their usual fees (to see the oncologists) easy.
Chemo treatment is free, so don't get too stressed about that. There is a rebate to stay in the accommodation units at Albury which are run by the Cure Cancer Foundation. Oddly, I found it was cheaper to drive the 120 km each way and claim the travel rebate, but my car is on gas so not E pensive to run.
The other option is to go the GVH in Shepparton. The cancer centre there bulk bills and it is closer to you. Do not let them tell you you have to Albury, that is nonsense and part of a practice that won't stand too much scrutiny. You have a legal right to use the nearest safe facility. You will have to go to Albury for rads, unfortunately.
PM me if you want some help with this, it is connected to a little crusade I'm on--which I can't discuss at the risk of being moderated.
Giovanna_BCNA
Member
8 years ago
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.
June1952
Member
8 years ago
Hello @laureen
Have you been in touch with the Albury Wodonga Regional Cancer Centre ? They apparently have accomodation for patients and families. If they are full they do help with external accommodation at a discounted rate and they will assist you with govt funding as well. I am sure you get the travel allowance as well.
Hope that helps you
Summer :)
SoldierCrab
Member
8 years ago
Hi @laureen
sounds like it has really hit you this time..... I have put some links to help you work out what supports are available for you.
It might be good to start your own post then it wont get mixed up with this one....

Do you have a breast Care Nurse ? https//www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

Are you entitled to the Isolated patients scheme. ?
https//www.bcna.org.au/health-wellbeing/support-in-rural-areas/
https//www.bcna.org.au/health-wellbeing/financial-and-practical-support/

Hugs
SoldierCrab
laureen
Member
8 years ago
Second-time Breast Cancer the last one left breast 2005 lumpectomy, radiation, and tamoxifen this time all new to me Chemo, mastectomy, chemo then radiation. Where do I get the funds for the accommodation in Albury and travel cost I live 2hrs in Finley on a disability pension husband on carers. I started a go fund me all I got was 200.00. Have no saving due to husband lost job two yrs ago. No health insurance had to let it go what do I do. Can anyone tell me
SoldierCrab
Member
8 years ago
There is also the Encore program ... by YWCA ... it is water based https://www.ywcaencore.org.au/
Fiona2
Member
8 years ago
There are professionals out there who can help you with an exercise programme. I went to an exercise physiologist with expertise in cancer treatment who wrote my out a programme. You can get a referral from your GP for up to 6 subsidised sessions under a chronic disease care plan. i was lucky enough to have a good friend who is a personal trainer who was happy to supervise me. Some private hospitals offer exercise and gym programmes as a part of a recovery plan, though mine didn't. There are PINC physios who also specialise in supporting women through all stages of cancer treatment and recovery who may be able to help you. You could probably google these. I particularly loved getting out on my bike up and down the bike trails a few times a week. It is great that you have a supportive daughter there to encourage this part of your treatment and maybe get you going (gently) on the days where you might find it had to motivate yourself.
poodlejules
Member
8 years ago
@Mischa. Three cheers for daughters! I love body balance (tai chi, pilates and yoga mix to music) and followed it on You Tube (and skipped the hard parts ;) when I deferred gym during chemo. Gentle walks with my pooch were great too.Yoga is wonderful and any exercise can help with sleep!
Mischa
Member
8 years ago
Thanks again for sharing your experiences. It is really helpful to know what I might be facing! I am interested in exercise regimes. There seems to be good evidence that keeping fit is very helpful. How did people fit in exercise? My daughter has written out a yoga regime for me and I am under instruction to do it daily.