Back to the subject of painful knees - I'm so sorry they are so bad. I haven't taken Letrozole but Exemestane has a similar if maybe not so serious effect and i've found that it seeks out and aggravates any joints or other bits that were suspect before I started taking it B x
Oh, ff, you must be terrified! Please be extra careful, and aware if anything looks strange when you get home - drive fast in the opposite direction and call the police! You probably know that anyway!
There also was a lesson in this as my husband pointed out! Her car wasn't there since it was stolen, so the daughter in law could have just left and said, "I guess she went somewhere!" Thank God, she continued inside to look! That poor lady couldn't have lived much longer without food and water! Four days is a long time for a young healthy person, let alone an elderly person. It teaches us to persue what you went there for. Call the cops if you don't have a key or have any fears! Listen to your instincts! Better to be safe than sorry! I just hope they get this person! They are trying to figure out if these home invasions are related to each other. All of them have been with people home! People have been hit over the head with a gun and knocked out in most of them. If they have a gun the intention is to use it! We do have one law here in most of our states, if you commit 3 violent crimes you can be sent to jail for life with no parole! Hope if they get this person that this might be possible! Jail is too good for this person!! FF
OK friends I have a new FEAR!! There has been a few home invasions in our area. As in coming in and robbing people in broad daylight while they are home. The one that was in the news today was on the road I live on! Just three minutes down the road. Last Wednesday a 72 year old lady had just arrived home. She was grabbed by a masked man dressed in black and hit over the head. He then tied her up, put a plastic bag on her head (luckily it was loose) stuffed her in a closet and left her to die. He then stole her car and left! Her daughter in law had stopped by this past Sunday to do her normal check on her bc she lived alone. She found the poor lady in time! She was in that closet for 4 days before being found. I had drive into town on Sunday and was on my way home and an ambulance and police car passed me. When I got closer to home I saw 3 police cars at the house, but had no idea this is what happened until I heard it on the news today! This girl us applying for her permit to carry! I already know how to shoot. Hubby and I like to target shoot! I'm a good shot! My house sits way back in the woods! I can't see the road or another house, but this means no one can see anything going down, either. I feel like a sitting target. FF
Carolyn, Sorry my kindle changes letrozole to that every time I type it! I missed fixing that one!
Hello Doodles, welcome, but sorry you have had to return to the website! I hope you get settled with a treatment plan soon - everyone else is right - it does help a bit knowing something is being done.
Janette - I thought it must be a real thread, too! Doh!
Pippin - sorry, but I can't help with that - luckily I have never had to have pain control rads (yet, at any rate!), but I'm sure someone will be along soon as I know quite a few ladies have had them.
Carolyn - so sorry your teeth are still painful (probably not caused by your cold, then). It's miserable having painful teeth, and all the time you are dreading the visit to the dentist! Well done with the new tablet (but naughty grandson to break it - not deliberate, I am sure though). It is fun setting up a new tablet or phone, isn't it! And the thrill of it arriving in the post!
Hugs to all. Barton.x
Hi Stresshead, in reply to you post of 19th Feb I think you were referring to something else. I had been going on about calcium and vit D, just mundane stuff!
Hi Doodles123, I feel for your situation re your kids. My three are a bit younger. I am actively trying to prepare them for when I am not arround. I am very focussed in trying to do this in a positive way and I guess my personality is such that I find the albeit uncertain deadline (excuse the pun but I have a horrid sense of humour which I just cannot get rid of) very energising (not quite the right word but I think you will get my meaning). Appart from the practical things though the emotional side is tougher particularly for the kids.
I am at my PC 'cos I am finding walking painful and difficult. I had RADs to hip and pelvis 11 days ago and the first Denosumab 8 days ago. For a good few weeks before this I was asymptomatic. I want it to get better again. Does anyone have any experience of how long the RAD-related exacerbation of pain lasts?
Carolyn, Yes my knees were scanned last summer . I had a bone scan. All clear. Plus they both had MRI's. It started 2 weeks after I took the letrozole. At first I thought I had twisted them too much while camping about 2 weeks b4 they started to hurt. Then I realized they should have hurt straight away. I went on line and found all the comments on letrozole and realized this was the culprit. They are also worn out! The combo effect if worn out/letrozole isn't good!!! It us working so well on the cancer I won't give it up!
I hope you get to the dentist soon! Some pains I can make it through, others I can't! I'm at my worse with tooth pain. Would magic mouth wash help any? I wish you could have seen me one night. I searched the internet for ways to relieve tooth pain. Ibuprofen wasn't working and I had no good drugs!, I was like a mad scientist mixing up solutions and trying them. I'm sure I looked like one too with my reading glasses and robe on, plus my wild bedhead hair!
Have a great day! FF
No worries re the SD. It IS good to laugh tho, isnt it? Have been giggling all week.
