Newly diagnosed

I finished my 6 rounds of chemo on Australia Day this year and am now doing radiotherapy - done 12/30. I did quite well through chemo until session 4 when 8 got neutropenia. It's very important to monitor your temperature so a good digital thermometer is a must - temperature goes above 38 then take yourself off to hospital - I spent 5 days in there. People who visited the house had to wash their hands when they came in, no one could visit if they were sick and everyone had to use antiseptic wipes on the toilet seat after use and only flush with the lid down. I didn't have any nausea but I did find it difficult to keep hydrated as everything tasted of salt - no metallic taste just salt. I haven't drunk tea, coffee, coke, alcohol since October last year and my mouth is still very dry so still using Biotene. I changed my toothbrush every time I had chemo. No probs with teeth. Other tips include wiping shopping trolley handles and ATM buttons with antiseptic wipes before using! I felt like I had OCD but it had to be done :) Paw paw cream and organic panty liners were very useful as got very sore down below. Took care of my finger and toe nails by using a protective top coat and non acetone nail polish remover and always wore gloves to wash up. Nails have got the white lines but at least they didn't break or fall off. Baby shampoo and moisture head with sorbelene or similar. My hair is growing back - have peachy fuzz at mo, eyelashes and eyebrows are back but need tidying up. All the best chemo is not much fun but doable xxx

Hi there, I live on the Gold Coast and also have Triple Negative. I am almost through chemotherapy and whilst it hasnt been pleasant, I have managed quite well physically.

I know quite a few TNBC ladies on the Gold Coast as well as others with Hormone Positive BC. I would be happy to support you through your journey.

Mandy xxxx

ps I have gone private but to be honest I believe the ladies going through the public system get better support than I do. They are getting excellent care and access to a lot more ancillary services.

Hi there, I live on the Gold Coast and also have Triple Negative. I am almost through chemotherapy and whilst it hasnt been pleasant, I have managed quite well physically.

I know quite a few TNBC ladies on the Gold Coast as well as others with Hormone Positive BC. I would be happy to support you through your journey.

Mandy xxxx

ps I have gone private but to be honest I believe the ladies going through the public system get better support than I do. They are getting excellent care and access to a lot more ancillary services.

Hi Belmckenna, Thank you for the very helpful tips. I'm due to have my last chemo on Friday (AC) but it's not too late for me to take note of some of your sound advice, especially regarding changing my toothbrush which I had not thought to do. I also never thought to mix salt and bicarbonate soda, just using one or the other. It all makes good sense. Will heed your advice re napping during my rads. We have a 2 hour round trip every day so will probably need it! Good to know you are back at work feeling well. It gives me inspirational hope that there is light at the end of this presently dim old tunnel. Thanks again, Vebe

I am now 9 months after all of my treatment, but I just want to wish you well with all of your treatments.  This is my help for Chemotherapy and I hope the best for you.  I have gone back to work after a year off.  I am not on any medication, and feel well.  So aim for health and try to remain positive. Lots of deep breaths, and get ready to make lots of new friends.  I highly recommend any support groups, and face to face meetings via the Cancer Council.  Try to attend free things through them, eg free pilates, free swimming, free massages, free seminars, morning tea groups etc.

Drink 2 litres of water every day especially 2 days before, the body doesnt rehydrate instantly on the day.  Drink lots of water.  Learn how to handle worry, it is vital.

PRODUCTS RECOMMENDED FOR CHEMOTHERAPY SIDE EFFECTS

 

To help along the way with side effects:

Mouth/Tongue

• Calypo Icy poles (the mini ones) - I have found these great for my VERY sore tongue.  Or make your own natural cubes in an ice tray (these are full of sugar otherwise)_

• sore sore tongue.: mix 1 tsp bicarb with 1/4-1/2 tsp salt in warm water, mix to dissolve and gargle as often as you can, this really helped...

Ulcers:  sm33 gel

I have found to try to keep things under control and my mouth as safe as possible I do the following:

- I change my toothbrush EVERY cycle of chemo, so every 21 days - I throw my old one out the night before chemo (when i finish brushing my teeth);

- I use soft manual toothbrushes only  Grants toothpaste is natural

- I rinse my toothbrush in hot water before and after use or (mouthwash will kill the germs).  If your toilet is in the bathroom, put your brush away in a cupboard

- I rinse my mouth every night after brushing with a solution of 1/2 tsp salt and 1-2 tsp bicarb in HOT tap water, until it dissolves, and then add cold water before using, to make it palatable). I Rinse my mouth, 4-5 times, thoroughly and gargle to kill any upper throat germs 1-2 times, then rinse in cold tap water;

Biotene mouthwash is great, the gel for the dry mouth was aweful

Rinse mouth after food (I flossed too, with the ribbon floss, and had my teeth cleaned and check before Chemo)

Avoid dental issues by doing this

Creams/hands etc:

• Vitamin E liquid capsules - I use these on my scars, simply pierce one capsule and rub the contents on your scars (once they have healed of course), it works great, and is VERY low allergy, sorbelene cream is cheap and works.

• Hamilton skin active Urederm cream which I put on as often as I can during the day to counteract the washing of hands and to stop them drying out, it really does help.  (also a great face cream for dry skin)

Feet & Toenails

• Heel Balm Gold and my socks put on every night before bed

• Nail hardener  Dr Lewinns  REVITANAIL or Manicure Intensive Nail apply it as recommended (every day for 3 days, then remove and reapply for a total of 14 days and then repeat). I do this beginning about 3-5 days before chemo and continue until the 14 days are up. This is supposed to help stop the taxotere from damaging the nails (and so far so good - no sign of nail damage).

• Sorbolene & Glycerine moisutriser - I slather my body with this after my shower, to keep my skin soft and supple and prevent dryness etc and it helps my chemo rash too (I seem to get a red spotty rash after chemo - sort of look like little red pimples of something).

Hamilton, Dermaveen, Pharmacy Care, all the natural ranges, and Goats Milk are brilliant

• My gloves, I have gloves everywhere I have to put my hands in water; near the garden should I decide I have energy to pull a few weeds, etc. etc.

Especially before handling chicken. 

General:

Sterilize the toilet seat after every use for first few days.

Carry a hand sanitizer and avoid public places, or swimming pools for first week or 2 following chemo

• Keeping a side effects diary in a word document each day - Made life easier for my oncologist

•Ginger helps with nausea.  Tell your doctor or ring a nurse, if you’re feeling too sick.  You should be given adequate meds though.

• Napping – is vital all the way through especially during Radiation.  I was warned that those who “Soldier On” often relapse.  Allow yourself consistent naps.  I was going to bed around 3 hours per arvo, but everyone’s different..

• Extra chewing gum to help with that dry metallic mouth while on chemo and had made my teeth so nice with lack of plaque that my dentist now makes favourable comments - it means I get both a clean mouth & sweet hit to my mouth.  Sugar free sweets from chemist

Grapes and fresh fruit, an alkaline diet, is what I followed

• Sparkling plain mineral water with lemon or lime and ice, for when I could not tolerate the 'taste' of tap water due to wacky taste buds

My 'Chemo Kit' –

coloxyl (for constipation), sm 33 or bonjela, carb soda, nail polish, paw paw cream, panadol, nilstat, (mouth drops) biotene mouth wash, soft toothbrush,  Grant’s  toothpaste, cotton night caps, hand cream, sugar free sweets, ginger beer, sparkling mineral water.  Panadol taken consistently every 4 hours, only 8 per day.