I am very frustrated. Since last year I am on the Select-1 trial.
Last CT showed a light growth in my right adrenal gland from 19x11 mm up to 25x16 mm (0,75x0,43 up to 0,98x0,63 inch). Regressive lymph nodes, constant mass in upper right lobe 17x12 mm (0,67x0,47 inch).
Last Wednesday my Doc told me we have to think about the 3rd-line treatment.
I don´t like to have another chemotherapy right now. I am getting weaker with further more treatments of this kind. I want to keep doing my daily work in the office and I want to keep my body strong with my exercise bike.
A immunotherapy is my great wish but I can´t find a clinical trial for me. Isn´t there any trial in the world I can join? It doesn´t matter where in the world the trial is as long the sponsor pays the treatment because my insurance will only pay for approved treatment. Board and lodging is no problem for me - but I can´t pay a medical treatment for several hundred thousand´s :-).
Hope for your help
Christiane
Reply # - March 22, 2015, 05:49 AM
Hi Christiane,
Hi Christiane,
I'm sorry to know you're going through this. There are trials being held all over the world testing immunotherapies, the PD-1 and PD-L1 drugs are quite promising for some people. It's very likely your insurance will pay for a 2nd opinion at a research and/or teaching hospital.
Dr. Weiss has written an informative post on the subject of 2nd opinions that is likely to be quite helpful. He concludes the post,
“My strong personal opinion is that the best care available to most patients is on clinical trials.I’ve cut my income into a third by becoming an academic doc for the privilege of designing clinical trials to try to improve the standard of care. I passionately believe that many of our trials regimens are very promising to be better than existing standard of care, which, frankly, is not good enough. I have no doubt that if my father were to develop lung cancer, that I would seek the best available clinical trial for him. In my opinion, seeking good clinical trials is the most important reason to seek out a second opinion. Clinical trials are not the best choice for every patient at every time point, but I feel strongly that optimal care should at least consider them at every major decision point.” http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
All trials are different but most if not all trials at least pay for the drugs being given which is the major cost of doing business at a cancer center. Other paid costs vary from trial to trial. It would be worth discussing your options and needs with the oncologist and possibly their social worker at the time of the 2nd opinion appointment.
I hope this helps and please let us know if you have other questions.
Much luck,
Janine