thanks in advance for your help. I am currently on zometa and exemestane for my bone and possible lune mets, I sunnyweather on to exemestane in May last year as a scan revealed a couple of new bone mets and small nodules in my lungs. I had been on letrozole. I was scanned in October 11, this showed an increase in size of existing bone mets plus a new one and a small increase in two lung nodules. Onc wanted me to stay on exemestane to give it a chance and scan agin in 3 months.
Had scan last week which shows small increase in size of a bone met, a new bone met and a small increase in 2 lung nodules. I wonder what people’s view is about when to change treatment. The exemestane doesn’t feel to me to have held it. I know this would mean going onto chemotherapy as I have used all my hormonals but at least I would feel I was doing something.
I would be grateful for people’s views and experience, thanks x
Hi fuzzy face
I have only been on one hormonal, Arimidex, which is luckily still working for me so I haven’t had the same situation as you, yet! It does sound like the exemestane isn’t holding your mets at bay as it should but I also presume your onc has faith that it will do its job. In your situation though I’d also be concerned so maybe you need to discuss this with him/her?
Just bumping this up as well so others may be able to help.
Hi fuzzy face
As for treatment cocktails, it seems to me that the Consultants have a lot of treatment combinations up their sleeves that they change according to response,scans and side effects.
My set up sounds similar to yours in that I have bone mets and a small nodule on my lung. I had been on Tablet chemo called Capecitabine for a year plus exemastine and all the usual bone strengthening meds.
Because of the new lung met, yet complete response in my bone mets I am being taken off exemastine and started on IV chemo. Has anybody out there had a lung met and it has then beeen treated successfully?
Hi I had multiple Lung mets at initial Dx in Feb 2011, I had tax and carboplatin with herceptin for 6 cycles, had an almost complete response. Multiple mets , too many to count are now down to one met which is so small its hardly visible on Ct . My onc says I am as good as NED now.Still on Herceptin and Letrozole.
Difficult one here. I guess it comes down to your own gut feeling and faith in your onc. Is s/he expecting that things are just taking a bit of time and are going to improve on the hormonals do you think? Have you got an appointment to discuss coming up?
No personal experience as yet as I’ve had chemo and just started on Tamoxifen for liver, ?lung, bone and lymph mets. Had progression on first chemo, not sure about second and TM’s up at the moment. Have another scan next month. I feel great so hoping I’m one of those people for who TM’s mean very little!
Hi, just wanted to post a reply because I am in a very similar position to you and wanted to share my experience to date. I was diagnosed with vertebral mets (x3) including one which had collapsed in Feb 2011.At the time I had been on Arimidex for 5 years. I had radiotherapy to the 3 mets T3/4/5 and switched to Exsemestane and monthly zometa.I have had 3 monthly MRI scans and essentially monthly tumour markers. In Oct the MRi showed 1 possible 2 small new bone mets with the original areas stable. I had a discussion with onc to discuss options. He was reluctant for me to have chemo because I was so well. Fe discussed changing to faslodex (possibly not now an option), having radiotherapy or doing nothing. At my behest and with his agreement I went instead for a repeat CT…not had one since Feb…since I thought any evidence of metss elsewhers might influence decision.
Infact the way the CT influnced my decicion was by delay in that I had another set of tumour markers ( and several since) which have been stable and CT showed no progression elsewhere. By the next review appt both he and I were convinced to leave exsemestane unchanged. I have a repeat MRI booked for 6 Feb and wait to see what it shows but if it shows only minor progression i will be tempted to have radiotherapy to the areas of progression and (if markers are stable) stay on exsemestane.
There is a new mTOR inhibitor in the pipeline which is showing positive results alongside exsemestane which might be involved in trials in UK later called everolimus which might become a possibility alongside exsemestane at some point.
I guess the aim of all palliative treatments is to slow (and I agree hopefully stop!) progression but you are weighing up quality of life and “using up treatment options” against small amounts of hopefully monitored progrssion. Pam
It is a dilemma, whether to go for hormonals and have relative normality or have a more agressive treatment. I had over a year of trying all the AIs:- exemestane, femara (which ‘worked’ for 6 months, then allowed progression to the liver) then faslodex, single dose - upped to double dose (which allowed progression to lungs)
I was happyish at the time and able to carry on with life as normal, but do wonder if I had been treated more aggressively when it was just in my bones, whether I would have had all the progression + brain mets!
I was moved over to chemo - capecitabine in August and this a very doable chemo! My last scan showed reduction in my liver and lungs, which makes me wish I had ‘changed’ earlier. The first dose I had SES, but have been OK since, carrying on work etc! So not all chemo is as bad as IV, my oncologists wants to move me off capecitabine and I am very reluctant, but he seems to think there are many more treatment options available.
Good Luck with whatever you decide,
Hi guys and thank you so much for all the responses you have summed up my dilemma brilliantly. I am due to see the onc next week, I think part of the problem is I don’t have complete faith in him but I am to scared to change to someone else, better the devil you know. I always need to get my scan results from my GP before I see him as he is selective about what he tells me despite my request for complete honesty.
I had a good response to letrozole 2 years progression free but since going on to extemesane I have developed 2new bone mets, progression in a number of others and had the last 2 scans reports show enlargement in the lung nodules and state that the trend is one of slow progression.
I dread the thought of going back on chemotherapy but wonder if treating it more aggressively at the moment will be delay any more serious progression.
I’m probably not expressing myself very well but I feel like I am damed if I do and damed if I don’t.
Thanks again for taking the time to reply. X
Have you had / thought about getting a second opinion. (Belt and braces and all that…)
Hi, I’m possibly in a similar position too - waiting to find out whether the recommendation will be to move off the hormonal treatments. They seem to be keeping my bone mets stable but I have a chest wall mets area that popped up after a year and a bit on Arimidex and may now be progressing again after 9 months on exemestane (having another scan tomorrow to check that one). I don’t completely trust my onc either, and have already mentioned that I will be getting a second opinion. I think it’s quite valid to seek more than one opinion when treatment changes are suggested as the issues of not wanting things to progress too far before attempting to control them vs quality of life vs not wanting to go through treatments too quickly are quite hard to weigh up.
Wishing you all the best with your treatment decisions,