Community Champion
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Re: Nearly 4 years in and brain mets. Please help

Babsy, veryvery best wishes for the treatment -you can compare notes with truffle later xx

we are all thinkng of you.xx

Moijanx

Community Champion
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Re: Nearly 4 years in and brain mets. Please help

Truffle, im no expert, but its my guess that there wont be a ct of your brain for a while...I think there will be effects from the wbr over a period of time and they will want to wait a while..to revieiw after that period..but do ask. The other thing  is,,,

 

and again have no knowledge,but they might choose mri rather than ct, to save more radiation to the area..again, I would ask.....I did have a brain mri once to rule out a growth and brain mri's go into great depth.

 

Best wishes and yes -overdose in ice cream and anything that appeals......why the hell not?

 

love Mojan😃😎🍦🍦🍦🍦🍦🍦🍦🍦🍦🍦🍮🍮🍮🍩🍨🎂🍰

Community Champion
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Registered: ‎26-10-2015

Re: Nearly 4 years in and brain mets. Please help

Hello Helen
I too have enjoyed some lovely hols on the Isle of Wight. .such a calm and relaxing island ..you are lucky to live there ...although I live in Devon which is also very nice !!
Member
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Registered: ‎18-01-2013

Re: Nearly 4 years in and brain mets. Please help

B****y predictive text ! Should read precious family time -Sorry!!
Member
Posts: 350
Registered: ‎18-01-2013

Re: Nearly 4 years in and brain mets. Please help

Babsy
Just seen that you have been holidaying on the Isle of Wight- that's where I live! What a shame that we didn't get to meet. I hope that you enjoyed our lovely island and you had previous family time. All the very best with your treatment and I hope it works its magic on you.
Love Helen x
Member
Posts: 145
Registered: ‎23-05-2016

Re: Nearly 4 years in and brain mets. Please help

Hi everyone. I've my two longer session of WBR. Who knew that fried brain smelled like cabbage ha ha. Dexamethasone is not quite controlling the pressure at the moment but I'm a staying calm as possible, especially while trying to cope with a major family crisis we're going through  with with one of our daughters. Kids!!!!! Love will conquer all. ❤️ Initial side effects, cramping feelings in legs which thank goodness didn't turn into actual cramps and one episode of dizziness this am. 

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Re: Nearly 4 years in and brain mets. Please help

Truffle shuffle
Keep enjoying the ice cream and chocs. ..probably steroids that are making you into a gremlin !!I'm not sure from your posting if you have had the wbr yet though ?
Sending loads of hugs xxxx
Member
Posts: 463
Registered: ‎01-01-2010

Re: Nearly 4 years in and brain mets. Please help

mouth movement all the time , its great , lovin the chocs n ice cream , I look like a blimp , not bothered though, hope everyone is feeling ok, , I'm having ct a t p on sat , thought id be havin ct brain , nut no ?noh well, I've checked, thy day no not yet so will go with the flowsxxxxxxx
Community Champion
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Re: Nearly 4 years in and brain mets. Please help

Babsy, thank you so much for that xx will help future readers

Glad you are managing to gad about a little Xx enjoy
Moijanx
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Posts: 145
Registered: ‎23-05-2016

Re: Nearly 4 years in and brain mets. Please help

https://www.canceractive.com/cancer-active-page-link.aspx?n=258&title=20-tips-to-improve-your-Radiot...

 I did know how to do it, ha ha. Just forgotten that I did. This is an interesting article about ways of helping yourself through the effects of WBR.  My GP has prescribed 2mg Melatonin and queried the amount and said 2 mg is maximum allowed to prescribed. I'm just gonna take that. 

I'm already taking most of the other stuff, but not all. Not going  to add anything extra cos of what I'm already doing. I get my green/ veg fix by blending them and haven't had in ages so that's starting again tomorrow by making a four day batch. 

Just got to decide when to buzz hair short, probably tomorrow afternoon. Should have bought a water based dye ...still time. Going into my former school tomorrow, (was head) as one of my mates is retiring. Will be nice to see everyone. 

Take care all xx 

Community Champion
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Registered: ‎04-02-2016

Re: Nearly 4 years in and brain mets. Please help

Well. Normally cautious Moijan threw common sense to the wind and accidently got sunburnt on her arm two days after chemo!

It was a lovely afternoon in Lyme Regis by a sandy beach. With an occasional paddle, very little sun. ..... hadn't noticed any readness. Just a mild headache-goes to show

Then noticed temp going up -sunburn does that. Drank loads of water and took paracetamol - put e45 on my arm and we headed home today!

Am fine just now ... but a lesson for me -I often forget and think I'm just like everyone else, but of course we aren't are we? 🤑😎

MX
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Posts: 77
Registered: ‎10-01-2017

Re: Nearly 4 years in and brain mets. Please help

[ Edited ]

Hello everyone,

 

Well, thank goodness I copied this message to a word file (part of a safety practice of mine) as it completely disappeared soon a I pressed 'Post'. Lesson learned... phew!

 

So sorry, I have been missing for a good few weeks but you've never been out of my thoughts. Have been going through stuff but, after catching up on this thread, am realising it's nothing compared to what some of you ladies are dealing with.

