Hmmm yeah, I too was wondering where she was......I've sent a PM message to her hole (that didnt sound right did it ?)
You know that cooking machine will be the most expensive thing you are EVER left in a room with on your own....period ! lol
Wonderful news, Janey, No Chemo and high ER+/PR+ scores.
Does that mean we are going to celebrate with more Fluffy cake? At this rate, I'll be able to stuff a cushion with all the handbag fluff retrieved from my teeth!
3 October for starting your Rads. Oh the joys of being cooked by a huge Linux Accelerator!
That date has been forever etched in my mind as it's the date I was diagnosed with BC. It will be my third anniversary this year, my annual mammogram is next week. More joys of your boobs being crushed to resemble pancakes.
Often wonder how men would deal with having their sensitive parts crushed to an inch of their life. Man flu would be nothing compared to that experience.😱😱😱
Where's Delly? We need to go and rescue her out of that black hole. Grab the ladder girls.
Good news Janey! (well, you know as good as it could be lol) Gosh I didn't realise you had oncotype done as well, did you request that? You've even had your rad tattoos done today as well?? No messing around at the hospital you are attending...ey! I'm glad you are feeling relief, and that positive mindset will stand you in great stead in the coming weeks. xx
Ok sisters, I need to ask what was IN that cake, because reading this I'm wondering what Janey has created? It was so funny to come back this morning and read the recent posts. Right Ho, now Delly, to my mind you are a comic genius.....it's the way you write not just the ideas you come up with....you have an incredibly unique style with the written word, which is not like one I've see before. Even when your ideas aren't funny , and are serious, your style is so honest and heartfelt. Trust me, I was a teacher. Have you considered writing articles for some magazines? You are skillful with the written word, and use it in such a different way to most people.
Janey, I figured you might have a bad night, you know how it is the exhaustion will catch up with you and one night you will just sleep flat out. It was the lack of sleep that got to me during those first few months, infact I got a script for lorazepam and used to just take a half of a 1 mg tablet to get to sleep and stop my brain whirring. I so feel for you today, it makes my stomach churn to even remember going back for my results.
MM I can't believe you bought that skanky fluffy cake off Miss.Delly, AND ate it!!!!!!!!!!!!!!!
Magic - have just read the info link you gave us.
Mmmmm - coffee cake for thought (as oppo to "food for" - come on, do please join in panto wise girlies!).
Seriously tho', interesting. Has made me feel I need to regen up on my hormone knowledge from A level Human Biology days. But basically Progesterone, with regards to the female reproductive cycle, has the opposite effects to oestrogen. . . . naa will have to do that genning up on.
See you all soon
I failed to mention that I was a dentist (not). My handbag fluff is a sure bet to gain extra business, cos of it's extra stickability.
Where on earth did I come up with "handbag fluff" ??!! I'm either a total numpty, or an absolute genius. It's the kind of thing that our beloved late Victoria Wood would have talked about!! What a major loss to the comedy world. But . . 'I' am truely wasted on here. don't you think Magic?? xxxx
Mmmmmmmm....that cake was lurrrrvely.
Have any of you girls got any dental floss? I need to get the handbag fluff from Delly's handbag out from between my teeth!
Hey no - Thank You all from li'l me.
I'm in a horrible black hole at the mo' and it's been such a pleasure to share and enjoy a bit of light banter. Sooo see sweet Janey and et al, you've all helped bring a smile to JellyDelly too.
Just let us know how you do tomorrow - or else i'll come and throw a custard cream pie in your face - Capische woman?
Whoops - I was so guilty at leaving Magic out of the coffee cake share, I got all disconbobulated and sent an empty reply!! Bit like my head.
