Hi Dawn!
So very glad to hear your news! Hope the pain starts to improve very quickly now it seems to have started working.
Lots of love Julie x
Hi Dawn, I am so pleased that you have found some good pain relief at last, after all you have been through you deserve that at least, and great news about the scan results. lots of love Rozxxx
Hi Dawn,
So happy for you. Hope your pain will be sorted soon.
Can I add to your good news? Just got PET scan results and both liver + bone have no activity at all!!! ONLY 3 hot spots (1 on neck + 2 in underarm area) need further attention. Max 4 weeks of Rads will sort all of them out.
Take care
xx
Hello m1yu, What great news for you. I am so pleased that the results were better than you thought they might be. Good luck with the rads and I hope they completely zap the b*gg*rs. Love Val
Hi m1yu thats great news on your PET scan really happy for u xx
Hi m1yu,
Isnāt it great to be able to share good news. Iām glad for you that it was good - letās hope the rads well & truly finishes them off.
Dawn
xx
Had results of mriās today.
Mets in spine are unchanged and stable. Nothing new. Brain mri clear.
Good news although feel nothing (as usual).
I do recognise it is good news and know I am blessed compared to others.
Julie x
Great to hear your good news Julie. Well done. Love Val
Hi Julie,
Another one with good news - and am pleased for you. I know what you mean about feel nothing. I found with my scans I was prepared for bad news - with some sort of resignation. When I heard yesterday that it was not bad news at all I am not sure what my feelings were. I suppose we all know the seriousness of this disease we have and bar a miracle we still have metastatic bc. What are we like LOL.
Dawn
xx
Hi ladies - what great news for all three of you 
Iām so pleased and thanks for sharing it with us - what a boost - especially from Dawn who has been dealing with mets for so long - my inspiration! I hope all the continuing medication for either pain or āstabilityā keeps working for all of you (and the rest of us)
Nicky xx
Hi Everyone, delighted to hear all your good news, itās so wonderful when scans come back clear and Iām delighted that the Gabapentin is working for you Dawn. Long may it last. My spine mets donāt seem to be bothering me at all at the moment, so hopefully the bondronat is working.
m1yu, you already know that Iām delighted for you.
Thinking of you all, have a good day. Lots of love, Dianne x x x
Juliet,
Glad to see your news, was thinking about you yesterday and pleased results were positive.It is weird isnāt it, of course weāre glad thereās no progress but the knowledge that weāve still got mets means we donāt āfeel happyā even when we get news that is a relief!
Have a good day now the stress of waiting is over, love Julie x
Hi
I have been lurking around for a while reading this thread. I was diagnosed with bc in aug 2007, then bone mets in April 2010. I am just having a third treatment of radiotherapy. The first in May was to my right shoulder, then in July to my hip and spine, now I am just having another course to my right shoulder again.
It would seem Letrozole is not working and after a bone scan this Friday, I go back to see my consultant at the Freeman NCCC Newcastle, and start on Capecetabin (?sp).
It is all very new and I have been quite down and underpar all the summer with pain. The situation is complicated by marital breakdown after my secondaries diagnosis.
It has been very helpful reading the posts on this thread, and I thought maybe I should join in.
Helen
Welcome Helen, I am sorry that your are having a tough time of it and you too have been diagnosed with bone mets. I am sorry too that you have had to join us.
I have had radiotherapy on 2 or 3 occasions over the past 10 years and I have been on Capecitabine ( I am never sure of exact spellings either!) and found it did help me and is a quite do-able chemotherapy. I have been on Femara since the beginning of the year and I was on Aromasin before this. If I can answer any questions for you about treatments feel free to ask as I look up the site almost every day. I am sorry that you have had the added problem of a marital breakdown. Please join in and feel free to have a moan any time. Val XX
Hi specially to Helen. Sorry to hear you have been having such a rotten time with 2ndary dx and the breakdown of your marriage so soon after the dx. What are you trying to control the pain? I know I have really struggled in this are to control pain and tried a lot of different meds. Am hoping the most recent change is beginning to improve things and hope higher dose will do more. Mine is not hormone driven so I dont know much about those treatments. Are you taken any of the bisphosphonates?
