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
Hello Maldives, sorry to read you are suffering with nausea. Did the hospital give you any pills for that? If not, I should ask for some.
Carolyn, you sound chirpy this morning! I have several drawers like that, not just one! However, I do still have all my cutlery - apart from 1 teaspoon, which I think I must have chucked away with a yoghurt pot years ago!
Ladybird, so glad the MacMillan Nurse is so good - it's wonderful feeling that someone cares enough to go the extra mile for your wife.
Hello B, glad you had a lovely week in Dorset -reminiscing is great, isn't it?
That's a bit extreme of the hospital, isn't it? Over a month and a half postponement! And that's two whole months from today! No wonder you are upset. I sometimes wonder if they realise how much it affects all of us anxiety-wise.
Edited to add: Yes, looking forward to next Friday!
Hope you are enjoying the weekend and the warm weather. I managed to get out and potter in the garden this afternoon which was great.
I'm a bit late to the debate about cannabis oil but thought you might be interested to read this informative article on the Cancer Research website and make up your own minds - http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-...
Hi Janette It'll be hard for a bit without your little girl but when you do see her again it will be great. I remember thinking how wonderful it was to have grown up children when they took their first steps out into the world.
Maldives - glad to hear you are feeling well and coping with cape (mostly)
I've been on a nostalgic trip to Dorset where I used to live with husband, daughter and grandchildren, a great week. When i got home I found a letter from the hospital postponing my 6 monthly appointment with the onc from March 1 until April 19! I'd been psyching myself up, now feel at rock bottom. He had said exemestane would work for 12 - 18 months, well the 18 months is almost up.