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Nearly 4 years in and brain mets. Please help

Member

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

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
Member

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

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

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
Highlighted
Member

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

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

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

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

aw thank you so much xx eating fir Britain, but enjoying its
Member

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

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

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 and lovely Marnster, who has been having a 'bum ride.'

 

Moijanxx💚💚💚

 

Member

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

Hi Emma I've sent you a message with my email address. 

 

Marnster, sorry you're having a rough time. It was scary stuff but the dexemethezone has returned me back to normal and hopefully WBR will reduce the swelling on a more permanent level for a while. 

 

Truffle, I've got the fear of the unknown at the mo concerning WBR. my oncologist talked about doing Two longer sessions rather than five shorter ones. However it helped there were things that I could possibly do to help myself. Keep on onward and upward xx 

 

Carolyn , you'll be happy to know I've been indulging in chocolate every day. Well I am on holiday ha ha. 

 

 

Member

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

Good morning 

 

Babsy - Wow, that is a fabulous view, I love watching the sea, it's just so calming.

 

I'd be more than happy to answer any questions you have, message away or I'd be happy to give you my email address. I have a power port & I'm not using it at the moment, but it's so much better than a pic line.

 

I'd be interested in the article on reducing side effects on canceractive, I get regular emails from this website but never found anything for WBR x

 

Marnster - hope today goes well & you're not delayed in anyway. Sorry you've had a rough few weeks. I agree I can deal with most but vomiting is the worst. x

 

Truffle - I hope your WBR is going ok, if you've finished I hope you making the most of rest & the side effects aren't being too unkind. Do let us know how your getting on when you can x

 

 I hope everyone else is keeping well, we're finally due some rain today & I can honestly say I'm looking forward to a lower temperature for a few days!!

 

love & (((hugs))) to all

Emma xxx

😍🤗😍🤗

Member

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

Hi Truffle shuffle! Sending you very good wishes with WBR and your recovery from it. Hope it provides some relief for you and doesn't knock you about too much. 

 

I am currently sitting at the hospital getting my chemo. I've had a three week break between treatments while I had the stereotactic radiosurgery. I was fine for the first couple of days, but then I got hit pretty bad with headaches, loss of balance, double vision and vomiting. Started on some dexamethasone and the side effects eased up pretty quickly. Still get a bit of a headache and feel a little off balance. But very glad not to be vomiting anymore. Do you know that in two years of treatment, that is the first thing that has actually made me throw up?

 

Feeling pretty tired at the moment. Thought I might need to get another blood transfusion today as I am feeling about as tired as I did before I needed my last two transfusions. But my medical oncologist bet that the fatigue was more likely an effect of the stereotactic radiosurgery than the chemo. That makes sense as it's been three weeks since the last chemo. And she was right. My blood results came back awesome. In fact, my white blood cell count was above the normal range! So the tiredness is just another after effect of the radiation. 

 

Babsy, happy birthday and so glad you have been able to get away for a break with your family. It's a shame your original plans had to be cancelled but where you are looks lovely. I can't imagine how scary that must've been having another seizure and losing your ability to communicate. Even if it was just for a relatively short time. Reading about that helps put things in perspective. I use those examples when I'm talking to friends and they are feeling sorry for me. Don't you know how much worse things could be? Is what I want to say. Yes, I feel tired and I have a headache. Who doesn't feel like that at least once a week?

Member

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

IMG_0567.JPGCan't turn image!! View from holiday home on beach bedroom window, yesterday at the start of my birthday. Had a lovely day with family, visiting Osborne House, eating and drinking. Peachy pal I will try and message you about the drug cos there is nothing like hearing what it may be like from the horses mouth.  Thinking I'm going to having another port put in cos my veins are shot. Found an interesting article on Canceractive.com which tells you how you can perhaps lessen the side  effects of Whole Brain radiation, some of which I knew. Thanks for all of your kind thoughts. I'm glad I've got this weeks break to gather my thoughts, spend quality time with my family and get to sort things. Luckily, (though not necessarily for son inlaws) we have a kind of wicked and warped sense of humour!!