Now back to bed for a short snooze
Carolyn, Thinking of you! Hope are able to get the tooth pain under control. I know for me they always hurt more at night. I'm a baby when it comes to pain and sleeping! I think it'sbc I don't sleep well in a goodnight let alone a badnight. My husband can sleep through anything. Sending you HUGS! FF
Avrelia, I second call your nurse or doctor! That said, I will admit I'm great at letting myself suffer til the next appointment. Letrozole has made my knees scream! I'm on oxycodone + 3 ibuprofen for them and they still hurt! It brings the pain level down from a 10+ to about a 6 on mist days! Some days it does nothing! I find it works better if I keep on a routine with it! Good luck! FF
Hi all, the discussion about surgery is postponed for the time being, as my CT scan showed good response in December, but my bone scan showed some new sclerotic mets. The conclusion of the oncologist for the time being is that they cannot call this progression, but she needs to do another scan in the end of March. Meanwhile i got a horrible knee pain just a week ago, and it is getting worse. I cannot fold my leg, whithout screaming of pain. Have tried ibuprofen, paracetamol, nurofen, gentle massage with ointments, none of them is working. I have read somewhere that it might be due to tamoxifen, or a post effect of chemo. Anyone having such problems? My knee is a bit swollen too, do you think that I should make an earlier appointment with the oncologist, asour next one is due on 5.04
Hi Funnyface Nice to hear from you again. I was put on denosumab about 3 months after starting exemestane which tends to make your bones brittle. I have achy joints but have never known which of denosumab, calcium or exemestane is responsible, maybe all 3. I had 2 bone mets when I started.
I just have the one met at L4 and have the denusomab jab every 4 weeks and take 1 adcal a day. I have a phobia about teeth so regularly have nightmares about ONJ but apart frm that (LOL) I don't have any side effects from the treatment itself.
Carolyn, My onc had said if I didn't want to do the denosumab to increase my calcium to 2 daily. I never have many problems with medications, but if I do its often some simple medicine that gives me a problem! I took the second calcium I hurt everywhere (worse than I already do) and severe stomach ache. The one tablet doesn't bother me! I also had a rough time with metformin, very sick on it. I have to take extended release. Yet, I can count on one hand how many times I've had to take an anti-nausea for chemo. Crazy! I was just wondering if people with just one or 2 bone mets take the bone strengthened or if oncologist wait til you have more. I did a bone density test when I started metronome, but they haven't checked it since. Maybe, I should have that checked. FF
Sorry to hear you're having problems with your teeth, hope you get it sorted soon. Touch wood I have been ok with my teeth in the last 4 years that I have been taking denosumab - I call it my wonder juice, it seems to keep my bone mets stable, shame the liver ones have to spoil the party
Take care everyone, all the best with your treatments. I have started eribulin today so fingers crossed this works for longer than kadcyla (5 cycles).....
Love Helen x
Ouch! I hurt just reading about your teeth problems ladies! I have never had strong teeth. Mouth full of root canals and crowns! One tooth had two root canals, which I didn't even know they did! Last year I lost 3 molars all in different sections of my mouth. Luckily you can't see them when I smile. My oncologist suggested denosumab for my one bone met last summer. I refused bc of my teeth. Also the bone has been stable for years and somehow no one had even told me I had it for years. Curiosity question here.How long do you have to be off denosumab to have dental work? Also do you bone met girls think I was crazy not to take the injections with one bone met. The bone met is in my spine at T-11! I don't want my spine to crumble or anything bc I didn't do the bone jab.
Hi Caroline and everyone else.
it must be that time of year, I was chomping away on a lovely strawberry bonbon at the weekend and found a very large filling embedded in it! That will teach me, but I'm not really a chocolate fan unlike you!!
Well went to have my 7th denosumab on Monday and they postponed so that I can have the filling replaced! But then in checking found my calcium levels too low to administer anyhow. Now on double doses of calcium!
Have you ever had low calcium levels?
Anyhow not a wasted journey still had my faslodex injections. Now got the usual sore buttocks!!
Im a bit washed out at the moment I think that it's finally hit home my SBC, feeling very fed up, visited GP whos prescribed anti depressants and sleeping pills for a month to help get me back on track,.
The hardest thing is looking ok, mind ok and wanting to do stuff, like work, gardening and outside stuff (we moved to a small holding 6 months prior to my SBC diagnosis) but body not cooperating!
Im hoping this is only a blip and things will pick up once the sun shines!
Any advice would be appreciated! I've just bought a summerhouse so that I can sit outside even when a bit chilly, hoping that once it's up in about 3 weeks it will cheer me up.
sorry for the long post.
love to all
Hi Carolyn sorry you have tooth trouble.i hate going to the dentist too. I might be starting denosumab soon when bone scan results come in.could I ask what side effects you get from the injection?i need a broken tooth and root removed in hospital (7th march).once on denosumab can you have dental fillings etc .the list of side effects worries me especially the joint/bone aches as I am on letrozole and getting terrible stiffness in joints/aches in bones so couldn't bear it getting any worse.take care Didi
FF...,will miss you. Have a good rest and come back to ys as soon as you can.take care..lots if love, x
Pippin, I have calcichew tablets..I will check what's in them. They are quite big and I prepare to swallow rather than chew them,although when I was in hospital the nurse made me chew them as the ingredients are released quicker and better??.x
Pippin, i too have been thinking sabiut this stuff for a while but want ghe right stuff from a reputable place...are you orepared to share yoyr source? You can pm me if you feel able to.x