Changing chemo

I had a CT and MRI when I was diagnosed with widespread secondaries. After the first 2 taxoteres, my next CT scan showed a really good response - but they didn’t do an MRI, and my back is one of my big issues.
After number 4, the MRI showed worse than when I started, and they said the CT was ‘stable’ which when I looked meant a couple of minor lymph glands slightly better, ovaries a bit smaller, and more bits worse - a lesion on the liver which had vanished after number 2 was back to where I started, and lung is worsening. So overall NOT stable is the way it looks to me. They want to leave it another 2 cycles before rescanning and rethinking - but I am a bit worried that that leaves plenty of time to get worse in, and my back really worries me - lots of mets + risk of spinal compression.

Should I go see my onc and ask her to explain this? Pros and cons of waiting - she didn’t really explain her decision.

What might they change me too - I don’t even know how many options there are (did FEC 4 years ago)? Maybe there aren’t many options and they are just holding out on whatever even vaguely works for now?

Is anyone out there who had their chemo changed who can give some advice? The whole new scan thing has really depressed me…


Hi Susie

Can’t really give any specific advice, but having just posted with my own worries just wanted to say hi and sorry you’re feeling depressed and down…the uncertainties of treatment are just ghastly…particularly when scans seem to be getting worse. One school of thinking is certainly to try to get the maximum out of one chemotherpay before moving on to another.

Do you take biophosphanates for your bone mets? Lots of forum users do and I’m sure someone will tell you about them.

Is your cancer sensitrve to hormones or her2+. If not then chemo (apart from biophosphanates) is your only option. Other new chemos would include xeloda (capecitbine), vinorilbine, carbolatin, cisplatin, gemcitibine.

Pinkdove knows a lot about spinal compression. I hope she will see your message.

Hope also you can get an appointment to see your oncologist for more explanation. I’m certainly chasing mine right now.

best wishes


Hi Susie

After reading your post I was going to ask you whether you’re on bisphosphonates as well? I’ve lived with spine mets (in all vertabrae) since September 2004 and ended up with fracturing my spine before my GP referred me to a specialist.

I would ask your consultant whether they think you are at risk of spinal cord compression. It’s not something that is common but with people who have bony involvement there is certainly a risk and the window you have (if you did have it) is quite small and you need to contact the hospital more or less straight away. There are certain signs and symptoms such numbness, problems with going to the toilet, etc but you really should ask you consultant whether they think you are at risk.

They tend not to give you chemo for bones as a stand alone (they certainly don’t in my area and it was only when it went to my liver they put me on chemo)

I only found out about it as I heard an excellent presentation about it from a consultant at Addenbrookes way before my spine mets but it stuck in my mind. When I asked why I hadn’t been told about it they said they didn’t want to freak patients out - sounds similar to not telling people about secondaries! Really annoyed me as I think I’m educated enough and old enough to decide for myself what I do and don’t need to hear.

Good luck


Hi both

I’m on bisphosphonates too - have had 5 injections so far, alongside the chemo, but spine still getting worse. I am at risk for spinal compression, and they have told me the signs to look out for. But they don’ t want to do radio unless something actually happens. Radio to the spine also doesn’t apparently mix with being on taxotere, so it is a case of postpone one for the other.

On chemo as is also in liver, lungs, lymph glands, ovaries, and subcutaneous (!).
Not her2 sensitive, but a bit hormone sensitive. Thanks for those list of chemo names, Jane.

Problem is I keep being too tired to bother chasing them…


Hi Susie

It’s strange how different hospitals have different procedures. I had emergency radiotherapy because of the fracture to my spine (and possible spinal cord compression) but wasn’t on taxotere so can’t comment on that but it certainly alleviated my pain from hardly being able to walk to being able to stand upright again.

I’m also on chemo as it’s in my liver and ER+.

Being in pain is very tiring isn’t it and I never realised how draining it was until it happened to me.

Take care.