Hi Liz, Thank you too for your comments. I just say it how it is really ( for me anyway). Because I feel “comfortable” where I am now and have passed the frightened and overwhelmed feelings it is perhaps easier for me now. “Hope” just wasn’t around when I got diagnosed with bone mets…felt like an invisable person. I know that my symptoms/illness could change at any moment so each “normal” day is a day to savour. But I never thought that I would feel this good again. But there are still days when I feel crap, tired, bored, and frustrated that my body cannot do what my mind wants to do! It would be good if we could keep this thread open so we can all support each other when we have low moments. Love and hope to all on this thread. Love Val
Val - like the idea about keeping this thread open and think it would be very useful. I think we are on the same wavelength re our attitudes to this disease (not sure whether you have read any of my other postings) and I now feel in a very good place in spite of having this disease. I’m going to make this the year I go places instead of putting them off while I’m fit enough !! I hate the word positive but that is what I try to be. A friend says a better word may be perky and I prefer it!
Keep well everyone and let us know how you get on.
Liz x
Having been dx way back before there were forums like this it was a lonely time. Despite so many being diagnosed with bc I seemed to come across very few. But looking back now over the past 20 years I am so glad, despite several recurrences and bone mets for 8 years I did make the most of the time. My OH was very happy for me to do some of the things I always wanted to do so it was with his blessing that a widowed friend and I went on lots of holidays and saw something of the world. Don’t wait till you are older, retired, or whatever. If you can do it - do it now :). I probably won’t travel any more but I have such memories to look back on and enjoy.
Dawn
xx
Hi Dawn, Nice to see you back again. Please help keep this thread open by posting here for us. I have missed contact with you. I know things have not been so good for you recently so let us know how you are doing Dawn.
Liz, I agree with all you said there . I had no holiday abroad last year and felt I had really missed out as the relaxation in the warmth really boots my morale. So…WE have just book a ferry from Scotland to Zeebrucker and taking the car so we can drive to visit my daughter in SW France. It will be my 60th on the 22nd and my daughters boyfriend will be 34 on the same day. We only booked yesterday and I am over the moon. Nonna and I first met on my 50th ( his 24th) when I went over to Brittany to tell Joanna about my mets. So a lot to celebrate…but a great boost to the system to both me and especially my husband who needs a break as much as I do. It has been a hard year is lots of other ways. It is so exciting…I am over the moon. So if I go missing for a wee while do not worry.!! Love to all on this thread. Love Val
Hi all – definitely go everywhere while you can! After I had my bone & liver mets dx in 2003, my partner & I went on a couple of long-haul “trips of a lifetime” and really enjoyed these. Val, I’ll be thinking of you turning 60 on the 22nd of Feb, and hope you’ll be thinking of me doing the same on the 23rd – my partner and some friends are taking me out to our local fish & chips restaurant for their “pensioners’ special” for my birthday lunch 
Many happy returns, and love to everyone here.
Marilyn x
Val, I am delighted that you have booked your break and I think this will spur me on to try harder to get away this year.
Good for you, hope its a wonderful time.
Marilf, fish and chips, yum.
I am delighted that we have somewhere to post, I was dumped by my McMillie nurse yesterday! She is retiring and always took offense that I didn’t contact her enough, but she was a bit dour and scary. Been discharged as I didn’t take advantage of the service. Strange but true.
I didn’t get away last year despite telling my boys we would, I didn’t have anyone to come with me (adult) my stamina is poor but I have been inspired and will find a holiday, maybe a hotel near everywhere and just darn well go with my youngest boys this year.
Also my eldest was 17 yesterday and every birthday they have, the older they get I feel a huge sense of relief. I am wising not their time away, its difficult to explain but I do feel a sense of achievement on every birthday they have.
Love to all. xxx
I had the defination of Stable re my bone mets explained at my appointment today and it makes sense to me now.
Onc said that when they refer to me as having stable disease it means that the mets are still confined to the bones. Any spread to soft tissue or organs would change my status. So it doesn’t matter how many mets appear from dx’s I would still be classed as stable as long as they are in the bones.
