Tips for Chemo and Radiation

Hi @pv123 good tip! 

@shs14 - Your tips for chemo and radiation are spot on, thank you for taking the time.  The only thing I might add for anyone starting chemo is to check with the oncologist if you are taking any medication or any other complementary stuff as these may interact with the chemo.

Can I also ask you @shs14 about your tips for herceptin in a private message if you don’t mind.

shs14 said:

Last year going through chemo I wrote down things which helped as I went through treatment to share with three friends coming behind me. Some is advice I got from other patients, some from doctors, some from nurses, some from online. Now I'm out the other side I've been meaning to post it here in case it can help someone else. 

If you are starting chemo just know you will get through it and its often not as terrible as you think it might be. Stay positive, moan when you want to, it will end eventually! 

Also I would love it if anyone has their own tips to add. (I recognise these are specific to me and may not be right for everyone.)

CHEMO

1. Walk everyday. Try for at least half an hour a day. Try and make someone you love come with you. I found it so good for limiting side effects, it is my number one tip! And becoming recognised by cancer researchers around the world. Watch the Catalyst special on ABC. Its good for the anxious brain, good for your emotional and physical health and if you can debrief with someone as you walk even better. Walk everyday, even chemo days. You will feel like a warrior! 

2. Get a port. You can try without but if you are having 16 infusions like me you will be glad you did it, and your nurses will love you. And get it before you start chemo. It hurts the first day it goes in but gets better quite quickly.

3. Use Emla patches on your port before chemo. They numb the site. I just asked for them from the nurses each week. Set a reminder to put it on one hour before. The only week I forgot they placed the needle three times before it worked, yikes! I use them for Herceptin injections too.

4. If your port doesn’t work try stretching your neck up and coughing to get it going or raising your opposite arm. Nurse tips.

5. If you get a Neulasta injection for after AC take Claratyne for a couple of days with it as it is meant to stop related bone pain.

6. Either AC chemo or Neulasta gives you constipation . Be proactive. Take Coloxyl with senna on the day you get your infusion and until you poo.

7. Hair falls out from 14 days on. Mine fell out about day 21. Get someone to shave it when it looks bad. Have a shower, let the water run on your head, that first feeling of water on your bald head is quite amazing! Have some scarves and hats and beanies ready and even a wig. Go to the wig libary beforehand. I won't lie, losing your hair is pretty hard at first but you get used to it quickly and after a while you just own it and put on a brave face. I got more compliments on my scarves and now with my short hair than I did before!

8. Go to a Look Good Feel Better session. Free makeup and great advice and meet other people going through the same shit. And they teach you how to rock a headscarf.

9. Do Cold Therapy if doing Paclitaxel. Look up my post on the forum. Latex gloves and a bucket of ice for hands and Natracure socks for feet. This can save you having Peripheral Neuropathy and losing your nails.

10. Check with your onco but limit steroids, ie taper sooner if having bad side effects and your nausea is controlled. I am sensitive to that sort of thing and was much better with a lower dose.

11. Suck ice during chemo to stop mouth ulcers. I didn’t do this but had it recommended.  If you get ulcers rinse mouth with salt water, I bought Peter Mac (hospital) brand sachets on Ebay. Easy to use, nice taste.

12. Acid throat and chalky mouth is bad in AC. Use Gaviscon dual action tablets, try staying upright.

13. Your skin will go bad and then improve. But it turns over so much slower so look after it. Use a drop of rosehip oil in your moisturiser (another BC friend tip) and do your hands and face every day. Sores heal slowly so be careful with them.

14. Some of your small moles will drop off? Some will go a bit weird. Your skin closes up.

15. Watery sore eyes and nose will come and go. Eyedrops if eyes get sore. I use antihistamine drops. Carry tissues!

16. Bloody scabby nose. One of my worst side effects, very bad in Paclitaxel. Can try putting a bit of pawpaw up there. Goes away quite quickly when you finish!

17. AC is hard, go dose dense and get it over with in 8 weeks. Paclitaxel is easier but going every week is not, its exhausting having to turn up 12 weeks in a row. You will be very tired by the end but the moment you stop things start to improve! About day ten afterwards you will feel a change. Your energy will come back quickly!

18. The eyelashes and eyebrows you hung on to will fall out after you finish Paclitaxel. Boo! Not fair.

19. Your hair will come back even if it doesn't seem like it ever will. Six weeks is the moment it really starts happening. 

RADIATION

20. Radiation is a breeze compared to chemo. No needles, no poison! Once you get used to making small talk with the nurses while lying with your boobs out you’re good. :smile: Make friends with the people before and after you. You are on the downhill stretch!

