Bone mets - please join in (Part 1)

Hi ladybird 2, thank you for letting us know how your wife is, nice to hear she is comfortable. Please let her know we are thinking of her.
Take care hugs J xx

Hello Chris, very sorry to read about Ladybird but thank you for letting us know. I hope it also brings you some comfort to know she is being so well cared for. Thinking about you both, Kate x

Morning lovely ladies and thanks for your continued support.
Iā€™m amazed how my cat Toby has hardly left my side since Ladybird left for the hospice. He really is missing her. Sadly sheā€™s too poorly to take him to see her now but the hospice has no problem with pets going.
Good luck everyone
Chris xx

Hello everyone hope everyone is well and thoughts are with Ladybird. I have been quiet for awhile as been backwards and forwards with scans and medication changes but basically an now on letrozole and ibrance and looks as though not working and have another set of scans on pelvis and spine and ct next week. So feeling pretty down and taking painkillers to keep pain at bay whilst I carry on working. Being normal is my sanity. My Onc says next step is tablet chemo cape or 18 weeks of chemo I day a week . Not sure what chemo all I know is I want to go on hols in June so need my hair. Has anyone else had 18 weeks of chemo. I am not scared if it does the job but feels like I heading into life of chemo . Wendy

Thanks Benten and hope your tablets continue to work for a very long time. I never had primary so am in at the deep end so to speak and hormone therapy does not appear to be the answer. I will definetly use a cap Wendy x

Hi finty,

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Not sure how this thread worksā€¦so many of you seem to have been ā€˜hereā€™ a very long time.

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@ fintyā€¦have you had bone mets for 9 years? How amazing! This gives me hope.

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Can they only find bone mets with a bone scan. My mets are in my pelvisā€¦both sides. Every 6 months Iā€™ve a CT scan but not a bone scan. Iā€™ve pain 4/5 out of 10 in my left armā€¦Iā€™m never sure if its OK to ask, as they look at my CT & thats itā€¦maybe, Iā€™m not making senseā€¦

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thanks all,

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silverlining

Hello ladies

Apologises for my long absence but I needed to step away for a couple of reasons. Firstly a month ago I lost my daily e mail buddy after 2 years ā€¦always thought she would outlive me but things happened quickly at the end.
I also had to wait 6 weeks for my scan results and yesterday I got the kick in the teeth I didnā€™t expect ā€¦I now have liver , lungs and adrenal glands mets. .it seems the little blighters got fed up of eating my bones and wanted a warm soft place to party in.

Iā€™m starting exmestance and everomus next week and if after 3 months it doesnā€™t do much will go on vinerobine chemo pills ā€¦

There have been plenty of tears but today Iā€™m ready to give the little blighters a great big kick where it hurts ! Letrozole after two and half years has let me down ā€¦never quite ready for progression.

Anyway Iā€™m back ā€¦to get on your nerves again.

Hugs xxxā€‹:relaxed::relaxed::relaxed:

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Oh Carolyn what an awful shock for you I really donā€™t know what to say ? I know you will pick yourself up though and deal with it, you are such a tonic across the forum and so donā€™t deserve this but as we all know thereā€™s not a damn thing we can do other than deal with it! You know you are never far from a shoulder to lean on as and when you need one Xx JoĀ 

Hi Carolyn

Its lovely to have the chocolate teapot lady back ?? but obviously not for the reason you have said. As you have supported us and welcomed all the newbies so well in the past we will be supporting you. Itā€™s a pain in the a*** when we learn of progression so give yourself and your family time to adjust and to get to grips with new treatment. Take each moment as it comes and once you get over the shock make sure you get out and enjoy yourself - especially with the new babies and your other grandchildren.

Take care

Nicky xx

ps good to see you posting as well FF, have missed you as well, Ā how are you doing?

