Member
Posts: 9
Registered: ‎02-01-2019

Re: Bone mets - please join in

Yes I wish everyone here a happy new year with good results from whatever scans/ tests and good responses to whatever treatment. May this be a year of success for all.
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Member
Posts: 350
Registered: ‎18-01-2013

Re: Bone mets - please join in

Correction! Been on Denosumab for 6 years not 5!
Member
Posts: 350
Registered: ‎18-01-2013

Re: Bone mets - please join in

Hi Riversidedawn
I have been on Denosumab for 5 years, it was licensed in late 2012 & I was put on it when diagnosed Dec 2012 so GP saying it's a new drug isn't quite true. GPs don't tend to administer it because it costs too much, I was told £150+ per injection back in 2012!! Having said that, my local hospice will give it & I know someone on this forum who self administers at home. My chemo unit & onc are very flexible as to when I get Denosumab-they tend to tie it in with whichever chemo I happen to be on so I have had 4 weekly, 6 weekly , 8 & 12 weekly. All the best with your treatment.
Helen x
Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Lovely good evening,
I wish you all clean scans, good fight, stay strong and positive in the upcoming 2019.
Hugs🎉🎉🎉
Member
Posts: 16
Registered: ‎06-03-2015

Re: Bone mets - please join in

Just joining in for a bit of support. I was admitted onto the oncology ward on Boxing Day with a chest infection; I already had breathlessness which had been exacerbated by the Paclitaxel so not good!
I’m having IV antibiotics and steroids and feeling much better, in fact there is some suggestion from the CT that there has been an underlying infection for a while.
Not sure if I will be allowed home today as there is talk of a chest drain, despite my consultant saying it wasn’t necessary last time I saw her.
Feeling a bit fed up, and trying to convince myself that next Christmas will be better..
Member
Posts: 26
Registered: ‎04-10-2017

Re: Bone mets - please join in

Hi. I am on denosumab. I get my injection every four weeks at hospital when I am picking up my palbociclib. I can be in and out in 20 minutes but sometimes there is a glitch with the prescription or no room available. I have asked if I could have it done at the GP but was told as it was a relatively new drug it was to be administered at the hospital.  I don't always see my onc when I am in. If my bloods are OK I get a phone call the evening before to ask how I am doing. I have the option to see him if I want to but much as he is lovely and very approachable I prefer not. I find it is the best approach for me at the moment. 

Member
Posts: 10
Registered: ‎17-12-2018

Re: Bone mets - please join in

Hi

I have Denosumab every 4 weeks at my dr's surgery. You should ring them and see if there is a nurse trained to give the injection. 

 

Vicky

Member
Posts: 235
Registered: ‎14-03-2018

Re: Bone mets - please join in

I am on Ibrance and Zometa and Anastrosole. I have Zometa every four weeks and also have to see the oncologist every four weeks to get the Ibrance. I’m one a low dose and one week on one week off as my white cell counts are low. Often the appointments don’t work out to be on the same day so I have to go consequtive weeks. It is time consuming but the hospital is near my work so it’s okay. I haven’t heard of anyone having it at home but this is the right place to ask. Could you try and have both on the same day? I sometimes can which is good. Best wishes Anne
Community Champion
Posts: 1,246
Registered: ‎24-11-2014

Re: Bone mets - please join in

Hi is anyone on denosumab? I have to see onc every four weeks to pick up ibrance (palbociclib) and also return every 6 weeks for denosumab. Never get out in anything under 3 hours even when it's just a quick injection.
My GP won't fund ibrance so that's fair enough but I wondered if GPs will do denosumab or if anyone is trusted to do it at home? Really don't want fortnightly hospital trips.
Community Champion
Posts: 4,307
Registered: ‎01-05-2012

Re: Bone mets - please join in

Merry Christmas! Relax and enjoy the festivities with your family and friends! FF

Community Champion
Posts: 4,532
Registered: ‎01-05-2012

Re: Bone mets - please join in

A Happy Christmas from me as well 🎄🎅🏻Wishing you a lovely time with your family and friends.

Nicky xx

Member
Posts: 235
Registered: ‎14-03-2018

Re: Bone mets - please join in

Happy Christmas to everyone and thank you for all the support and encouragement. Here’s to strength and peace in 2019 x
Member
Posts: 68
Registered: ‎01-04-2017

Re: Bone mets - please join in

Christmas wishes and good luck to all . Here’s to a great 2019xxxx

Wendy x
Member
Posts: 234
Registered: ‎30-03-2017

Re: Bone mets - please join in

Hello, i just wanted to wish you all a happy Christmas and positive scan results for the new year

Big hugs to all

Ramade

Member
Posts: 16
Registered: ‎06-03-2015

Re: Bone mets - please join in

Thank you for your replies. I hit a wall yesterday when the onc told me I may not be able to tolerate the Paclitaxel; overtired, oversthinking and just plain fed up!
Today I have pulled up my Big Girl Pants and decided to look forward to seeing my gorgeous pocket rocket grandson tomorrow!
In the meantime I am working to manage my breathing and bought a v shaped pillow to help at night. Part of the problem is that my husband works away Mon to Fri, so the nights alone can be scary. He is now home until New Year. I understand now that there are alternative chemos I can try if this isn’t possible. Thank you all, you are a lifeline.
Community Champion
Posts: 4,532
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi Jayrand56

Some people have an allergic reaction to one type of chemo but not necessarily another. There is another taxane, docetaxel, which works in a similar way but doesn’t necessarily mean you would react to it in such a bad way. There’s also Eribulin which is completely different and is well tolerated plus of course Capecitabine. Some of these other chemos can’t be given until after another one has been tried. I’m sure there is one (there are more than these I’ve mentioned) that will work effectively without the distressing side effects.

Good luck

Nicky xx

Community Champion
Posts: 4,307
Registered: ‎01-05-2012

Re: Bone mets - please join in

Jayrand56, About 4 1/2 years ago I had been on gemcitibine for about 10 months. Hubby and I HD gone away camping for the weekend. I was fine Friday when we left. I woke up Saturday morning extremely short of breath. I couldn't even walk a few feet to the outhouse. I was out of breath even putting socks on. We were due to go home Sunday. We packed up to go home and when I went to hug our friends bye we were all crying. Everyone thought I had taken a turn for the worse and that this was it, including me! I had never been that SOB with my lung mets. Monday morning I called my oncologist and he had me come in right away. They scanned me and there was no change in my cancer. I had pneumonitis. Which is inflammation all the lobes of the lungs. He took me off gemcitibine and all treatments for a month. I had to go on O2. In about 3 weeks I was fine, but my run with gemcitibine was over. FF

Member
Posts: 16
Registered: ‎06-03-2015

Re: Bone mets - please join in

I’ve just started weekly a Paclitaxol and also will have bone strengthening injections monthly
Member
Posts: 1
Registered: ‎20-12-2018

Re: Bone mets - please join in

Hi. What medication are you on to stabilize your lung tumors?
Member
Posts: 16
Registered: ‎06-03-2015

Re: Bone mets - please join in

I don’t know if this is the right thread to ask, but does anyone else have experience of a bad reaction to Paclitaxol? I have only had 2 weekly doses, but each time my breathlessness has worsened. Onc thinks it may be the chemo side effect.
I am currently house bound as any exertion sets me off. It is possible that they will bring me in to the ward this weekend to scan for possible clots.
If I have to stop the Paclitaxol, I’m worried that there won’t be anything else for me. I have lungs mets and bone mets on my sternum