Anticipation

Hi Jenny,

I had 2  taxotere/carboplatin chemo (but 6 chemo treatment in all), 33 radiotherapy sessions and the 12 months of herceptin. Chemo made me dreadfully ill and I was hospitalised 3 times. After the 2nd chemo, they changed the carboplatin to cyclophosphomide for my final 4 treatments. I got every single side effect. What I would say is make sure you tell your oncologist every side effect that you get. You'll be amazed what they can do to help. I would also say that every single treatment I had effected me differently, some slightly better than others. Just because you get a side effect one time, doesn't mean you will have it again. And if unfortunately you are one of the unlucky few that seem to have a really dreadful time with it, just remember short term pain for long term gain. You will get through it. Drinks lots of water, if you can't manage anything else, lemonade icy poles are great and eat what ever you want and can manage. 

Herceptin also made me feel yucky for a couple of days but I knew about that so I just planned life around it. If you get really sick, don't make the mistake I did. I spent 4 days on the toilet with a bucket in my lap. I thought that this was the way it was meant to be. If you can't keep anything down for 24 hours, go to the hospital. I ended up being admitted to hospital for 5 days. If I had of gone sooner I would have had it sorted sooner. Don't think this is just how it is. 

I had a port inserted as my veins struggled and this made things so much easier. Accept all offers of help. I made sure I wasn't alone for the first 5 days after chemo. Get as much rest as you can but do try having a little walk every day. It helps with the fatigue. Good luck with it all. Karen xo

Hi Jenny

I'm new to this forum - have been eagerly reading all the posts but this is my first time commenting ?. I'm HER2 positive as well and have just had my last chemo today! I've had 6 cycles over 18 weeks of Docetaxol,  Carboplatin and Herceptin. Herceptin will continue every 3 weeks until July next year. I have 7 weeks of radiotherapy starting on 7 December.

Each chemo has been really different for me. The first one was pretty awful, 2nd one quite easy, but last 4 quite horrendous! I ended up getting dehydrated and being put on a drip for 3 out of 4 so my oncologist has actually admitted me straight into hospital for number 5 and again today. I stay in on a drip for 6 days and found it so much easier! I have 2 very full on boys aged 14 and 8 and found that I wasnt getting enough rest at home so side effects just got a bit out of control! I also have Irritable Bowel Syndrome and have found that the drugs have really exacerbated it! I'm not sure which chemo drugs you will be on but the Docetaxol is particularly toxic and I've struggled with constipation and diarrhoea so if you have any problems with this, tell your Dr sooner rather than later as it is manageable.

My advice would be drink heaps of water, 3 litres a day to keep dehydration at bay. Don't be afraid to tell your dr if you aren't coping with side effects. I wish I'd said something earlier but felt like I was being a wuss and just needed to suck it up.  Even if you don't feel particularly nauseous, still take the anti nausea meds as directed. A couple of times I thought I didn't need to take them but ended up regretting my decision! Try to get plenty of rest - don't think you can push through the fatigue.  The dishes,  washing etc can wait ?. Accept ALL offers of help -don't be afraid to tell people what you need help with - they wouldn't offer if they didn't want to help.  

I've had quite bad hot flushes as well. I'm only 43 so wasn't expecting that. My Dr has said this may settle after treatment finishes but unfortunately it may hang around and be the start of menopause. 

Don't Google too much!! Sometimes the info on the Internet is not correct or necessarily applicable to you and it could freak you out. Try to only follow the sites/forums suggested by your drs/breast care nurse etc.

I really hope that you get through as well as can be expected. It's an emotional roller coaster but there are lots of people to support you. Don't be afraid to ask heaps of questions and tell your Dr if you aren't coping. All the very best xx

I haven't gotten my op yet so not sure if I will be HER+ or not but since I won the 1 in 8 aussie women getting cancer stakes already, odds are I will get lucky again lol. Following for all the good tips, thanks ladies. :)

Oh thank you everyone,

See this is what I love about this network, everyone has their own story and when you read them the load just lifts because you can relate. It doesn't matter what the docs say, to hear it from the ones that have gone through the journey puts the jigsaw together.

love to you all xxxx

Cheers Jen??????

Hi Jenny, I had 6 rounds of chemo, 3 of FEC and 3 of Docetaxel. My only advice about chemo is to take the medication that they prescribe for you to prevent side effects, eat nutritional food, and keep moving. Take it 1 day / appointment at a time, and be good to yourself in between treatments. Rest up and pace yourself along the way, and most of all maintain your sense of humour and be prepared for a good laugh, that will keep you sane. Sending you a big cuddle, Trace ??????

