Thank you, yes it has lifted me so much , It was like being hit with a sledge hammer . I do feel more poritive now. I had a couple of lovely replies on private message , I have been trying to reply , but , the link seems to be taking a nap . so if you dont get a reply from me soon, honestly all info was brilliant and has given me hope .
keep well xx
Thank you so much for your informative reply Julie d.
It has lifted me , I am planning my funeral at present , and The thought of WBR , sounds very barbaric to me , but you have given me some hope that this could be doable for me , oh and breath !!!! . i could handle the liver , bus as you sat the brain, is me, its personality , its memory its human . so to hear that I may be ok after this and not a vegatable is very reassuring.
bless you and keep you well , so very grateful xx
Hi again Truffle,
hope the link worked?
let me know if notxx
there are few ladies on there who may have ideas xx
Hi Truffle Shuff...
So sorry you now have this new worry....fortunately, im able to point you to a newish thread which you may find useful. The thread has quite a bit of helpful info on it now.and others who are in your position or have been..do have a look.
and lots of hugs for you xxx
Truffle-Shuff, Well that result , I'm sure put you in a spin. The liver seems to respond well to treatment for most. I wonder if it is bc of the livers own healing ability? Do you know what chemo you are going on? Have you had capecitabine? It can pass through the blood/brain barrier. Have you had any appointments with I'm assuming a neurologist/oncologist/radiologist team to discuss your plan. My experience with friends is that they have tried to have each tumor zapped if possible, saving whole brain radiation if absolutely necessary. You need to find and read some positive stories on this! There are woman out there who have done wonderful for years. It's OK to be scared, I know most of us would be a basket case! We are here for you. FF
hi truffle stuff,
Sorry to hear your latest scan results and understand how frightening it must all be. I only have bone mets so can't speak from personal expeience but I have lived with SBC for more than six years now and I know women and have quite a few friends who have liver mets and I also know a few who have brain mets.
First the liver mets. The liver is a remarkable organ and is very good at working on greatly reduced capacity,in addition to that treatments can be very sucessful for many years. I can' give you exact timings etc but I do know tat some of the liver mets women I know have been living with it for 6 or 7 years plus and though they may have had to change reatment at some point are still doing well.
Brain mets are scary for anyone to think about, because we see the brain as being 'us'. The treatments you get for brain mets vary depending on exactly where they are, how many, how big ....There is surgery, whole brain radiotherapy or targeted radiotherapy (steriotatic/cyberknife). I have known women who have had these procedures, some of them have had more than one type ie surgery and then later radiotherapy. Most of those I know who have brain ets have been diagnosed more recently, about 2 years ago. The treatments can make you very fatigued, you might get thinning hair, headaches for a while and sometimes speech and memory suffer for a bit but none of the women I know has ever said they regretted having treatment and they do seem to improve as time passes and things settle.
I don't know if this has been of any help to you, I certainly hope I haven't added to your concerns. What I'm trying to say/demonstrate is that even when we fear the bleakest outcome there are people out there that prove you can be treated and continue to live a relatively normal lfe.
I send love and strength to you - keep in touch xx
Sorry may be in wrong thread , but I need your wonderful thoughts and experience. I have been treated with Fulvestrant for bone mets for 6 months. scans yesterday show , liver and 3 mets in brain. terrified, will be back on chemo for liver , then if that stabalises will be offered hole brain radiotheraphy, now that scares me , surely that will leave me with lots of problem.
Does nyone have experience of this
thank you keep wellxx
Maldives...can you be a little more specific about 'George'.? iguess Carolyn could tell you, I have been known to make the odd . Risque hint on the forum!