21. Strataxrt cream. I was lucky enough to get a sample pack of this from my rad/onco. I have nothing to compare it too but everyone was impressed with my skin and minimal reaction. But its very expensive, ask your onc if they have some free stuff. For 20 days of radiation about a 50ml tube would do.

22. After radiation I still have a slight tanned area and my whole breast and nipple peeled afterwards. Ow! Radiation is good for your lumpectomy scar though. Lightens it! And you won’t have to shave that armpit afterwards!

LIFE

23. Tell people how you’re going even if they don’t ask. Love on those people that stay the distance. Cancer is such a scary thing for everyone and some people don’t know how to talk to you. Make it easier on them. 

24. Come to BCNA if you need help. So many nice people here willing to share.

25. As my Mum used to say, Time and the hour run through the roughest day. You will get to the other side. Be gentle on yourself. Be distracted. Nice things will still happen in among the shitty bits. 

You are brave, you are amazing, be kind to yourself xxx

 <3 

Giovanna_BCNA said:

Hello @Berchel14 sorry to hear that you are struggling with side effects at the moment. Dont hesitate to call our helpline on 1800 500 258 if you would like to speak with a cancer nurse.  Wishing you well tomorrow with treatment and hoping your hospital admission helps you get on top of some of those side effects.

Thank you I took your advice and spoke to the cancer nurse. All good. thanks xx

@Berchel14 I'm so sorry you are suffering with side effects, its a bit of a lottery and it sounds like you got the short straw. I'm sorry you are having such a hard time. I hope that your Onc's ideas work. How good you are having number 3 today and then just one left.
AC is a bastard. The good news is that Paclitaxel is easier. It drags on but its no way as hard on you. 
My eyes streamed on and off the whole time. I remember walking round the park in a cold wind with them just pouring! And I still have a runny nose with Herceptin. There's not much that stops it but the drops helped the itchiness.
I asked for cold cap but my Onc said it wouldn't work with AC. Do look into the cold therapy for hands and feet though. A lot of the women here have had good results with that. 
Sending you some white light today for chemo  <3

@jennyss I'm glad I made notes at the time because you do forget, luckily! A lot came back to me too writing it down. Thanks for your message x

@Afraser that's a good tip. I didn't have steroids with my Paclitaxel and no constipation so that makes sense too. Someone told me it was the injection? Who knows. Get the coloxyl in early I say  :D  Thanks.

@Carrie2020 I use a Natio moisturiser I like because it rubs in well, its actually an intensive hand cream in a pump pack. A friend recommended I add a couple of drops of rosehip oil to the moisturiser and I used that on my hands and face a few times a day. Your pores close up and it can make your skin dry and crepey on your face and cracked on your fingertips. I found the rosehip oil really helped. I had chemo in winter too.
I'm a simple soap kinda girl, so probably not the best person to ask, but you will probably need less body washes and cleansers during chemo because of the skin pores closing up thing, but you need to moisturise to keep it all from drying out. 
Someone else might have better recommendations though! 
My skin has pretty much gone back to normal now and seems the same as before.

Good luck with chemo. It is very doable. One day at a time.  <3

Good luck with it @sabina33 much love to you too. I hope it goes well. Take it a day at a time and you'll get there.

Thank you @ddon  <3

Thanks @Tinks I didn't know that, a tube of Emla would have been really handy!

@Mazbeth, that's such wonderful news you are nearly out the other side. Sending you some  <3 for this last bit!

The funniest thing. After I posted this yesterday my I got a message with my one year BCNA badge. Spooky!

Hello @Berchel14 sorry to hear that you are struggling with side effects at the moment. Dont hesitate to call our helpline on 1800 500 258 if you would like to speak with a cancer nurse.  Wishing you well tomorrow with treatment and hoping your hospital admission helps you get on top of some of those side effects.

shs14 said:

Last year going through chemo I wrote down things which helped as I went through treatment to share with three friends coming behind me. Some is advice I got from other patients, some from doctors, some from nurses, some from online. Now I'm out the other side I've been meaning to post it here in case it can help someone else. 

If you are starting chemo just know you will get through it and its often not as terrible as you think it might be. Stay positive, moan when you want to, it will end eventually! 

Also I would love it if anyone has their own tips to add. (I recognise these are specific to me and may not be right for everyone.)

CHEMO

1. Walk everyday. Try for at least half an hour a day. Try and make someone you love come with you. I found it so good for limiting side effects, it is my number one tip! And becoming recognised by cancer researchers around the world. Watch the Catalyst special on ABC. Its good for the anxious brain, good for your emotional and physical health and if you can debrief with someone as you walk even better. Walk everyday, even chemo days. You will feel like a warrior! 

