Sadie, I am sorry to hear your news, we love your cheery smiles, but you are allowed a day or two off to say rude words and cry.
Hope you may be lucky with Cyberknife, and the new chemo
Hugs
Lavender
xx
Hi. I dont know how id have got through yesterday without you wonderful wonderful ladies nd my OHs shoulder!! Every half an hour i logged on to find another fantastic message of support. Thank you so much for taking time out to post!! I am better today but still delicate!!
Hugs to you all on this journey no one wants to be on…and where no metter how hard you work you dont always get the results you deserve!!
Sadie Xx Xx
ps Smiles will be back soon.
Hello ladies
Hope everyone is doing ok today 
Sadie- Ive sent you a pm. Hope you are feeling a little better about everything. I am keeping everything crossed that the carbo works wonders for you as it did for me x
Rachel- how are things? How is the baby? Hope all is ok x
Laura- hope you are ok. When is your next scan and review? I spoke to my new onc today about the prostrate drug trial but she wasnt aware of it being used with bc. She said to find out more if i could. Do you know where the trials are being held? From what I have read online, I wouldnt be eligable even if I am found to have androgen receptor positive bc as the trial criteria says ladies over 45. Will do a bit more research on this i think x
Sarah how are you feeling? Much better I hope Resally sorry to hear you were so close to the miner tragedy. I live down the road from where rhys jones was killed and I remember how it rocked the whole community. big (((hugs))) x
Linda- great to see a post from you think we were all a little worried about your absence. How are you doing? x
Kelly- thanks for coming online to congratulate me on my scan results. I often think of you and wonder how you are doing. Do update us- hope things are going well x
Lavender- hope all is good with you too x
Wendy, Jo, Jo and sandra (and anyone else Ive missed too!)- hoping you are all feeling ok and treatments are going well xx
I met with my new onc today who seemed lovely and much more positive thankfully! She wants to do some further investigations and review my scans, which I am pleased about. Someone finally wants to look more closely at my chest wall instead of fobbing me off and saying its ‘probably’ rads damage. Its really painful and solid, and there are changes to the scarline as if its slowly breaking down. She is referring me back to my rads onc for his opinion and maybe arranging a pet scan. She has advised regular painkillers too. There was no info on the actual size of the enlarged node in my chest but she is reviewing the images anyway and having her own radiologist go through the scans for me. She will also look into why there is no mention of the superclav node which is clearly enlarged. Once we have a clearer picture of what is going on then we will discuss treatment options propely. We both agreed today that we should try another course of carboplatin if need be, given it was so successful last time round. She treated another tn lady recently who had 3 courses of carbo before she became resistant to it so Im hoping I continue to respond given the minimal se’s…
Im hoping to see her again in the next 2-3wks and at some point see the rads onc too. so I have a few weeks reprieve- keen to start some sort of treatment but dont think its mega urgent and would much rather have the full picture before we proceed. Its my hubby’s birthday next week so Im gald we’ll be able to celebrate that
Thinking of everyone on here- its so bloody hard isnt it living from scan to scan but as lavender rightly said, we’ve got to keep on keeping on and do everything we can to stick around for as long as possible…
Love to you all
Tina xxx
Jo (Hope)- how are you? Are things any better? Hope you are ok x
Hi everyone
I hope you don’t mind me sharing my scan results with you but I’m feeling a bit weird (ie a bit happy, a bit confused, a bit not sure)
Scan shows no further spread - yippee
Radiotherapy to neck and breast has reduced lumps in both areas - yippee
Onc is happy not to put me back on chemo for the time being- yippee
He will monitor me closely and when things start to grow again he will put me back on chemo,
His view is all about ‘quality of life’ and provided I don’t spend my time worrying about not having treatment, this is better than having chemo and dealing with SEs. He doesn’t believe he is shortening my life in anyway, just delaying have more and more chemo.
It sort of sounds right - but I’m just a bit confused.
Linda
xx
Tina so glad to read your news this new onc does seem to be listening to you and and treating your like an individual… hope you get some more answers over the next couple of weeks so you can start on any treatment you need… looks like you have a lot of people taking interest in your care now.
