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Nearly 4 years in and brain mets. Please help

Babsy
Member

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

Well I've come to the end of the treatment road. Oncologist has said there is one last chemo but she feels that it would kill me so I'm going to take her advice and not do it. Just got to try and get my positivity back. Going to a conference in Birmingham at the weekend, I can do it, lots of Hayhouse authors, including Anita Moorjani, so I know I will come out on Sunday feeling much more positive. I bought two tickets but my husband says he'll take me there everyday but won't come in. If anyone wants spare ticket its available. Look up on internet. 

Barbara xx 

LissaNeverKnew
Member

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

Hi Truffle. 

 

Just checking to see how you’re doing? Sorry to hear about the clots. Hopefully the fragmin will sort them out. Thinking of you. 🌹

 

Marnster, lovely photograph. I continue to keep up with the blog. 

 

I’m singing a little more... making the most of a short break from chemo because my BP is too high. Hope the new BP meds can help to reduce it so I can get back on treatment soon as possible. 

 

Hope everybody is doing well. 

 

Take care, Lissa 💖💖 xxx

truffle_shuff
Member

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

oh I have clots on lungs , told I will be on fragmin for ever ??

truffle_shuff
Member

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

lovely photo, gladWBRT is over. I found it ok not as scarry as I Expected, just waiting for
next st age on capcetabine, had 3 lots and no terrible side effects , still in walking chair though . love to allxxx

truffle_shuff
Member

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

choc is helping together with a small amount of red wine, xx keep well everyone xxxx

truffle_shuff
Member

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

great the choc is brilliant therapy, Still working on the walking, but stillswimmimg,althogh water infection have slowed this down, . hope you are are keeping well , even without no sunshinexx

Moijan
Member

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

Marnsterxx well done. Keep mobile sweetie....hope things get better soonxx
moijanx🐹
Carolyn52
Member

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

Marnster

Loving your blog ...look forward to reading it and your adventures too .

Keep doing all your bucket list xxxxx
Marnster
Member

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

Hello everyone!

 

i am back from my mini break and have finished my WBRT. I am feeling ok from the WBRT but I did develop some clots on my lungs during the week that has caused some breathlessness. Think it's just from being a bit less mobile lately as have had bad vertigo and vision problems. Didn't stop me having a great holiday last weekend though. Here is a photo to make you jealous. 

IMG_1737.JPG

 

You can also read all about my holiday in my latest blog post if you're interested. 

https://lifeistooshorttoskipdessert.com/2017/09/09/my-not-bucket-list/

 

Hope everyone is doing well. 

 

Marnster 

 

Moijan
Member

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

Yes Nicky and Carolyn....I too was addicted to flakes,,,,havent had one lately...oh dear what a shame if they are now tasteless!

 

Nicky, I love the Brainy Ladies reference....very affectionate and actually...they are all stars, every onexx

 

much love, Brainy Ladies....try Chocotherapy...better than sex apparently!

 

Mx

Carolyn52
Member

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

Hi nicky

Cadbury were bought by a US company and a lot of the ingredients have been changed ...a box of milk tray is now tasteless too ..the only ones I find the same is twirls. .they seem yummy still.
What a lovely job as a chocolate taster but I would have to go gym everyday, run for 10 miles and do Zumba twice a day to keep the weight off !!

The magnum habit will be changed so something else soon now with winter coming.

🍫🍫🍫🍫
nicky08
Community Champion

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

Hi Carolyn, do you change your daily Magnum habit when the weather changes? Surely you can't want an ice cream in the winter? 🍦I'll shed some light on the Flake mystery. My friend used to have a job that you would have killed for! She was a taster for Cadburys. It turned out that most of their chocolate was made, I think, in the UK but Flakes were made, I think, in Ireland or at least somewhere away for the usual places they have and used different milk, that's why they tasted so good. They were my fave too. Now I think a lot of the chocolate they produce isn't even made in the same places, weren't they taken over or something?its all gone downhill.  Btw my friend used to moan, as we all did/do about going back to work after a holiday. Her daughter pointed out that  unlike most people she wasn't faced with a pile of papers to go through when she got back, she just had to eat her way through the chocolates on her desk ha ha. A girl after your own heart.

