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

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

Karensol

 

how are are things Going?

 

best wishes Mxx

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

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

Where did you hear that about thc?  I hadn t heard thatxx

 

If it’s true, then the onc likely wouldn’t know? As there have been no trials as far as I know in uk?

 

maybe contact a website in US to ask? I’m sure a lot of us would like to know!

 

goodluck and hugs

 

moijan

 

Member
Posts: 9
Registered: ‎02-01-2018

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

Morning ladies x

 

Well after the shock I’m feeling strong and positive just waiting for an appointment for radiotherapy.

 

I was just wondering what you all thought of CBD & THC oil ?, I asked my oncologist and she said she is not against it but not able to advice, I’ve  heard it’s the thc that can kill the cancer cells, but my primary was oestrogen breast cancer which I finished my treatment only in Apri and apparently thc is fuel to the fire for oestrogen receptor which I’m scared if I start using the oils it my come back. 

 

Found out 2 weeks ago I have several nodules in my brain I’m feeling great in myself, just don’t know what to do about the oils if a oncologist is saying she is not against surely it’s helping ? 

 

Xxx

Member
Posts: 24
Registered: ‎15-07-2015

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

Hey M!
I found the carbo very easy to deal with, no side effects at all really. Bloods were fine, no neuropathy, hands & feet all good. Although I did suffer with mouth ulcers which prevented/delayed one of my chemos. They gave me some mouthy wash to use & that helped a bit. I also git some paste off the internet but didn’t find that much good. I invested in an electric toothbrush too. Anything to help! Good luck but like I said minimal side effects xxx
Community Champion
Posts: 3,294
Registered: ‎04-02-2016

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

[ Edited ]

No worries, I too book in this country for the same reason.

 

wondered how the carbo was, as am destined to visit that soon. What side effects?/ did you get nutrapenic and need to visit a+e ?

 

 

love and hugs..M😸💜😎

Member
Posts: 24
Registered: ‎15-07-2015

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

Hi All,
I was originally diagnosed June 2015 with invasive ductal carcinoma. Triple negative. I had Fec-t x6 chemo followed by left mastectomy in Dec 2015 then rads, can’t remember off hand how many rads but think it was 15 feb 2016(3weeks mon-fri) I then had ovaries & Fallopian tubes removed in May 2016 as I’m also BRCA1+ In June 2017 I had double diep flap reconstruction. Then Dec 2017 diagnosed with brain mets, I had a craniotomy followed by srs for another small brain lesion. Scans showed liver & lung mets & further progression to lining of brain & radiotherapy hadn’t worked. I had 3 rounds of carboplatin to which some tumours shrank but some grew. I’m currently on my second round of capecitibine, feeling very dizzy, no energy & completely bloated from the steroids! Hoping this is side effects & I start feeling a bit stronger soon. We’ve just booked a week away in this country only an hours drive in case I need to cine home. Sorry fir not replying sooner, I do read the messages it’s just finding time & energy to reply xxx
Community Champion
Posts: 3,294
Registered: ‎04-02-2016

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

Ann, how is it all doing?  How was the carbo? Was wondering which bc you had initially, ie lobular, etc etc?

 

anyway, have been thinking of you

 

moijanxx

 

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

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

[ Edited ]

Hi Karen, so sorry to hear about the brain mets.....what a b pain

Keep us posted XX much love

moijan🙏💖

Member
Posts: 1,598
Registered: ‎01-05-2012

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

Hi Karen, 

Good to hear from you but not your news. We'll be thinking of you and we'll be with you over the next few weeks. Keep us posted

love Bon x

Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

Hello Karen

It's so nice to hear from you but so sorry to hear that the little blighters have set up home in the brain. .its going to be a tough few weeks but please let us support you here ...
We are all real and understand fear and everything that goes with it ....

