Had a e mail from my integrative onconolgy charity. She’s recommended Boswellia, Tumeric, lipoid acid tincture, IP6 and Salicinium. Been taking two out of the three for ages but not at high doses recommended. These all cross the blood brain barrier. I’m going to give it a go and let you know any results. I used a vaporiser to get the sacred plant into my system but managed to knock myself out for two days, ha ha it was hilarious. I’m such a numpty!!
Hello babsy
I just got a spam e mail …gummy bears with the sacred plant ingredients you mention !!!
It was a us site but the packet looked just like kiddies sweets …dangerous for youngsters and they promise to cure everything from a boil on the bum to cancer !!
I quickly deleted it.
Hugs xx
Hello truffle shuffle
We are all spreading the fairy dust for you and sending loads of cyber hugs .
Xxx
Hi truffle, love and hugs to you. It’s easy to feel that way, but prob unlikely Xx
Hope you get some forward
Plans soon xx
moijan
Hi Everyone…a bit late in the day for me to think straight, but have been meaning to post the details of a charity which was sitting in PALS when I visited this week…its called
The Brain Tumour Charity…
they say’our team is always there for people with a Brain Tumour, their carers, family and Friends.we rovide:free support, and info line, regular information days, nationwide support groups, family days and a series of downloadable fact sheets’,
08088000004
support@thebraintumourcharity.org
Maybe this will help someone to get support if you havent seen this info before xx
love and Hugs,
Moijanxx
Well done Truffle re getting organised.
Would it be easier to live downstairs?
When does the wbr start?
Was there no chance of cyberknife?
Guess you will have had a long look at the options Xx
Love and hugs
Moijan
Xx
Hi Truffle,
ive been on dexa since 19 May and my leg muscles have definitely weakened. I sometimes struggle to get up the stairs (sorry this isn’t what you want to hear).
i was on 16mg a day (8 am/ 8 lunchtime) for a month, but they are now slowly reducing it after my WBR and I’m currently on 6mg & 2mg but the reduction has happened over the last 2 weeks and will continue until I’m finally off them in about another 11 days.
My head /neck / top back is very swollen (like a stuffed cheek hamster!!!) where they deposit fat but am told it will reduce once I finish. Everyone is different though so it may not be as bad for you. I think for me it’s because I’ve been such a high dose for 4 weeks.
It’s 10 days since I finished WBR & last night my hair came out. I’d had it tied in a bun for a week (no washing) but it became so itchy I asked hubby to cut the scrunchie out so it didn’t pull. Well it had been holding it all in place…so bald head again for me.
Babsy - do you have a Maggies centre near you. They do a ‘look good feel better’ session where they give beauty advise & a large bag of makeup / moisturiser / perfume to take home (all donated by cosmetic companies). I’ve not done one recently but did one a few yrs ago and it was really good.
Hope me everyone is enjoying the cooler weather and the rest of yr wkends is relaxing.
xxxx
Hi Peachypat, nice hear from you.
so sorry about your hair…I think we should have one of our much acclaimed Swear Days!
actually we can swear as much as we like…only leaving out a letter or two!
as in What a So**ing Bu**er, losing our hair is! Anyway, I am really pleased that you were able to give us some feedback after the bla*ted wbr…sounds As if you are bright and chirpy ( to a point)1
love and hugs,
Moijan???
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
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
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???
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.
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
Sure , I’m sorry , I didn’t think . Xxx
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???
Hey M
Pm you sweetie, thank you xx
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 
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???
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???
Aaah Marnster,
well done. So sorry about the discomfort.xxx
am praying things get better for you soon…love and hugsxxx
Moijan???