Hi everyone. Ive no idea what im doing and i dont know how to join in threads already running. I was diognosed in 2014 with breast cancer that had already spread through out my bones. Head to toes unfortunately. Like many of you i have had different chemos and treatments and radiotherapy for the pain.
My question is on the bone juice zometa. Has anyone suffered with numb jaw and teeth as a side effect. Ive been having zometa about a year and the side effects seem to be getting worse. This time ive lost the feeling in my left jaw and teeth (bottom row). The other dide is painful but not numb.
My dentist says theres nothing wrong with my teeth or jaw that he can see and hes refered me to the max fax clinic. Has anyone else suffered this type of side effect and what happens. Ive lookkef it up a little but like everything it scares me to death. Ive already had two femur nails put into my legs and wondered if its a similar thing in the jaw? Any advice would be gratefully received.
Welcome to the forum!
There is a known side effect related to the bone strengthening drugs that all of us with bone mets are on. It’s called osteonecrosis of the jaw and it could be that which you’ve seen information about. I would definitely speak to your oncologist about this and also the max fax clinic. All dentists should be aware of it as lots of people are Alison on bone strengthening drugs for osteoporosis so it’s not just us bone mets people that can get it. There was another recent thread about this and a lady was suffering very similar symptoms to you, if you scroll down the screens in the secondary BC section you should be able to find it. I don’t have any other information about it but one of the nurses on the helpline might be able to offer advice? Or a BCN?
If you want to access, or add a comment, to an existing thread choose the section (in one of the boxes) you want to go to on the front screen, eg Living with Secondary Breast Cancer. Then you should see different headings eg Treatments and Medical Issues, or Living with Secondary Breast Cancer (I know, it’s confusing, there is a main section and a sub section called the same thing!) then you will see the various threads eg Bone Mets Please Join in. If you click on the heading of the thread you will see the most recent posts for that thread and can go back, sometimes over many, many pages, to read them all. You can only post on a thread if you are logged in but can view the threads to read them if you are not logged in. I hope this helps you and please join in with us, we are a friendly and supportive bunch who offer lots of genuine advice, shoulders to cry on and somewhere to rant - or laugh.
Nicky x
Hiya Maldives
Thanks for posting here as this problem has been queried so many times and we are all worried by it.
I asked my onc again this week and he just said its a 1%chance if having invasive dental work but its still not making me feel very assured.
I have terrible teeth and had to have 2 out before I started denosumab a year ago. Xmas eve I lost a filling and dentist replaced it gently …no injection or invasive work and since then my teeth all feel tingly and achy my dentist is going to check through and report to oncologist about what needs doing.
I know its important to keep our bones safe but also don’t want the stress of this as well.
Carolyn xxxx
Hello janni
Don’t worry …we are all around to read your posting …
Oncologist said this week to me they are only just beginning to suss out the best time for denosumab injections …ours stop after three years …after a certain time they can make them quarterly …I had ten monthly ones and now on my request have them six weekly .
As far as hormonal pills are concerned …everyone copes differently …they are much easily to tolerate than chemo!!
Anastrazole is now renamed but was arimidex in 2004 …I took it for three years …just a little creaky knee if I remember rightly. I’m on letrozole now ( was femara) and if it does what it says on the tin …then I will put up with aches, itchy scalp …nothing much really.
Carolyn xxxx
Ps janni
If you get used to the threads here …there is a section called “going through treatment” then sub named " hormone therapy" there is a lot of support there with side effects too but please stay here as well …the more the merrier !!!
Xxx
Hello Maldives
Sorry just read your original thread and noticed you had two femur nail pins. 15 months ago I had my left femur pinned too …they are only a few of us that have this on this website …can we be femur nail buddies too ?
Oh janni
Sorry to have confused you …I had primary dx 2004 op, chemo and rads then did two years on tamox and three years on anastrazole ( arimidex) as part of the five year treatment .
