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Denosumab

23 REPLIES 23
Carolyn52
Member

Re: Denosumab

Hiya deedeepuss.
I used to have a list of side effects of letrozole but seem to have lost it. If its one of the rarer ones ..maybe you ought to chat to oncologist .
The pill might b small but it certainly has a lot of power to cause us problems. Have you changed the brand recently? I'm on fourth month of cipra brand and just hope to stay with it.
Hugs xx
Carolyn52
Member

Re: Denosumab

Hiya bjh ..best of luck for the bone juice today ..it will b a doddle ..wait and see.
Hugs xx
BJH
Member

Re: Denosumab

Ahh, thank you all for such good advice and personal experiences.  Having my first one today so at least I know what I can expect thanks to all you lovely ladies xx

Deedeepuss
Member

Re: Denosumab

Hi Carolyn

I'm pretty sure its not denosumab. I've had my injection today, but had the facial neuropathy type thing started two days before it. I think its the Letrozole.

Just a matter of wait and see I suppose. But thanks for the info.

Take care xxx
Carolyn52
Member

Re: Denosumab

For a few days after injection I get an ache in my face and a headache ...then day four to seven ..I really ache all over.
I know this sounds really silly ...but the night after I got home from injection ..I could almost feel the stuff going round my body .
Hugs xx
Deedeepuss
Member

Re: Denosumab

Hi

Just had my 15th Denosumab, didn't realise I had that many. I asked about doing them yourself and was told they don't let you, but have been trying to get GPs to do it, without success, all to do with budgets.

Has anyone had any facial numbness? 3times I've had a numb face and lip in the night. I thought it was low calcium as was told this could be the case if I had tingling in my lips, so have taken another adcal, however I still have it at nearly 6pm. Told nurse that did denosumab, Dr too busy to see me due to junior Dr strike. Suggested gp, who won't have a clue and dentist. Just wondering if anyone else has experienced this. The only thing that's changed is going on Letrozole.

Xxx
Barton
Member

Re: Denosumab

Thanks Waffles. I'm not worried abt doing the injections as I am on daily Fragmin injections for a DVT at the end of 2014 and I do those myself, but I was surprised they let you do the Denosumab injections at home. I suppose it's anything to save money. I suppose I could ask to do mine at home but as they co-incide with my Onc appointments at the moment, it's no hardship. If they ever change the schedule, I will ask. Useful to know.

 

Hugs to all. Barton.x

Waffles
Member

Re: Denosumab

Hi Carolyn,

I'm like you. The less time I can spend near a hospital the better! I'm sure you would be able to give yourself  denosumab no trouble but having a community nurse do it is certainly easier. I'm still working so it wasn't practical for a nurse to visit me at home  which is why my chemo unit suggested I do my own injections. xxx

Carolyn52
Member

Re: Denosumab

Hiya waffles ..omg don't trust myself doing them BUT I did do 42 days of fragmin injections after my op...was so chuffed with myself ..thought I should get a part in "holby city" after all that !!
I think here they are still debating what will be done but I think the community nurse will pop over to do.mine in the future.
Anything to save going to oncology and seeing all the ladies being pumped with chemo!! AAGH.
Hugs xx
Waffles
Member

Re: Denosumab

Hi Barton and Carolyn,

The oncology nurses were very happy to show me how to inject myself and gave me a supply of all the needles, syringes and a sharps bin to take away. I just pick up the denosumab at my normal 3 weekly appointment at the same time as I get my Cape pills and keep it at home till I need it. Apparently, quite a few women at my hospital do the same. It's very easy and not painful at all. I inject my thigh as it's easier to see what I am doing that way. xxx

Carolyn52
Member

Re: Denosumab

Thanks Mara . Yes I think that soon its going to b done by the community nurses which will b good.
Our oncology dept is so busy these days and they will welcome less demands on their day!
Hugs xx
MaraUk
Member