I took a long list in with me with my questions and got all of them answered. I ticked them off as I went along.
I have not been given bisophates as they would like to keep my kidney function safe (in case of chemo in the future) and didn’t think that the infusions are needed and he said that the benefit they offer is pain relief and there are other opitions to be tried first. He still said that chemo was not effective for bone mets and was not given if the cancer was only in the bones. I did question that re - the experinces of ladies on here but he wasn’t to be moved on that.
I did have a bit of tantrum as I had booked to see my consultant but he did take his time with me and finally someone had taken notice of the severe headaches I have been suffering from since 8 Jan and booked an brain CT for Tuesday. He said that I should have been scanned at the first instance that I mentioned it and not to be fobbed off by BCN or GP.
He gave me oramorph to help with the headaches and also told me that I could book an appointment with him anytime to talk about stuff, don’t need a symptom to book a appointment.
So we start the scan treadmill again but at least its not long until Tuesday.
Paula x
Hi Paula,
Very glad you got your questions answered - think it helps you feel better, doesn’t it?
Good luck with the scan and keep us updated here!
I’ve been to the hospital today for my bone drip then went to meet a friend who was recently diagnosed with bone mets. We had a really good chat, compared notes, kept forgetting what we were about to say but it was great for both of us to talk about things the other could understand.
Take care, Liz
Hi Paula
I have just noticed that your first thread said you have changed to Exemestane. I took this for 3 months and had the most awful blinding migrane type headaches about twice a week (I was sure that I had a brain tumour) but once I stopped taking it, the headaches stopped almost immediately, I wonder if this could be the cause of your headaches?
Good luck with the scan
Linda
Hi Liz and Linda,
Liz, I feel much better for seeing the doctor, he said he felt that I felt abandoned (which was true but didn’t like to say). It was nice to be understood, have clear answers to my questions.
I am pleased you and your friend can help each other, thats really good.
Linda, I hadn’t thought about the Extemestane, I started it in June last year, the headaches started on 8th Jan and were severe and unrelenting for two weeks. GP put me on higher dose bp medication, spray for my nose incase it was sinus problems. Did improve but they are back. I did have brain absess when I was a kid from the sinus and it reminds me of that, its not impossible it something like that, they said it could recurr even years after.
I am going to try and think of all the other things it could be and just have to wait and see.
Interesting about pains and what they could be, I had severe pressure in both collar bones, the onc told me that was because of the headaches! The neck muscles spasm, in turn pull the shoulder and chest wall muscles up and this applies pressure on the collar bones.
I found that pretty amazing, I was convinced something was going on with those bones. Just goes to show really.
Thank you, I will let you know how it goes.
Paula x
Hi Paula,
Like Linda I too had headaches with Exemestane.
My bone mets have been completely inactive for nearly 2 years, all the while I’ve been on Capecitabine (Xeloda) and I’ve had no side effects apart from dry heels which isn’t a problem as I put cream on my heels every morning…so just to reassure you there are chemo treatments that work well for bone mets only patients…but hopefully you have MUCH more time with hormonals yet.
Just reading your other posts here and it was entirely my choice but I have only seen a Mac nurse once, just after my bone mets diagnosis which is nearly 7 years ago now.
Good Luck, hope you are reassured after your scan and don’t have to wait long for the results
x
That is good news Belinda,
I was trying so hard to remember the name of the chemo, should have written it down. I did challenge him on it, as I have read different here. He wouldn’t be moved on it. I asked him if this was the opinion of his team or a general opinion from the medical people in the rest of the country, he said general opinion. Obviously not though. Mount Vernon is the hospital the onc’s work from. Strange this is.
I felt a bit upset by the manner of the McMillan nurse, she was quite rude, but I won’t miss her. I felt rather abandoned by my team, who up till mets had been great. It was the pat on the arm and not to worry its stable reponses to all of my questions that made feel bad.
I hope it is side effects from Exemestane, I am surprised they have taken so long to start but I won’t rule it out. I am adding more and more things to the ‘what it could be list’.
