Great to hear that Funnyface has proved the oncologists wrong! I got the usual 2/3 years, even though I asked not to be told, and now can't get that figure out of my head! Made me sooo mad! I've heard good things about Ibrance with fulvestrant. Would be nice to move to the US for treatment! x
Hi Mrs2b I've had aches in legs and ribs off docetaxcol but not really painful but I remember the chemo nurse saying I would feel like I'd been hit by a bus that was before my first one ! Made me feel great lol Julie X X
i don't have any experience of your chemo I am on Fec diagnosed with primary and secondaries in Feb this year. Is there any chance you may have slept funny ? I know it's hard now to not assume every ache and pain is something more sinister ? Have you something you can take to help you relax and ease the pain. Hopefully someone will be along soon that can give you good advice.
Hi welcome MrsR2B, sorry you have had to join us though, pleeaaassse don't put an expiry date on your disease it's poppy cock when they give you information like this!!!! Makes me sooo mad! As you have already seen with funnyface we are a strong bunch us met girls and are here for the duration. Everyone is individual and no one cancer is the same so how can they put a time scale on it, I have a friend with secondary on her liver and they gave her 6 months.......that was 12 years ago!
Go and enjoy your life and just be sensible with diet and lifestyle.
Hugs to all Janette xxxxxxx
Thank you so much everyone. I feel like tonight is the first time I can go to sleep in a long time feeling a little but lighter for sharing. I really appreciate it!
Funny face, your story is just what I hoped to hear when I decided to post, 10 and a half years is fantastic! I suppose they can only give us dates on statistics and we are all individual people with our own reasons that won't let us lay down and be beaten. I hope your treatment is still working well and you don't have to have another change x
Julie, forgive me but it gave me the giggles - you staring at the faces intently when seeing onc etc. My forte is talking - I get so nervous I talk, talk, talk. What a lot we are.
MrsR2B welcome to the thread. It's so hard to,put everything in writing isn't it. Makes it real. You've had a tough time physically and emotionally and often the hospital becomes our safe place. When that eases up we feel lost. It is hard to adjust to but it is also welcoming once you find your feet. Are there any counsellors or free treatments available to you. This might help to bridge the gap mentally and in time help you adjust to your new normal. You'd still be going to the hospital but not for treatment. Then you can scale that back when you are ready. I hope yu find our thread as supportive as I've found it.
karen, good luck tomorrow. Please let us know how you get on. Have my fingers and toes crossed.
sharon - that was a long, long day. Bet you're glad you're home. Feet up now xx
Hello Ladies, I wanted to give a shout out to the newbies first. Don't listen to these oncologist and their expiration dates. My oncologist told me average life expectancy was 2 years. I have been here 10 1/2!! I have mets to both lungs, lymph nodes in chest and a tumor pressing on an artery to my heart. I'm hoping you ladies are just as lucky! I have done Lupron injections (didn't work), then Abraxane/avastin combo 6 monthsr but stopped bc it was harsh can use it again bc it was still working), vinorelbine (navelbine took for 5 years), xeloda(capecitabine..took for 2 years), gemcitibine (8 months had a toxic reaction to it), currently taking letrozole and ibrance ( 7 months so far ...CT today..results Thursday...I live in the US...ibrance isn't available in the UK yet). I only ever had one chemo break. That was for 6 months after the abraxane/avastin combo. All my other chemos were given back to back and stopped when something grew. Hoping my treatment is still working don't want another change. I hope this gives you some encouragement.
To all of you ladies having stomach issues, I hope you can get sorted out a little better. I've been having a few too. My gut acts like I have IBS. I have never told my onc,but going to on Thursday. I feel like I can't go out much unless the loo is nearby. I can't run of walk fast! If I eat then I have to go.
Hugs to all! FF
I've been having zometa every 4 weeks since October and can honestly say I haven't had any real side effects apart from feeling a but flyey after the first one (could of been a coincidence) all others having been fine. I wet from not being able to lift my left shoulder enough to even brush my hair to having really good movement and my pain in my shoulder and neck is always a lot better within a few days after my infusion. I had 2 wisdom teeth removed prior to starting the zometa as supposedly can't have much dental work once it starts. The only part I have struggled with is the calcium tablets they have given me to take after, they are vile, I really struggle to take them but needs must I guess. The zometa has been great for me I hope it is for you xx
Hi I'm sure he will have a plan for you. I think they do it everyday and don't realise are minds race . I never ask questions can't get out quick enough but I try and read their minds and stare at their faces to see if I can tell anything same when I go for a scan I make things up in my head and convince myself I'm right it's crazy ❤❤
Sorry I havent been on for a while. Things have been rather manic in my world lately. Mind you I have been glad to be busy, as it takes my mind off of waiting for results.....But tomorrow is the dreaded day...Tomorrow I get my scan results,my first one since having radiotherapy and the Star Ablation treatment on my spine....to say I am nervous is an understatement.....
