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Bone mets - please join in

Community Champion

Re: Bone mets - please join in

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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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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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Re: Bone mets - please join in

Hi Kate21 & bon.....

 

How are u? Take care.....

 

silver...x

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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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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Re: Bone mets - please join in

Hi bon,

 

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

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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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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Re: Bone mets - please join in

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 

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Re: Bone mets - please join in

Can u please elaborate...who are the hospital outreach team??

Community Champion

Re: Bone mets - please join in

Thank you Silver,,,

 

 

i too am in pain,  tummy and arms etc....I found the hospice outreach team helpful..,think they re better t pain control, so will be askiing them

 

 MOijan

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Re: Bone mets - please join in

@ moijan,

 

As i promised....over a week of 900mgs Gabapentin a day on top of Butec, Morphine sulphate....absolutely no pain relief.....I'm a bit concerned...seeing G.P. 2moro but she's an efficient pain-belittler so i'm not holding my breath.....I hate 'Max'!!!

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Re: Bone mets - please join in

Hi Moijan, how are you now? That;s really interesting from your radiologist, the ones doing my scans are lovely but secretive! Hope you're managing.

hugs Ramadexx

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Re: Bone mets - please join in

Yes very good luck with the mri....I now have them thre monthly...and the head radiologist once told me they can tell if the cancer is active....as if it is they see water around the cell in the mri....fingers crossedxx

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Re: Bone mets - please join in

Thanks Anne, yeh finger, toes and everything is crossed here 😁
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Re: Bone mets - please join in

Hi Silver, hope they’ve advised you what to do? Take care, Kxx