Good job Janey and Charys were on the ball and cut it into 4, not my greedy 3 - sorry Magic. And I initially thought you were avin a larrrff mentioning Progesterone, as Charys pointed out that she just threw it into the thread to see what confusion she could cause - mischievous imp. I haven't yet checked into the link but shall do after this. Was more worried about you not getting cake. Actually, I'm not a cake or sweet toothed person, am a savoury gal, so I'd have given you mine anyway. In fact, I've still got it in my handbag. Well, I didn't wish to appear ungracious did I, when Janey had gone to the trouble. What on earth she meant by "healthy option" I don't know, but looking at mine now, it's got a few hairs and bottom of handbag fluff stuck to it, so not so healthy. But I can waft and pick it all off and put it up for auction between the three of youhoos. Its gotta be worth a starting offer of 30p. Any bids??? The handbag fluff by the way goes back a few years so is now a valuable asset.
Charys - thanks for the pm. Am not ignoring it.
Janey - again hope your appointment goes well tomorrow
Nite Nite for now girlies
Fascinating article, really interesting! It's always good to hear of the ongoing research, it gives hope doesn't it, no matter what type of cancer. My ER and PR scores are identical to yours incidentally....I didn't even know what they were until tonight when I went in search of my original biopsy report. I didn't understand it much at the time, but it makes so much more sense now months down the line. That report was a year ago, wonder if it's gone any further ?
I've just popped in to have a piece of coffee cake if there is any left. Yummy! 💕
I thought I'd share a link about some interesting scientific research about the Progesterone receptor. I found it yesterday when I was Googling to find some info on Progesterone for Charys.
It is very early days as the current findings are based on lab tests/mice but the scientists are hoping to carry out more studies and clinical trials to see if their findings would be applicable in humans.
I'm always on the look out for information to uplift my spirits and one particular paragraph gave me immense comfort as my BC was ER+8/8 and PR+7/8. I hope ladies, your ER+/PR+ levels were high too so we can all feel the same sprinkling of positivity.
"Doctors have known for a long time that women with high levels of both the oestrogen and progesterone receptors (‘double-positive’) have the best chance of surviving – they respond better to treatment, and their cancer is less likely to spread."
Hugs to everyone.
PS Good luck getting your results Janey. You deserve some good news.
Cafetiere's brewing. Why , just slice the cake into three. What d'ya mean how do we share it??!! Ha. I often wish some of the people I chat with on this Forum just lived down the road.
.....Did you? Love coffee cake! BUT BUT BUT, how shall we share it???
I know you just eat a piece for each of us! Proxy cake eating.
Lynch Syndrome, don't know that one, off to check now......
Well, you are a good statistic Janey, you survived the first cancer, and will the second !!!!!
You know, I so wish we could just all have coffee and cake together
You know Janey, what a total mockery your BC is making of all statistics , as you say ovaries removed and so on.......great stuff ey. Distraction cleaning is great stuff, because it means that after tomorrow if you don't feel like tidying and cleaning it will all be done and dusted, literally! What time is your appointment ??
Ha ha , it was featured because I was wittering about messed up hormones and wondering what effect having more progesterone would have whilst I still had some oestrogen blockage. Basically I was asking tricky questions and then wondering why nobody knew an answer?? LOLOL I know its a fine balance of Progesterone and oestrogen to ensure stability.
Magic, as I understand it, Tamoxifen prevents the uptake of oestrogen by any cell, not just oestrogen +ve breast cancer cells. And is therefore why pre menopausal women as thrown into an early menopause. Some women who are strongly +ve also have to have their ovaries removed because they also produce a certain amount of oestrogen.
I don't know much about how Progesterone figures in all of this and can't remember why it was featured in this thread in the first place.
Evening Primrose is often recommended for female hormone imbalances, be they PMT or Menopausal.
Janey, forgive me, I'm not ignoring you. I hope you're appointment tomorrow goes well and you have all your questions answered. Don't forget to ask about your joint probs.Glad you feel better from retaking the Glusosamine.
Lotsa love Delly xxx
Magical Moon, you are such a wise woman, everything you say makes sense......whenever I read your replies on this forum they always make me feel calm ( and I'm talking any replies here , not just just these ones to me). Things you say are so meaningful, and you've pinpointed exactly how I feel right now. I wish You felt no pain, but I guess all we can do is support each other at these low times to get through the sh*t stuff. Thanks for caring x
hey Delly, you bundle of infectious energy and unique Dellyness, I will reply further to your PM later. I wasn't even perimenopausal before taking it......BUT......I am wondering if I certainly am now...and it's set off my hormones down the peri/ menopause route.
