Hi, I hope you don’t mind a newbie posting but as a family we feel like we are in free fall. Mum’s original BC diagnosis 5 yrs ago. 2 yrs ago bone mets found. Monthly Zometa infusions and Letrosol worked well. 4 months ago lung mets found, and while said to be v small (2mm), Letrosol changed to Exemestane. Now lungs not functioning, tumor taking over 90% of bronchioles and she’s unable to do anything. We fought for onc to reassess but told to give it time to work. Laser therapy finally given to reduce bronchiole blockages, but no-one is talking about the way ahead. Onc surprised to hear that resp surgeon has needed to operate. Resp dept not saying what was done during op.
Mum wants off exemestane and back onto Letrosole or another.
Does anyone know of any effective options to help keep this at bay so windpipe doesn’t close over again? Soz for the gibberish style ramble but we seem to be going in circles getting no info or advice from anywhere.
Hi
Sorry to hear this and I’m not sure how much help I’ll be. I would think that as lung mets were found that Letrozole had stopped working for your Mum therefore they changed the drug she was on. I also would think they (oncologists) wouldn’t put her back onto it as it would no longer be effective, this does seem to happen with hormone treatments as well as chemo etc. If you are not happy with any decisions being made by her current team she could ask for a second opinion. Also chemo could be an option as you don’t say if she has had this before. There are many ladies on here with different types of mets so may be able to help with what treatment worked for them. I hope you get some answers soon, either from here or from your Mum’s Drs and that she improves.
Nicky
Hi family ties, welcome to the forums where I am sure you will continue to receive lots of support and information from your fellow users.
In addition, please feel free to call our helpline for support and information and also a ‘listening ear’ at this time of worry on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2.
Best wishes
Lucy
It sounds as though your mum is going through a really rough time and I am not surprised she wants to come off the exemestane.
I was on it briefly after arimidex failed for me, but came off it after three months when it was clear that my cancer was continuing to grow.
It is true that hormonal treatment such as exemestane usually take a couple of months before their effects begin to be seen. But I seem to remember from my time on exemestane that it only is effective for about a third of women who have had previous hormone treatment. If it were me, I would be asking about chemo for the lung mets so that you can get on top of them and hopefully shrink them back.
Deirdre
Hi girls,
Huge thanks to all of you for your advice. Onc team seem today to be taking on board the speed of change in the tumors and will be starting 2 forms of chemo this week with radiotherpay - tho not sure if this is alongside chemo or afterwards. Feels better to know that care plan is altered. Will wait and see. Love and thanks again x