Carolyn..re chocolate....im convinced there are beneficial substances in choccy, particularly black choccy.....wonder if major consumption levels works against them tho? But chokky overdose...what a lovely thought!
also...'sell by dates'. i dont go much on those eitherxx. Just set up home in the fridge?
in a funny mood today after a slightly better sleep.
oh and Avrelia...congratsxx
OK, My oncologist and had been in India, and the oncologist I don't like had given me my scan results. He had said stable, some improvement in some areas and a possible growth in one area. My oncologist went to the hospital to go over it. Yes there are improvements and stable areas. There is one area in the bottom of my left lung that they started watching in Oct. I knew this bc I'm going every 3 months insstead of 6. This area was suspected of being ground glass again. Ground glass is haziness in lung. Also, this time there is a new 1 cm nodule. The radiologist and the oncologist took a closer look at the nodule and said that they aren't convinced it is cancerous bc it's make-up looks different than a cancerous one. They said the haziness could be infection, a reaction to ibrance or cancer. They think it's from infection or ibrance. I do think it's from the cancer but have agreed not to change meds. I had ground glass before in same lung, but top of lung. Ibrance made it disappear. I find it funny that now insurance could be the could cause of this ground glass. Also, I'm very leary of this new nodule. I also find it strange after all this time that ibrance is still shrinking other areas that I have a growth. I feel fine so we are going with that. I wouldn't be surprised that my ibrance journey will be over soon. Hubby and I are trying to go to Florida for our 35th anniversary. We want to leave April 26th. My appt. is March 30th. I hope I'm able to go. I spent my 30th anniversary in the hospital. I don't want to have my 35th ruined! FF
Oh Sue that tassimo coffee machine is the one that George Clooney promotes isnt it? Does he come complete with the machine to actually pour it for you as well ... if so I might get one as well !!!
My retail therapy was boring stuff really ... but flanelette duvet covers so it will be all cosy and snuggly tonight in our household .. lots of mmms and aaghs when we get in them I hope !!
Im also thinking of a new bed ... been looking online but cant decide whether to go all romantic with a white metal one with hearts and crystals or sensible oak wood .... decisions decisions !!!
FF .. hope your visit to oncologist goes ok and things are all good.
Maldives, I haven't heard of a tassimo coffee machine. Will have to goggle it so I can keep educated!
Stresshead, I eat a lot of veggies, but do you mean 10 servings! Like a 1/2 cup of each? I don't think I could eat that much! I have been eating a healthy veggie soup for lunch. It has cabbage, carrots, onion,garlic, green beans, zucchini, broccoli, diced tomatoes and broth in it. It counts as 0 points on the Weight Watchers program. Only 50 calories in one cup. I've been eating the soup instead of salad for a few days. I was bored with salad.
Carolyn, I love chocolate too!! I don't buy it bc I don't have any control if it's in the house. Although, I will say there was some here over the holidays and I did very well at saying NO every time it called out my name! I don't want to have to deal with that in a daily basis!! I also don't go down the candy isle.
OK out the door to see oncologist, she is back from India! FF
Hi sweet ladies, hope all of you are fine. Just popped in to say hello before I start work. Me have finished Chemo(for the time being) and now on Tamoxifen. Have never had my period since I started it almost 2 months ago. First scan showed some improvement so I guess that they rely on these little white pills now to make it improve more....
Life is beautiful, meanwhile, when you do not have to go that often to hospital.:) Although to be honest I feel much more tired now than when I was on chemo, perhaps due to the few kilos I put on around Christmas Holidayds.Kisses to all and have a great day.
In fits Carolyn with the image of you in your crocs on your trike weighed down with chocolate....hilarious. I went to the homeopath yesterday and we got onto diet...should be eating fruit by the bucketful and 10 veg a day as well as supplemets...no mention of chocolate thogh i'm sure wholenut must count. Has anyone ever proved that chocoalte is bad for your immune system??? seriously though, if you mean it, go ahead and get one. Ive even thought of an electric bike but if the trikes are that much god knows what an electric one would be!!! think i'll have a freddo bar while i think about it!!! x
Hello Carolyn, if you are seriously thinking cycling might help you, but don't want the expense of buying something in case you can't do it, why don't you hire something from the place down near the Quay (Saddles & Paddles?) for an hour? Or am I just being gullible again? Are you having me on? If not, good for you! You're a braver man than I am, Gunga Din!
And your little dog Toto too!! Carolyn years ago our neighbor got a DUI and drivers license is taken for a year. Her husband was so pi$$ed off he would not drive her anywhere or take over her chores like grocery shopping. She bought one if those bicycles with a motor. She rode it with her basket to the grocery store. They had a mailbox at the post office instead of home delivery. She would ride it there too. Well, one day I saw her and she was hunched over and pedaling (not using motor) hair flying, she looked like the witch from Wizard of Oz. A couple days later my other neighbor called me and told me she saw her and h w she looked like that witch. We were giggling over it for days bc w e both thought the same thing. My husband told us we were both mean. He said at least she is trying to handle her mistake. Well, the next day he came in the house laughing with tears. He said he just saw the neighbor and coukdn't help himself, that we were right she looked like the witch!!!
