Diagnosed stage3, grade3, her2 positive

J_Nelly

A wild trifecta but I am determined to beat this as I have a young son who depends on me. This has to be the scariest journey of my life and I’ve been through a handful. 

Looking for fellow thrivers who have tips on handling chemotherapy. I start on the 27th of December and have 6 rounds before surgery. I hear protein is important and doing some sort of activity daily (short walk) to help no matter how tired we get.

Overall a lot of moments feel surreal, scary and lonely but also trying to remain present and positive. 

Suki

Hi @J_Nelly

I was like you this time last Christmas - diagnosed HR+ and HER2+, starting 6 rounds of TCHP chemo on 29 Dec before surgery.  I was 47 with two teens.

It is a crazy and stressful time, but you will get through this.  I was relieved to start chemo because it felt like I was doing something to fight back.  My tips for chemo are:
- take books, crosswords or a laptop for movies as your first session is likely to be all day (the next sessions will take less time)
- take snacks and a big water bottle
- you can move around while having chemo, just ask the nurse and take your IV trolley with you!
- consider cold capping (I didn't do it and lost all my hair, although it is slowly growing back now!)

Always check with your oncologist before taking anything, but for home afterwards:
- get Oral 7 mouthwash and spray (I had the spray by my bed and gave myself a squirt if I woke up with a dry mouth)
- get eyedrops for dry eyes
- drink lots of water (during and after chemo)
- use Hydrolyte etc if you can't stomach water
- eat mild foods (not spicy) whenever you can
- get some Sustagen if you are losing weight
- use Metamucil (I got capsules because I can't stand the texture of the drink)
- use Gastrostop if you get diarrhea
- keep up the exercise if you can 

Try to enjoy your Christmas, hug your son lots and feel free to ask any questions xx

FeR

Hi @J_Nelly

sorry to hear of your diagnosis - it’s a hard and stressful time but you will get through it!

I was diagnosed mid July with triple positive dc - same as @Suki, also 47 years old. Finished my 6 rounds of TCHP mid November and this week had my surgery.

I second all @Suki’s advice. 

I didn’t cold cap either - have some growth starting now 5 weeks post chemo. I’m probably glad I didn’t as I didn’t want to add time to the infusions but I’m sure others who have will be able to advise you better.

When it comes to exercise, walking daily (whatever you can manage) and yoga (if you don’t have a current practice gentle stretching or mindful movement) was hugely helpful. Reminding yourself to breathe is an excellent way to stay centred and helps both physically and mentally. Insight timer has free meditations.

the cancer coach I saw recommended prioritising protein and I ate as well as I could but I did find it hard - protein didn’t taste great for me - plant based was a bit better than meat based.  She also told me that at the end of the day eat whatever you feel like or can.  It’s temporary and you can focus on your diet when the chemo bit is over. 

sending you positive thoughts and big hugs xx

J_Nelly

@Suki thank you! Tips taken! I’ve bought some matcha and protein supplements to help. I’ll grab some Metamucil, eyedrops and mouth wash, then I’ll grab the rest depending on what I might need. Hugging the little one as I write this and appreciating the moments a lot more than usual. Thanks again Suki.

iserbrown

@J_Nelly

Welcome to the forum.  Not all supplements are complementary to treatment. 

Check with your team abt the protein supplements 

Best wishes 
Take care

Mez_BCNA

Hi @J_Nelly in addition to the above wonderful support, I thought to share with you some of the information we often share via the BCNA Helpline:

You may like to access BCNA’s My Journey available online. This resource provides high quality, evidence-based information which can be tailored to your diagnosis and provides insights from others with breast cancer (It also has a symptom tracker).

Chemotherapy treatment for early breast cancer
Side effects of chemotherapy
Ten tips to manage chemotherapy for breast cancer

Cancer Council
Cancer Council  also have a very good resource Understanding Chemotherapy booklet

J_Nelly

Thanks @iserbrown I did check that this one was compatible with chemotherapy but I’ll check again with my dietician and oncologist. I’ve also stopped my usual vitamin d and b6 etc for now.

J_Nelly

@FeR decided not to cold cap either as I didn’t want the additional distraction. How did chemotherapy go for you? How are you feeling with having that part done for now?