I was dx with bone Mets Oct 2015 and so my first line hormone treatment has been letrozole now. They both do much the same thing.
Carolyn xxx
Sorry janni
Never heard of that one …I always stay with this one or sometimes inspire as its a minefield with lots of possible hocus pocus stuff and this one is safe and moderated well.
Best of luck though with it …
Carolyn xxx
Hi everyone thank you for the warm welcome. Can you tell me if i reply under the posts (add comment) or should i be posting at the top?
Hi carolyn and nicky. Thank you for the support. I saw my onc yesterday and he sees to be a bit blaze about my jaw. My bone mets are increasing each time i see him. He says hes not worried but has ordered an MRI in my liver and skull. Also having that big radiation scan that looks at the skellatel bones. Ive also got an appointment with the MAX FAX specialist on 23rd. a lot of scans coming up so fingers crossed. Hes a great onc and i do trust him.its just difficult not to worry when the bone mets keep increasing. What dide effects do you get from the zometa?
Sue xxx
Hi love to be femur buddies but dont know how to get around yet. Its hit and miss how
I get on here lol. Have they said you need the other leg done? I fought for 6 months to put second one off as it was so painful. Do we need to start a different thread for femur nails? Sue xcc
Hiya sue
No I only had the one done as an emergency as scan found a hole in femur and was in danger of snapping …after 15 months still find it pulls and stiff …the bolts sonetines dont move with me …and walk with a crutch outside the house …I think a hip replacement is easier but I suppose the nail option is the cheaper option.
How mobile are you ? yes can understand u not wanting a 2nd one done … had to have rails added round house and stairs so I could get around. Still haven’t driven my car yet …just too wobbly !!
Carolyn xxx
Hi carolyn im quite mobile. Im driving and i can walk for about 40 mins. It just depends on the pain level. Im on really good pain killers oxycodene. Without them i would be bedbound. I use rails for bath toilet ect. Struggle with stairs a bit. Its weird really because i was in mexico over christmas and was in a wheelchair. yet since ive been home ive started walking the dog. Im finding its helping must be building muscle.
How are you generally ? I find fatigue is tge worst thing at mo.
Sorry pressed button by mistake. Im still not sure if im in the right feed? Can you only talk about one thing per feed? Can anyone advise a newby
Hi there Sue,
yes you can post about anything in any feed, eg things come up in an ongoing conversation…but often you will find another thread that could be more useful to you…have you tried the bone mets thread yet…that one seems to always be thriving and you might get even more replies on therexx
Moijanxx
Ps you can reply at the top or on the post…if you reply to a paricular post you will have that post contents on your screen to remind you what was said…but often I reply at the top to a general conversation. Xx
Hi moijan. I cant find bone mets link. The one i found didnt have any recent posts. Ive found myself replyibg to posts 6 months old. I take it the date is in the right hand corner.
Are all the posts linked to specific feeds or is thier a general feed. Could you tell me how to get to bone mets link. Xx
Hiya sue
It’s difficult to direct you as we all get into the threads in a different way through whatever device we use.
If u can find the main menu …take living with secondary bc and then you will see a thread called " bone Mets …please join in" that’s where most of us meet …
I was thinking of private messaging you as a femur pin buddy as it will bore everyone else as its not a common thing …are you set up for it? I will just send u a test one .
Carolyn xxx
Hello sue
I sent you a test message …you will see a little envelope with messages …you just click there …did u get it?,
Oh janni
I should avoid that sort of website …just remember everyone is unique with their prognosis …stick with us on bone Mets thread and enjoy some worthless banter !!
It’s chocolate at the moment but it was crocs and comfort earlier !!!
Actually moijan …it might be a good idea to open a new thread for femur pins and hip replacements as there might be ladies reading that might like to join in.
Otherwise …it won’t bore the rest of you if its separate .
So maldives ( sue) it will be on the list just down from this one for you to join in.
Carolyn xx