 

The heat a few weeks ago arrived the day after my chemo and literally knocked me for six - I seem to have turned into a wimp where hot days are concerned, never quite recovered from that... my bad arm seems to be getting heavier and more tingly and is affecting my balance... eyes are blurry... I found a lump in my other breast but relieved to eventually discover it's nothing sinister... suffering with severe constipation and swollen feet, both of which have been painful (of course, the painkillers cause even more constipation, haha, so I'm armed with a combination of prescribed laxatives 😂)... water works are on overdrive... and my blood pressure has skyrocketed!!! And yes, apparently the new BP medication can cause, you guessed it, constipation and swollen feet. Cannot sleep at night but I can snooze for England during the daytime. Loverly. 🙄 Other than fatigue, I shouldn't complain because I'm slowly improving. All tests are fine and am encouraged because my latest brain MRI shows no sign of progression. Mum and sis are nagging me to slow down. Have to admit they're right, I need to listen to my body more. Honestly didn't realise I was overdoing it until I burned myself out.

 

Truffle, glad your wbr is all done. Take time and rest lots. Are you on Dexamethasone steroid? I used to joke that dex made my mouth move, I just couldn't stop eating. Hoping for a good outcome and you eventually being able to walk unaided.

 

Babsy, that photo is idyllic! Belated birthday greetings to you. What a wonderful way to celebrate, you deserve a decent break. Sorry you've had such difficult, scary time. Glad a plan's in place and keeping everything crossed that wbr and chemo prove successful.

 

Marnster, stereotactic radiosurgery can make you super exhausted and for a good long while after treatment. Happy to hear vomiting has ceased and, wow, your bloods are excellent. Fantastic news! Best of luck with chemo.

 

PeachyPal, lovely photograph. Hope you enjoyed your time away and also that you're beginning to notice your legs getting a little stronger now that you're off the steroids.

 

Moijan, great idea re the link. Are your knees getting better?

 

Hope everyone else is doing well... Carolyn, Zena and Nicky. Hope I haven't missed anybody.

 

Think I'll look into a spa weekend/few days away somewhere. I'm a self-confessed city girl and I love this town  but right now feel I can benefit from a short relaxing break.

 

Much love. 💖🌻💖🌻💖 xxx

 

Community Champion
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Registered: ‎04-02-2016

Re: Nearly 4 years in and brain mets. Please help

Hi Babsy
I usually start the send to process as if I'm going to email it- the proposed email then appears with the link in it - I copy the link and then past it into my post on here
Mx
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Community Champion
Posts: 8,526
Registered: ‎26-10-2015

Re: Nearly 4 years in and brain mets. Please help

Truffle shuffle
Well done for getting the wbr ..let's hope everyday gets better for you now ..loosing mobility is cruel as we take for granted these things.
Hugs xx
Member
Posts: 463
Registered: ‎01-01-2010

Re: Nearly 4 years in and brain mets. Please help

well, WBRdone no big side effects as yet, im eating for britain , great family spoiling me , scans next week, thrn who knows what , just be greatbigf i could walk on my own , without loss of balance ,hope I have some sort of future xxxx

 

 

 

take care all

Member
Posts: 145
Registered: ‎23-05-2016

Re: Nearly 4 years in and brain mets. Please help

Moijan PM me your email address then I can send you the link xx 

Member
Posts: 463
Registered: ‎01-01-2010

Re: Nearly 4 years in and brain mets. Please help

aw thank you so much xx eating fir Britain, but enjoying its
Member
Posts: 145
Registered: ‎23-05-2016

Re: Nearly 4 years in and brain mets. Please help

Not sure how to do link. It has got a send to page at the top of article on IPad but not sure how to get it here. There's a current trauma in immediate family so not the time to ask for help. 

Community Champion
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Registered: ‎04-02-2016

Re: Nearly 4 years in and brain mets. Please help

Hi everyone.xxx

 

could we praps have the link to the article re reducing side effects of wbr? Please? 

The reason I ask this, is that lots of shy people scan these threads and brain mets are pretty scary, as are brain tumours...everyones pet dread, after 'vision loss' so if you could post the link

 

Youd likely be helping loads of future ladies......when this thread started with Carolina...I scoured and scoured the internet and this site and there was very little info at all which would help/reassure her.

 

so please, please share on here and all the silent stalkers can also benefitxx

 

thank youxx

 

Truffle, ..hope things are slightly easier now....have not been on site for a while..sorry. I hink the steroids do help....my friend with a brain tumour has had a reduction in side effects, it works to reduce the brain swelling

( from the treatment). Lots of love to youxx also to Babsy

 

Moijanxx

 

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Nearly 4 years in and brain mets. Please help

[ Edited ]

Hi everyone.xxx

 

could we praps have the link to the article re reducing side effects of wbr? Please? 

The reason I ask this, is that lots of shy people scan these threads and brain mets are pretty scary, as are brain tumours...everyones pet dread, after 'vision loss' so if you could post the link

 

Youd likely be helping loads of future ladies......when this thread started with Carolina...I scoured and scoured the internet and this site and there was very little info at all which would help/reassure her.

 

so please, please share on here and all the silent stalkers can also benefitxx

 

thank youxx

 

Truffle, ..hope things are slightly easier now....have not been on site for a while..sorry. I hink the steroids do help....my friend with a brain tumour has had a reduction in side effects, it works to reduce the brain swelling

( from the treatment). Lots of love to youxx also to Babsy and lovely Marnster, who has been having a 'bum ride.'

 

Moijanxx💚💚💚