Hi Jenny
2 CHEMO left for me, i am so excited.  i started counting down when i got to 10 more to go.  i started on 3 months A/C Chemo and then 3 months Taxol.  A/C i had nausea, but pills helped.  Taxol has been better except for rashes and bleeding nose, but all of this is manageable.  Hair loss YES at the start, it is frightening when it happens, but after a few months I ditched the wig, cos it is hot and itchy.  I crochet and knit and sew, so l made lots of berets and chemo caps.  I thoroughly recommend chemo caps made in chiffon, so light and soft on your head, great for the predicted HOT summer.(YUK)    Am also HER+ and have had 4 Herceptin to date and then 9 months following.  Herceptin is supposed to be the "wonder drug".  so don't be worried about that.  My hair, it is growing back during Taxol, i look like a baby chicken at the moment; soft and fluffy.  It is silver.  i am excited at watching it grow and what it will become.  
Jenny can i say something also, throughout my journey (I actually got 18 lymph nodes removed, no cancer found elsewhere, but chemo for me was a precaution because it must be there somewhere) I have remained positive and strong.  This must count for more than 50% of the battle,  BE STRONG FOR YOURSELF, and I promise you the time will fly.  

GOOD luck.  
G

Hi Jenny

I fist diagnosis was straight to secondary as well as HER2+, I have only one chemo left - first 3 were FEC, second 3 docetaxel, Herceptin/Perjeta.  I am not sure if Perjeta is used for advanced BC only but maybe you should ask, from what I understand it is only recently come onto the free list with medicare and works as an ally with Herceptin.

I much prefer the joint pain and tiredness that I get with the doc than the nausea, mouth dryness and associated side effects that came with FEC but everyone is different.  Do you have a port in?  I had it from the first dose and even though it can be a small annoyance at times it makes it so much easier on chemo day.

Hair started falling out as everyone predicted around day 18 but I have kept most of my eyebrow and eyelashes (thinned out), make sure you have a couple of comfortable head scarves/hats ready, I thought it would be cooler without hair but my scalp is still so sensitive to the elements whether hot or cold and having it covered actually makes things cooler!!  My hair is starting to grow again already.

You will get so much info and I think it really does depend on what type of chemo you are getting.  Good luck, I have got through it reasonably unscathed.

Kari

Thank you Jane,

That all sounds like what I was expecting, your  mind just gets to running away with things doesn't it. I'm not to worried about the hair factor, we are on a farm so I don't think the horses will worry if I'm bald lol. I was more interested in the side affects of having chemo and herceptin, I will know where I am at tomorrow after I see the oncologist. This network was the first place I came when I was diagnosed and it is amazing.

Cheers Jen xx 

Hi Jenny, I had 6 cycles of chemo (Taxotere & Carboplatin) and Herceptin for 12 months. As you will no doubt know, everyone reacts differently to chemo although most lose their hair (everywhere!), so it's important to understand the possible side effects but try not to be too alarmed at the list as you may not get very many of the issues at all, and those that you do get can usually be easily managed - just make sure you let your oncologist know asap.

Herceptin is a very effective drug and most people seem to tolerate it quite well. Occasionally it can affect your heart function so your heart is monitored closely throughout treatment. I did have a temporary reduction in heart function towards the end of the treatment, but it was managed really well by my team and within a few months all was back to normal. 

The oncology staff I had were absolute angels and happy to answer any questions or talk about any concerns I had through my treatment and I hope you will find the same. Although having any of these treatments are not up there on the fun scale they are certainly doable and there is a lot of support available as you go through it. Best wishes, Jane xx 

HI

I had two round of chemo and 12 months of herceptin. Some side effects from the chemo (no nausea or fatigue!), but individual reactions are just that, so it's hard to tell how you will go. Counting through it helped - one down , two down, halfway there, five to go and so on. I have had no side effects from Herceptin. It's effective, really expensive and BCNA was instrumental in making it available. If hair loss is likely from your chemo, prepare for it. I never imagined I would wear a wig, bit I did, it was fine and it helped me feel 'normal' . Just make decisions about wigs, shaving or cutting really short before it happens, it helps to take control of it rather than have it happen to you. It WILL grow back!

good luck