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Nearly 4 years in and brain mets. Please help

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Member

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

Bumping up for Jule65

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Community Champion

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

Karensol

 

how are are things Going?

 

best wishes Mxx

Community Champion

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

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

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

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

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

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

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

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

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

Keep us posted XX much love

moijan🙏💖

Member

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

Member

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

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 

Member

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

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

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

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

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

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

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

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

Member

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

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

 

Community Champion

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

Hi there Ann,

 

I have absolutely no experience of what you are going through, nor the medication you are having now, but I didn't want to not reply to you and 'walk past'. I'm so dreadfully sorry to hear that you have the vision loss and are having balance issues, is this something that they hope will resolve after rads or they are hoping will be kept under control with the two meds as caused by the mets? I feel that my words must be very hollow when you are dealing with such a truly awful situation, but I am thinking of you and hoping that the marsend (if it is the marsden?) can continue an aggressive treatment plan. Do let us know how you are getting on, if and when you are able. x

Community Champion

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

Oh, Ann, I’m so sorry 😘😘😘

 

Was this at the Marsden?  I do remember when I was on Cape, I did think it might reach the brain, because my head felt swollen a lot of the time.

 

sorry about your vision. One thing ladies have found that after rads to the brain, the swelling gives them symptoms, some of which do improve once the swelling goes down....,.

 

you asked how I am, I’m waiting for mri resultsxx

 

If you feel up to it do keep in touch with us xxxLots of love and hugsxx

 

MOIJAN.

Member

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

Hello!! I’m not too bad thank you, vision in one eye gone, very unsteady on my feet need supervision all the time as have had a few falls & need help dressing etc. I’m currently on Capecitibine chemo & have tried Carboplatin. My brain nets have spread to the lining of my brain so I’ve been told there’s not much they can do as it didn’t respond to the srs 😩 sorry it’s been so long to update. I hope everyone else is doing well xxx
Community Champion

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

Ann...how are you?

 

moijanx

Community Champion

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

Bumping up for Rachy

 

Also, Hi to all brainy ladies, how are you all doing? This thread has gone very quiet over the last few weeks. Thinking of you all and hoping treatments are doing their jobs.

Nicky x

Community Champion

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

Hi Ann,

 

Nice to hear from you. 11 children in all with your sisters....well done ladies....you've done 'more than your fair share' Smiley Very Happy

 

Sounds like you are in very good hands, medically, and the treatment plan is ongoing. Wishing you the very best of luck with that x

Community Champion

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

Ann, how lovely to hear from youxx

 

sounds as if they are monitoring you well and treating the brain mets. Have you had many side effects? 

‘I know some have had temporary vision probs? Anyway so pleased to hear you are getting on with treatment plan and wish you all the very best. Your Mother’s Day sounds spectacular, if maybe a little hectic? But pleased for you.

 

love and hugs,moijanxx

 

Member

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

Hello everyone!
Sorry for the lack of response on my part! The time is flying by & ive been having scans, radiotherapy & about to start chemo. I went up to the Royal Marsden for 3 rounds of stereotactic radiotherapy to treat the tumour bed of the one I had removed in jan. they also found another tumour on the CT scan they did up there so they zapped that one too. I’ve had a CT & MRI of my torso which showed progression in lymph nodes near my heart, my lungs & possibly liver. They want to do another scan of just my liver & see what’s there as it could possibly be a cyst. I’m seeing my onc on weds to hopefully discuss chemo which they’ve said will be carboplatin but they’re also looking into trials.
How are you doing Moijan? Lissa sorry to hear you aren’t doing well! I hope you had good mother’s days? We went to my sisters, I have 4 sisters & we have 11 children between us so with partners & my parents all under one roof it was hactic but lovely. Anyway, take care girls. Sending you all big gentle hugs xxx
Community Champion

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

Hi Lissa,

 

Every now and again I look in on this thread (even though I have very little that is helpful to add), and see that your last post said that you had an infection and were in hospital. I am really hoping that by now your infection has been dealt with, and you are feeling vastly improved. We'd love to hear how you are getting, take good care.

 

Charys x

Community Champion

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

Lissa how are you now?

 

hopefully a bit better?

 

Love and hugs, Mxxxxxxxxx🍧🦋🙏👄🍦🍷

Community Champion

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

Lissa, what bad, bad luck.....am trying out swear words to find the most suitable word to sum up your situation,

 

 

**bleep** That one rhymed with duck, but not with feather.

 

No bleep with that one deleted it as not a quality word.

 

**bleep** that ones ok...rhymed with Brit

 

 I do hope you get home soon lissax

 

Am really thinking of youxx.

 

moijan

Member

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

Hi Moijan,

 

Sorry to hear of your struggles. Taxal is something I’ll have to refuse. Docetaxel sent me crazy when I first had it 4 years ago. Surprised my mother didn’t chuck me out of the house. I’m thinking of you. I really am. 

 

I haven’t been able to check on you because i’m back in hospital AGAIN with another infection!!! Can’t believe it. Fed up. 

 

Sending you & everyone love & good vibes of strength & HOPE.  

 

💝💝💝 xxx

Community Champion

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

Hi Lissa,

 

myself feeling  a little less well

have just nearly finished my week off (10 days since last dose)😥😥after 1st cycle of taxol and my fingers are still Very sore and numb at the tips, I’m already on a reduced dose, I don’t recall this 17 years ago on Docetaxel I know about udderly smooth, but has any new drug or cream come out that helps.

