Hi all,
Just canvassing opinions/experiences from all you ladies who have bone mets.
I was originally diagnosed with bone mets in a couple of places on my spine, patch on sternum and couple of bits on right ribs in July 07 at same time as primary diagnosis. Had chemo, left mx, anc and rads. Initially on tamoxifen as 100% ER & PR +, but swopped to zoladex and arimidex last Oct. Also started Zometa IV last Oct as have signs of osteoporosis from chemo. Bone scan Jan 08 and July 08 showed improvements and sternum bit and one of spine parts had vanished but this was before I started the Zometa and hormone therapy so must have been due to the chemo. Had first bone scan since then last week so that’s the best part of a year and got results at 3 month check up today.
The spine one and the right ribs showed signs of improvement - yeah!! - but a small patch has appeared on a rib on left side. The docs do not appear unduly concerned and overall it appears my treatment is working and basically keeping it stable. I came away quite happy in the overall scheme of things but my OH thinks it’s not good that there is this new patch. I’m working on the basis that they would have changed medication if there was a need or they were worried at this stage.
So I suppose I’m just seeing if anyone else has been in a similar situation and had one bit of bone mets improve but at the same time have another lot appear in another area. And should I be concerned or have asked other questions ? Otherwise, apart from the usual nightmare SEs like hot sweats, joint ache, fatigue, blah, blah and were it not for the cancer, I feel fine !!
Thanks in advance !
Liz
Hi Liz,
my experience might help so here goes :). When my bone mets were dx in 2002 they were quite extensive - spread to skull, ribs, collarbone, all areas of spine and left pelvis/hip. I also had a lot of lymph node activity in my neck, shoulder & chest. Because I had a holiday booked the following week, and then it was Christmas/New Year my treatment was delayed until after the new year. Then I went on pamidronate (a different bone drug to zometa). I had another bone scan after the 3rd treatment and like you some areas were already showing a little improvement but it had spread further to my right pelvis & hip. The onc could not say if that further spread was during the gap between diagnosis & starting the drug, or in the period I was on the bone drug. He felt the next scan would give a better picture which it did, and the mets in my skull no longer show on bone scans, nor the rib & collar bone ones.
xx
If I read your post right you were not on a bone drug at the time the bone mets were diagnosed but started it some months later? So I don’t know if this helps or not.
Dawn
Hi Dawn,
Thanks for replying.
My bone mets were diagnosed July 07 but I didn’t start the Zometa til Oct 08 as I had all the chemo etc,etc to go through and I think they wanted to see how I got through all that. I also think they put me onto it when I swopped to Arimidex and had the DEXA scan showing osteoporosis - kill 2 birds as it were.
From what I can gather yesterday, the new bit on my left rib has appeared since I’ve been on the Zometa and Arimidex but at the same time the spine and right ribs hot spots have improved - it just seems a bit illogical that it works on one bit but doesn’t stop another area appearing. Suppose that’s the unpredictability of the disease ! I’m just hanging onto the fact that the docs don’t appear too concerned and the new area is small and on the same side as mx so not far to travel but it is niggling a bit. My OH is deffo worried about it and also the fact that they only scan for other spread if I report a problem which may be too late. I may think about ringing bcn next week and run it by her - even if it’s only to calm OH !!!
Thanks again, Liz
Whoops this should be in living with secondary cancer. Please can someone move it for me or tell me how to do that (in non-technical terms) ? Thanks
Dear Liz,
I have moved your topic into the Living with Secondary Breast Cancer section as requested.
Kindest regards
Janet
Facilitator
Thanks Janet - I’ll pay more attention next time !!
Hi Liz
I was diagnosed with bone mets last summer - hip, spine and shoulder. Am HER+ so was straightaway put on chemo and herceptin and pamidronate, and given radiotherapy to bits affected.
A recent bone scan (May this year) showed healing in the areas mentioned above, but also a new area of activity elsewhere in the spine. Like your OH, me and mine were concerned that this meant that my treatment wasn’t working, but when I saw my onc he didn’t want to take me off the herceptin as he felt it WAS working for me, and said that bone disease is a funny thing with a bit of a mind of its own, so the fact that I’d got a new patch on the spine didn’t mean that the treatment wasn’t working generally - I still (touch wood) don’t have spread to organs.