Member

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

Hello truffle shuffle
Just enjoy some rest and relax until the wbr has passed through your system. ..
Put on some dvds or watch some daytime TV, and hopefully you are being spoilt by the family xxxx
Sending loads of hugs from us all.
Member

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

sounds good im havingvtroubleust tryingto work coomputer replies, horriblev, sorryb, dontfeel ill yet, just got crackles in chestb, rest is ok , oh and jelly legs ,\take care all , any info more tan welcomeccc

Member

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

had wbr now, weird sympoms vot ratling chest, no cough, will ring horapicjkle tomorrow.] nothing rlse yet.
Member

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

Hello Moijan
Sorry about your knees ..hope u sorted now. No holiday booked as living here in Devon. .everyday is a holiday!! Like my own comfy bed ..memory foam and topper for the achy bones suits me.
Xx

Community Champion

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

Hello ladies,

 

so pleased to hear about all your exploits! Babsy and peachypal, enjoy your break away....mmmm champagne is quite my favorite beverage.

 

have been suffering a bit with my knees...not due to bc, but think i had the car seat a bit too near the accelorator.

 

anyway, have seen the chiro, who has manipulated them for me. They feel a bit better today. Havent been doing much as its still pretty warm! Talk soon to you all.....Carolyn have you a holiday booked? And if so where? Or do you just enjoy a permanent holiday?

 

xxx Moijan💚💚💚😎

Member

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

Hello peachy pal
That looks lovely and makes us realise what a beautiful country we live in and now with this illness it makes sense to stay in the UK limits just in case! !!
I live in Devon and have lovely beaches just ten miles away and some pretty scenery and moors.
Xxx
Member

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

Hi all,

 

Babsy - Glad you now have a plan. I've had carboplatin if you want to ask any questions.

Have a wonderful time in your posh house! We're also away for the weekend & rented a newly renovated pwharf right on the harbour edge on Portland. This is our view from the lounge/balcony. We're their first visitors so they left us a bottle of champagne which was lovely.

 

IMG_1260.JPG

 

Truffle - how did your planning scans go, have you started yet?

 

Update on what's been happening since my last post, which I hope will help those having WBR 

I saw my oncologist yesterday for a review & results results of my latest CT scan, I'd been having a lot of headaches, back pain & shortness of breath. As the first spread was in my spine, lungs, liver & sternum, this was a concern.

 

Results of CT show no change since my last one which was back in April (at the end of the trial I was on) and no signs of any new sites. 

The headaches & shortness of breath are down to the steroids. The back pain is because I'm having to use it more as my legs have lost the strength. I'm now off the steroids (4 week program to reduce them), and Onc said it could take another 2-3weeks to start to feel normal again. She's given me some exercises to do while sitting or in bed for my legs. 

 

Still get tired. After yesterdays appointment, hubby & I did a bit of a shop at Sainsbury's for our weekend and then he drove us down to Portland. I had 1 glass of champagne & then slept for 2 hrs! You definitely have to listen to your body and rest when you need to. 

 

Next CT in 3 months, with a quick review in 6 weeks just to see how I'm doing. 

 

Hope everyone is having a lovely weekend xxx 

love & (((hugs))) to all 

😍🤗😍🤗

 

Member

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

Hello babsy
So glad u r enjoying a family holiday. .isle of Wight is perfect for chilling out and relaxation.
I quite enjoyed going to osborne house and felt quite nostalgic thinking of Queen Victoria and her family.
Enjoy xxxx
Member

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

Thanks Moijan, I'm practically back to " normal" now ha ha. It was frightening but I got through it. My family was brilliant and supportive. Even though we didn't get to Majorca my daughters found a huge house on a beach on the Isle of Wight which was reduced as it had had a cancellation. We also got all of our airfares refunded which has helped to pay for this.  It's like being at the Hamptons, and very posh. There is always a silver lining . Could get used to this. I'm going to be having whole brain radiation when I get home and then start on another chemo afterwards. Carp something or other. I haven't researched it as I want a break for this week. 

