Hi. I was diagnosed with lung NETS Dec 16 and had VATS lobectomy Feb 17. Jan 19 PET-CT showed tumours on pancreas liver and in bones. Quite a shock after 3 clear scans. Treated with Everolimus but lung inflammation resulted in pause in treatment. Has anyone been offered further surgery or the Cyberknife for METS? Also have experience upper respiratory tract inflammation/constriction which seems like asthma - has anyone experienced this and if so what treatment?
I was diagnosed in Feb 2017, you can read my profile
I will update shortly as Afinitor which I started in August 18 has not stopped progression so started on Ocreotide. I had a couple of issues with Afinitor, I developed Eczema on my legs and an itchy rash on my arms. We reduced the dose to 5 mags and I had no further problems
Unfortunately I have had other major issues I kept dropping my Potassium after testing eventually I have been diagnosed with Cushings so waiting to go for surgery to remove my adrenal Glands, only problem is I keep spiking a temperature and we can’t find the source.
My Consultant Team, liaised with the Royal Free and conjure it’s the only option to reduce my Cortisol levels
Sorry to hear about your issues. Can't offer much but I also experienced lung problems with everolimus (non infectious pneumonitis). Made me feel very poorly and was taken off treatment for several weeks. However I am tolerating 5mg dose of everolimus and my liver METs have been static since though not reducing. Will be interesting what your oncologists will do next.
Really sorry to hear about your adrenals. Hope the surgery goes well. Adrenals seem to be a bit of a nuisance. Mine have been producing too much aldosterone for the last 40 years. Didn't like the idea of surgery at the time so have been popping various pills for blood pressure all that time.
Glad that the half dose of everolimus is working for you.
Sorry to hear about your difficulties. I too have a lung NET with liver/bone mets diagnosed just about a year ago and now taking Everolimus. I have been lucky with side effects (just mouth ulcers) and at the moment everything looking stable. I am guessing that if you are being cared for by a specialist centre they will have told you about the NET Patient Foundation https://www.netpatientfoundation.org
They have patient seminar coming up next week in London which is going to present some information about liver management - amongst other latest research and treatments. They seem to run other events and I have found their information and links helpful. If they talk about the cyber knife for liver mets next week, I will let you know
I too have Lung primary with Liver Mets. I was on Afinitor for a year, few skin issues so had reduced dose but scan showed progression so just deciding on next options when I developed a major health issue.
My Potassium kept dropping so admitted to hospital and it took a while but they discovered my Adrenal Glands were overproducing Cortisol. I started on Metyrapone which started reducing the level and it put my bloods back to normal. Unfortunately I developed a serious pneumonia which was difficult to treat. Eventually they found the right antibiotics and 3 weeks later I have recovered.
So being transferred today for surgery on Wednesday
Look forward to reading about the seminar on the website, I was planning on attending as it looked really interesting
Wishing you all the best for the surgery Christine and will post an update about the seminar. I'm not sure what you have found but lung primary seems to be rarer and so much of the research and evidence focusses upon gut/pancreas NETs. I am hoping the seminar will give a little more insight into the what is in offer for lung NETs too, or how the treatments are transferable.
