New to the group with spinal mets

Giovanna_BCNA

@FYONA1 posted

hi everyone
i really would like to hear from someone who is going through mets to the spine I was diagnosed a few weeks ago and did radiation and am currently doing letrozole and ribociclib
am feeling very scared and worry about some of the frightening side effects that I may experience
if someone can plz tell me how they're feeling that would be very much appreciated

Zoffiel

Hi @FYONA1 I'm not in your position so can't help you with the details of your treatment. I have, however, been on and off the breast cancer bus for over a decade and remember very well how confronting diagnosis can be. 
@SoldierCrab is your go to person for links to everything BCNA. There are many here who are living with metastatic disease, they can, and wil,l help you with managing the next few weeks. Marg xx

kmakm

Hello @FYONA1. I'm so sorry that you've joined us here with such a bugger of a diagnosis. I hope you find this forum as helpful and supportive as I have.

There is a closed group called Metatastic Breast Cancer you might like to join. Scroll down to the list of groups below and follow the prompts.

I am about to start Letrozole next week and am scared and worried about that mile long list of side effects myself! However I do know that lots of people have hardly any or none. We just have to hope that we fall into that lucky group.

The other thing that's handy to do is use the search bar at the top of the home page. Pop in whatever you're wondering about and you'll find stacks of info.

Hang in there hun, big hug. K xox

SoldierCrab

hi FYONA1 sorry you have need to be here.... @wendy55 @Tilly45 @KeelyB Ladies can  you help Fyona out here ? 

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

The what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information
or support please call 1800 500 258.  

The Helpline is open 

Monday,
Wednesday and Friday from 9 am till 5 pm EST 

and 

Tuesday and Thursday from 9 am
till 9 pm EST.

living with metastatic cancer  https//onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer  

Zoffiel

Thanks Alice. As you will find @FYONA1 we all have our strengths, you will find yours too. Mxxx

Giovanna_BCNA

Hello @SoldierCrab
Thanks for adding your post and tagging in some other network members who may be able to assist FYONA1.
I spoke with FYONA1 today, she is a member of the MBC group, I suggested adding her questions to the main discussion forum for a response or comment.

FYONA1

Hi @SoldierCrab
thanks for helping me out 
I'm new to all this so I'm finding it hard to cope with everything 
I just needed some advice on how to cope and staying positive

Brenda5

My dad has bone mets and from time to time over the years he does have a bit of radiation to settle things down. It seems you have to stir it up before it gets better. He has had a few sorts of chemo as well, infused and tablets and now he is on a new chemo every 3 weeks. He manages the bone pain with prescribed painkillers and his biggest hassle atm is numbness to his fingers and feet which is a side effect of the chemo. We may have to get him a portable power chair esp for shopping as his energy wanes after a bit. He can still walk upright, soldier straight and you wouldn't know at 78 that he has bone cancer.
If you eventually end up getting a portable power chair yourself for those long shopping trips, get one that the Coles trolleys can attach to. Where we are, Coles has a specially designed trolley that will click to the front bars of the chair.
That's really what surviving day to day is, outsmarting the cancer and adapting to live a different way. 

wendy55

Hi @Brenda5, love how you put outsmarting the cancer and adapting to live a different way, so very true!!!

wendy55

FYONA1

Hi @Wendy55
just wanted to say hi and that I'm having one of those bad days again I'm very worried about ribociclib/letrozole side effects
i just can't get my head around the whole thing

gjf

Hi @FYONA1, hope you're doing okay.  Hope you can feel reassured that I'm doing okay and have been on letrozole and ribociclib for 8 months now and have had very few side effects so far (a bit tired, sore joints a bit and low-ish neutrophils which meant I was on the lower dose of ribociclib...but didn't pick up an infection).  Oh and I have bone mets, including in my spine, but haven't needed radiation therapy so far.  Exercise has been really helpful to me in keeping me calm and feeling good - walking is great.  All the best.

angg66

I agree with @gjf. Walking & exercise help keep me feeling good & is a great stress release. I also have bone mets plus mets in the liver & chest lymp nodes. 

Kattykit

@FYONA1, if you want to let wendy55 to see your post you need to put @ before her name, then she will see it and be able to respond, take care.

Giovanna_BCNA

Hello @FYONA1
I have updated your post to Wendy55 and included the @ symbol before her name.  This will ensure that @Wendy55 will see your message.

FYONA1

Hi@gjf
thanks for the great tips 
can I plz ask you in terms of the side effects with the ribociclib/ letrozole have you experienced hair thinning and if so when did this start

wendy55

Hi @FYONA1, when I was on the Letrozole,there were no obvious signs of my hair thinning,again it was my hairdresser who kept a constant watch on what was happening, as I havent been on Ribociclib I cant give you any advice, we all react differently to these drugs and the signs arent always obvious in the first few days hair is one area where it may take a little while, having said that you might not have any side effects at all,you just have to be able to give the drugs time to get into your system and work, STRESS has a huge impact on our overall being and especially our hair, so as hard as it may seem the more you are worrying the more stress you are under, its a vicious circle I know but if you can somehow come to terms with the fact that you just have to give this a little bit of time,there are other factors as well hair is usually the first that will show signs of not being happy if you are not happy, I understand you are having a call with the BCNA pyschologist tonight, perhaps that might help with some of your fears, you are going through a very difficult time and the best strategy I could offer is distraction,thats what I do when I am in pain or upset, I understand that you must feel like you have lost control of your life and if you are a person that likes to be in control like me, it is very hard and I guess having the final say about your hair is one way of dealing with this, but I cant stress enough, please let the drugs do their job for a little while and see how you go, your hairdresser will be your best friend and if she is not sympathetic then perhaps its time to ask around for someone who is, there are products now on the market to fill out your hair, but ultimately this is about your well being, your health,ALL of these drugs have side effects in one form or another some women get them some women dont, so please just breathe, one day at a time - we are all here for you - any time you want to chat just let us know and someone will be here to offer support and guidence or just a listening ear,having said all that I have just made an appointment with my hairdresser for a shampoo and blow wave, my partner and I are booked into a Otis Foundation holiday retreat for a three day break, as I said no cost, all you take is your food, and drive there,and enjoy,so thats what we are doing, the dog is booked in to the kennels, and off we go!!!
Keep in touch,
Wendy55