I got the results from the Bone scan and CT scan I had on Friday because I had been getting some pain in my hip and back (have bone secondaries in my pelvis and spine).
The bone scan showed surprisingly little change since my last one in Jan 2008 but CT scan showed 4 pea-sized nodules in my lungs, so my onc wants me to have some radiotherapy and see a surgeon to see if I need anything doing to my pelvis, and then to change from Herceptin to Capcitabine/Lapinatab. I have only been on Herceptin since November last year as I was one of those unusual people whose status changed from Her2- to Her2+. I had high hopes that Herceptin would keep me stable for some time, it seems to do so well for other people and now I feel like I am doomed to be on chemo for the rest of my days, I feel so angry, sad and scared. Has anyone else been on this chemo combo? I only finshed Taxotere in March, then I had a mastecomy at Easter and rads in June so it’s only fairly recently that I feel my energy levels have returned to normal so I can’t bear to think that in a short while I will be back to dealing with the tiredness etc that chemo brings, and that this time it will probably be for good. I feel like I am racing through all the treatment options and soon there will be nothing left. I had only set myself 2 goals for this year, one to have a week in Cyprus in the October half-term and secondly to have reconstruction around Christmas/January (this being because my Onc and Plastic Surgeon said I needed a minimum 6 months after rads before they would consider the op). At the moment I can’t see either of these being possible. I desperately want a set of boobs - i don’t know if it’s pure vanity or just about re-gainng what has been taken from me - but I am sure this will be out of the question with my new lungs diagnosis. I know there are others on this forum worse off than me who still manage wit and humour (yes Debs i’m thinking of you) but today I am 100% p@@sed off!
Good morning BoneyL, I am so sorry that you are having such a rotten time. It is not easy when you get results like this. I am not on the combination of the drugs you are going to have. But I am on Capacitabine and although there are side effects, I have found it to be a much “kinder” form of chemo than another type I have been on. You have had such a lot to deal with this year. It is a lot to take in and that is why these forums are so good, coz you can voice your worries and fears quite freely. We have had similar things to deal with and I find it good to share these feelings with people who can understand just what you are going through. Take care, love Val (Scottishlass)
I am sorry you have had this setback. I am waiting for a CT scan to check whether I am responding to hormone treatent and I am anxious because you just want good news and it must be devestating when you dont get it.
I dont think how you feel about your boobs is vanity at all and I can understand the anger that you are feeling. You want to have the same chance as other people have to be as normal as possible. I havent had to go through the surgery that you have had to deal with but I have lost the mobility I had and I know what it is like to lose something that is part of you and I know what it feels like to just want it back because you just dont feel like you anymore.
I know you are feeling low now but it doesnt sound like you know for sure that reconstruction is out of the question. I will keep my fingers crossed for you anyway.
Can anyone who have had breast cancer ask for a bone scan? eben if my lymph nodes were clear? was taking tamoxifen for 6 weeks and couldnt candle it any more because of joint pain, mostly groin and legs and lower back, also it made me deppressed, and insomnia, i ached all over( i alredy hase osteoartiritis of the spine) this little tablet made me feel so immobile that i stopped walking and going to the shops became a nightmare. I have not decided this likely as i have looked at the riks and reaccurance odds seriously, it was not a totaly gurantee but something like 1/12 percent. Radiation was more good and made more difference.Si i have stopped for 5 days and now the real me is returning. I have already had a good sleeep( not straiht away
I will attend my planning meeting for rads on Tues, do i get a bone scan or do i have to ask?
also what shall i tell my oncologist about stopping tax, is thre anything else for pre-menaposal women?
Hi Linda
So sorry you’ve not had good results from your scan and you may need chemo. I can imagine how pi**ed off you must be. Hopefully chemo won’t be the next option and rads will sort out the little uggers (as Debs would say). Fingers crossed and maybe go and have a big glass of vino tonight to forget some of this cr@p.
Nicky x
So sorry to hear of your disappointing scan results. I was on capecitabine for nearly a year (17 cycles) and as Val says, it is for many people one of the “kinder” chemos. I carried on working 4 days a week throughout and even managed to get travel insurance whilst I was taking it, so went on a cruise. My energy levels weren’t too bad at all. There are probably several other threads about the side effects (it’s also known as xeloda) - the main one is usually sore hands and feet (very dry and may blister/crack etc - though using masses of lotion very regularly helps a lot).
Really hope that you can get away somewhere (even if it isn’t Cyprus) and that they still say yes to the recon. I think one of the hardest things I find with a secondary dx is how it makes planning (and hoping) for anything so difficult. So many disappointments when things you want to do, you can’t because of treatments etc. - and wondering whether you ever will be able to do them. Hopefully you will.
Take care Kay xx
PS Shenay - suggest you start a new thread in one of the other sections (not the secondary forum bit) where you might get more of a response. Obviously bone scans for people with bone mets are fairly routine. I have liver mets though and have never had a bone scan - but then my primary dx was 7 years ago and things might have changed.
