What tests and scans used to diagnose breast cancer mets?

Hi Ochno - Hope treatment is going well for you. I've been generally OK except for the fatigue which they say is probably due to the low haemoglobin.
I had my CT scan last Sunday at 6pm (impressed with the NHS for that!) - hopefully getting results at Oncologist appt next Tuesday.

My haemoglobin has got so low that they are delaying my cycle 4 chemo (which was due tomorrow) and giving me a blood transfusion instead. If bloods are OK by next Monday then it will just be a one week delay. They are also reducing the strength of the Gem/Carbo to see if the haemoglobin recovers better on future chemos. Hope it's still works as well as the full dose.

Not sure if your tumour markers score is the same as the NHS one? My CA15-3 tumour markers were 83 on diagnosis in April; up to 116 in June before first chemo; now back down to 72 in July so hopefully going in the right direction (but way higher than yours!). I think when I asked the Macmillan nurse about the markers she said she had seen people with a score of several hundred, so hopefully we're not too high.

We had a few days away on the south coast last week which was lovely, and planning a few days in the West Country in early September (between all the hospital appointments!).

Hope all is well with you.

Hi there, whoever knew NHS worked weekends, impressive indeed!

I’m with you on the fatigue, some days I don’t even bother getting dressed.  I have one oncologist telling me it’s just a result of treatment, the other that I’m anaemic.  I guess a combo of both.  Not been so bad they’ve had to intervene.  I hope your transfusion sets you up in time for your next treatment.  

I’ve been offered dose reduction, more due to neuropathy than anything else.  I plan to keep to full dose until next scan if I can.  It’s definitely taking me longer to feel human after each infusion now.  Takes a full week when I’m on my week off to regain strength.  Told non cumulative, I take that with a large grain of salt! 

Glad you had and are planning some lovely times away.  Makes such a difference x

Hi Ochno - I had my blood transfusion last week and it has definitely helped. I can walk further now without getting so tired.
I saw the oncologist on Tuesday for CT scan results - he says I've had a good response to the chemo so far - soft tissue tumours have shrunk by 35% and bone tumours are shrinking too. (However, this has left a hollow in one of the vertebrae so he said be careful not to strain it too much. Hope it doesn't collapse).
I'll be carrying on with the Gem-Carbo at 80% strength to reduce the loss of haemoglobin - he said the reduced dose was better than having to postpone treatments for transfusions. I hope it still works and is kinder to my blood. Next CT scan will be after cycle 6 in November to see if it is still responding well.
My next chemo is tomorrow - cycle 4 week 1.
Hope all is well with you.

Hi there, I’m so so delighted you’ve had a good response x That’ll be such a weight off your mind. Be gentle with your spine, no breakdancing or the like.  Most mine ever subjected to is a little gentle yoga, okay lying down pretending I’m doing yoga whilst 2 small dogs cuddle in.

I can’t believe we’re mirroring so closely.   I had bloods, oncologist then chemo scheduled today.   Cycle 5, first infusion.   Very anaemic and needed a transfusion.  I was still there at 7pm…phew!  They did the chemo then the transfusion, what a long long day!  Fell asleep and big snoring during transfusion.  They’ve also reduced me to 80% dose.  

All being well I finish cycle 6 on 18th September then they’ll do another CT scan.  She didn’t seem too concerned re tumour markers having gone up, said it wasn’t a huge increase.

Here’s to continued progress!   I shall toast us both with some sparkling water x

Hi Ochno - how are you getting on ? I'm due for cycle 5 next Thursday. My cycle 4 was at 80% dose but not sure I noticed much difference - perhaps the transfusion the previous week had helped. I definitely feel as though its taking me progressively longer to get back to 'near-normal' after each chemo. This time it was about a week after the Gem-Carbo before I got over the mild nausea & general tiredness. Still it's a lot better than 4 months ago - at least I don't need any pain killers at the moment.

We went away to the West Country for a couple of nights earlier this week - the weather was good and it was lovely to get away from all the hospital appointments !

Hope you are well and that the chemo is still OK for you. x

Hi there, I was just thinking about you x. 

I’ve had 2 doses at 80% now, first no difference but did have transfusion same day.  It’s a lot for old body to deal with.  The 2nd dose was much better.   2 days of steroid high as usual then the dreaded crash but luckily only lasted one day.   I’ve been fine since.  As you say mild nausea and tiredness but nowhere near as bad as when I was anaemic.  That was awful,  Anaemia sitting just below normal, I shall keep a beady eye on it, I’m not going there again regardless of what onco says.    6th cycle starts Wednesday then dreaded scan.