Linda fab news about your scan… hope you have a good bit of respite before you need anyt more treatment again… im sure if you did happen to notice new symptoms between scans they would check you out sooner too… if you have chemo when you dont need to have it then it means it may reduce your options in the future… so i think it sounds like a good plan hunny… hope you can get your head around it and feel comfortable with it.
Lulu xx
Hi Tina glad you got on well with onc my scan is 27th then results 4th oct all I can tell you about the trial is i gather it’s the Marsden as that is where I’m treated and they made the tablet so my onc tells me my tissue is Beeing tested as we spk so I will know on the 4th if I can go on it not had treatment for 5 wks now so a bit worried about it growing I’m hoping to get away with any treatment to after Xmas want to enjoy that but who knows we just don’t know what the scans will show just enjoying my chemo free time and hoping my hair will start to grow soon hate Beeing bald take care hi to everyone else hope y all ok xx
Hi Lulu
Thanks for your reply - it does make sense about not using up your options too soon. I’m sure I’ll sleep well tonight - although my OH prefers it when I don’t (I snore very LOUD).
I hope you are keeping well - I’m sorry I’ve lost track of where everyone is with things - I must sit and catch up this weekend.
Tina - it looks like we were both typing at the same time so I missed your update. It sounds like you’ve found an understanding Onc and that she is listening to you, not just talking to you. I do hope you start to feel like everything is being checked out - its not too much to ask, although you’d think it is with some people. Enjoy your hubbys birthday.
Wendy - we haven’t spoken before - so hello. Was today your first Gemcarbo - did it go OK? I hope it did. You’ll have to keep us in the picture
Laura - good luck with your next scan - it would be great not to be on chemo at Xmas - lets hope thats one of your Christmas presents
Sadie - I hope today has been a little bit better for you and that you are enjoying the many activities and happenings of your children - I love hearing what they’re up to.
Off to bed now (early I know - but it stops me falling asleep at work)
Linda:)
x
Hi Ladies
Lulu- I have sent you a pm. Missed you off my post above sorry, coz I was planning to pm you anyway. Hope you are recovering well x
Laura- best of luck with your scan heres hoping you can have a treatment break x
Linda yes our posts crossed! Great news about your scan I understand your anxieties though- I go into panic mode everytime they mention holding back on treatment. Im sure they will keep a close eye on you in the meantime and it will give you a chance to get your strength back up before your next lot of treatment. Well done you btw on still working! You deserve a medal! x
Keep meaning to ask if anyone else on here is taking Essiac Tea??? I had read quite alot about the benefits of it but it seemed really complicated to brew etc so didnt pursue it further intially. Since june, My lovely auntie has been buying all the ingredients and brewing batches of the tea for me and I have been taking it daily for a few months now. Cant help wondering if it has contributed to my good scans?? Ive also started on daily linseeds too as there is lots of impressive reserach on linseeds and tumour shrinkage and a recent article my mum read said it was particularly effective in women with hormone neg bc so its gota be worth a try. Ive had them before and just sprinkle them on cereal or mix with yoghurt. If anyone wants to read the article, I could email it to you.
Hope everyone is ok xx
Hi Everyone
It’s such a fast moving thread it’s hard to keep up - or is that just me :-S
Linda, brilliant news on your scans. It sounds great to take a break while you can and make the most of it. I really hope things continue to come back positively for you for as long as possible.
Gingerbud, I’d love to read that article on linseeds - perhaps I could google them to save you the hassle? I was wondering if anyone has tried curcumin? I’ve read good things about it but no-one else seems to have heard of it. I’m beginning to wonder if I’ve imagined it, lol.
First GemCarbo today, glad it’s in and done. So far, great, although obviously side effects can take a bit longer to show but I can’t complain so far. I’ll keep you updated on how it goes, especially for Sadie.
Hope everyone gets a good night’s sleep, refreshed for another good day ahead.
Wendy
xxx
Hi to all,
Coming in today with a cautionary plea for you all to check with your oncologists re flax seeds and other sources of Omega 3 or 6, re the recent study on whether Omega reduces the effectiveness of chemo/possibly induces resistance to chemo. It has been discussed elsethread but not sure it has here. The study reported has been on mice, but I would hate for any of you young things to be getting anything less than 100% effective chemo.
