Breast Cancer Now Forum

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  ... View more

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 ... View more

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.  ... View more

Haven't checked in for a while.  Good to catch up with what's going on. Well seaside lodge purchased outright and we' re moving in next week. Can't wait , so excited. We are literally just across the road from the beach. Cant see from lodge as the beach has a bank above it and our place has a bank at the top. But you can hear the sea from our decking. Like most people I absolutely love the sea and it is a dream come true    ... View more

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.  ... View more

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  ... View more

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  ... View more

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 ... View more

Mucho love and support to you all. The latest and most successful drug so far was approved in the US in February of the year, it is called Tykerb. I was reading through my medical notes yesterday and I realised that no-one has acted on my locum's recommendation to have me re-tested for HER+. I know that have requested it since. I know, ( through other sources) that I am. The FDA in the US authorised a drug called Tykerb in February of this year. It is having marvellous results and I'm going to get it. Watch this space my lovelies 🤠🤓🤗 ... View more

Hi everyone, haven't posted on this forum for a week or so, as I mainly use another forum now. However, I missed all of you lovely ladies so have caught up with the last few pages. Has anyone been to a breast cancer  meeting ? They're having one in Maidstone on Monday, came across it by chance ( pressing wrong button on IPad).  Ive got extensive mets in my skeleton including my entire spine. I'm fortunate in that I have no problems in my spine. The reason my spread was found is that my GP thought I had Piriformus syndrome. Eighteen months later it was found that I have extensive bone mets. Apparently, the original treatments hadn't worked so I'd been walking round about 8 years, without any real symptoms.  Funnyface, congratulations to you. I told you there would be a new pathway for you. You will be sorely missed I'm sure.  Welcome to newbies, you'll find loads of support on here with these gorgeous funny ladies.  ... View more

Hi Truffle, Capecitabine is the one of the few drugs to cross the brain blood brain. I get advice from aN integrative oncology service. I received a personalised report and many of the things recommended in their have made a REAL difference to platelets, white blood counts and the minimum of side effects with treatments. When I contacted her and updated her she recommended taking R-Lipod Acid Liquid 1dropper 3x times a day in an 8 oz glass of water. It opens the blood brain barrier and can make treatments more effective. She also recommended Boswellia Extract 500mg 6 capuseks to be taken 3 times a day. They're having exciting early results with cancers that have crossed into the brain. Both are cheap and are available on Amazon ( other chains are available ha ha ) I hope this may helps . Hugs  ... View more

Lissa, Carolyn, Moijan and Marnster Thanks for the support guys it is SO appreciated 💗💗💗love emojis ha ha x  Marnster sorry that you've ended up in hospital, but it's the those bugger germs that get circulated on planes. I've often worn a surgical mask in these situations or in waiting rooms etc. Get funny looks but who cares? Husband possibly, but tough Titties. I must be easy to live with eh😆😆 When we had our family holiday on IOW to celebrate my 60th and the 💩Hit the fan, I'm separating the good from the bad and cherishing those memories. Others in the family are finding it more difficult but that is their journey. I have grown so much as a person since MBC diagnosis.  I also love seeing your pictures so I'm going to indulge myself and post two. Sorry folks!!    Truffle, my thoughts are with you. Take care xx  ... View more

Thanks Carolyn and Moijan. Managed to feel dizzy and fall backwards into the fire place this morning. Skull always bleeds at lot but not deep but it was yet another trip to hospital. My husband is a former army medic many moons ago so he was really good. I had loaded and unloaded dishwasher and showered the dog cos I felt energetic. Lesson learned ha ha ...take it easy!!!! when you mention 16% how many of us were diagnosed with mets after 5 years, I was 8. I had complained of aches and pains and went to GP. When they found I had extensive  bone mets and bone marrow mets. So much so they gave me a lumber puncture to see if it was bc and not another time. They don't thing any of the the treatment that I'd had had worked. I'm grateful for that time.  Also, I know that some bc patients don't know want to know or think about it coming back, but there are lifestyle choices which could reduce risk. I'd rather people be given the information they can choose to even read it or not or to take any action. My new purpose in life. Also continuing to indulge in my art, there are tons of local local galleries in Whitstable. I'm going nowhere fast.  ... View more

Hi Angela, blitz fruit as a smoothie. It's good, slow release sugar and will help you. Also you can add supplement powders. Add sweeter veg, such as carrots, beetroot. I use organic beetroot juice as my base. Yummy, not hard to swallow, food of goodness, boosts energy, eating the pulp as fibre helps the gut. Also make make sure you are taking a GOOD quality pro biotic for your gut. Recommendations include product on canceractive.com,  megafood, megaflora. Nutritionist recommended to me Nutricology ProGreens powder which I put into either organic fresh orange juice or Biona organic red grape pressed juice and I add other things like Astragalus, turmeric, pinch of black pepper, dash extra virgin olive oil, sachet of Lypo-aspheric vitamin C. Then I just hand shake it, and down it. Only about 8 oz of liquid  needed so just a small standard glass. Definitely doable. Has to be taken on empty tummy so I take mine an hour before breakfast. All stuff available on Amazon, but do watch prices. If often google each product first to see if I can get it cheaper.  ... View more

It would have been lovely to have met you. Lesson learned, I obviously will be holidaying in uk so I should post  where we're going. We've decided to downsize from our 3 bed bungalow to a holiday lodge near Whitstable in Kent. We had a static caravan on there a few years ago when the children were young. We need to release the equity early in early to help one of our children and the other one will now get a large chunk deposit for her first home and I get to see it, and be involved. Getting really excited about this and I know I can get my husband settled and secured and we're literally just across from the beach and then surrounded by countryside.  WBR knocked the stuffing out of me yesterday but then then there were also a house full of people clearing house, decorating and I just lay with my feet up, cuddling the dog ha ha. I'm gonna get my hubby to buzz my hair short today so that I can get the pot of skin cream onto my scalp rather than in my hair. When I go bald I intend to get a henna tattoo  on my scalp and I want it to advertise MBC, to try and highlight lack of research money as oppposed to early stage. So any thoughts or ideas will be greatly welcome.  Truffle hang in there girl. ❤️ Thanks for the kind thoughts everyone.   ... View more

Hi everyone. I've my two longer session of WBR. Who knew that fried brain smelled like cabbage ha ha. Dexamethasone is not quite controlling the pressure at the moment but I'm a staying calm as possible, especially while trying to cope with a major family crisis we're going through  with with one of our daughters. Kids!!!!! Love will conquer all. ❤️ Initial side effects, cramping feelings in legs which thank goodness didn't turn into actual cramps and one episode of dizziness this am.  ... View more

Hi Lollymum, I would just like to say if you think that they should have given you diuretics you should have insisted. Over the course of this disease I have learnt to be quite forceful (but polite) about what I know my body needs. It's my only level of control and after all, it is my body. Hope you get a couple of days away does help you regenerate.  ... View more