My daughter says it's sacrilegious to drive past Dairy Queen (soft ice cream) without stopping!!
Croc haters. Crocs are wonderful on your feet, if you have sore feet from capecitabine!
Hi Sue...yes, apparently this can happen, according to this previous thread, I'll bump the thread up for you as there was some discussion around precisely the symptoms you are describing might find it useful xx
Hi lovely Carolyn,
sorry about that...im onto those little chocs in a see thru box, wrapped in gold paper now.....they were all in my stocking...
caffiene in tea, coffee, chokky, anything...apparently can irtitate the bladder...im only aware of it becouse of my habit of collecting urine infections! This chemo is making me more prone...when n cape it was cellulitis and a dvt, now its wee infections!
its a hard life isnt it? Oh, and apparently fizzy and decaf drinks all do the same, but if you arent collecting wee infections...prob you wont find it a problem!
Hi Carolyn, what makes you think I was referring obliquely to you , haha.
now, its official...Carolyn always carefully reads up on posts before inputtingxx
actually I love kitkats, but was telling Barton that I cant have too much chokky as caffiene irritates my bladder!
so im stuck with a bounty or. Turkish delight, but we whouldnt be feeiding our bc with sugar, should we??
in the chemo suite there are always little bowls of sweeties....and I sometimes succumb, but usually I manage to avoid them. I also get a free sandwich there now and tea and biscuits...feel so well. cossetted, comfy lie back chairs, could be a spa cafe, if it wasnt for the plug ins?
Hi Gang! Welcome Chris! Chris some doctors try to make an educated guess on time others will not commit themselves to a guess. Mine told me it's not an immediate death sentence but he thought I had two years. It's 11 years now!
Carolyn my bones crack and creak worse than my peeps at the senior center where I work. I wish you could see them exercise! I could never keep up! I walk slower than most of them. Btw Friday was a great day at work. It was PJ day. I wore my PJ's with a cardigan sweater for a robe and comfy slippers. Hubby went away for the weekend so I came home and stayed in them. I had a pair of fuchsia Mary Jane crocs. Seriously, they were so light and comfy! I wasn't allowed to wear sandals when I drove school bus. My feet needed to breathe. I would where them to the creek with my dog too. Could walk in and out of the water. My feet swell in the summer and they worked well with that too. They make flip flop types too. I was thinking of trying a pair.
Waiting to hear from Pfizer for delivery of my ibrance. I was supposed to start my next cycle tomorrow. I have 3 extra pills, I could start with them if Pfizer can guarantee shipment by Thursday.
Hubby won't be home from his weekend excursion til later today, so I'm off to see what trouble I can get into. FF
I'm 70 too. They say 70 is the new 50 but i struggle to believe that now. I am on exemestane and denosumab and stable so far. My onc told me that the exemestane would only work for about 18 months but having read here that doctors' predictions are notoriously unreliable I remain optimistic till told otherwise. When it does stop working I have not decided what i shall do. Your wife is so fortunate to have such good support from you. B xx
Hi Chris, welcome to the forum, sorry you have had to join us (on behalf of your wife) we are a friendly bunch and are always on hand to offer help /advice and support......oh and we are a bit of a crazy crowd from time to time, especially the lovely Carolyn (I know you won't mind me saying that Carolyn ) 😁
I am the same treatment plan as your wife, and also be treated at The Christie hospital, different oncologist though as mine is female, she also doesn't say much, I think as long as we are stable they are quite happy with that. I asked her once about "healing mets" and "NED" (no evidence of disease) she said they don't like to use those terms at the Christie and are happy with stable results.
Morning Carolyn, no I have to hold my hand up and say I've never had a pair of crocs! I'm still rebelling and wearing heels, only at the weekend though (not really high ones )
Well a wet and miserable day here in Manchester today so lazy day eating chocolate and watching the TV for me!
Hugs J xxxx