My dad was recently diagnosed, we have been told it is outside his lung in the lining. His symptoms started at the end of 2019 and has had a fluid drain a few weeks ago. We are now waiting to find out about treatment, still not sure how the Covid outbreak will affect this. He hasn't lost any weight but has fatigue, discomfort and a persitant cough with the sensation that his chest cavity outside the lung is filling up again.
My sibling and I feel a bit overwhelmed by all the information. It's great that there is information but we don't know where to start so we can help him as much as possible. We communicate via email with macmillam nurses who are fantastic but still don't have access to some of his information on their database. Also the nurse handling the case is off and they were supposed to call end of this week to advise us on treatment but we understand things are very strained right now so will get in contact this week.
Any questions that anyone can answer or give advice on we would be so grateful. Thank you in advance!
Who do we need to speak to about clinical trials, is that something we can get him onto before or as treatment starts? Am I right in assuming that it depends where you live as to what trials you can join? Who signs him up for it- the cancer specialist? We don't even know what trials exist or how they work.
Would he typically be starting Chemo first?
Has anyone else had their chemo or treatment postponed due to Covid?
We have been told that they can do another drain, get a permanent drain fitted and also apply a talc. Maybe it depends on the person but generally how long does the talc last and how effective is it? How long would it take for the chest cavity to fill up again afterwards?
My dad is very open to complementary therapy and we have already looked into supplements turmeric and such, thinking about acupuncture and other things but know that shouldn't be mixed with chemo if he starts that. Is there any supplements/herbs that you can advise or treatments along these lines?
How do things go from here? Now he has the cough and lung issues is that here to stay or do people with mesothelioma ever have their symptoms disappear after treatment then return at a later date? Ive already noticed he seems to have good and bad days but generally is it a steady decline in health or could it be drastically up and down?
Are there any drugs that we can ask for that they wont suggest unless we do first? Ive seen someone mentioned low doses of I think it was a drug to reduce cancerous growths?
Feeling quite overwhelmed and I know it is a learning curve but as time is often of the essence we are worried about missed opportunities. Greatly appreciate any guidance. Thank you for your time.
Corin
