John has just been approved by the drug sponsor to undergo immunotherapy for his lung metastases later this month.

As far as I understand, this is a new approach to cancer treatment for which a number of pharmaceutical companies are developing medication. All, as far as I know, are still at the clinical trial stage. The interest is due to the fact that some lung cancer patients in previous trials have shown tumour reduction.

The new approach -- briefly (from what the doctors have told us and from what I have read)-- uses what is known as an "immune checkpoint inhibitor" to make the tumour cells "visible" to the body's immune system and getting the body's own immune system to eradicate the tumour cells. It is not chemo, but the side effects sound a lot like chemo side effects -- vomiting, dizziness, nausea, etc. The patient may also develop lung inflammation -- which in someone with lung metastases is not good news. There is also the possibility that once stimulated, the body's own immune system may attack itself and the patient may develop an autoimmune disease.

John will be in the expansion cohort of a phase 1 trial. This is because the drug company is only now opening up the trial to head and neck cancer patients. At our hospital, the trial with this drug has only been on-going since November; but already a lot of patients are interested in getting into the trial.

The trial involves an infusion once every two weeks. For the first infusion, the patient is kept overnight and examined on Days 2, 3, and 5. Every infusion will be one hour followed by observation at the hospital for the rest of the day. He will also be getting regular blood tests and MRI's. John's medical oncologist has also said that the drug seems to be better tolerated than chemo.

John is eager to participate in the trial because, frankly, there isn't any other treatment available to him at this point unless he starts developing symptoms and then it would mean palliative chemo for him. I can understand how hard it is for a patient to accept doing nothing and waiting for the inevitable. I have tried to be as informed as I can and knowing that cancer treatment, whether it is a trial or standard treatment, carries with it a lot of risks, I believe I probably can deal with the caregiving. I have been seeing a psychiatrist for a couple of months now and I have found the counselling a huge source of comfort.

I will attempt to update as frequently as I can. This being a new treatment, I think there will be members of the forum who will want to know more about it. While the doctors learn more about what works and how, so do people whose lives have been altered by cancer.



Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.