I also have intense pain in back and chest. I find sitting torture!! I recently had the same scans as you and I was told at the moment everything is very stable!! If this is true why all the dreadful pain??? I just feel no one understands and my Onco looks at me as though it's all in my head. I'm so reluctant to go on morphine as it makes me feel so sick and weird. I just have 10 mgs of amytriptyline when I go to bed and then paracetemol in the day. Have you found any meds that actually work? I am trying to work but feel I will have to go off sick again soon. What a dreadful thing this is!!! Sorry to sound so gloomy. I am actually a very happy positive person most of the time!!
So sorry to hear about Moijan. We’ve ‘spoken’ a lot since March when we both started a course of chemo at the same time. Can’t believe she’s gone, as others have said I did notice that she was very quiet. RIP.
feel so choked up to hear about Moijan, had missed her recently. She was a lovely friend and pm friend. i do hope and pray we can find a cure for this dreadful life robbing disease.
hugs to all of you dear people.
I am another that is so saddened to hear of Moijan's passing. We shared the same hospital and she always gave good advice and was a friend to so many. Fly high lovely lady. Hugs to her family and friends xx
Firstly hello to all my friends on here,
I've been away for a while as a series of neverending appts.
I'm genuinely shocked and really saddened to hear of Moijan's passing....may i extend my sympathies and condolences to her husband, family & friends....xxx
I'm in a bit of a bother...I've had intense pains over 4 1/2 months so my oncologist ordered a CT chest, abdo., pelvis...NAD....so he spoke to me very verrry slowly as if i'm an idiot telling me i'm cancer-free 110%!! I feel so very ill & now I'm under a pain specialist....this is a tougher journey; than I'd imagined.
Owing to much slower healing after my tooth extraction, my oral biopsy will now be in early Nov.
Many thx for all your kind messages. I'm genuinely touched that u remembered me....
love & hugggs to all....
Ames........welcome to the bones thread, if you know what I mean! Not anyone’s preferred destination. But keep coming.........you will find support and advice here. I have had bone mets for 4 years now and they are still stable. You are E+ve which is lucky. Also you can have the new palbociclib......also good. I have been on letrozole for 4 years. I now have a liver spot which is being investigated. If a secondary I will have ablation which should zap it! There are treatments out there, so don’t panic! You may have to be patient for now to let the letrozole work. There will be scans to monitor progress. But do return here. There are some very experienced ladies here who will share what they know and their own story.
Thank you for telling us about moijan, Helen. She will be missed on these forums. An absolute regular. Always full of support and advice. Fly high, moijan. I’m sure we’ll meet eventually!
Carolyn, I have followed this thread and remember your wonderful help and advice. Although we never met I feel my life has been blessed knowing that there are people like yoursef who continually care about others. Thank you. Cyber hugs to you and your family. xxx
What sad news about Moijan, Although we never got to meet we had tried to sort out a time when we could have but didn’t live very close to each other. We often sent PMs to each other so I was worried when I hadn’t had a reply to my last one. May she rest in peace and my thoughts are with her husband and family and friends, including you, Helen, Thank you for letting us know.
So very sad to read this news, have missed her around the forum lately and was praying it was a reason other than this , my condolences to her family and friends. Rest in peace dear lady ❤️
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)
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
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
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
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.
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
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.
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!
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.