Newly diagnosed stage 4 MPE lung secondary to thyroid

[Kelly_G]

Hi,

After some advice or experiences. The story is below but my mum was admitted to hospital under no particular doctor. They found her a lung doctor and we are being given no information, her oncologist hasn’t visited once and the diagnosis she was given at the beginning of the year is now the complete opposite and no one has bothered to explain what she now has it’s like a “you’ve been there done that situation” but she hasn’t and she has no idea what she is dealing with.

My mum (64) had a total thyroidectomy in December last year. No lymph nodes in her neck showed any signs of active cancer and there was only a small cluster found near the muscles in her shoulder which were completely removed.

A scan after surgery showed spreading to her lungs (several small spots under 1cm no active cells). Treatment is Lenvatinib with a hopeful outcome to block them from spreading anything further and potential shrinking / disappearing.

She started this in March this year and has 2weeks on it before developing a cough. Her oncologist took her off it and onto some antibiotics in case she had caught something (cough is apparently not a side effect of the drug). Antibiotics didn’t clear the cough up so she was prescribed a suppressant which helps. She then developed shortness of breath and it got worse over the next few weeks and she admitted to hospital on the 8th April and has been in since. 

It was finally discovered she had pleural effusion and drained a massive 4L (2 from under each lung). Her breathing has gotten a lot better. She has days where she is really good and days where too much activity has tired her out. 
She is also now a lot more mobile again (hospitals keep you in bed etc), showering everyday and going for walks up the corridor unassisted with the physio. 

So somehow we have gone from spots under 1cm no activity and hopefulness the Lenvatinib would keep them inactive and not spread to stage 4 MPE. The news that she won’t come out of hospital to the news her medication seems to be working quickly, producing very minimal fluid output and planning for discharge home by the end of the week.

Emotions all over the place! 

She has only just gone back on her medication less than a week ago after being off it since half way through March. 

She still is still on oxygen at the moment but they have dropped that and are hoping to get her home without it or to a point she can use it if and when needed. So that’s counting for some of the shortness of breath as well. 

Will the cough get any better? It gets quite bad and she has a suppressant every 6hours… 

She has gone from fun, playground/park nanna for my grandkids, working 7days a fortnight and babysitting to such horrible odds and it’s so devastating. 

Everyone’s story is different I know and we are so very thankful she is still here just after some experiences or questions I should be asking? We really are getting nothing from her doctor. 

[Livin Life]

Hi Kelly, So sorry you and your mum are going through all that you have.  I am unable to answer your questions - I don't have that knowledge or experience.  Just want to send support.  I hope you get more answers soon and your mum can indeed be discharged improved soon.  Hoping others will respond before too long that may be able to respond to some of your concerns....

[LouT]

Kelly,

So sorry to hear about your mom.  You covered a lot in your post and much of it is around the "malignant pleural effusions".  These are serious indications of difficult prognosis.  You need to sit with the leader of your mom's medical team and have a frank discussion about being properly informed of your mother's disease, diagnosis, treatment, and prognosis.  If they won't do this then you need to request different doctors that will properly communicate with you and your family.  

Once you can get that issue resolved you can then better understand what is happening, and what is necessary to do.  Please update us on your progress in this situation.

Lou