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Bone mets - please join in

Member

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

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

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

Re: Bone mets - please join in

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

Community Champion

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

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Member

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

Re: Bone mets - please join in

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

Wendy x
Member

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

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

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

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

Re: Bone mets - please join in

I’ve just started weekly a Paclitaxol and also will have bone strengthening injections monthly
Member

Re: Bone mets - please join in

Hi. What medication are you on to stabilize your lung tumors?
Member

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
Member

Re: Bone mets - please join in

Ahoj Magick. I have a sage bush in my garden. Will try the tea.

Bon x

Member

Re: Bone mets - please join in

I need to deeply apologise, my message was for Silverlining, not Bonareis.
Bonareus, so happy, you do well and all is stable! Thank you, that you have been here for us with all your support. May i kindly ask you, what you having for problems, insurence in UK ( i asume you are from Uk ) ??
Member

Re: Bone mets - please join in

Silverlining,
Even we ( mum and I ) are from czech republic, inbetween scans is not a really support. Mum has got me, who goes with her, does silly things make her smile and study internet to have at least some answers for her questions....bit sad, that the system as soon as they have not tax paid from you, they somehow quickly forget that you was here for the system for many years...make ne angry, system sucks😤😤😡🤯
Member

Re: Bone mets - please join in

Bonareis, I am so sorry about your pain, i have read that is good to drink sage tee and also have it as a bath.i wish that pain goes away.Exemestane we have no experience, but it should be also gut stuff if that work for almost 3 years!
🐢🍀🐢🍀🐢🍀
Member

Re: Bone mets - please join in

thats exactly what i meant...x

Member

Re: Bone mets - please join in

Silverlining,
For us it was only something little elevation of tumor markers. If doctor dont watch them, mum would have metas without knowing till she receive pain. So happy, that doctor check up because that markers!!! Doctor found it out before pain or other clinical issues come out.