Member
Posts: 9
Registered: ‎17-09-2012

Re: Bone mets - please join in

Hi
I have just registered on the site. It was really helpful reading all your positive comments. I was diagnosed three weeks ago with breastcancer & secondary bone mets. Unfortunately I had been told the tumour was non-malignant 4 years ago & had only gone to the Doc's cos' I thought I had pulled a muscle in my side!!
I am now on Tamoxifen and Ibandronic Acid, side effects developing nicely including tiredness & bad indigestion. Did anyone else have a flare up of pain in affected area when they started to take the meds? For a few days I was taking Diclofenac, Codene & paracetomol & it wasn't touching the pain. Thankfully has eased off now.

Re holiday insurance. A lot of companies including Mia wouldn't accept me because it's less than 8 weeks since I was diagnosed. Have now managed to arrange it with Free Spirit at £421.33 for my husband & I for one week to Malta.
Member
Posts: 157
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi LyndyLoo
Just to let you know that I phoned Mia insurance on Friday for a quote on a cruise in November for 2 weeks in Europe and nearly fell off the chair when they quoted me £89! Was expecting it to be a lot more than this so was really pleased.
Am currently on Herceptin,Pamidronate and exemestane and have liver and bone mets but since finishing Docetaxol in April I have kept quite well and my last scan in June yielded good results. The lady I spoke to said the insurance is only valid 60 days from start date of holiday and a letter is required from my onc to say I am fit to travel (which shouldn't be a problem).
Needless to say, we booked the cruise after that news and knowing I have something wonderful to look forward to will certainly keep my spirits uplifted.
Hope this info helps and that you can get your holiday sorted with a quote from Mia.
Liz x
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Posts: 505
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi Katie2002
Not been on here for a while just reading your comments regarding my saying going for regular check-ups. I go every 3 months to see the oncolgist have done since I finished treatment February 2010. I don't get bone scans very often the only time they scan if I have pain anywhere. Example I had a lot of pain in my hand and wrist since January I happened to mention it in about June this year when I saw the oncolgist. I was sent for a bone scan. It did not show up any nasties. Eventually I was sent to see a rheumatologist turns out it was De Quervain's tenosynovitis and was given a steroid injection which helped a great deal. On a different note still struggling to get a reasonable quote for travel insurance. I tried AllClear Insurance and was quoted nearly a £1,000 which I feel is far too high. The way I look at it I work 4 days a week still managing to go swimming twice a week surely I cannot be that much of a risk for them to quote such high prices. Did try to ring Mia Insurance tonight but they close at 5. Can I ask you ladies what is a realistic quote in your eyes. I would much appreciate your help and advise on this.
Member
Posts: 24
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi ladies,
Thank you for your comments , well my pet scan results are a little more activity to my ribs and spine so am going to be given falsodex think that it is what it is called once a month and still keep on with the letrozole and zometa hmmm
Does anybody else have this combo and if so what is your experience, and why does it seem as time goes by (9months) does the side effects of letrozole seem to get worse I feel like I have broken thumbs and feet lol.
I think this site is great and would like to become more active on it, but am going to London
For 3 weeks on Tuesday so I hope to try and log on when I can but if not will when I return to Dubai.
Btw will also have my second opinion with my onc in London not that I do not trust my team here.
So ladies be as well as you can take care and thank you once again for a great site that we really do not want to be on by choice.
Big hugs to you all xxx
Amanda( AJ ) ps why do some people have pet scans and others have MRI scans??
Highlighted
Member
Posts: 3,444
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi scottishlass,

I will pass on your comments about the chit chat games still being clunky.

Sorry you are having problems starting a new thread. If you click on the subject in the left hand menu where you would like your post to appear, you should be able to see a box to start a new topic. When you click on this it takes you to a page where you have to scroll down for ages before you find the box to type your post.

Hope that works!

