Val, have a super time. I think about your original diagnosis, what was it… 12 years ago. And here you are at your daughter’s 30th. Fantastic!
X
Have s great time val xx
Yes my girls were just 6 and 13 when i was first diagnosed with BC and I got bone mets 10 yeras later…that was in 1999. Emma is 30 today and Joanna is 37 now. I never thought I would be around still. I am so grateful and delighted that I saw them grow into the beautiful women they are. Yes I am an OAP now aged 62 and not planning on going anytime soon! This is me back home now. Chemo tablets and nighttime pills to take and the party is now in full swing. I am heading off to bed though and letting the young ones have some space. Have a good weekend girls. Hugs. Val
Gail that’s excellent news and very encouraging for the rest of us.
Val, with regard to your tumour markers rising. Just a thought but have your Docs done a biopsy of your mets recently to see if your receptors have changed? The two Profs at Charing X hospital say it’s very common, and it happened to me. I have gone from being strongly ER+ and Her 2 -, to weakly ER+ and strongly Her2 + now. It’s just that if you have become Her2+ you would need Herceptin, in addition to any other treatment.
I was Her neg. My original tumour was hormone neg but they tested when I had bone mets and it was now slightly hormone pos. I have been on Femara ( other hormone before that) until started chemo again. Tumour markers rising because stopped chemo for 2 months. They were dropping drastically before I had my hip replacement op. Have I misunderstood or should I be asking my Oncologist more Lemongove? I did have a bone biopsy done around 2000…a very unpleasant experience for me at the time…Wouldn’t go through that again unless I was knocked out completely. Val
Scottishlass, I wouldn’t dream of telling you or anyone else what to do. All I do is say what happened to me, repeat the information given to me by the two Profs at my Hospital, and point others to research about this issue (and hope that it might help someone in a similar situation). The only reason I reminded you that receptors can and do change, is because you said that your tumour markers were rising dramatically. I agree that the most likely explanation for that is that you have been without chemo for two months, but, you have been living with secondary BC for many years, and so it is quite possible (even probable) that your receptors would have changed since you were oiginally diagnosed ( because the receptors can change many times). Also, if it was me, I would be curious about why I had experienced progression in my hip while taking chemo (I’m assuming from the fact that you required surgery on your hip that you had progression while on chemo - but forgive me if that is not the case).
I agree that a bone biopsy would be very unpleasant, but is it possible they sent the tissue from your Op to histology for analysis? Alternatively, do you have any chest nodes that can be biopsied (that’s what they did with me, and it didn’t hurt at all).
Val - you don’t look 62, unless you’re using a very old picture for your profile.
Dear all & especially newbies
I’ve just completed 4 cycles of capecitabine & was told in clinic today that latest CT & bone scans showed no further progression. So organs all clear & mets in spine, hips, ribs & femur heads are all stable. So I continue as-is on 2000mg/day for 14 days followed by drug free week plus 3-weekly infusion of Zometa until it stops working for me.
It’s 9 months since I was diagnosed with secondary bone mets at the age of 48 & 4 years since primary dx
I am now pain free with only the odd twinge when I over do it in garden.
I’m working 6 hrs a day with an hour commute each way on London underground.
I’ve done a 3 week trip to New York & Canada with a trip to Venice booked for OH’s 50th birthday at beginning of November.
My main side effects are tiredness towards end of 14 days plus some acid reflux both of which are manageable.
I’m learning to live with the dx mentally. 9 months ago it felt like I had no future but now I have hope that me & the OH can really start tackling our “bucket list”
I know for many ladies living with secondary breast cancer life is a real challenge every day & they have been a real inspiration for me as I lurk on this forum. So this post is aimed at ladies who are newly diagnosed with bone mets. I’ve gone from excruciating pain due to a fractured vertebra & a deep depression to feeling that I can live with this bl**dy disease for many years to come. So have hope.
Ingrid
Good news, Gail. When you say the CT scan is clear, do you mean NED?
Ann x
Hi lovelies , I had a chest x ray last night with onc , he said it wbe fantastic , things have shrunk so just very tiny, also arm reoccurence has s shrunk , I start number 4 xeloda today , I must say haand and foot syndrome hor better on well off. I go on holiday to Australia in 4 weeks , I was a bit disappointed about the reoccurence in my arm pit not being removed, but he said at this stage he would have to take me off chemo for 2 months , a month before and a month after fir healing do he would rather not do that at this stage , so down the line we will review , what do you think ladies ? Xxxx
Lemongrove and Gail. Sent Pm to you both. Val
Pinkylou, that’s wonderful news, and encouraging for the rest of us. I understand how you feel about the lump in your armpit, but think I agree with your doc, that it doesn’t make sense to come off Cap while it’s working so well for you. When I had an Op to try and sort out my seroma (yet again), they couldn’t start Cap for 6 weeks, and I don’t think that has done me any favours. I now have quite a bit of pain in my hip, and suspect I’ve had progression over that period.
Anyway again congratulations - and long may it continue.
Ingrid - Great to hear from you again. I feel exhausted just reading your post. You’ve certainly been busy. I’m thinking about whether to go back to work on a phased return, but will wait a bit longer as my full sick pay has run out and I should qualify for Income Protection in a few weeks, assuming claim is approved. I think if I go back before this comes into payment I’d have to go through the whole claim process again if I go off work again, but if it comes into payment it should kick back in automatically if I’m off again for BC related illness within a year.
Ann - I’m not NED unfortunately, but currently just have primary BC and skin mets, so CT scan just shows no progression anywhere else so far.
Pinkylou - That’s great news on your chest x-ray. As Lemongrove says it makes sense not to take you off Cap for that long just now and hopefully it’ll continue to shrink the arm recurrence.
Lemongrove - hoe Cap works for you and shrinks any progression you’ve had (if that’s what is causing the hip pain)
Val - I’ve replied to your PM
pinkylou - That’s encouraging news. Long may it continue.
Thanks for acknowledging my post Gail. It means a lot 
Mildred , your post is inspirational , makes me feel I can cope with going back to work you abuds very busy person and some of your comments made me really think .
Thank you
jon I hope that Kim had a nice birthday.
Gail , I think I am going to go back to work too,
ann and lemon grove I hope you are getting on better.
Does anyone get a sore mouth , not every day but some days I wake up and just after taste. Blood and my mouth is so sore .
pinkylou - I don’t have a sore mouth but sometimes I can taste blood.
Pinkylou - I don’t have mouth problems but use a mouthwash (usually Dentyl) twice a day. If you need something stronger try Corsodyl, I used that on FEC-T to be on the safe side. Your unit might be able to supply you with it or give you a prescription.
Thanks Ann and Gail , I haven’t had it since Monday now and I have started to make a note in my Diary of when it happens .