Also feel vaguely nauseous all the time. Maybe I’m far too long in the tooth to be doing this.

 

which day are you at rm?xxxx

 



love to all of you

Moijan😪

Member

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

Hi Moijan.

Apologies, i’m having difficulty with my recovery. Low energy is still main issue. Plus the other meds I are taking are taking their toll. Finish my antibiotics tomorrow - wow, 30 days of hardcore. Can’t wait! Has RM appointment last week. My brain still fine but consultant wants wait another 5 weeks before treatment. Doesn’t want to do me more harm than good. That treatment adds to fatigue.

 

How are you, Moijan? How’re coping?

 

Thinking of you.

 

Hope all you ladies are ok.

 

Much love & hope...

💖💖💖xxx

Community Champion

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

Coo EE? Anyone about sweeties?

m

Community Champion

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

Maria, how are things now? Settling down a bit?

 

love and hugsxx

 

Moijan

Community Champion

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

Lissa, how are things going with you?

 

loadsalovexxx

moijanx

Community Champion

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

Hello Everyone?

 

how are things Going?

 

xx

Community Champion

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

Morning ladies, well we plod on don’t wexx

 

hope everyone is going to have a super day, or at least an improvementxx

 

i sleep a bit longer last night, having calmed myself down with reiki, I was earlier in a bit of a state...you know that place where everything seems scary and uncertain? That’s the taxol, plus blasted Cipro antibiotic am currently on. Had been ignoring my own advice...and mentally suffering. I think I was over tired and I’m going to meditate more and take much more time for myself.

 

anyway, a new day today and lots of mushrooms I think as I love them XX only as part of a mixed diet as not sure if they’d affect my drugs.

 

FD7B40C7-3990-41D1-AD52-C89CAD7D274A.jpeg

Community Champion

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

Maria, Glad it's over! You did well! Now, to rest up! HUGS! FF

Community Champion

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

Hi Maria

You are doing so well. Remember to rest up and listen to your body, the SEs can kick in after the wbr is done from what I’ve read on here and learnt from a lady I know who had it.

Good luck with all of your treatments brainy ladies, you are truly inspirational with what you have to deal with and how you cope, a hat all of us secondary ladies have to wear I suppose 👑

Nicky x

Member

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

Hi Maria,


Glad wbr over for you & that you coped ok. Rest & stay well as you can. Thinking of you.


Much love & hope everyone.
💖💖💖 xxxx

 

Community Champion

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

Well done Maria, yes I’m sure steroids could do that.

best wishes for your recovery too. Love and hugs

Moijan😘😘🤗

Member

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

Hi Ladies.  Thank you funny face for your message, I am sorry only just replied.  Today was last session of Wbr. It. Was Thursday,Friday,mon,tues,wed with this mornings being at 7.30 in the morning so feeling a bit tired.  It hasn't been as bad as I feared although the last few days the mask did get tighter but I wonder if that was down to the steroids puffing up my face.  At my onc appt yesterday he let me reduce down from 8mg to 4mg for a 5 days and then 2 for a few days and then none thank goodness as they are just awful.  Nothing compared to the other brave ladies on here, sending you both much love on your recoveries xxx

Community Champion

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

Look, both of you...all of you. Have a look at Joe dispensa’s books I believe he has a new way of thinking, well not new but different....and I believe it could, if we were able to persevere...help us to help ourselves.

 

xxxx

 

Moijan🤗🤗🤗🤗🦋🦋🦋🦋😘😘😘😘

 

 

AND I was feeling very lonely today, not much on the Forum, so thank you for replyingxxx

 

Community Champion

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

 

Lindy, I wasn’t on it long...that’s the scary part...you have a build up period fortnightly  for one month then monthly, I was only on it three months....wbmri showed it wasn’t working.

 

And yes, thank you, so do I, as I’m not really happy with going onto it. At least if it works then I can maybe see and end to it....xx

 

love moijanxx

Community Champion

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

Lissa my lovely, It is a big change, and difficult....but....you ladies are coping with much worse just now and you all do so very well.🤗😘

Member

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

Hi Moijan,


I also didn’t realise you were on taxol. Guess I wasn’t paying attention. Shame you have to cope with a change & the side effects but seems you’re finding a way to cope. Rooting for you.

 

Thinking of you. 🦋🦋🦋🦋


💖💖💖 xxx

Member

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

Hi Moijan,


Thank you. Haha, I am a terrible patient but this last episode has taught me a massive lesson. Body’s controlling me right now but I intend to get a good amount of control back. I worked too hard over the last two years to get it.


Ann, I didn’t get double vision but had blurry vision once I was back on chemo. However, a few days after my first craniotomy, I lost complete use of my right arm - left brain met, right arm. I also had approximately 15 seizures in one day. Grim times. The worry was I’d never get the use of it back. Months of physio & realising there was hope & quality of life, albeit I am dependent on mum & my sister & her family & of course life is fatigue ridden, my arm has improved. I‘m a jazz fanatic, listen to live jazz often & sing so it’s hard to hold a mic & balance but I try. Modern technology helps me with songwriting. I don’t have to type too much. Taken up photography - a very kind, excellent photographer has become a friend & helps me when he can. My arm will never be the same but I believe in hope. I see this latest brain tumour as a sidestep. Things can certainly improve.


Keep hope that the double vision will subside & the pain will ease in time. Thinking of you.


Hope all you lovely ladies are ok.


💖💖💖 xxxxx