Thank you all for your lovely comments and support ā€¦think we all get in a comfort zone when we are stable for a while and then when it changes itā€™s such a shock.
Hugs xxx

Rosie
Thatā€™s very inspiring about your news with the e and e regime. ā€¦oncologist said that the average success rate was about 8 months but of course everyone is different. ā€¦he also said that he was surprised just letrozole had worked for so long on my extensive bone mets !! He was only expected about a year but it did two and half years for me.
Hugs xx

Carolyn, itā€™s lovely to hear from you again and I am so sorry that your results were concerning, as you say we sit in a comfort zone whilst a treatment is working and feel panicked when there is change.

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I just wanted to say that we are here for you, Iā€™ve even come back on the forum after weeks away! You have always been so supportive and uplifting to others so sit back and take strength from us for a while.

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You have a raft of treatments still available to you and the chances are that they will work well, you are still a treatment ā€œnewbieā€ really so take heart.I am still squeezing the last few weeks out of my trial, nearly 2 years on and Cape lasted me 2 1/2 years as well.

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FF, I know what you mean about feeling anxious the longer we work through these treatments, itā€™s emotionally exhausting isnā€™t it but glad that you are posting. Take care everyone, some warm weather would helpā€¦a lotā€¦

Hello rosie

I was supposed to see my oncologist 2 weeks ago for results but I had to cancel as I had a tummy bug and then wait 2 more weeks to see him as he was on holiday .

I do feel a bit miffed that this has all happened since November when I had a scan last. I would have thought on seeing these new things on scan I would have been seen earlier and then new treatment could have started quicker.

Hello still here
How nice to hear from you ā€¦Iā€™m so glad your trial drugs are doing so well for you but surely if the trial stops ā€¦they will let u keep taking the same drugs as you have been stable on them.
Hugs xx

Well ladies

Iā€™m looking for a school to teach hubby how to change a duvet cover !! For the first time in 45 years I had to ask for his help to put clean bedding and a duvet cover on ā€¦well he turned into a 2 year old ā€¦not a clue ā€¦even how to match the poppers up. Didnā€™t understand the logic of a square duvet in a square duvet cover even
Oh just thought ā€¦ Iā€™ll get a cleaner !!

Hugs xxxx

Carolyn nice to have you back and wishing you well with your new treatment. I am 1yr in now and 2 treatments on hormone tablets not worked well so Onc said Chemo in some shape or form next option. Dreading Tues which is my scan results meeting but it is people like you and the other lovely ladies in here keep me going . Love to all Wendy

Hello Wendy

Iā€™m sorry you have worked your way through the hormones so quickly ā€¦when I look back I have had it easy for over 2 years ā€¦a little letrozole pill a day and a little jab with bone juice every 6 weeks so now I have to put my big girl pants on ā€¦grow up and face the next stage ā€¦
Oncologist says there are several chemos in pill form now so u should be ok with hair loss etc.

hi ladies, i thought i might tell you all what i have learned so far with this tenacious disease.

One, by putting money aside each week for a really good cleaning lady, i feel so much better seeing a lovely house and donā€™t worry that,back on chemo again, i canā€™t pic things up so easily. Also, as we all know and has been discussed, men donā€™t see mess and dirt in the same way we do, so now i feel totally relaxed when he lets things spill down the kitchen cupboard fronts and donā€™t have to say anything.

Two, now and then ask for an mri scan. My ct scans go along merrily saying no change then an mri done two weeks later shows up disease not seen by ct.

Three, if your hospital donā€™t have breasr care nurses, go straight to your local hospice, show them how upset you are by total lack of support and they will probably be very kind and helpful.

love to all

from a bald again

ramade xxxx

Iā€™ve just acquired a cleaning lady for the first time in my life, hubby has been wonderful but we have also been coping with my elderly parents and their house and it all got too much. One day last week the cleaner came for the first time, I was out, and when I got home the whole house was sparkling especially the kitchen floor. Iā€™m the last person to care about housework but it was wonderful!

Wendy I donā€™t know about other chemos in pill form but Iā€™m on capecitabine and itā€™s very doable, not at all like IV chemo. Definitely no hair loss, I was worried because mine is still only in the process of growing back after fec t, but the cape hasnā€™t affected it at all.