2. Get a port. You can try without but if you are having 16 infusions like me you will be glad you did it, and your nurses will love you. And get it before you start chemo. It hurts the first day it goes in but gets better quite quickly.

3. Use Emla patches on your port before chemo. They numb the site. I just asked for them from the nurses each week. Set a reminder to put it on one hour before. The only week I forgot they placed the needle three times before it worked, yikes! I use them for Herceptin injections too.

4. If your port doesn’t work try stretching your neck up and coughing to get it going or raising your opposite arm. Nurse tips.

5. If you get a Neulasta injection for after AC take Claratyne for a couple of days with it as it is meant to stop related bone pain.

6. Either AC chemo or Neulasta gives you constipation . Be proactive. Take Coloxyl with senna on the day you get your infusion and until you poo.

7. Hair falls out from 14 days on. Mine fell out about day 21. Get someone to shave it when it looks bad. Have a shower, let the water run on your head, that first feeling of water on your bald head is quite amazing! Have some scarves and hats and beanies ready and even a wig. Go to the wig libary beforehand. I won't lie, losing your hair is pretty hard at first but you get used to it quickly and after a while you just own it and put on a brave face. I got more compliments on my scarves and now with my short hair than I did before!

8. Go to a Look Good Feel Better session. Free makeup and great advice and meet other people going through the same shit. And they teach you how to rock a headscarf.

9. Do Cold Therapy if doing Paclitaxel. Look up my post on the forum. Latex gloves and a bucket of ice for hands and Natracure socks for feet. This can save you having Peripheral Neuropathy and losing your nails.

10. Check with your onco but limit steroids, ie taper sooner if having bad side effects and your nausea is controlled. I am sensitive to that sort of thing and was much better with a lower dose.

11. Suck ice during chemo to stop mouth ulcers. I didn’t do this but had it recommended.  If you get ulcers rinse mouth with salt water, I bought Peter Mac (hospital) brand sachets on Ebay. Easy to use, nice taste.

12. Acid throat and chalky mouth is bad in AC. Use Gaviscon dual action tablets, try staying upright.

13. Your skin will go bad and then improve. But it turns over so much slower so look after it. Use a drop of rosehip oil in your moisturiser (another BC friend tip) and do your hands and face every day. Sores heal slowly so be careful with them.

14. Some of your small moles will drop off? Some will go a bit weird. Your skin closes up.

15. Watery sore eyes and nose will come and go. Eyedrops if eyes get sore. I use antihistamine drops. Carry tissues!

16. Bloody scabby nose. One of my worst side effects, very bad in Paclitaxel. Can try putting a bit of pawpaw up there. Goes away quite quickly when you finish!

17. AC is hard, go dose dense and get it over with in 8 weeks. Paclitaxel is easier but going every week is not, its exhausting having to turn up 12 weeks in a row. You will be very tired by the end but the moment you stop things start to improve! About day ten afterwards you will feel a change. Your energy will come back quickly!

18. The eyelashes and eyebrows you hung on to will fall out after you finish Paclitaxel. Boo! Not fair.

19. Your hair will come back even if it doesn't seem like it ever will. Six weeks is the moment it really starts happening. 

RADIATION

20. Radiation is a breeze compared to chemo. No needles, no poison! Once you get used to making small talk with the nurses while lying with your boobs out you’re good. :smile: Make friends with the people before and after you. You are on the downhill stretch!

21. Strataxrt cream. I was lucky enough to get a sample pack of this from my rad/onco. I have nothing to compare it too but everyone was impressed with my skin and minimal reaction. But its very expensive, ask your onc if they have some free stuff. For 20 days of radiation about a 50ml tube would do.

22. After radiation I still have a slight tanned area and my whole breast and nipple peeled afterwards. Ow! Radiation is good for your lumpectomy scar though. Lightens it! And you won’t have to shave that armpit afterwards!

LIFE

23. Tell people how you’re going even if they don’t ask. Love on those people that stay the distance. Cancer is such a scary thing for everyone and some people don’t know how to talk to you. Make it easier on them. 

24. Come to BCNA if you need help. So many nice people here willing to share.

25. As my Mum used to say, Time and the hour run through the roughest day. You will get to the other side. Be gentle on yourself. Be distracted. Nice things will still happen in among the shitty bits. 

You are brave, you are amazing, be kind to yourself xxx

 <3 

I know it doesn’t apply to everyone, but stopping the steroids usually given along with my Taxol infusion ended my problem with constipation. As I had no nausea, the obligatory steroids once every three weeks with A/C didn’t cause too much trouble, but once a week with Taxol created problems. My oncologist acknowledged that the steroids encouraged constipation and was willing to give it a shot as long as I understood I might then feel
sick. I was fine - and regular! Best wishes.