Hi to all brainy ladies, hoping all the treatments are going well and not too many SEs with the steroids etc and that the problems caused by the mets are being resolved once the swelling goes down. Take care all of you, you are all doing amazingly well.

Nicky x

LissaNeverKnew
Member

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

Carolyn, I'm sure nothing bad will come out of Chocotherapy. I'm tempted!

🍫🍫🍫😉

Carolyn52
Member

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

I'm getting a bad reputation here for my chocolate habit arnt I?
I have been so good ..just have my daily magnum at 3 pm! ! Ha ha ....no more flakes for me ..wasent worth the energy of opening the wrappers !!
🍫🍫🍫🍫
Moijan
Member

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

Carolyn....was just thinking.....how about you start a new thread..'Chocotherapy' or 'Carolyn's guide to Chocolate Tea Pots' ( only half joking here) tho, I know you are self regulating re chocolate now.

 

i must tell you tho, ( dont do as I do, do as I say) I was rather naughty last week and bought a small box of cocoa covered truffles...and ate more than half!  But this was a bit of a lapse!

 

love, Moijan💚💚💚

 

 

Carolyn52
Member

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

Hello ladies

Moijan has just texted me ..it seems I'm an expert on chocotherapy ( love that term Moijan ) anyway I haven't eaten any for quite some days ..but today bought Cadbury flakes ...what's happened to them ? They don't taste like they used to and they are soooo small ..I had to eat all 4 !!

Ladies ..just been reading your posts and I salute the way you are all coping ....marnster love your blog too !!

Hugs all 🍫🍫🍫
Moijan
Member

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

Hi TRuffle, Katya, Marnster and Lissa xx

 

so good to hear from You Truffle. i agree with Marnsters feeling that once the swelling goes down things might improve......and its really heartening to hear that you are still coming on to see the posts.

 

I think you 'bunch' of ladies are complete Stars. 🌟️ The way you all plod on with your treatment and share with us on here. Lissa, nice to hear from you too......you have weathered a few storms along the way too.

 

Marnster...when Carolina started this thread...I scoured the web and BCC. To just find someone who had been through this scenario before to maybe help her......with very little result. Now we have your blog to refer people to and a nice friendly thread which gets visits from all sorts of people...not just Brain mets.

 

Truffle...am sure Carolyn will be popping in to see how well your chocs are doing......she is the expert on Chocotherapy xx

 

chat soon, love, Moijanxx

 

LissaNeverKnew
Member

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

Hello Kathya,

 

Welcome to this forum. Sorry you find yourself here but feel free to open upif/as much as you like. Not sure if you'rev having WBR or stereotactic but good luck with treatment on 11th Sept. I had stereotactic (Cyberknife) in Nov 2015 on my brain mets and it's been successful so far as no further progression since (am also on chemo so that may have helped). Have spoken to ladies who've had WBR too and they're doing well. Please rest lots while on treatment and keep us posted.

 

Marnster, hope your double vision is sorted soon. Checked out your blog... a good read, really well out together. Have been keeping a journal over the last couple of years in the hope of starting my own. Have to teach myself how to create a website first.

 

Truffle, glad to hear your walking is better. All the best for physio.

 

Had a lovely spa weekend away which I seriously needed. Still feeling extremely fatigued and my balance will always be an issue but I definitely feel more relaxed after being pampered!

 

Wishing all you ladies well. Take care until...

 

Lissa 💖💖 xxx

 

 

Marnster
Member

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

Hi Kahya

 

Welcome to the board but I'm sorry you have to join us. Feel free to ask any questions and I'm sure someone will get back to you. I found my first brain met earlier this year and have now had a few more. I've had stereotactic radiotherapy, stereotactic radiosurgery, brain surgery on my cerebellum and am currently having whole brain radiotherapy so it seems like I've tried all the main treatments for brain mets now so if I can offer any assistance or advice, let me know. 