I had a good laugh at my latest report on the scans which goes out to my GP & Macmillan doctor. The observation is made that āBilateral mastectomies and a pacemaker are seen in situā¦ā You may well ask what is so funny in that but I donāt have a pacemaker!!! I do have a portacath high on my left side just below my collarbone - is that where pacemakers would be positioned?
Thanks to all who are contributing to this thread. It is good to keep it live so that others newly diagnosed can find us.
Dawn
xx
Hi Dawn, That made me laugh too. Are you sure that they havenāt sneaked in a pacemaker without you noticing! Really gives one confidence in the powers that be! How is the Gabapentin going with you Dawn? Have you managed to increase it any more yet? My tumour markers are on the rise again but no need to start chemo just yet. Hoping to sneak in a holiday of some sorts before that! My husband goes to get his plaster cast off tomorrow so hoping that his Achillies tendon is healing nowā¦another month without plaster than physiotherapy for himā¦ Hope you are keeping better now that you are on these new painkillers. Love Val
Hi Helen
Iāve had some rads for bone mets at the NCCC Freeman last week, (it hasnāt made any difference yet, but hope it does very soon 'cos just like you the pain is getting me down,(by the way do you know who the Consultant Radiologistās famous brother is?). I didnāt know you could have Rads in the same place twice, thatās interesting to know. I tried Capcetabine recently and found it very doable, just a bit of diahreah and very slight nausea, so hope its the same for you and that it does the trick and heals those bones. Sorry to hear about the marital breakdown, this is a hell of lot to deal with at once. Best of luck with the bone scan.
Hi Dawn, Iāve been on Gaberpentin for a several weeks now, iāve had my dosage uped to 200 mgs x 3 daily but am still getting plenty of pain, what dosage are you on? I donāt get any side effects so Iām thinking of asking my GP to up the dosage some more if possible.
Linda
Hi Linda (BoneyL),
I was on a lower dose of Gabepentin for a year but now I take 600 mg twice a day. My pain specialist doctor said I could have 600mg 3 times a day but I am managing without pain now with just taking it morning and night. I did it slowly over many weeks but I donāt feel any side effects with it and I think it is a marvellous drug. Good luck and let us know how you get on. I am sure the GP will let you increase it like my doctor did. Wishing you pain free days ahead. Love Val
Hi Linda & Val,
I started off on Gabapentin 3 wks ago and as advised am taking it very slowly. I increased it from 3x100 to one extra 100 i.e. 4x100 and the doctor told me today to increase it again by another 100 i.e. now 500 a day. She doesnt mind how I do it so am taking the extra around 4p.m. when I usually notice pain increasing. I am finding I get some periods in the day without pain which is fantastic but not enough yet. At the same time I have reduced the oxycontin from 80mgs twice a day down to 60mgs but am finding some days I need to then top up with oxynorm. I do find the pain issue is very restricting and tends to tie me to the house now. But then we do have our own business and I can be quite involved in the nursery work without physically doing too much.
I think Linda with your 200mgs x 3 a day that there is still scope to increase it according to my mac doc so if it isnt quite doing it for you it is worth asking your GP.
Val I hope when your hubby gets his plaster cast of tomorrow that things are healing well for him My tumour markers donāt really tell much about what is going on in my body - they are very steady around 19-25 ish.
Dawn
xx
Hi Dawn, I am glad that the new drug is working for you too. As for tumour markers mine are currently CEA 72 and CA125 760. But they have been much much higher so it is all relative to the individual. I know my Oncologist has drummed it into me that we cannot go by my markers alone and there are lots of other things to take into considerationā¦ how I am feeling at the time for example. I know that I am not ready for chemo yet but as I said before I see it lurking on the horizonā¦but I am putting that to the back of my mind for the moment. Richard got his plaster cast off today but he was quite surprised that his leg was very weak. His shoe has been made higher but I donāt know why they didnāt do both shoes because it must feel like walking on a stiletto and a flat sandal ( haha)ā¦but suppose the experts know bestā¦ Do keep in touch as love to see how you are doing. Love Val