Very best wishes

Janet

BCC Moderator

Member
Posts: 13,021
Registered: ‎01-05-2012

Re: Bone mets - please join in

I WANT TO START A NEW THREAD AND DO NOT KNOW HOW TO DO IT. cAN SOMEONE POINT ME IN THE RIGHT DIRECTION?
tHERE IS A TITLE IN THE LEFT HAND COLUMN THAT READS "Chitcaht Games" and has been going on for years.
But there has been no one on them for 3 days and it used to be a relaxing way to get to know each other through word games.
I wanted to invite old users and new to look it up and join us if they would like to get to know us better.
Can someone cut and paste this or tell me how to srtart a new thread titled "Invitation to join us in word games"
I would also like BCC to take note that the games are still clunky and this part of the site is just not working as well as it could since the changeover. Such a crying shame. As it helps to unwind at the end of a hard day. val
Member
Posts: 56
Registered: ‎06-08-2012

Re: Bone mets - please join in

Ladies, looks like there's lots to catch up on. Hope everyone is ok, especially hope those waiting or worrying get answers soon.

Thinking of you and I hope your weekends are going well xxx
Member
Posts: 13,021
Registered: ‎01-05-2012

Re: Bone mets - please join in

Good to have you back Esha Ness. I read your post on another thread and delighted you are doing so well. Just wish you woud pop in more as I miss your posts. Good to see you back again. Love Val
Member
Posts: 151
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi all Bone Mets mates
I have just put a post on Triple negs site by mistake in response to Vals messages.
Still trying to get my head around this maze !
Esha
Member
Posts: 13,021
Registered: ‎01-05-2012

Re: Bone mets - please join in

AlexD Good to see you posting agian but really sorry to hear the devastating news about your sister. Just to say I am thinking abut you all and hope things improve for you both but realise that it is a poor result. Hugs.
Helen, I have nothing really to add abotu your worry but suggest you make an appointment to get it looked at. It may be something totally unrealated and just an infection that can be easily treated. When we have been bdagnosed with Bc we always expect the worse and sometimes that just isn't he case. Hope it is something easy to deal with an not a nasty.
I have been in all day and spent a lot of time resting and sleeping in bed. Felt very nauseous and am constipated so took a sachet of movicol and am about to take another. (sorry too much info but the first sachet helped and made me feel more comfortable). My Oh has been busy washing down wall in our old upstairs bedroom, scrubbing the carpet, took drawers apart and dusted all the surrounds and behind the units. Well it is all of his own making....he decided to buy a new bed in John Lewis and it gets delivered on Monday. He had moved out good newish bed downstairs to the downstairs bedroom for me after my op to save the climb upstairs so we are leaving that one in the downstairs bedroom now.I can use it in the day if I need a lie down for an hour. Plus we have another spare bedroom upstairs and there is the bed my daughter likes when she stays the night. So we will have a 3 bedded house again. Not had that since we had the two girls at home.
He ran my Yd to her friends. befoe she left she had popped in to see me and we had just had a meal with leftovers which she scoffed with delight and then had the added bonbus of getting a lift to her pal's flat nearby, but akward to get to by public transport. he had been bust ironing before he went out so I managed to stand and watch the iplayer on Tv watching Parade while I finished the shirts and blouses and managed to complete the task and put it all away for him coming back. Well he had been a busy boy. What would I do without him I do not know. He is so patient with me and doesn't complain. I am a lucky lady.
i am still worried about the chest xray and am going to make an appointment with My Gp and my dentist next week. I have something not right in my mouth and have been busy brushing and using mouthwash. But the problem is steil there after 2 /3 weeks so I need him to have a look incase it needs attended especially if I need to re-start chemo. if the xray finds anything I think I need to reconsider things and start the capecitabine sooner than I intented to.
Hope you are all having a peaceful or fun fuilled weekend depending on your health. Much love Val
Member
Posts: 2,183
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi Helen

Sorry you are feeling worried, I am sure others will be along soon to share their thoughts and experiences but just wanted to say that it might be a good idea to call your medical team for their advice or call the Helpline on Monday, they're on 0808 800 6000.