My logical brain tells me that no matter what they say tomorrow, I will stay strong and deal with it but that doesnt stop the worrying. I know I wont get much sleep tonight. So i thought I would find the time to chat to you lovely ladies. You are always so lovely and positive, which helps alot.
Hope you are all doing well
Julie he was very vague with any emails on hormones, just that a jab a month and daily tablets. Hopefully will know more on the 13th when I see the onc. I've been having zometa for my bones and pain does seem to have calmed a bit so maybe I can take that as a positive. Chemo has truly been like a comfort blanket, within a few weeks of diognosis I was having treatment so the idea of things slowing down is terrifying. It's so nice to talk to there in the same situation, people try to understand how you feel but I don't think it's possible to unless you are living it. Thank you all ladies x
Hi Sarah, it's the scariest thing not knowing how long you will have with these small people who are just the most amazing thing ever, my body may be failing me in many ways but I will always appreciate the fact it made my little lad. I try and appreciate every day with him but I have so much anger when I know I will be taken away from him. I am going to make some big changes in my diet and lifestyle choices, have always lived quite healthily but have put on a tonne of weight with this chemo, it seems as soon as I feel ok again I can't stop eating and all the wrong foods. My son is just starting to wean so as I will be cooking healthy meals for him it's the ideal time to get back on track with my own diet.
I never asked my doctor how long he may think I have, probably because I was too scared of the answer. I'm not sure whether I should find out?
Good luck with your results on Thursday, I hope you get great news and whichever new drug they put you on isn't too horrible. Thank you for your reply x
Hi Mrs2b I have lung and liver Mets my halfway said they had shrank I get my next scan on the 18th then I go on herceptain and perjeta I know what you mean about stopping the chemo even tho it's awful it's there as comfort but the hormones can keep the Mets at bay. Some people reach ned (no evidence of disease) I've read a lot on the American inspire sight they seem to know a lot about it. There's new treatments coming out all the time that's what the nurses keep telling me. If your Mets progress they put you back on something straight away as they keep saying its treated as a chronic illness now but I know how you feel I'm nervous about my scan coming up too. Did they say what hormone treatment you would get ? Your bones might be doing ok if they arnt scanning them for a while I haven't had a bone scan so I don't know how it works . ❤❤❤ Julie X
Hi Sharon definitely go it was fab just what I needed so funny. It's a nightmare when it's a long day such a relief to get out. Glad your bloods were ok if they have dropped that's a good sign I'm sure I read they can show high even if Mets have shrank because there still in the blood. Hope you get some sleep tonight. I think I'm over the worst now I think it's just the normal awful taste . YOUVE DONE IT LAST ONE 🌟🌟🌟🌟🌟🍸🍸🍸😁😁❤❤ Julie X X
I did have a scan after my first 3 cycles and there was good shrinkage of liver but they say they won't scan bones again for a while so not sure what's happening with them. I think the results of the first scan have made the idea of stopping the chemo scarier as it was clearly doing some good. I feel like I don't know what questions I should be asking and although my Dr's have all been fantastic i do feel like they don't always give me a lot of information. Thank you for the reply, it feels nice actually talking about this with someone who isn't family as I worry that it's upsetting for them to talk about it with me x
Hi Mrs2b sorry what has happened to you I bet your a fantastic mammy . I know how you feel about the docetaxcol I've had 7 and I feel terrible it's an awful chemo. I've been terrified but there's a lot of lovely ladies on here who know loads off stuff and have put my mind at rest . I think there's lots of treatments you can take some women haven't even had chemo and they are doing ok. Did you have a halfway scan had your Mets stayed stable then ? I'm sort of new to this as my primary was the same time as secondary. There will be someone on soon who has more knowledge. Take care Julie ❤❤❤
Hi Christina, welcome to the thread. We are a lovely bunch, a bit mad at times but so supportive. Nothing is off limits and believe me one of us will have experienced it so don't worry about thinking it's only you. Looking forward to chatting
Julie - so glad you went out to the cinema - it lifts the spirits doesn't it to do something and a change of scenery. Hope tummy still behaving itself!
julie d - sorry to hear you've been unwell - and no chocolate either - that is awful. Hope you are beginning to feel a bit better now. Please look after yourself
sharon, hope hospital was ok and you're home safe and sound.
Big wave to all the other ladies.
Lots of hugs,
Welcome to the gang, we all wish none of us was here but as we are we pull together and support each other.
