Medication for bone mets: Thankyou to... - SHARE Metastatic ...

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Medication for bone mets

Rotagirl
Rotagirl
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Thankyou to all you kind people who offered advice on mouth ulcers....I am working on it. At the clinic yesterday I was told my cancer markers have gone down....good news...so Palbociclib and letrozole must be doing something. In 2 weeks I start denosumab (prolia) because of bone Mets. This is really frightening me, esp. Jaw risks. How did others find it?

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Crazydentist

Hi

I’ve had no problem with denosemab apart from aches and pains for a few days afterwards

Don’t worry about osteonecrosis if the jaw..it’s very rare and usually after something like an extraction or surgery to the jaw

As long as you look after your mouth and have no loose teeth gingivitis/periodontitis ..have a check up and hygienist appointment preferably before your first injection

Obviously I don’t know what your teeth are like but I’m a retired dentist and many of my patients were on various bone strengthening medications for mbc and osteoporosis..none ever had a problem

Hope this helps

Barb xx

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Rotagirl

Thanks for that, feel a bit more positive! Fayx

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Crazydentist

Hi

I’m on the same meds as you letrazole and 100mg pablociclib..I have extensive bone mets but after a few months the tumour markers went down considerably..hopefully somethings working

I hate all this and I’ve had a tearful day today..the smallest thing can set me off..my little bunny escaped a few days ago and I can’t find him so I think that’s triggered the tears

I’m going on a gin tasting evening tonight with some chums so that will be fun.. mothers ruin isn’t it??.. oh dear

Barb xx

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Rotagirl

That sounds a good idea, I love gin and tonic. I had a lovely thankyou letter from Oxfam today thanking me for 9 years helping in the book shop in Ludlow, that set me off! Hard isn't it? All the best, Fayx

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SeattleMom

Hello!

I've had a monthly injection of Xgeva (Prolia) since last November. For a few days after (especially in the early months) I noticed joint pain in knees, hips, and elbows. This has subsided following most recent injections. However, at my most recent monthly appointment, my oncologist changed my injection to "once every 3 months" due to the (minimal) jaw risk but more due to the fact that the bones, over time, can become very stiff as a result of the med. You may want to just discuss with your onc the LENGTH of time you will maintain a monthly injection. Good luck and prayers on your journey! Linda

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Crazydentist

Hi Linda

This is interesting as most of my bone mets are sclerotic..that’s why I haven’t more fractures thank goodness..I will ask my oncologist about the length of time for denosemab as I don’t want fractures because bones are too hard.. nightmare!!

Barb xx

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SeattleMom

Yes, Barb! It would be interesting to see if your onc is in agreement with this decision. I'm very confident of my onc's recommendations, as she also serves as a research scientist at the Seattle Cancer Care Alliance; i.e. top of her game. Let me know what you find out! XXOO Linda

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SeattleMom

P.S. So sorry to hear about your bunny! It made me tear up, too! :(

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Crazydentist

Hi Linda

Yes poor bunny very old and not very well so I’m sad about him

Been out with the girls for the gin tasting and was fun but I’m very tearful and down in the dumps now I’m home

Barb xx

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Clair19

I’m sorry about your baby bunny? There’s no way you will find him/her? I’m also sorry your down today. I’m thinking making so many decisions and health problems drive us crazy. I’m betting you will get up tomorrow or maybe today and bounce back. You seem very strong and positive most of the time. We all have these days. My husband has MS and today he can’t walk, so that has kept me busy and off my problems. But hopefully he’ll be better tomorrow. I get my new bone injections tomorrow, so it’s all good. May I ask how many places on your spine. Thanks

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Crazydentist

Hi Clair

Every bone pretty much..pelvis sternum ribs and I have a fractured vertebra and rib

Barb c

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Clair19

Oh my! I hope you’re feeling better today! I was at hospital with my husband all night. Are you taking pain medicine? I hope you feel like your self before long.

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Crazydentist

Hi Clair

Thank you for your good wishes

I feel much better now I’ve ridden my horse..it’s very windy so he was a bit skittish..enjoying himself spooking at stuff blowing about!!

I take painkillers constantly but sensibly..I find paracetamol with codeine very good..I’ll add ibuprofen if pain is bad..I have prescription for morphine but I don’t like those..constipation and can’t drink!!..no fun there

Hope you’re doing ok

Barb xx

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BangorBelle56

I have been on Denosumab for about seven months. Like you I was worried at first, especially as I have always suffered with jaw problems, but so far so good 😀

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