My husband swears by glucosamine.....he's taken it for about 15 years now everyday....but he just has 'rickety' joints, nothing bad pain wise lol. I hope it's on your 'can take' list Janey. Soooo you kind of are an old hand, having been through it once before in a different way......it make me freaking mad that some people are so unlucky. What's the point about being angry though, that's a negative emotion which saps energy and doesn't help with constructively moving forward. I just feel upset for everybody...it's not enough just to feel upset for me....now I've got to move it to everybody LOLOLOL
I was going to use similar language myself but thought I'd get banned from the Forum.
Yes, I do take Omega 3, 6 and 9 and my GP has prescribed me with Amitriptyline for neuropathic pain because I'm allergic to all the usual strong painkillers and anti-inflammatories. Amitriptyline has helped to reduce my chronic joint pain from very severe to a medium level of pain but, unfortunately, it does not help at all when I first get up in the morning.
If you saw me walking first thing in the morning, you'd think I was walking on a carpet made of six inch spikes. Not a healthy look.
Wondering whether to try acupuncture before I give in and buy a walking stick to use in my bedroom. 😢
Forgive my language, but this disease really is a B#GG#R.You make me feel soooo thankful. It saddens me so much that you're struggling so much with your joints :-(( Is there nothing to help, have you tried such as the Omega oils/Evening Primrose Oils.
Ooops, so sorry Charys,
There isn't a 'Not interested Oncologists' thread. It's my fault for the misunderstanding, the way I worded my sentence was misleading. I'd responded to a lady's post and made reference to my experience of oncologists being only interested in you taking the hormone therapy and not about the side effects. Or words to that effect.
I agree with you. There does seem to be a GAP for helping and supporting ladies who experience significant side effects from BC treatment. This Forum really helps to fill the gap and I don't know what I would have done without it. There are a lot of ladies like you, Delly and Janey who have had tough times to deal with yet can still offer support to others.
At the start of my hormone treatment, I felt guilty about complaining about my extremely painful joints. It was as though I was being ungrateful for having life-saving drugs. Why was I complaining about suffering side effects? I was still alive. It's strange how your mind plays tricks with you when your physical defences are down. Every morning I wake up and can hardly walk when I first get out of bed. All my joints have seized up and the pain in my ankles is excruciating taking those first steps. After being an active person, it has been hard to accept that this is as good as it gets. For me, it's a Catch 22. Without oestrogen, my body can't function normally but with oestrogen I'd be gambling with a devious disease.
I'm an exhausted BC survivor when I really wanted to be an energised BC survivor. It makes me sad some days.
Hi again Charys
Well , you stuck it longer than me. I took it for 2. Another thought, as I've noted your still pre menopausal, is that we are all so different in our hormone levels. Some have higher oestrogen levels than others. I was a very high oestrogen receptive cancer, which didn't surprise me as I'd always suffered really bad PMT.
I'm also wondering whether you are actually going through the menopause?!! Which could account for some of your emotional swings also. How old are you now? And are you saying you have IBS - please remind me what that stands for?
Hey - I'm so sorry this is getting to you in the way it is. But also,Charys, I'm here with you to give you whatever, if anything I can. Just keep talking to us - me, will you
Oh Janey, I didn't realise you were so early In your diagnosis, you have the 'old hand' feel about you lol that isn't meant to be rude lol, it was a compliment about your 'in control' attitudes, as if you are years out of treatment. I promise I will listen to you when and if you have complaints about your meds. Not that I wish side effects on you of course ...I hope you have not one !!!!! Janey, on weds come and say how you are getting and your treatment plan, won't you ?
Delly, you know what, after 48 hours I could feel a change in my mental state.....5 days and the major depression was gone...but this is why I think now all my hormones are sc***ed as my period is up the spout and PMT feelings all the time and Into my 10 th npmajor IBS week. I guess I just need to give it a bit longer, get a grip and stop moaning actually. Yes, I should stop moaning a bit and get on with things and just be patient. I've got some TEVA brand here, and will have another try at it once I feel 'normal'. I'm usually so strong and positive, and laughing all the time, but this stuff has really got to me.