I really wish these Oncs would stop giving people date stamps! Ok, we may be incurable now but nobody knows how we will react to treatments or deal with the disease and nobody can give us an expire by date. I'm so glad to see you positive attitude. Is there a different Onc you can see who is a bit morepoitive or at least not negative?!
Have they sorted out a treatment plan for you yet? Despite the fact we all moan about treatment it is good to know you are on somethn that is hopefully holding the uggers at bay.
There is actually a Live Chat session on a Tuesday evening (tonight) you have to register for it but can use your same name, it run from 8.30-9.30, so if you fancy joining few of us in real time we'd love to see you.
Don't forget live chat anybody else who is interested it can be not only helpful but fun.
I've had a lousy tummy the last couple of days, lot of visits to the loo and also being sick. Not fair, I haven't even eaten any Easter eggs!! Going to have a boiled egg and soldiers tonight, isn't it funny how we revert to 'nursery' food when under the weather (well I do).
Hope the weather has calmed down for everyone. Lots of love to ll my boney friends xx
Hi Christina everyone's fantastic on here 😁 well I felt a bit better today went to pics to see the new Eddie the eagle film it's fab really funny defo worth going to see. I've came back and the stomach is having a few twinges so I'm not going to move . X X
Hi Christina, welcome to the boney thread, you will get lots of support her from us. You sound like your ready for a battle......good for you girl!!!!
Hugs Janette xxxx
Thank you for the warm welcome! I've got a big fight to pick with C - we'll see if I'm a loser - NOT!!
hugs to you xx
Hi Cristina and welcome. You will find the ladies will offer sound advice and good practical knowledge. I love your attitude. Keep going brave lady. Look forward to getting to know you. Love to all. Particular hugs to the chemo ladies. Hope it treasts you less harshly. Baking cakes. Eat your heart out Mary Berry. Love to all. Sue xxxxx
Hiya Christine and welcome. I was here posting so I will be the first to send you some hugs and say stick with us and you will find a host of help and support from other ladies that have been there and got the tee shirt.
Also join us in the cyber cafe and get involved in the nonsense if you have a bad day and want to escape the C word.
The community members will be posting soon and they have such knowledge and kindness to help you through this black time.
But hugs xxxxxxxxxxxxxx:
Hiya Sharon and Jultz ...
Bst of luck and Ihope you are both coping. I would be very interested in the new boots shampoo as Im fed up with swallowing hair and if I wear black ...........well it sits all over it.
Jane Plants book was the only one I ever bought back in the days too ..but obviously I didnt follow it and hence the reason Im sat here with mets. Ive just googled her and she is still alive and nearly 70 so she must be doing something right !! These extreme diets might work but what a miserable life eating all the rubbish food that only gives us wind !!!
I hope that you are both popping into the cyber cafe ... its a bit of fun and rubbish but might cheer you both up and get away from the c word.
I'm new to bone mets. A couple of people recommended I join in the chat, so I've popped in to introduce myself.
I am 55 years old, and I have secondary breast cancer in both lungs and large tumour on my heart. Oncologist said I only have months left, but he clearly doesnt know me lol I am sticking around for MUCH longer than that!
How is everyone today? Hope you are all as well as can be expected, gentle hugs (((((( )))))) xx
Thanks Natalie hope you never have to go the chemo route 😁 I've got all the tea Sharon it's drinking the bliddy thing lol good luck today get it overwith you are a star take care ❤❤🌟🌟
Hi julzd, sorry to read your struggling at the moment, sorry I can't really give you any advice as fortunately I haven't been down the chemo route......as yet! Sending you lots of cyber hugs though, just a thought but have you tried ginger biscuits? I know ginger is meant to be good for sickness.
Well it's back to normal now easter is over, lots of fruit and veg on the menu to get rid of the pesky chocolate calories iv accumulated over the weekend!
Hugs to all x
Chocolates I'm ringing for cream today and yes I haven't took the extra sick meds cause I didn't want to be bunged up lol we must all think the same haha X X x
Julie, I was so similar to you - sickness - sore nose - still have that. The nose cream naseseptin (sp) is great and works wonders. I had lots of anti sickness meds and was living off them. At first didn't want to take as thought might bung me up but onc said no - it's the chemo - take regularly - so I did and at least kept that at bay. Yes, had loads of jelly - not ice cream, but ice lollies also - loved the coldness. And bizarrely pot noodles I could stomach - not normally. Was all over the place, dried biscuits mainly and jelly but hey ho - was what I needed and could tolerate. Feel for you xxx
Thanks Carolyn hope your not in to much pain ! All of you have been fantastic thank-you 😁 Sharon good luck with chemo it's your last one your a 🌟🌟🌟