Re: Denosumab

hi Carolyn 

 

are you in Exeter only before I moved we managed to persuade my GP to do it to save a very long trip. I know other ladies across the country have managed this as well 

 

mara x

 

Carolyn52
Member

Re: Denosumab

Wow waffles ..like Barton says ..not heard of that before. There is talk of the community nurses coming to house doing them which would save a trip to hospital but otherwise our oncology dept still control it.
When I had mine this week ..there were a couple of elderly ladies having them for oesterprosis. .they must have been in their 80 s so it must be easily tolerated.
Hugs xxx
Barton
Member

Re: Denosumab

Wow, Waffles! How did you manage that? Not been suggested to me, but it would be handy. I have had 2 so far, 6 weeks apart as I have appointments every three weeks (they can do them either 4 weeks or 6 weeks apart apparently).

 

Hugs. Barton.x

Waffles
Member

Re: Denosumab

Hi BJH,

I  find that my side effect is achiness in bone met sites after about 2 to 4 days. This is getting better as initially it lasted about 4 days. and recently had my 4th injection and the pain only lasted a day and a half. 

I am able to inject myself at home  which saves a trip to hospital. I think it is working well for me. xxx

Carolyn52
Member

Re: Denosumab

Yum ..love em !!! Not everyone gets the fruity ones though ...we are special xxxxx
Deedeepuss
Member

Re: Denosumab

I have the fruitti ones, they are quite nice 😊
Carolyn52
Member

Re: Denosumab

Hiya bjh.
Just a thought ..you will probably get Adcal which is a calcium tablet to chew daily.
Make sure u get flavoured ones ( tuitti fruiti or lemon) otherwise it's like chewing a lump of chalk!
Hugs xx
Marirose
Member

Re: Denosumab

Hi
I have been having Denosumab for over 3 years now in the tummy every 4 weeks now every 6 weeks now due to the treatment I am on being every 3 weeks. Never had any trouble with it. It is a bone strengthener and you will take a calcium tablet twice a day.
Hope you are more reassured xxx
Deedeepuss
Member

Re: Denosumab

Hi

I've had it for just over a year now, I think I have my 14th this week. I have mine in the tummy, no problem at all. A few times I've ached a bit around 4 days after, and was tired but nothing significant at all. All my scans show its helping my bones. Nothing to worry about if you have the same results.

Hope all goes well for you
Xxx
miller08
Member

Re: Denosumab

Hi, I have had 2 injections 4 weeks apart. The only problem I find is between the 5th and 9th day after my joints ache but from dayb10 all fine again.

I am about to change from 4 weekly to 6 weekly so that it fits in with my Herceptin injections so will have both on alternate hercetin cycle.

Hope all goes well for you

Carolyn52
Member

Re: Denosumab

Hiya bjh
I have had four now and its nothing at all..just a quick jab in tum or arm.
You just have to get your teeth checked first as having a tooth out can b a problem.
I get a headache the next day and day four to six ..feel a bit stiff and achy.
I understand they r very expensive £340 a pop and are supposed to strengthen the bones and protect them from cancer Mets.
There is a good section here on the website under treatmenrs that gives a lot of info.
One of the few treatments that is easy to tolerate!!
Hugs xxx
rosie53
Member

Re: Denosumab

Hi BJH,  I've been having denosumab now for around 2 yrs, I have it every 4 wks, 2 days before you must have your bloods done otherwise they won't do it, it's mainly to check your calcium levels. I have it in my stomach, some have it in the arm, it isn't painful just a simple injection. sometimes you can be a bit achey for a few days after but nothing drastic. 

Hope this helps Hugs Janette xxxx 

BJH
Member

Denosumab

hi all.

i'm due to start Denosumab this week.  Just wondering if you have any tips/hints on how to deal with it, along with managing any side effects.  

Would like to know how many of you get it, how often and what I should know.

thank you for all advice 

xxx