Thanks Belinda, I will get my results Friday after their meeting so not an impossible time to wait.
Paula x
Hello Ladies,
Just thought I would let you know that I had my Brain CT and good results. No Mets seen. It was a scary time and my results came back the very next day, last Thursday. My nurse phoned me and I feared the worse because it was so fast but it was all alright.
After a ten minute euphoria of relief, I plunged down again into a very dark place and its taken a lot of effort to get out of there. I must have been more stessed then I thought.
I pretty sure most of us have experinced the down even after good results, strange one but thankfully its passing now.
Anyhow some good news.
I hope you are all doing well.
Paula x
That is good news Paula. I (think) I understand the euphoria followed by the big dip…it’s almost as though we have to check ourselves, I receive good news but I’ve still got IT…that’s how I feel at times anyway. I’m glad to hear this is now passing…x
Hi Paula
I’ve been following this thread but not added to it yet. We all understand all the tension and stress that secondary dx’s in particular cause. It’s no wonder you had a bad headache! Great to hear there’s no sign of brain mets - what a relief.
There certainly are different treatments out there if it’s needed but I do find it strange that different onc’s have different preferences. I know we are not all the same but you’d think there would be some standardised treatments. I had chemo for bone mets in May 08 but this was also due to a local recurrence. My onc felt that hormone treatment only would do the job by itself but I wanted to stop as much activity as possible before it spread or did anything else. So far I have been stable and hope I stay that way for as long as possible - as we all do. I make the most of my time and definitely get on an do as many treats as possible - however if you are in pain this isn’t as easy. I hope you can take comfort from you good scan results and sort out any issues with yut treatment that don’t seem to make sense to you. It’s good to know you can contact your onc at any time.
Nicky x
Hi Paula,
Absolutely brill news !! I think that no matter how hard we try to convince ourselves we are not too stressed about tests/results etc, deep down it gets to us all.
Let us know how you get on.
Liz x
Hi Paula
Glad you ha ve had good results and there is no further spread. it is true I think that different Onc’s have different opinions on all kinds of things. I was diagnosed with BC and bone mets in July last year. I havent had any chemo either just femara and zometa drips but treatment seems to be working am having results from my staging scan on Wed and hoping for good news.
Love Julie x
julie,
thinking about you and hoping for good news on Wednesday.
nicky
Hello Ladies,
I hope you have good news from your scan Julie. Thinking about you.
It is strange that different treatments or non treatments are offered from different Onc’s. I can’t say I understand it to be honest.
When I got my results, my BCN said I didn’t need to see the doctor and we should go back to me contacting her if I have a new pain that doesn’t go away after two weeks. I did ask if there was 6 months bone scan or even appointment but she said its usually you contact us.
I suppose a 6 monthly check would give me a feeling of a saftey net, but will have to just look out for myself.
Paula x
I wasn’t stable at all. A medical report was wrongly typed up and the summery in my file said no new mets when in fact it should have said new mets to T8 and T10 - I knew about these mets but of course every time the doctors looked at my file they didn’t. I finally sorted it out after months of questioning, of increased pain, referral to a hospice for pain control. Two months ago it was realised that there were errors in my file, had a blood tests and tumour markers where high. CT and bone scan showed deterioration in many areas and severe bone thinning, so much so that its hard to distinguish if where the mets are. Urgent MRI revealed slight indentation of spinal cord.
Had Herceptin yesterday as they redid my path tests, again an error as I am not OR positive as first reported but am Her+++. Start Capecitabine Chemo next Friday and bisphosphonates - which should have started in June 2009.
There have been huge mistakes, still on going. Had a total review of my file, I have not received letters, Onc offered to send me for a second opinion as I had been let down and felt it might effect my confidence under her care. I declined as I am now getting the treatment and can’t go backwards. Although its been tough getting anyone to listen, I feel lucky that the cancer is still contained in the bones, despite only taking a hormone that wasn’t working for a year.
Had radiotherapy from T7 to L2. Having a port fitted on the 23rd.
I’m pretty angry really but then again, can’t change things so just have to go forward now.