 

I'Ve been writing about some of my experiences of these on my blog if you want to check it out and have time. I know you said you're very busy with your kids so you don't get much time to read stuff. I'm in Australia, but I think the treatment process is quite similar, wherever you're having it. Good luck with your treatment. 

 

https://lifeistooshorttoskipdessert.com

 

Cheers

Marnster

Marnster
Member

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

Hi Truffle

 

Good to hear from you and check that you are still hanging in there. Hopefully the oral chemo drug you are on (probably Capecitabine?) is breaking through the blood brain barrier and keep those yucky brain mets under control. 

 

I am eight sessions in on whole brain radiotherapy now and am feeling ok. More tired than usual and have terrible vertigo. Hoping the vertigo will improve when the brain swelling goes down. I'm going away on a little mini break tomorrow with friends so I will have my final two sessions when I get back next week. 

 

Still have double vision. Not sure I'm going to see any improvement there. Might go see an opthamalogist when all the swelling has settled and see if there's anything that can be done to improve my vision. Would like to be able to use two eyes again instead of shutting one all the time so I can see straight. 

 

Hope all the ladies on here are doing well. Take good care of yourselves. 

truffle_shuff
Member

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

hi Laadies, I have not been ignoring you, I have had pfrobs loggin on and findin posts, WAs probably me. ell got two more cycles of ohhh forgot itd nameits oral chemo, no dide effects, as yet, but dont know what if anything thry have lined up for me. I never ask any questions in case they give me bad news back . dont know if I will need any more xrt to brain , not had a scan yet.

 

 

I do feel a little more tired,  ut they have assigned me to a physio , znd my walking is a little better , but my wobble is still active,

 

 

chocolate seems to be working xxx

 

take care , willkeep posting xxx

 

\

 

 

 

Moijan
Member

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

Hi Kathya

 

so sorry you have had to join us. Good luck for your radiotherapy...you dont say if its wbr or targeted rads....but scan down all the previous posts on here and you will see that a few people have had either one or another and they have posted some info.

 

do not google as you will just scare yourslf!  Really, the internet is not such a good source of accurate info.

 

 

the other thing you can do is call the helpline as above, or post a pm to the nurses. But sounds as if your treatment plan is now sorted. Kerp in touch with s xx

Moijan💚💚💚

Rose47
Member

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

Morning Kathya.  You have made the right decision to join this forum, so much advice from lovely ladies on here and please never feel embarrassed to ask anything, we are all learning.  You will find the community champions will welcome you soon and they are often on here answering questions or just trying to keep the mood upbeat with chat and humour.  

 

So so sorry you have to join us and with such a young family, but they will give you purpose.  One thing I learnt is not to google !

 

M xx

kathya
Member

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

hello

 

Am new to the forum and so not veryfamiliar with it and dont understand all the abbreviations yet. Have secondary breast cancer of liver and recently diagnosed with brain mets and in pituitary. Starting radiotherapy on 11th sept. Any advice welcomed . There is so much information out there. Its daunting. As have 3 children under six yrs dont have a lot of time to go online

Moijan
Member

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

Well done Nicky, I do get a bit fed up with the leeches who post inapropriate adverts on here....

anything. Just for a quick'buck' never mind if its a vulnerable audience....just plug away!

Mx

nicky08
Community Champion

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

I have reported the last two posts to the moderator as I feel they are inappropriate. The site seems to have been hit by at least 5 of these messages last night and as 'personal' emails are given in all of them I'm assuming they are not genuine or at least are targeting vulnerable women.

