Just wondering how many onc. use tumour markers and share the results with patients. When I was first diagnosed with mets in my liver, lungs and bones in January 2011 the tumour markers were 1200 and I was in a lot of pain.
I was put on Taxol and Avastin which reduced them to 630 before they started to go up again. I then went on to Eribulin which bought them down to 330 before they went up again to 360. By then I could not walk and a scan showed a spinal collapse of the third vertebrae. I then had five sessions of radio therapy to prevent permanent paralysis and a month in hospital.
I was so weak I came of all chemo for two months and gradually began to feel really well as the side effects of the chemo diminished. I can now walk with a frame and generally feel quite well apart from some discomfort caused by water retention which hopefully a diuretic will help alleviate.
My onc then decided I should start hormone injections. After the first injection the tumour markers showed 1992 which was a shock but he said it was inevitable given I had been off chemo for two months and was just a sign that the cancer was active again not that the tumours has regrown. So even more shocked to hear this morning following the second injection that the markers are now 7900.
Again I feel reasonable well, just a bit nauseous and my mobility is not as good as last week. Its hard to remain positive and at the moment I feel like I need a good old cry.
Just go ahead and have a good old cry, it certainly lets out my frustrations! Has your oncologist suggested doing a CT to check things out, it sounds as if you need to know what’s going on!
My oncologist doesn’t do tumour markers, many on here have similar. I have to rely on CT scans to check for progression (and there usually is some!)
Take care and try and stay strong, I know that’s easier said than done when you are worried and in pain!
I haven’t had markers done and know from others that they are not always a reliable indicator. A CT scan sounds like a good idea so you know what you are dealing with.
On the positive side, the fact that you are feeling well is good. Sometimes I wonder if we get overwhelmed by numbers and scans etc and that stops us checking out how things are for us on a day to day basis.
My onc is fairly reliant on tumour markers - mine were always around 20 with ‘just’ bone mets until last April when they jumped to 59, then to 300 in July, liver mets dx’ed in August and were then 1200 at the beginning of September. It is a shock when there’s a big jump but like you I was feeling pretty well regardless of the numbers really - the only time I’ve ever felt really ill with any of this was right at the very beginning three years ago when my bone mets hadn’t been treated and my TMs were 90. Go figure!!
I think I would go along with what Laurie and Nicky say and try not to dwell too much on the numbers, concentrate on the fact that you’re feeling good. A CT or MRI would seem like a good idea though just to check what’s going on. But yes, a good cry always helps and I hope your mobility problems improve again very soon.
I’m due to have my third Taxotere next week and I almost don’t want to ask what my markers are in case I’m disappointed.
I really appreciate them. It is so helpful to hear from people who really know how all this feels and are still positive.
I had a CT scan and a bone scan last week. The CT scan showed a few spots on the liver but not as bad as they were but it is the bones where the cancer is most active.
Strangely I have had a bit of sore left hip and was worried about that but the scan showed nothing sinister on that one but apparently the right hip, which does not hurt, showed a tumour! There is also a new spot in my skull.
My husband and I are fed up with speculating about what it all means. Its too exhausting. I just think the only thing to do is keep as positive as possible, laugh when we can and cry together when we need to.
I have liver and bone mets, too. Because I have private medical insurance through work, I am monitored by PET scan (normally CT and MRI will be enough, but PET can usually catch the mets a bit earlier). I also require Tumour Markers to be tested when they take bloods, but mine has never gone above 100.
Just a few points I’d like to add:
Onc usually say that you won’t see the effects of hormonal treatment until after 3 to 6 months. But I say be alert to any signs that hormonal treatment isn’t working.
I don’t know how truth this is. But my onc told me that liver mets doesn’t usually respond very well to hormonal treatment. So when my liver mets was discovered, Tamoxifen was abandoned, even though I only had it for less than 4 months and I was put straight back on chemo.
My liver mets disappeared after 6 cycles of FEC and it has been stable ever since, but my bone and lymph nodes have been active on and off. I had rads twice and is now on my 3rd chemo.
We all know how useless speculating is, but we can’t help it sometimes, specially when symptoms are there. It just feels good to have a good cry on a strong shoulder sometimes and to unload.