There is a lot of stuff out there about how Omega s are good for us, but everything has to be balanced re pros and cons.
I think it has been studied in relation to cisplatin but check with the oncs, they should all be aware of the research.
KOKO girls!
hi all , tina i am so glad you have had a good app with new onc it just restores confidence doesnt it ???sadie i hope you are feeling a little brighter although i know its hard hugs xxxwendy good luck with gem/carb hope it does great things hugs also to everyone starting new treatments or having scans with us trip neg girls there is always changes and scans etc i find it hard to keep up so am sorry x my little bethany is so scrumptious i feel a mixture of delight and sadness when i cuddle her just hope i can be around to help my daughter with advice and babysitting lol.i feel increasingly tired finish chemo for a week tomorrow and side effects are minimal otherwise but not convinced its working and have written to onc expressing my concerns but we have to go with what they decide (he is a lovely man )all outer lumps have gone and they were so sore but 2 new have popped up so is worrying with bone involvment too but will keep plodding on and see what he says…just wish i had more energy but think bondronat can make you tired too … is anyone on it too ? hugs to you all love rachel xxx
Hello Everyone
I agree that the thread moves so fast it is hard to keep up, but first to say sorry that I haven’t posted for so long.
Just to pick up on the diet stuff first.
Tina - Thanks for reminding me about Linseed. I have a ton of it in the cupboard and must start to use regularly. Is it true that it is better to grind it so that it releases the goodness? Otherwise it just passes through… (Don’t you just love the euphemism?)
Wendy - I read a lot about curcumin (derived from turmeric) in my brilliant book called “Foods to Fight Cancer” (I think). In that they reckon that if you combine Turmeric with ground black pepper it is even better. So now I just habitually use both on any savoury dish! I’m getting used to yellow food.
My own news is good and bad. Things pretty stable at present on the scan front, but pain in my chest wall has shot up. I am now getting to grips with pain control regime which combines Amitryptiline plus small dose of Morphine at night, Naproxine in the morning (plus Omeprazole) and Codeine Phosphate prn for the rest of the day. This is working ok at the moment. Interested to know what everyone else finds good.
Still attempting to work part time, but if this involves any travelling I spend the next day recovering as I just feel yuk, not tired, but yuk. I don’t actually ever feel particularly tired, but there is no word in the English language for how you feel except maybe “rubbish”. Anyone suggest anything better?
Sorry to hear that things haven’t been so good for you Sadie. Will keep you in my thoughts… as I will all of you great people. I will try to keep up better now.
Love to you all
Jo (Tara8) xx
Posting gone mad, cant get rid of this one. Sorry!!
Sadie Xx Xx
Hi ladies - Ive got my smile back!!!
Tara8 / Jo - Lovely to hear from you. ‘rubbish’ is a good word - how about ‘out of it’ (but that is 3 words!!), what about ‘pants’!!! Im glad you are mamaging the pain and you are doing well to work aswell! As long as you enjoy it??
FQ / Rachel - Do you have a video camera to record precious cuddles with Bethany? Im going to buy a new one on Saturday to record ‘everyday’ things. Sorry, cant help with the bondronat. Hugs!!
Lavender - thanks for reminder about Omega. It is difficult to know what to do. My Onc just says ‘you have to made a choice yourself’ which is not a lot of help. I try not to get carried away with ‘try this’ and ‘try that’ and evaluate things - but I also want to try things that may help!! An open mind and a balanced approach!! KOKO with hugs!
Wubbly / Wendy - I do hope the SE are still miles away! Thank you for saying you will keep me updated - It will really help me to know. I am only on Carboplatin so will be a different to you but please please let me know how you get on! Thanks.
Hi Tina - Thanks for PM. Im going to PM you back and ask for Carboplatin ‘highs and lows’!! Glad to hear people have had three ‘lots’ (im assuming each ‘lot’ is 6 cycles) - and it works well!! Fingers crossed! How was Disney? Ive not heard of the Essiac Tea - interesting. I will read up!