FeR

I’m very glad chemo is done! Sadly I ended up getting an infection under one of my ‘chemo nails’ and landed myself in hospital for 6 days with surgery to have the nail removed which was a real shame because I was feeling pretty good and looking forward to a week off everything before the surgery I just had😅

which is something to keep in my mind. Keep your nails short and clean and use hardner. Some people paint theirs but I wanted to be able to see if there was a problem - and even then I missed catching this one! 

During chemo I really focussed on one day at a time, walking, yoga and trying not to look too far ahead or read too much about anything to do with the cancer.  I wfh a few hours a week and was lucky to have good flexibility to do so. 

Everyone’s experience is slightly different - a diary will help you so you can map out how you feel each round. Helps you to be prepared and give info to your team if you need some help. There’s lots they can do to help minimise any side effects you might get and they want you to get through with as little impact as it’s possible to have si never hesitate to ask for help with anything.

Chemo isnt fun but is absolutely doable - youve got this!

J_Nelly

Thanks for sharing @FeR. Im so glad you are done with chemo, I started yesterday and feeling ok. Thanks for sharing and @Mez_BCNA thanks for the resources. Feeling mentally and emotionally ready! 

Tri

Hi @J_Nelly I am thinking of you today and sending lots of positive energy and thoughts your way 🌸🌻. Sorry for the experience you’re having to go through with your young son. 

So many good tips above, this is a wonderful community of people whose insights are always useful. 

A BCNA online group you might like to join is the Triple Positive Group (HER2 positive, oestrogen and progesterone positive)  https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

My treatment and diagnosis was similar with 6 TCHP prior to a lumpectomy, radiotherapy and so on.
How are you doing with your first treatment behind you?
We can all relate to a few shared experiences but I realise some people do experience the treatments differently, mine was a bit “choose your own adventure” because different side effects emerged after each treatment, in sequence and thankfully not all at once! 😃
 A tip: if you experience a burning or reddened skin like sunburn on your hands, face or feet take a selfie and mention it to your oncologist, in my case it led to a slight reduction in the dose. It’s also possible to confuse mouth ulcers with oral thrush 🙃 …
I lost my appetite and you might find that happens too. If you’re a meat eater bone broth was a help: very nutritious and a good base for soups, ramen and soba noodles.
I found a yearning for congee (rice porridge) - which a very dear friend cooked up for me ❤️- onigiri (little sushi like rice packets) and anything with mild saltiness, ginger and a bit of vinegar was appetising. 

Lamb 🐑: I couldn’t stomach the taste of lamb: lamb pies, grilled or roasted - hilarious as my husband is a sheep farmer. In fact red meat was not something I could eat much of other than chicken. Pretty random!!
Porridge with brown sugar, two fruits and yoghurt, and Sweetened cooked apple with custard were also on the menu. 
I think our sense of smell must be affected and if you cannot smell something it detracts from the pleasure of consuming it.
I found wine no longer enjoyable, still water or even tea or coffee (all “staples” prior to chemotherapy). I substituted lightly spritzed water and weak lemon ginger and peppermint teas to try and be companionable and to keep the hydration up. 

I found the treatment days not so bad as the medical team do what they can to reduce the potential discomfort. The lacklustre and fatigue I experienced set in usually about 3 - 5 days after the dose. An afternoon rest really helped.
If you have not yet had a chemo “port” inserted it might be worthwhile if, over the long haul, your team will treat you with IV infusions on the dayward. I know of other triple positive “thrivers” who had their second series of Herceptin via injection, whereas all my 6 pre surgery chemo and 11 post surgery treatments were done by IV through the port. It was inserted in my arm under GA, a short surgery, above the elbow. It was an improvement on the hunt for a vein that happened for my first two infusions.
Mask up if you’re out and about and you can tolerate a face mask- I managed to get COVID between treatments and had to go in for a couple of nights. 
Sorry for the long post, some of these suggestions might be useful down the track, as it seems to be the case that our experience evolves over the course of the 6 doses!
Big hugs and take care of you 🌻

Coastiejas

Hi @J_Nelly
Some great advice above. My suggestions to add to the above would be get in contact with a mcgrath foundation nurse if you have access to one. Also check out look good feel better lgfb.org.au for some good info/ courses etc on dealing with some of the issues around the physical and psychological effects of the treatment, hair loss etc
Keep a log of your side effects as that will help your team manage them better.
Best wishes for your treatment