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Bone mets - please join in

Community Manager

Re: Bone mets - please join in

Hi everyone,

Just a note from Anna and I to say we're really sorry to hear about Moijan and we're thinking of everyone here who knew her, as well as her friends and family outside of the Forum.

Take care,

Becca at Breast Cancer Care.
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Re: Bone mets - please join in

Sorry to hear the sad news about mojan thoughts with family and friends RIP xx
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So sad to hear about Moijan, she was a great support to many of us who never met her. Sending love to her family and friends.
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Sorry to hear news about Moijan. Hugs to friends and family. Paula xx

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RIP Moijan, so sorry to hear this.
Thank you Helen for letting us know, please give my love and condolences to her husband and family.
Hugs Janette xxx
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At peace now Moijan. I was lucky to meet you. Love to all your family and to you Helen. xx
JWD
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RIP Moijan.. At peace.. sending love to all the family xxx
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Re: Bone mets - please join in

RIP Moijan

 

It is with great sadness I write to share with you that Moijan died on Wed 26th Sept. 

I spoke to her husband last night and he asked me to pass on the news. She passed peacefully at St Catherine’s Hospice, West Sussex & East Surrey.

 

Moijan became my friend a few years ago after we met through the forum and spent some happy afternoons in my garden and many times FaceTiming late at night. She was a lover of bell ringing and had many friends, but to the forum she built up a whole new collection of friends and was always trying to help all of us with our own difficulties, rarely asking for support herself. As a Community Champion she served us well, absolutely focussed on trying to help and suppport us and I’m sure she will be greatly missed by all.

 

I‘m sure you will join me in passing our sympathies to Paul, her family and friends.

 

...We often joked about who would go first, well, you beat me to it, Moijan, but I look forward to seeing you again sometime for some tea and sunshine xxx

 

(Also posted on the End of Life Forum)

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Re: Bone mets - please join in

All the best and will think good thoughts and prayers.
Community Champion

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Hi everyone! 

 

Silver, Good luck with the biopsies. This cancer doesn't let any area alone!! FF

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Silver, good luck with the biopsy. Hope everyone is ok, I haven't been checking in very often but I still think about you guys. Had a long weekend in the campervan in Cambridgeshire, catching up with old friends and enjoying the fab sunshine. Chemo tomorrow. Oh well, at least my bloods made the grade this time!
JWD
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Re: Bone mets - please join in

Good luck with the biopsy silver.xxx
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Good luck with your biopsy Silver. Will think about you. Don't worry about the thread, this forum changes its character all the time. Quite different from six months or a year ago. xx
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Hope biopsy goes well. I wouldn’t read anything into when people post. You never know what’s going on in people’s lives. They could be away having a holiday! Good luck with everything x
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Sorry to hear this Silver! It has been quiet on the thread, can only speak for myself, but I don’t tend to look every day, think it was just coincidence. When is your biopsy? Kxx

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Mine was the last post b4 the big quiet so I thought I'd killed off the thread.....maybe i'm just too sensitive....They found some lesioins in my mouth so its biopsy time ...again....xx

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Bon, that's good news, as it goes. If the current drugs aren't too tough, then it's good to get the maximum time out of them. But I can't help feeling how our perception of what counts as "good" news changes as time goes on 😉
Hope everyone is doing ok.xx
JWD
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That's good to hear bon.take care and enjoy your weekend. Xxx
Community Champion

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Bon, I'm like you. Nervous if too far apart on those scans. Nice that onc feels progression was small enough to continue your treatment. It stretches the drugs out. Good luck. FF

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Encouraging news. Very pleased x
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That’s great. I tend to agree with your oncologist. I’m on a clinical trial so as part of its protocol I am required to have a CT scan every 3 months and I must say I’m stressed and anxious from the scan til I get the results.
So far by God’s Grace it has been clear. But it’s scary
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That’s good to hear Bon, must be a relief for you. Take care x

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Thank you for all your kind messages. Progression is small enough to stay on same drug for the time being but I am going to get some scans. Onc said he didn't like doing scans without good reason, they only caused anxiety but I feel not having them over a prolonged period causes anxiety too.

xxx

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Sending you best wishes and luck for tomorrow bon xx
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All the best and hope there is a clear plan x
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Good luck Bon
Xx
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Good luck Bon, thinking of you.xx
Community Champion

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Good luck Bon! FF

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Wishing you all the best today Bon, hope it’s only minor progression that your GP has told you about and any treatment change is kind to you x

Community Champion

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Good luck Bon, fingers crossed that your results don’t show too much progression and that any change in treatment is not too harsh. I agree with being able to enjoy this summer, for me it’s been a welcome break from chemo or IV treatment (in one form or the other for the past 4 years, gulp) as I’m on Faslodex at the moment which has also meant fewer and quicker hospital visits, hooray.

Hi to all other bone mets ladies, hope all is going well with your treatments and good luck for any expecting scan results.

Nicky x

JWD
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Good luck bon.. sending love and thinking of you. Xxxx
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Hey ho, scan results tomorrow. My GP has already told me I have progression. Previous bone scan was 17 months ago so plenty of scope. Last thorax and abdomen CT 3 years ago. Well at least I was able to enjoy the long hot summer undisturbed.
Hugs to all
Bin xx
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Yes I have to admit I too have just used my health card and took insurance excluding cover for my secondaries for trips to Europe as it was getting too costly at £200! Don't know how much longer that will continue though with leaving the eu😕. I purchased via MIA but the policy was good to go for thailand xx
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Thanks for the insurance info Sarah. I used MIA many years ago but they stopped insuring for USA and long haul (for secondary BC ladies) so it’s interesting that they are now offering it again, even at such a high premium. However, like you I’d rather have peace of mind and would never risk going to USA without it, especially with their high medical costs if you weren’t covered. I have travelled many times to Europe with only my EHIC card plus a travel insurance policy that excludes my pre existing condition although now use Eurotunnel which is very reasonable so have full cover. Like you I like to have some sunshine between the showers/clouds - very well put!