Alison x
Thanks Alison - good to hear I’m not alone in finding this a bit odd even though I know it’s the nature of the disease. I’m also working on the basis the zometa must be doing something as for a couple of days after the drip I get really achy joints, more so than the normal ones from the hormone stuff and the onc’s registrar said that would sound right.
And I hang onto the fact that if it can be kept to the bones as long as poss and if you have to have secondaries, it’s the ‘best’ type of secondaries to have according to my surgeon and onc !
Liz x
Hi Liz
Yes, I too have decided I’m ‘lucky’ (!) to have bone secondaries, knowing full well that it could be a whole lot worse. I hang on to that thought as well when I’m generally pissed off at having secondaries at all.
I had a hip replacement operation three weeks ago (aged 43 - much the youngest on the ward), having been on and off crutches for about 10 months (since secondary dx) and at least 6 months of hip and leg pain before that, so it’s been a bit of a long haul. Can’t imagine ever being able to sit cross legged on the floor again. Touching my toes would be nice too! Still I’d had a good four and a half years clear since primary dx, which I know is a lot longer than you got. It’s enough of a blow to get primary dx without having the bombshell of secondaries at the same time.
Alison x
Hi all,
I too had 4 clear years and have now been diagnosed with bone mets. I was pretty annoyed at first, but like many others feel it could be a whole lot worse. Just had my second Zometa, and was so bad after the last one…please tell me it gets better!! Or at least not as bad each time.
Caramelbunny x
Hi Caramelbunny
I also had nearly the ‘magic’ 5 years between primary and secondary (bone) dx’s. In fact my onc had dismissed me after my last appointment with her - however she’s now stuck with me (and me with her) so a little bit premature on her part! When I started pamidronate last year I was also having chemo at the same time. The first one was the worst and I didn’t have the same extra side effects after that. I can’t say exactly which bit caused which symptom but I certainly didn’t have any problems with Pam. once I’d finished chemo and had it on it’s own. I hope you feel OK this time and any aches sort themselves out.
Nicky x
Caramelbunny,
Yes the Zometa does get better ! After the first one I got flu like symptoms but had been told to drink plenty of water and have a couple of paracetamol and I was fine - not had those symptoms since. What I do find is that the night after the drip and the following couple of nights, the aches in the joints and muscles are much worse It then seems to settle down until a couple of days before my next one. I’ve started having 2 paracetamol before I go to bed as I’m waking up in the night with joint and muscle pain and it’s been better. It’s now the hot sweats that are waking me up god knows how many times a night but that’s the hormone drugs !! I also get a touch of heartburn/acid reflux with it and have slippery elm tablets from the herbalists to chew when needed.
Alison (and I know the rest of you as well) - I feel quite feeble moaning about my few aches when compared to yours !
Liz x
hi everyone
havnt posted on here for ages, know nicky from other posts, i too have secondaries along spine, ribs, and i think thorax, i havnt seen onc since jan, but am due in a few weeks.
do any of you, have your markers checked, my lymphodema nurse was asking me, and i havnt as yet. i have had a few bone scans and last one showed slight improvement, so i too take it the chemo and now tamoxifen are doing there job. how often do you all have a bone scan?
i have been feeling quite rough last few days, fatigue, deppression and pain, and of course anxious, i have a celebration party in a few days, so im hoping to feel better. i organised to celebrate a year in recovery, but wasnt expecting to feel like ive felt this week, hope its just a blitz
i am trying to diet and increase excercise at moment and was feeling great, now wham im feeling rough again, not easy to forget this disease is it?
take care x
I don’t have markers as far as I’m aware. They do blood tests once every 3 months because I’m on zometa. This last bone scan was my first for a year and it will probably be annually unless bloods show anything different or I moan that there’s some pain ! I too have phases of feeling tired and down etc for what I think is no reason at all - probably connected at the mo to it being just short of 2 yrs for me. Plus my mum is having tests as she has swelling and lumpy bits and she is 7 yrs down the line and my OH is now having tests to rule out throat/gullet cancer after another bout of tonsilitis - these are far worse for my emotions than my secondaries ! I’ve just started taking CoQ10 as they’re supposed to help with energy,hot flushes and memory (chemo brain) so we’ll see !
hi lizcat
sorry you have so many other things to deal with at the moment, but at least the family are being checked out and not ignored, but it is very worrying for you, so be extra kind to yourself. i will perhaps ask about taking the tabs you are talking about.
hope everything turns out ok with familyx