Nicky

Babsy
Member

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

Definitely follow your body. I'm week 7 and have got a little more tired. Only trouble is im sleeping in day but not so much at night. I'm now only on 1/0 Demexathesone which helps. I did find I went a bit manic on tablets and frightened my family. The only trouble is they viewed me that way for everything I did which was frustrating. Ha ha xx got to spend though, which hubby hated. Good luck, lovely girl. I've also got info about latest US treatments and they all available from NICE on compassionate grounds, I am ER,PR+, HER -. 

Get results of HER Status on Thursday but I have drugs available for both. Let me know what you currently are. HER can change and often does, so I would recommend getting it checked if you haven't already. 

Barb x

Marnster
Member

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

Looking good Babsy! Hair grows back. Main priority is zapping that leptomeningeal cancer and making you feel better. I'll be joining you completely bald soon. Though am already practically there. Had first WBRT today and all went quickly and smoothly. No side effects yet. Did need to have a late afternoon nap when I got suddenly tired. Probably not great for my sleeping pattern but think it's important to listen to what my body wants/needs arm moment. 

Babsy
Member

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

This is how my hair looks week 6 after two intensive days of radiation. Give me a month and I' ll have a full head of hair. No radiation burns hardly any exhaustion. You just need to prepare your body and mind. Onward and upward🚀I've got cancer in my Leptomeningeal layer. 

Babsy
Member

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

IMG_0638.JPG

Peedles
Member

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

Wow you ladies are so brave and positive Big hugs and enormous respect xx
nicky08
Community Champion

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

Marnster - definitely not news you wanted to hear but you sound like you are facing up to it in your usual positive way - which is pretty much the only way we all can do.  Sending positive thoughts that the WBR zaps all the little uggers and you can continue on your travels Down Under.

Nicky xx

ps Hi to all other brain mets ladies - hoping your treatments are going the right way with you and the SEs are minimal. xx

 

aussiegonewrong
Member

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

 
Carolyn52
Member

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

Marnster
Loving your blog ..you are one tough cookie to face all the brain zapping ...hope u can keep travelling and enjoying life to the full.
Hugs xxx
Marnster
Member

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

Happy weekend everyone!

 

After having brain surgery two weeks ago, I now know my next steps in my treatment. I've written about it on my blog if you're interested in the details.https://lifeistooshorttoskipdessert.com/2017/08/19/what-happens-next/

 

The highlights are that the MRI I had this week found at least six new lesions on my brain with potential for more to be currently developing. The upshot of this is that I will be starting whole brain radiotherapy on Monday.

 

Not the news I was hoping for, but at least I know what is happening now and have a plan in place for treatment.

 

Hope everyone is doing ok.

Babsy
Member

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

Nutty me again! NED in my bone barrow as I now have full blood counts and appear to be functioning normally. I've had a HER status biopsy and had to insist on having it, which is ridiculous. At the beginning of my treatment the locum oncologist said I should have and I've asked for it a couple of time. I can't understand my usual oncologist wouldn't do it before the " final " treatment plan. Will be interesting to find out the results, either way because it definitely affects the drugs to used. If my blood count keeps up I can go for the combination drugs which are more successful. Into week 4 of after Whole brain radiation. I had five days treatment over two. My hair hasn't all come out, no burns, week three my hair is GROWING back, week four my eyelashes are magnificent . Difficulty with core strength e.g. Getting up, but still out and about doing stuff, last night of athletics, theatre, lunch with friends etc. I believe it's the preparation that I've done beforehand. 

Moijan
Member

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

Hi

lovely Babsy!

 

 

xxx

Peedles
Member

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

So happy for you ❤️❤️❤️
Babsy
Member

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

MARVELLOUS NEWS 

live gonevfrom being given three months to live to NO EVIDENCE OF DISEASE 🎉😘😘🎉🎉🎉🦄🦄❤️❤️

And I know how exactly why. My life's mission is to ensure that everybody in the UK has integrative oncology service. They have to be done together. Won't o

alwsys save lives but will extend e.g. Patrick Swazye 

Moijan
Member

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

Great news Marnster!
So very glad to hear from you.