Sending special hugs xxxx💗💗💗💗
Member
Posts: 9
Registered: ‎02-01-2018

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

Hi all,

 

Well the good news is I don’t have it in my bones but the little buggers have got into my brain, waiting to start radiotherapy,so let the fight begin...... 

 

love karen x 

Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

Hello Karen

If you go to bone mets thread and post this I will answer some of your queries.
It's a mine field on the forum til you get used to it.
Member
Posts: 9
Registered: ‎02-01-2018

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

So sorry I think I’ve posted this on the wrong thread I’m new to his.
Sorry xxx
Member
Posts: 9
Registered: ‎02-01-2018

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

Hi Carolyn, 

 

I wonder if you can give me some advice ?  

I feel like I’m being a nuisance and hypochondriac with doctors and work colleagues,it started with hip problems mainly at night struggling to turn over in bed and getting in and out of cars, it seem to start after having a mastectomy in January. I could cope with the hip but one morning I woke up and my lower back was in agony struggled getting out of bed could not stand up straight the doctor prescribe codeine 15mg & paracetamol which really didn’t help,the 30mg codeins were too strong, after a week the back pain eased off but now its back!! Plus side pain but I think that is coming from the hip, I really struggle to get up from my sofa the pain is that bad with certain movement. The doctors think it’s muscular, so does the breast consultant,I’m having a bone scan on Thursday so hopefully it is muscular! 

 

It it really helps reading everyone’s stories I actually don’t feel like a hypochondriac ha. 

 

Hope we you are doing ok You are such a positive lady. 

 

Take care 

karen xx

Community Champion
Posts: 4,307
Registered: ‎01-05-2012

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

Hi Ann! Oh gosh the vision loss in your eye must be hard to adjust too. It probably messes with your balance too. I imagine having constant care must be annoying. I'm a caregiver for a lady who had a stroke. She hates all the people on top of her. Sometimes I tell her I will go outside her apartment and sit in the hallway with her door open so she can be alone for a bit. I'm allowed to leave her to go for groceries. She looks forward to that time. I haven't had carboplatin but did have capecitibine for 2 years.I know it's supposed to cross the blood/brain barrier, but I have no experience with that. Not sure how well it does. I hope your eye isn't causing pain and any swelling being kept at a minimum. My arms have stretched across the pond to give you a big hug. Hugs are the best! FF

Community Champion
Posts: 4,532
Registered: ‎01-05-2012

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

Hi Ann

Just adding my thoughts and hugs to the ones you’ve already received. I’m sorry to hear about your latest update about your brain mets and really hope that the treatments can help with the SEs (of brain mets) and that you are getting the support that you need closer to home.

Take care

Nicky x

Member
Posts: 121
Registered: ‎08-09-2017

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

Hi Ann

 

It's Emily here from Breast Cancer Care.

 

I'm really sorry to hear your update. I'm hoping that the treatments help, and you can get a bit steadier on your feet.

 

Ann, I just thought I'd let you know that if you want to chat, there's an online private Live Chat this evening 8.30 - 9.30pm (it's every Tuesday) if you'd like to talk to other people who are having treatments for a secondary diagnosis too. You can register here or drop me a Forum message if you need any help.

 

Wishing you all the best

Emily

 

Community Champion
Posts: 1,051
Registered: ‎21-01-2017

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

[ Edited ]

Hi Ann, just popping in from lung mets. So sorry to hear your news. Obviously very shocking for you, and I don't know what to say, but couldn't just ignore this post. So.....sending a very big, very gentle hug, and hoping that there is some experimental, or new research at the Marsden that will help you. X

Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

Hello Ann

I just opened my special hugs cupboard to send mega hugs to you and hope you can get through this ....we are all holding your hand lovely lady .

🌹🌹🌹🌹🌹
Community Champion
Posts: 9,812
Registered: ‎16-11-2016

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

Ann

 

As with Charys I have no experience of what you are going through, but I wanted to add my hope that they are able to sort something out for you to help.

 

Sending you hugs

 

Helena xx