 I’m taking myself off to Rhodes after cycle 6 regardless of CT result.  I’m so scunnered that my life revolves around all this.  Also booked a couple of days in Paris in October.  So glad you managed a breakaway, I think we so deserve it!  

Went for a wee beach lunch this week.  First time I’ve fancied a drink for ages, a little chilled beer went down very nicely.  Feel like a rebel this week!

Hi Ochno - I think you should have now finished your last Gem-Carbo chemo - hope it went well and you are not feeling too bad. Hope you are looking forward to your Rhodes holiday - it sounds lovely after all the hospital appts this summer.
Have they said what will happen next for you, and when ?

Hi there, plans gone slightly awry.   Been feeling ill since infusion last Wednesday.   My wee body telling me no way can I cope with another.   Tried calling chemo department to discuss or cancel, just ringing out!   Tried to have my interpreter go in personally but they wouldn’t even speak to her.  She had all my paperwork and permission, data protection!    Well I opted for my own protection and didn’t go in.  Couldn’t even cancel as no one answering phones even emergency number.   So I’ve done half cycle 6.  Back to see onco on the 2nd of October.  Standin one last week was an absolute bitch.  Tried to tell me my CT would not be until 3 months since last one.  Had a bit of a heated discussion where I held my ground saying I’d agreed to this treatment based on 3 cycle scan gaps.  I just keep repeating it until she gave me request paperwork.  Suffice to say it’s not even scheduled yet.   So frustrating.  She made chemo appointment for this week, didn’t book my blood draw appointment and got blood request wrong!  No confidence at all.  My white blood count is tanked, my anaemia heading in same direction and liver not happy.   Time for a rethink or second opinion.     I’ll consider it all from Rhodes.    I just about blew a gasket when she said, you triple negative people only get scanned every 3 months.  Such an unempathetic cow!  If I hadn’t already been wired up ready for chemo I’d have walked.  Let’s see what 2nd October brings.   I’m fully prepared not to have chemo. I’m going to document and complain.

Hi Ochno - so sorry to hear about your troubles with the last round of chemo. It must be so frustrating when you can't even get in touch with them, and then the temp oncologist was so unpleasant. And the last thing we need to hear is that TNBCs get a different class of treatment :-(
Hope you are recovering and will be fit to enjoy the Rhodes trip.

I've just had cycle 5 - the Gem/Carbo on day 1 seemed OK for the first couple of days but then seemed to hit me really badly - I just felt ill and tired for most of the rest of the week which made me feel miserable, though it improved a bit yesterday.
Today I've done day 8 (Gem only) which hopefully won't affect me so much.
My haemoglobin is dropping again after each session, so I'm feeling more tired and they told me today that the oncol had not prescribed the Filgrastim white cell booster injections (even though I've had them after the previous day-8 sessions) - so not sure how I'll get on with immunity - not sure whether they forgot to prescribe or whether I really don't need them but I didn't have the energy to argue.

One more cycle to go for me (starting 3rd Oct ).

We're off to the Cotswolds for a couple of days next week - hope I'm feeling up to it.
Thinking of you (in sunny Rhodes!) . x.

It’s all been a bit pants!   But I’m still here to tell the tale so that’s a bonus.  

it sounds like you have your own woes.    It’s a harsh treatment that’s for sure.   Here’s to a decent next round for both of us.   Treatment definitely cumulative!   Cure or kill.   I’ll see onco, hopefully my own one, on 2nd October.  Possibly complete cycle 6 and then wait for scan before I do anymore.  Hoping my bloods improve with time off.  If it’s successful it’s worth continuing, if not then decisions to be made.   Strange you’ve not been described your boosters?  Not had those…yet!   I get the too tired to argue but think I need to stand firm now.   I think sometimes they don’t know what they’re up to.  I’m sure sometimes my face says it all.  

Have fun in the Cotswolds, go for it.   Mask up, I will x You can chill and recover.   I’m definitely on that plane to Rhodes on Monday.   It’s my happy place, we’ve been lots over the years.  Village I’m going to has a very good health centre if I need anything.  

have a lovely time x. Be back in touch in October after next fun factory visit.