Posted on behalf of Liz

Hi there everyone. I was diagnosed with secondary mets. in both lungs in Feb, have had 5x courses of EC chemo which have reduced the size of some tumours. Am now on Arimidex 3rd month and doing OK BUT I do have a persistent cough, fairly non-productive and have been prescribed anti histamines and ventolin for the wheezes. I don’t take them every day, but find a lot of talking/laughing sets me off coughing!!! I should also say have always had allergies to dogs/cats/pollen dust etc which i always managed well without coughing. Am I stupid to think that it’s a bit early for coughing???
Also afraid didn’t find breast care nurse very helpful with secodary diagnosis, i was moved from first chest consultant and macmillan specialist lung nurse, to BC consultant who is great but feel i want to talk about maintainig state of my breathing with someone now.
Thanks for listening/reading this.

Hi Lizzie, I don’t have lung mets, I have bone mets, but I was on Arimidex for 2 years and 7 months and whilst on Arimidex I also had a lot of coughing…Take Care…x

Hi Lizzie

I was also diagnosed with mets in both lungs earlier this year (April). I managed 4 lots of FEC chemo and am now on arimidex. My chemo also gave a good reduction in tumour size. When my cough was at its worst, before chemo, I was prescribed Codeine Phosphate linctus and have a stanby prescription for Oramorph. May be worth talking to your consultant about??
I find now ,after having had a break from needing the linctus ( only a week or two), I am taking it again as and when needed. I am sure the cold and damp has an effect too, not sure if its just the colder air or the fact that we automatically hurry about to keep warm. I was concerned with the returning cough but last scan showed no change since chemo. Hopefully your next scan will be good too.Talking and laughing are definitely my triggers for coughing.
Does your breast care unit have a Macmillan Nurse you could talk to? If not you could try contacting Macmillan direct, or accessing help through your GP or local hospice. ( I know hospice is a scary thought but a lot have a wide range of support available and can put you in touch with a Macmillan nurse or similar for advice and general support.)

Not sure how much this helps but we seem to be in a similar place so would be pleased to know how things are going and maybe share our thoughts and concerns.

Thinking of you


Hi Lizzie

Me again, I may have already replied if you are same Lizzie who previously posted under Lizandrob, if you are sorry to duplicate the info. Just realised how similar the histories were.

If you are having problems posting and would prefer direct email can Lucy(BCC faclitator) send me a private message with your email address and I will reply.

Lucy (BCC facilitator) - not sure how this works but if it helps, and you can, please pass on my email address to Lizzie.


Hi Jayelle

You can send you email address to Lizzie by using the private messaging system, just type her username lizandrob into the ‘Send a private message to’ box and then continue as normal, only you, Lizzie and the moderator can view the pm. The system is case sensitive by the way.

Best wishes

Hi Jayelle,
Yes I am the same as lizandrob, You are so full of information, and we sound to be in the same sort of place.
I feel a bit of hypochondriac going to my GP but will make the effort now. Yes we do have Macmillan nurses, but they seem to have quite clear roles/responsibilities ie breast or lungs ( and others I haven’t yet come across thankfully). I’m currently under Breast care regime/nurse but only spoken to her twice to chase bone scan results, I feel I want to talk to the lung nurse again really.I still have her number so I’ll try today. Thanks so much for your reply. I do seem to spend a lot of time scrolling down the “threads” ( learned that term when I wrongly posted a message yesterday, thanks again to Lucy!) looking for someone who has had/got similar diagnosis or mets. Actually reading about other peoples’ experiences, can be quite depressing.I tried the Chit - Chat and fun forum for a bit of relief!
I’d be pleased to get your email address, hope your cats are well, my black and white lodger is on the bed…AGAIN!
Best wishes

Hi Belinda,
thanks for you comments about Arimidex,I don’t know these side effects are great aren’t they?
Just got the cough remedy from Jayelle so will try that.
I didn’t see much activity on the chat session last night , but thanks for your comments, good luck to you

Hi Liz

Have sent you a private message with my email.(You have to be signed in to read it, I think) Hope you get to talk to the Lung Nurse today. I also started with the lung nurses as they initially thought it could be a new primary cancer, but was passed back to the breast care team when it was confirmed as secondaries. It can get very confusing at times especially when everything is so new and scary.

Hope you have a successful day,


Hi Jayelle,
Well I’m amazed that we have had so similar experiences, my route exactly same as yours, but I got a bit stroppy with the lung guy who thought I was a clear primary! And he poked and prodded me to prove it ! Lung biopsy not nice, and bronchoscopy YUK but he was WRONG!
I’m not keen to go back but do want to keep the breathing process as good as I can.
Many thanks for reply,

Lizzie, sorry about your coughing and diag -

I don’t think you need to be worried about being a hypochondriac and going to see the doc - most of them entered the profess because they wanted to help people who are ill, I know from point of view of my brother, grandfather and close mate, all doctors - they are more than happy to help with the smaller symptoms as well as the larger picture…

Does sitting in a room with a boiling kettle, top off (the kettle’s ;-), help at all? (non medic-suggestion) Is v helpful for my kids’ asthma / heavy cold/coughs…

My tabby is keeping an eye on me next to keyboard, luckily I’m not v allergic to her… she has been known to make cinema bookings all by herself with keyboard activity … good luck :slight_smile:

Hi Caro, Thanks for that, actually if I have a gasping attack I take a shower, so boiling kettle similar.
Thankyou also for reassurance about GPs I just thought going to see gp with a cough when I have cancer in lungs was a bit…" well it goes with the territory". My GP practice have been great, just me trying to cope.
I miss my tabby who was 16 when she died, the last of a long line of feline comfort! But I have visiting cats which is nice, as long as I remember to put them out at bedtime!