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Brain mets radiation tiredness

10 REPLIES 10
Hilsy
Member

Re: Brain mets radiation tiredness

You're bound to have wobbles Ruby, it's scary to be told it's back but you could never be told it but the not knowing is horrid. All you can do is live. That's all 🙂 x
Ruby1
Member

Re: Brain mets radiation tiredness

Yes agreed, Hilsby, I appreciate life more, and it does give you a kick up the bum for sure.  I do enjoy my life a lot and a lot has happened (good stuff) since that horrible year when I was diagnosed and I feel very lucky.  I just have wobbly moments every now and again.  

Hugs 

xxx

Hilsy
Member

Re: Brain mets radiation tiredness

Totally Ruby and people freely admit they just don't know how it feels to live with that on your mind but it really did give me a kick up the bum and I appreciate things so much more and am hoping they can keep it under control for some years to come. It's weird how it spreads with some but not for others and they still don't know why that is. Make the best of every moment. Hugs x
Ruby1
Member

Re: Brain mets radiation tiredness

Hi Hilsy

When were you diagnosed with it?  I did have several nodes involved although I never asked how many as I just didn't want to know.  I was tested for the BRCA gene but it was negative however we do have a bit of a family history even so.  So sorry it managed to spread but having Herceptin means that it can keep it in check for a very long time.  The worry doesn't really seem to go away so you just sort of live with it hanging over your shoulders although people do say to me what's the point of worrying if it's going to come back it will but just enjoy your life!  It's easy for people to say because I am who I am and that's how I am!

Hugs

xxxx

Hilsy
Member

Re: Brain mets radiation tiredness

Thanks ruby, much the same story as me. You're in a fab position as the longer you are away without it coming back, the less likely it is. You're fortunate as you were her2 positive like me and it hasn't come back but the lifetime of worry you have and still treatments is horrible I know. I have BRCA1 generation so had both breasts removed after breast cancer, no nose involvement but it managed to spread!! Well done you and fingers crossed for future treatments etc! Hilsy x
Ruby1
Member

Re: Brain mets radiation tiredness

Sure, I found a lump under my armpit whilst I was getting in the shower, it was big like an egg yolk.  I knew the next day I was going straight to my GP who examined me and found a big lump in my breast - how I didn't know about that I'll never understand but both must have grown really quickly.  I was diagnosed quickly with a 4-5cm lump and was HER2+ which meant I needed Herceptin.

 

I had 6 sessions of chemo - FEC & Taxotere and 18 sessions of Herceptin.  While having the chemo I could feel and see the lumps decreasing in size as time went on.  Three weeks after chemo finished I had a mastectomy followed a few years later by a preventative mastectomy to the other side.  I had 15 sessions of rads to 3 areas together with a few boosters plus a special bolus that they place on the area where the lump was.

 

I actually just had my revision surgery to my reconstruction last week so recovering.  There's a lot more in between and I had various complications but fast forward to now and I'm 7 years down the line.

 

I like to keep up to date with the various treatments that are given as it makes me feel more empowered. Sorry I haven't been able to give you any advice but I'm sure somebody will come along who can.  

Big hugs

Ruby xxxx

Hilsy
Member

Re: Brain mets radiation tiredness

Wow, do you mind telling me your story? Not if you don't want. I Understand x
Ruby1
Member

Re: Brain mets radiation tiredness

I'm fine thanks Hilsy - this month is now 7 years since diagnosis and thankfully all going okay.  

Hugs

Ruby xxx

Hilsy
Member

Re: Brain mets radiation tiredness

Aw Thanks ruby hope you're ok x
Ruby1
Member

Re: Brain mets radiation tiredness

Hi Hilsy

Just wanted to say I'm sure somebody will come along soon who can tell you their experiences and I hope your operation goes smoothly.

Hugs 

Ruby xx

Hilsy
Member

Brain mets radiation tiredness

Hi gals. I'm due to have a tumour removed from My cellebellum (back but of brain) and then 2 weeks radiation just where it was. Please could anyone tell me their experiences of side effects etc and how bad the tiredness really is? Thanks in advance and hugs to all xxx