Hi Linda,
sorry to hear of your disappointing scan results it always knocks us for 6 when the news is sh!t. I have done capecitabine and I was fine on it for nearly 2 years had problems with my feet but Ian solved this by rubbing them every night with e45 he still does and my feet are lovely and soft. Lapatinib has a good record for those who are er plus so fingers crossed it works well for you.
This is such a rotten disease and so hard for us all to deal with all we can do is be there for each other.
Take care and thinking of you.
Love Debsxxx
I am also due a scan on Monday and getting anxious about the results, although I do set myself up for them to tell me that it isn’t working because i really haven’t managed anything for that long - pretty much average but we always really want more eh.
I have triple negative breast cancer and have been on chemo constantly since feb 2006. What I would say is that they really are all so different that you will totally different on some than others. Taxotere wasn’t that great for me, Capcitabine or Xeloda wasn’t too bad and I’m now on Carboplatin and Gemzitibine (sorry the spelling will be rubbish but you know what I mean). Funnily enough even though I am now on an 21 day cycle where i get both chemos on day 1 and the gemzitibine only on day 8 it really is the easiest chemo for me even although it is a combination one and I thought I’d be floored.
Hope this makes you feel a wee bit less anxious and I hope that it won’t be anything like your other chemo. All I can say is that mine have all been very different,
Thank you all for your replies, it really does help to hear that Capcitabine hasn’t been too bad for all you that have had it. My Oncologist said it wouldn’t be too bad as I “sailed through Taxotere” but I just thought, if that’s what you call sailing through Tax, i’d hate to know what having a tough time feels like! But having heard your experiences, maybe it won’t be so bad so I feel a lot better now I’ve got things off my chest, so to speak (if only I had one!) so thank you all for that.
Bluejules and diane1w - I do hope you get good scan results and will be keeping my fingers crossed for you.
Hi Linda, not on lapatinib but I’m on the chemo…it’s my first chemo, been on it since Spring 2008…no days in bed, feel really well and I have no active cancer…I hope it works REALLY well for you…x
So sorry to hear this news Linda. I remember when my onc thought I had a spread in my lesser omentum - I’m sure (altho i may be wrong - my memory is dreadful) that he was recommending continuing with herceptin and the chemo that you are going on. As i say maybe this is wrong - but maybe you could check this out.
Hi Linda, About the chemo cappacitabine. I had a larger dose the first time I had it and developed severe “foot and hand syndrome”. I hope you don’t but I discovered I was doing things “wrong” the first time I had it and I unknowingly was making the symptoms worse. It was winter time and I kept my feet warm with those boot type slippers you can get…WRONG…you need to keep your feet cool!.. I was massaging cream onto my feet every night with cream, really rubbing the cream in…WRONG…if you massage too much it affects the blood vessels in you hands and feet and can make the problem worse. By all means cover them in cream and LIGHTLY massage your feet (and I wear soft socks to keep the cream from ruining the sheets!) I also take vitamin B12 which some sites recommended. Some people disagree and say it makes no difference but I wanted to give it a go. When my feet were at their worst it was like walking on glass. BUT the next time (2 Years later) I went on the same chemo the Oncologist reduced the dose a little. My feet and hands were much better…but feet SLIGHTLY affected so now I am on exactly HALF the original dose of chemo and my feet and hands are fine ( though the soles of my feet are reather dry, but not at all painful). Hope this doesn’t put you off because the drug has really worked wonders for me. I know this from how I feel but also I have tumour markers in my blood which have gone down from many thousands to 27! Hope it works equally well for you. Let me know how you are doing and if I can help in any other way, just ask. Love Val XX
Interested re vitamin B12 , as my hands and feet are very painful, my specialist nurse recommended vit. B6 , but checking on the net it seems it can make it worse. As usual do not know what to do for the best !!!
Regards
Vit B6 is recommended. During my 2 years on capecitabine I was put on a clinical trial to see whether or not it improved hand/foot syndrome. In my case I didn’t think that it did, so came off the trial, but I know there are some for whom it does seem to work. So it is probably worth a go. Check the dose for any chance of effectiveness - it is quite high, and you can buy the higher dose tabs in most healthfood shops.
My apologies girls, I got the wrong vitamin number and you have it right. I have just checked the packet and it is VITAMIN B6 and I know it as PYRIDOXINE. Sorry that I misled you and thanks for letting me know before I tell anyone else! lOVE vAL x
Thanks for all your replies, I think I wll give Vit B6 a miss. I should be having 4 sessions of radiotherapy starting sometime next week to sort out my hip pain and hopefully stop me limping. I hope I will be able to run again so that I can catch my dog when she steals other dogs balls and runs off with them. My BCN says to go on holiday to Cyprus in the half-term as planned and then to start the Cap/Lab on my return and although I feel a bit vulnerable not starting the treatment for another month, I am pleased that we are free to go on holiday.