Community Champion

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

Oh and if it helps... your writing and account of stuff seems pretty good so
Your thinking is getting back to normal x
Mx
Community Champion

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

Hi Babsy,
Poor thing! How very scary. So sorry about your holiday xx but just take some deep breaths and tread water for a while ..... a lot to absorb

You said another consultant told you stuff 'by mistake' was that incorrect? Because nowadays cons won't keep stuff from you ... in fact sometimes they over stress the neg side! They have a duty to keep you informed.

Being n hospital is often yucky... I find it makes me feel
Powerless x

Glad you are out xx

Let us know your new care plan.

Love and hugs

Moijanxx

Member

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

Just came out of hospital tonight. Admitted yesterday at 5.30am . Had another stroke like incident but lost my speech for hours. They've given me Dex to release the pressure  on the frontal lobe. Still haven't got my speech or thinking back to normal. Cancer has spread into lungs, liver and lymph nodes. Another consultant told me by mistake. Seeing the oncologist tomorrow morning. Had to cancel family holiday to Majorca but gave away to a family of 5 in need. May be booking a family holiday in England tomorrow  for my 60 th xx find out newcplan tomorrow xx that care all 

Member

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

Marnster ,
Thank you for that detailed and touching post.
I'm so gutted for you that you went through all that and are still going through it . This horrible disease is truly evil .
Your story has made me realise that I just need to get on with treatment and recovery is most important thing , especially for my children who are under 11 .
Thank you for taking the time to reply I knew that experience is sometimes better than advice from doctors who mostly know theory's and haven't been through it .
Much love ❤️❤️❤️
Community Champion

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

Aaah Marnster,

 

well done. So sorry about the discomfort.xxx

am praying things get better for you soon...love and hugsxxx

Moijan💚💚💚🙆

Member

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

Hello all

 

i had my high dose stereotactic on my three new lesions yesterday afternoon. All went ok. Was a bit painful lying there for about 90 mins in my mask. It was really tight and digging hard into the back of my head. My scalp is a bit sensitive at the moment as my hair is about to start falling out again any day now. After about an hour I had to give the radiotherapists a wave to let me out because the pain was driving me mad. I had been given a light sedative beforehand, but I'm not sure if it was wearing off by the time I got on the machine as there was about an hour delay before I got on there. So I got a few minutes respite from the mask before they put it back on me to do the last lesion. Ok for the first five minutes but then it began to hurt like hell again. Couldn't wait to get out of there. 

 

It's the same mask I used earlier this year but it did feel a bit tighter. My face is still a bit chipmunk round from the steroids I was taking for a few months earlier in the year. I'd have the mask on for about 20 minutes at a time and I don't remember having any pain like that. 

 

Woke up feeling ok this morning.  Thought I might be a bit headachey but this is the first time in almost a week that I haven't woken up with a headache. Not that I got a lot of sleep. The dexamethasone they gave me before treatment really interrupts my sleeping patterns. 

 

Hopefully yesterday's treatment will be as successful as the 10-dose treatment I had earlier this year. I guess we'll find out in a couple of months when we do another MRI. 

Member

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

Hi Zena

 

i had my surgery in December 2015 so it wasn't that long ago that I was faced with all of those confusing choices and scenarios. It is such an information overload. There's the choice between mastectomy and lumpectomy and then there's all the possible reconstruction choices. 

 

My tumour was about 5cm in my right breast and while my breast was large enough that my surgeon thought she could still do a lumpectomy, there would have been a considerable difference in size between my two breasts. My left breast was already a bit bigger than my right. My surgeon estimated that my left was a G cup and my right was a DD cup. Once I realised that the tumour hadn't really shrunk, that helped me make the decision to have the full mastectomy and reconstruction. My surgeon said we could do a reduction on the left breast and I was looking at getting a TRAM flap reconstruction where they use the fat from your stomach (bonus tummy reduction) to reconstruct the right breast. It's a big surgery, I was warned. Can take eight or so hours and I was told the recovery time would be harder and longer than the mastectomy. 

 

I also had at least one lymph node involved so I was going to have to have radiation whether I had the mastectomy or lumpectomy. So that was another factor in my mastectomy choice. 