Just relax and recover a bit now xx
No climbing the Sydney Harbour Bridge
Moijanxx👍😎
moff1
Member

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

oops,too quick x hope that you are all well and able to enjoy the weekend. Mums trial is for her2- ladies with mets to brain (as with mum,the presence of other mets is not part of the exclusion criteria) Just in case it may be of benefit to any of you.  Its always good to have options, as sadly they are so limited due to BBB

 

take care ladies xx

moff1
Member

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

Marnster, thats wonderful news to hear that you are safely through the surgery and keeping well xx

bonariensis
Member

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

Hi Marnster. so glad to hear you are through the op and you are still you. Long may you be you, we love to hear from you and read your blog Bon xx

Marnster
Member

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

Hello all 

 

Brain surgery done and I'm feeling pretty good. 

 

Hope everyone else is going ok. 

 

https://lifeistooshorttoskipdessert.com/2017/08/05/what-brain-surgery/

 

Marnster

Babsy
Member

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

Sorry folks the lovely Dexamethasone was making me hallucinate! Good while it lasted. They've cut my dose down 😣My bloods were well within the normal range but I had a blood transfusion 7 weeks ago so apparantly  

expected at those levels. When I go next next Wednesday to have another one they will see what is happening .

i am also having a bioposy done on one of my lymph nodes to check my HER status as I ha e read SO many times that it can change. The locum onc did suggest at the beginning and I have asked for it to be done on two other occasions. They are doing one. Unfortunately this has been my experience that I have to be forceful and I let this slip. 

I will keep you posted 

Marnster
Member

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

Best news ever Babsy! So happy for you!

Babsy
Member

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

I AM CANCER FREE. I WENT TO THE HOSPITAL TODAY MY BLOODS ARE PERFECTLY NORMSL. MY EYES ARE HEALING AS I SPEAK CANT WAIT HA HA. TYKJERB WILL BE AVAILABLE FOR ALL MBC PATIENTS FROM NEXT FRIDAY. 

THERE WILL BE FREE INTEGRATED CANCER CLINCS WORLDWIDE. THE TEAM IS SET UP SLREADY 

 

WATCH THE NEWS ON THURSDAY 11 AUGUST YOU WILL UNDERSTAND

ALL MY POOR FAMILY THINKS THAT I HAVE TEMPORARY BRAIN DAMAGE MY HEART GOES OUT TO THEM LUCKILY I AM THE BEST ACTRESS IN THE UNIVERSE

 

LOVE PEACE AND HARMONY IS ALL YOU NEED, ITS ALL YOU NEED

nicky08
Community Champion

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

Yes, good luck for Marnster for Friday - quick recovery and less pressure on the brain once its removed.

Truffle - hoping you get good results as well from Capecitabine.

Tykerb is known by its medical name here - lapatinib - and is for HER2+ BC.  I knew a lady who had it back in 2013/14 for brain mets, on the NHS, but I think NICE removed it from the approved cancer drugs list a year or so ago.  It is known for crossing the BBB and is in tablet form (or was when she was taking it).  Good luck Babsy if you start on it.

Moff - great news that your Mum's brain mets are stable and I hope the side effects for the chemo she is on are minimal and kicking the other little uggers into touch.

Hi to all other brain mets ladies who've I've not mentioned - you really are sharing so much experience and knowledge, it is a real help to anyone who worries, as we all do, about what happens if our mets develop in our brain - something that hasn't always been talked about in any detail on this forum.

Nicky x

Carolyn52
Member

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

Hello babsy
That's good news about tykerb ..I must confess I had to Google it as haven't heard of it before ..it's obviously a clinical trial in the UK?
Hello truffle shuffle
Sending hugs and hope you are feeling a bit better .
Hugs xxx
truffle_shuff
Member

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

with evry good luck for tomorrow sure you will knock it for 6 xxx you will win this piece of crap xxxx