Sorry - POSTED without me pressing the right button -MAD! Will do a second post!
Hi - Me again!!
Linda - I think about you often and pleased to hear you are OK! Scan good!! FAB!! Enjoy the break! My kids are lovely - as usual! Lots of sport! My son manages to run away from a rugby ball very well!! My daughter has just got into the county netball squad - she is delighted! Thanks for asking! Hugs ((((Xx XX)))
Jo/ Hope - keep going with taxol / avastin!! It is soooooo hard, every week. But you can do it!! I loved your black cloud analogy, thank you!!
Hi laura64 - Glad you are having a good chemo break! Enjoy!!
LuLu - Hope you are OK?
I just want to say ‘thank you’ again to everyone who took time to post support for me at the start of the week. Had a good chat with my ONC on the phone today and reviewing my scans she is delighted how the Taxol / Avastin has worked. In Feb I had 15+ tumours in my lungs. We are now down to 3 or 4!! FAB! These are now growing, so the T/A has come to the end, but I am actually pleased it has had such a dramatic effect! I wish she had said this on Monday - not ‘its stopped working, we need to change it to buy you a small amount of time’.
Had a lovely lunch with Jo from this site. Was really nice to chat and share experiences of sunny worcester. Jo - I do hope they have sorted your line out and hope tomorrows chemo goes well.
Hugs to everyone ((((((((((((((XXXXX)))))))))))) Hope that is enough to go round!!
Sadie Xx Xx
Thursday, today, district nurse came to take bloods this morning as she does every Thursday on this new regime so hospital has the results for consultant in the morning for some reason the little White soldiers are v good which surprises me as problems on a once in thee weeks cycle back in 2004. She tried for about 40 mins but the line was not having it despite all the strange positions and movements I had to perform. She then rang the hospital and spoke to a sister on the chemo ward who said I would have to go up by 2:00 pm.
By now it was 11:45 and I had arranged to meet Sadie at Blooms (local garden centre) for a sandwich and coffee she really is as nice as all her posts on BCC and looked really good no visible signs of the big “c” just hope we can do it again soon!
The ladies in rugs (mine is called Flo) do lunch!
Arrived at hospital at 2:00 as asked shown straight into chemo room, things are looking up I thought - no such luck. Lisa, Helen and Ronnie all had a go & yet again strange positions etc. They then put me on drip for 30 mins, tried again by which time line leaking & nose bleeding.
The outcome at 5:30 was - fibrin sheath around the line
Now they had to find out what to do with me - Cheltenham ( please no), it was decided that they could put a dressing on it & I could come home, ring Cheltenham if any further probes tonight but to call about 10 tomorrow to see what my consultant wants to do but it means lineography (think that’s right some type of x ray) & line will be taken out & I guess new one put in, when & where who knows - now you will see why can’t make plans!,
Definitely no chemo guess lucky they found it was leaking.
Sadie sent you v v long probably boring & must have been adding above at similar time to you lol
Nope no chemo tomorrow watch this space
Loved it today great to meet you!!
Hi all hope y doing ok went to gp tonight for check up I asked about work to my surprise she sd no gave me a sick note for 6 months off that please them other than that doing ok scan tues so will know more then hope y all ok have gd eve Laura x
My goodness Jo - you really have had a horrible day, I feel tired just reading what you went through. I do hope that they get you sorted quickly.
Sadie - you’ve made me giggle thinking about your son running away from the rugby ball - it sounds quite a wise move to me (can you tell I’m not a sporty person!)
Laura - gosh Laura a sick note for 6 months, thats a long time, how do you feel about that - is that good for you if you know what I mean? My doctor only liked doing sick notes month by month although I was constantly telling her I wanted to get back to work. Although some days I wonder why I went back so quickly. Fortunately I have a brilliant boss who lets me dip in and out of work as I want to - even though I know I’m a damn nuisance to the business. Its good that your GP is taking control of things for you.
Take care everyone else
xx
Hi all,
Off to have my lung biopsy in the morning, really looking forward to it!!! Have a feeling that it won’t be good news, so preparing myself for the worst again.
Really sick of this, but will have to face up to things the best way I can.
Take care everyone,
Jill xx