 

I opted to to have a tissue expander put in to hold the place until I had my surgery. My medical oncologist tried to persuade me not to do this in case it interfered with my radiation treatment and somehow hid some cancer cells from the radiation. But my radiation oncologist was supportive and told me she didn't have any concerns so I got the tissue expander put in. This is something I have had some regrets about. It was the most painful part after the mastectomy and axilla clearance. It was sewn into my chest wall so every time I moved, it would pull. That pain eventually went away but I also had a lot of swelling and fluid around the expander for a long time. Usually the fluid goes after a few weeks, mine was there for over 12 months and so for a lot of the time, the skin there was tight like a drum. It could be a bit painful and annoying. 

 

On the plus side, the tissue expander gives me a breast. Sure, it's smaller and a lot perkier than my natural breast but I wouldn't say it's hugely noticeable all the time. It gives you a cleavage so it's not obvious to other people that you've lost your breast. 

 

As for reconstruction, well the cancer came back and spread before I had a chance to do that. So I still have my slightly uncomfortable tissue expander in. Because I had the mastectomy and radiation, I feel like I did everything I could to prevent it recurring or spreading. I even did six rounds of capecitabine tablets as a preventative measure. But it came back. I don't think it came back because of any of the choices I made. I think it's just a really aggressive type of cancer that was coming back whether I had a mastectomy or a lumpectomy. Like I said, the only thing I do question is the tissue expander (given my medical oncologist's concerns) as I also had a small delay in starting radiation because of some post-surgical complications with it. Nothing I can do about that now. Even if I hadn't got the expander, there's every chance I'd be in the same position as I am now. 

Community Champion

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

truffle, very best wishes for you.

 

im not sure this is much help, but im usually playing mental games when im in the mri scanner, to pass the time..would it help you, to try and compose a list of jobs you need to do, whilst undergoing the wbr...or even a christmas card list??

 

 

Much love, Moijanxx💚💚💚

Community Champion

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

Hi Zena, hope things get clearer for you.

 

please dont apologise for posting on here.....we are all used to exchanging support and those of us who are a little sicker, often we have more  experience to draw on.and to share xxx

 

dont feel afraid to ask any of us anything, it actually helps us all to be able to feel we can offer support...especially when we ourselves have need of it....this forum is just one big information and support exchange...

love and hugs

 

Moijan💚💚💚

Member

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

oh I'm going for 5 go much faffing with 10 xxxx
Member

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

hi, Thank you for info , I havehad mask before so I will be able to cope ,I hope , thanks for offer though , very thankful ,,

 

love  n hugs xxxx

Member

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

thanks ladies , after much , shouting , swearing and general conversation ,I am having planning scans tomorrow. Thiservice has been sham
bollick ,
Member

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

take a little more time , you will find the answer will come to you, when its all gone in, its your body , good luck, xxxxx
Member

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

No I understand, it's just I was on here a while ago chatting with Carolina and other amazing ladies , I know they have had bc as this is a bc site , so thought they may have advice as they've been through this .
Although I agree and feel it's not fair to ask them to comment on me when they are going through hell with this vile cruel disease.
Much love to all ❤️❤️❤️
Community Champion

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

Hi zena

Sorry if it came across from me that you shouldn't post here, it's just that your post/question is in a Brain mets thread and therefore you may not get many answers, it's not one of the busiest threads, although very active. One of the main, surgery, threads may provide more opinions although it is of course eventually up to you and how you feel that will decide what you do, as Moijan has said.

Nicky x

Member

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

Hey M
Pm you sweetie, thank you xx
Community Champion

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

zena, think how you might feel following either option.......eg will you feel more confident about bc being removed after mx and treatment or can you cope with a bit of uncertainty and move on, put it behind you?

 

can you delay and request more time to consider?

 

i saw you were thinking of the diep, would that help you re the boob issue?

 

 

sounds as if you need some time out to think and consider xxx I do remember feeling panic before my mx, and chasing all over the place for answers....the important thing might be takng some time out to think what you want to doxx

 

Moijan💚💚💚

 

Member

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

Sure , I'm sorry , I didn't think . Xxx
Community Champion

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

Hi zena

Although you are more than welcome to post a question in the secondaries part of the forum most of us would have made that decision with our primary BC which could have been many years ago and therefore we may be a little bit less focussed on what made our minds up for us at the time. You will probably be best to copy and paste your post into one of the sections of the main forum where I'm sure there are quite a few primary BC ladies facing the same dilemma as you are. Also it may be worth you calling the helpline to discuss your worries with one of the nurses?