Nicky xx

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Yes my coping mechanism is right let's get busy and book a holiday - got to have rays of sunshine in between the clouds😊. Good luck for your scan results and enjoy your hol distraction. I have really struggled with insurance due to having a pleural drain - one of the only companies that would insure me were MIA it cost £500 so not cheap but gave peace of mind I also used them to travel to USA xx
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You’re right FF, it has been very quiet on here, good to see you’ve woken us all up though 😊 I think you must have lol of our rain as the UK seems to have been very dry this whole summer, even areas which normally are known to be wet. Send it over, I’m sure you will want to get rid of it.

Bon, hope the anti sickness meds help and don’t add to our ever increasing chemo brain (I blame all of my many treatments for this’ll!) Sorry to bear though of the slight progression but it’s good that a hormone combo has kept you stable for so long. Take a deep breath and try to not think of what they suggest next (that almost sounded like the ‘take a deep breath, and hold, hold, hold, breath out’ instruction for our bloomin’ scans!) Enjoy you last 2 Go Campervanning treat and I hope the weather picks up for you, it will be a welcome distraction whatever the weather.

Sarah, wow, well done you leaving your dream trip to Thailand. It does help when you are faced with a new treatment to come into it refreshed and having been away from the whole hospital/oncology circus. Can I just ask who you used for travel insurance as it is so difficult to get companies to insure us mets ladiesfor far flung places.

Hope everyone else is doing OK and coping well with treatments, SEs and the general grind of appointments. I’m in between scan and results time but have crammed in a holiday in between so scanxiety doesn’t kick in too badly. Good luck anyone else with scans or results due.

Nicky x

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Thanks Sarah and Ff. Forecast for today looked dreadful but has improved. Found out yesterday that i have progression but I did well to get 3 years out of exemestane. I will put it all on one side and deal with it when i get home.

love Bon x

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Sarahlew, I've been on E & E for 17 months. I'm on the full dose and its going OK. Fantastic that you got to fulfill your dream. We deserve some treats with what we are going through.

 

Bon, Enjoy your camping. I wish we had a camper van. 

 

FF

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Hi all
Have had an anxious and frustrating few weeks waiting to hear if I was eligible for trial - I wasn't so another wait to start e/e and after lots of emails phone calls starting it Wednesday so hoping it has some effect as pleural fluid has increased a lot lately. On a happy note went to thailand a couple of weeks ago which was amazing and feel so happy and fortunate that I was able to fulfill that dream😊with my family.
Enjoy your trip bon and hope the rain stops soon ff!!! . Hope everyone else is OK and managing with their treatments xx
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No results yet. Am on new anti nausea drug. Not doing a lot for my brain! Going camping to Cornwall on Wednesday. Husband decided to sell our campervan and had found a buyer but I said I wanted one last trip this year so I have got to go! Think I'll turn off my phone. Might be no signal anyway. There are lots of places where I live (S Devon) with none.
Love to all Bon xx
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Quiet on here! Hope everyone is off having fun. Only way to have fun here is to be a duck and get your waddle on! Rain, rain, and more rain! This is the most rain I've ever seen in a summer. Good thing I like my colorful polka dot umbrella. 

 

Hugs! Take care! FF

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Hi Kate21 & bon.....

 

How are u? Take care.....

 

silver...x

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I don't know that drug. Mine are Denosumab injections & Letrozole. There appear to be such a variety of onco. drugs. Bestest luck with your bone scan. How long do u have to wait for results. I'm in a whole lotta pain.....awaiting pain specialist appt....xx

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I have been on exemestane for nearly 3 years. Had primary in 2009. Bone scan on Thursday. Last one was 16 months ago. Have been feeling a bit unwell this month. Fingers crossed. x
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Hi bon,

 

How long have u notched up? And where are u in your t'ment regime?? xx

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Hi bon,

 

As a relative newbie, I'm learning loads on this forum. Can u elaborate about the consultant to GP ball passing...please..xx

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Dear Silver

Buck passing all round then. Sorry I was telling you stuff you already knew. I don't have any personal experience of our hospice yet but I am surprised at your hospice's response to you.

 

This ball game berween consultants and GPs is not uncommon.

 

Bon x

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Ok silver...that’s pretty strange as my hospice outreach team have said they would be able to help if need be..the onc prescribed something, but I need to try it.the team came out to my home to assess me and offered to look at my drugs...they have doctors employed by the hospice, who. I can chat privately / independently if I’m concerned about an aspect of treatment and they offer Reikhi and other therapies at the hospice if you’d like them.
The team visit during a 24 hour service.
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dear bon,

 

Many thx for your ever so prompt reply. I undestand now. My oncologist just keeps telling me to contact the hospice for pain relief. So what has just happened to me is unexplainable!!

 

The Director of my hospice wrote me an email saying she is not an expert in chronic pain and discharged me to my G.P.

 

I'm gobsmacked & I'm never ever one to complain...it appears I'm not terminal enough. I do have a multifactorial presentation...high b.p., diabetes. inflammatory arthritis and Max of course.....xx

 

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Re: Bone mets - please join in

Hi Silver

You probably have a hospice local to you. Most people think of hospices as places where you go to die but hospices do far more work in their communities supporting people to live as long and as well as possible. My local hospice requires a referral from a GP or consultant. They are good at things like pain relief. Maybe you can ask your GP about your local hospice.

I'm sorry your pain is bad and hopeyou can find some help

Hugs Bon xx