Kind regards

Louise

Facilitator

Member
Posts: 420
Registered: ‎01-05-2012

Re: Bone mets - please join in

Oh sorry also Helen - get yourself checked out and I hope it is something simple and benign like mastitist or whatever the human equivlent is. do let us now.
cyber hug Jacqui
Member
Posts: 420
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi just catching up with this thread. Val your info about pills vs infusin is really helpful. i am so glad that I am not the only one hating taking the pills - this has really disrupted my mornings and I am rushing off to work with out eating. I take amitriptylne for nerve pain at night - waking up is a real chore as it is without missing my tea. Also now have to add omneprazole to my banquet of pills mid-morning to help with the stomach acid. May ask to try the infusions
Hope things are looking up for you - things do seem to pile up with this disease. I was so p***ed off to find that I had a couple of tumours in my left lung when the CT rresults came in.
Dawn you must be so excited to be able to go into granny mode - I have a new 5month old and she has just kept me going through this latest debacle.
This will probably sound so childish but I have to express this to someone - I am still dithering with regards to starting back on Tamoxifen. I find the though of going back to the night sweats, fluid retention, aching joints thinning hair and weight gain soooo depressing. Still I am sure that crumbling bones and flooded lungs are worse. Yes I know they will probably help to keep me alive but it was so wonderful when I stopped. Oh well for the sake of little Olive I had better get on with it . To nighs the night!!
thanks for for all your informative good humour - Jacqui
Member
Posts: 69
Registered: ‎01-01-2010

Re: Bone mets - please join in

Hi all really hope you are ok val , I'm really scared wondered if anyone can help I woke up this morning and the breast I had lump in 2010 is very pink /red it feels quite hot am so scared this may be inflammatory bc can this happen ? Have been feeling pretty crap last few days feel like have flu like symptoms and aching joints which put down to arimodex I'm panicking like mad x
Member
Posts: 244
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi everone,

I have not posted for about a month, my internet went down however it is now fixed. A lot has been happening on this thread. Val and LG I hope you are both feeling better, having BC can get you down sometimes. I think we sometimes underestimate the amount of emotional energy that we expend just to put on brave face.

Dawn good to hear that the babies are doing better.
My news is a mixed. My last bone scan and tumour markers show that I have remained stable. It is nearly 4 years since my secondary diagnosis. The bone scan report said that the hot spots were more avid and that this could be caused by the bone healing. Hooray for herceptin.
Last week my sister was diagnosed with secondary breast cancer in her lungs. Fluid has built up and it is malignant. Her primary dx was in 2005, she was 33. She had only recently been signed off by the oncologist. We have the same oncologist. I am absolutely heartbrokeon by her diagnosis, for some reason it is worse when it happens to another member of your family. She has 3 children aged, 12, 8 and 18 months. I think I feel so devastated for her because I know what it feels like to have a secondary BC diagnosis.
I am now going to do some therapeutic baking to try and lift my mood a bit.
AlexD
Member
Posts: 124
Registered: ‎01-05-2012

Re: Bone mets - please join in

Na7asha - great news about the start date for chemo. What are you going to be on? It's like someone else said to you- it is doable.
I went into work today - I am hoping to return at the start of December. My boss was lovely and very understanding about me wanting to go part time.
Anyway hope everyone has a good weekend xx
Member
Posts: 1,304
Registered: ‎01-05-2012

Re: Bone mets - please join in

Oh Val - one thing after another for you at the moment, isn't it? Don't be so hard on yourself and remember all the advice you give to us!!!! Hope you do get some sort of answer today and don't have the uncertainty of not knowing over the weekend. It's that awful waiting game. Big hugs xx
Member
Posts: 56
Registered: ‎06-08-2012

Re: Bone mets - please join in

Goodness Val, cancer is a long twisty road isn't it. Hope you do hear back from them today and you get answers and a plan if you need one. Thinking of you xxx

I'm finally starting chemo, 24th so in just over a week. Apprehensive but keen as mustard to get on with it.

Roll on the weekend and love to all xxx
Member
Posts: 124
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Re: Bone mets - please join in

Hi Val,

Just wanted to say that I will be thinking of you. I do so hope you get answers today and that everything is ok.

Katie x
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Posts: 90
Registered: ‎01-05-2012

Re: Bone mets - please join in

Oh Val, sorry you're still not feeling right. No point trying to second guess what, if anything, is up with your lung. As you and others on here frequently say it's the uncertainty rather than the knowing that is so unsettling. Hope you get an answer today and are not left wondering and worrying over the weekend. Needless to say, hope there is nothing seriously amiss. Best wishes x