Anastrazole is a different drug so don't be frightened by our talk of Tamoxifen
Hey again Charys - how long ago did you take Tamoxifen?? And are you doing okay now?? Let me know flower.
Charys - I felt instantly better literally within two days of stopping, and was then why I told my Onc team I'd prefer not to carry on with it. But, other people did say they had different experiences/side effects dependent on the manufacturer, and had to find which one they were ok with and stick with it. The decision not to take was a very personal one for me and I was prepared to suffer the consequences of not taking it, because my mental state with was seriously DIRE with it. I don't like tablets full stop.
I have known and heard of many women who didn't suffer ANY side effects from Tamoxifen throughout 5, 10 years of taking it. But . . .it isn't the same for all
Thank you Janey, MagicalM and Delly....you are all so caring and it has cheered me right up to see your typed words. There are many truly wonderful people on this forum, and at the risk of becoming maudling and overly emotional (not a good idea to tempt things in my present teary state) , it is such a comfort to know this virtual world exists.
Hey lovely Delly,
Yes, the depression was all encompassing, it was like my head was just telling me to not 'be here', there was nothing worth living for. I know that sounds dreadfully dramatic, but it felt like a psychosis, and I don't want to scare anybody (it is RARE and it stops once you stop taking the tamoxifen!) I've never experienced feeling so physically ill and mentally ill....it was like 'me' had just gone, disappeared and been replaced with a 90 year old ill woman with so many health problems that no life quality remained. I can't describe it very well, and I don't want to go into all the side effects as I've listed them here before about a month ago (and almost feel guilty about doing so, incase others read it who are just starting) but it was absolute hell. So, Delly, how long would you say it took to stabilise after stopping ?
You KNow Magical, I was talking to someone about this the other day. I am so grateful that there is treatment, dont get me wrong, there are clever medical people who want to keep me well.....but its like you reach the end of the conveyor belt, get given the prescription and chucked off the end. There must be many oncologists who are more holistic in their approach, but I guess in the main they are about 'curing' cancer and the body. The hard bit of this whole cancer thing for me has been the very time when I feel there is nobody medical to help, taking the tamoxifen. I just find it strange that everybody knows women really struggle with these long term hormonal treatments and maybe there is little that they can do to really help with side effects, but there seems to be a massive GAP in support after active treatment from oncology. Well, ok, there is where I am right now!
Hey Delly !!!! Good to 'see you'
We are hormonally challenged here at the moment lol
It is a mixed blessing having the 'insider' knowledgeable person, as she also knows all the statistics and recent studies and so on, and knows the importance of tamoxifen, but hasnt experienced the awful life changing effects some people get...so she sees it from the medical rather than the 'whole person' side...if that makes sense. It was very helpful when I first had my detailed biopsy copy, as she could explain everything, but I have found that my choices as a patient (I was chemo borderline and didnt have it) often don't mirror her thoughts as a surgeon...a bit tricky sometimes. Its hard to explain.
Wheres your 'not interested oncologists thread' I must find it....I have a contender for the award. LOL
Umph Charys - I DO have some experience of Tamoxifen in that I experienced a huge depression when taking. So much so, that I stopped taking it. I WAS told that often the manufacturer/producer of could make a difference, and it can be a bit hit and miss as to finding one that suited. I chose not to take it at all in the end. I'm not saying you should do the same, but with me it became the difference between living with a better quality of life without it, than living with it and suffering.
Thanks for the info Charys.
Six weeks to fully exit your body! Will it be the same timeframe for Anastrozole?
How lovely to have a surgeon friend with BC knowledge. Wish I had one too, it would be comforting. 😀
You've had a horrendous time on Tamoxifen. I hope you get results soon.
PS. Coincidence, I've just posted on another thread about 'not interested' oncologists. Their main goal is to get you on the anti-cancer treatment regardless of how it affects your quality of life. It ticks the box for them but for us, we are left to pick up the pieces.