Nicky x 

Member

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

Hi ladies ,
Can I ask you about your treatment, and what you would do if you were me , so much stuff conflicting .
I'm stage 2 lobular bc with level 3 nodes . Er and her positive. I've had 2 Fec and 12 paciltacel and MRI now shows no sign of cancer in nodes or breast . Also my gene test came back negative yesterday .
I'm due to have mx and lymph nodes clearance tomo , but as I'm 42 I'm worried about loses my boob. I have 3 kids under 11 so desperate to live as my mum died of bc when I was 7 .. in m sorry to ask as I know you ladies are going through hell with your treatment but wondered if you had any advice .
My surgeon says mx but up to me , I feel if I'm having rads may as well have wle and kill the rest with rads .. or mx and clearance then no rads as I'm scared rads are very bad ?
Help xx
Member

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

Good luck for today Truffle xx I don't think I have a Maggie centre near me, Peachypal, I live in Rochester, Kent. I'm sure I've looked them up before.  Have a whole body CT scan today so my oncologist can look at what's going on in the rest of my body to see if Cape has been working on them. Now that I'm keeping any pain until control with minimum pain meds not feeling too bad. 

Member

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

All the best Truffle for today.

 

Good for you, for not accepting to wait. Go get 'em & don't accept it if it's 2-3 weeks away, say you want it now. 

 

I'm not sure where you are located but I'm in Oxfordshire, UK.

I had to have a head mask made to make sure your head stays in the same place every time. Personally I found the experience ok, but apparently I'm one of the few at my hospital but happy to send you a photo if you wish of what it looks like. 

 

Each treatment was about 5 mins but I was on the table for about 15 while they lined you up & put the mask on. I was given 2 options. 5 sessions or 10 sessions. Both same dosage over the total time period. My Onc said there was no evidence of an advantage for either so I went for 5 to get it done quicker & blast the little bu**ers.

 

keep us updated on yr progress 

 

love & ((hugs))) 🌹💝🤗

xxxx

Community Champion

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

Hi Truffle,

 

very best of luck today...at least you should be able to see someone and discuss things even if they havent a wbr slot. Xx. Will be thinking of youxxx

 

Moijan💚💚💚

Member

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

just an update, 

 

e mailed opd told them I am not prepared to wait weeks for my referral to be discussed , I feel as if I have been sent home to die, 

5 mins later got a phone call asking me to attend clinic tomorrow.

I just hope they are going to offer me WBR mac nurse was preparing me re symptoms, so fingers crossed i get on the table soon and I am not to far gone. ,   

 

 

love n hugs xxxx

 

 

Member

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

 Ladies thank you all so much for info and support. i am just so worried about the length of time this is taking , getting prepated to be less of a burden to family , I just want to recover from this , just for a while , 

 

will post , ive not eve  got dates yest , hink it wil be anoyher 3 weeks, going to e mail rthem now. if  hadf a date I would have a glimmer of hope xxx\

love n hugs all xxx

 

Community Champion

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

Hi Peachypal,

 

what an inspirational post! i just spent about twenty minutes typing a reply then ipad shut down!

 

so this time, I wont do a long post, but just say that you seem to be the only one who has ever reported back to us after WBR and I suspect thet lots of ladies have got very tired, like yourself, recovered and moved on because it was such an exhausting experience...xx

 

i think your reply will be very encouraging to lots of people, either those who have been posting here and/or those who are what I think of as 'silent readers'. We know that there are frightened ladies out there who read our posts but dont feel able to post anything.xx so well done.

 

i can also think of a few who posted that they were expecting to have WBR...Carolina, in particular, and so far havent come back to tell us how its going. Again, it could be that the whole experience is pretty overwhelming!

 

well done for all your effort to socialise and heep up with friends. Sounds as if hubby is supportive too? 

Do let us know how thngs go for you and especially after the steroids have been reduced.....things may suddenly lift a lot for you.

 

lots of love and hugsxx

Moijan💚💚💚