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..thank you for sharing this info. I would like to write more to you later about it. I see ypu are in Canada and i wonder if this trial is available in the U.S.

Sincerely
Mary

Hello Gloria,
I have read a few articles on this immunotherapy treatment for cancers in the last few weeks. None of them were for Head and neck cancers so I am really thrilled to see that this has been offered to John. I, personally want to thank you both. This is pioneer stuff and I am sure we will all benefit from this. There do seem to have been remarkable results to date with other cancers.
From the articles I have read it is about" training the body's own immune system to kill the cancer cells. This involves genetically engineering immune T-cells to target and kill cancer cells while leaving the healthy cells unscathed. This can be done by engineering the patients own T-cells so that they have new genes that make new receptors to bind to the cancer peptide. The T-cells home in on and destroy all cells that contain that peptide. The second method is by producing artificial T-cell receptors that are primed to recognise a cancer peptide . These receptors contain features that enable them to kill cancer cells once they have bound to them".
I sincerely hope that John does get good results from this immunotherapy. We will all be watching for your updates.
I too found talking to a therapist helped me greatly.
Keeping you both in my thoughts and prayers.
Tammy

Tammy, I believe in John's case it is the second option that you described. In my reading I have not come across trials involving head and neck patients either. I agree that it is pioneer stuff and our medical oncologist actually said it is a hot topic in cancer treatment right now. I hope, too, that John will reap some of the benefits. I also hope that the trials will eventually point to new treatments for other cancer patients. I would also like to say that your knowledge of the subject is amazing

Mary4000, I know that Bristol Meyers Squibb has been running trials. John's drug sponsor is Astra Zeneca. I think the American Cancer Society has a page on what trials are available and what phase the trials are at.

Hi, Gloria
I am glad to hear John is involved in the trial. They are getting a better handle on how this incredibly complicated system works, and I think this trial holds a lot of promise. Best wishes to both of you brave pioneers.
Maria

Hi Gloria and John,

It's good to hear that John has been accepted into the trial and will beginning soon. While there are many unknowns, I am sure that being enrolled and part of the study/treatment brings hope and energy (so much better than that unknown, waiting feeling). It is new territory for you both, but I sense that you and John are a good team and will carry each other through it! :-)

Keeping you in my thoughts and (increased) prayers!

Best,
Nancy

Awesome... do keep us apprised... and best of luck and blessings hugs!

So, after a couple of delays (a lung biopsy that had to be rescheduled and low neutrophil levels), John got his first infusion this past Tuesday.

The infusion itself took only an hour, but he was kept in hospital overnight and had hourly blood tests. He also had to have 3 EKG's. Then on each of the following three days, we had to return to the hospital for more blood tests.

The oncologist had told us that the drug is quite well-tolerated. I have to say that at first I didn't really believe her. But now, after five days, John is still feeling good with no side effects showing and he does not feel significantly different from before. He is still able to go for his daily 45-minute walk in the Canadian winter and putter around in his pottery studio. All this, needless to say, is quite a relief to me.

While we were waiting for John's blood test results to come back on Friday, we got talking to a lady who was waiting to take her trial medication. Apparently, she's the sixth person in the world to be given her specific drug. She has terminal liver cancer and was given weeks to live. She has now passed the one year mark. In her case, the doctors did a DNA profile on her tumour cells and then it was compared to the 2500 mutations in the international cancer archive. The doctors then gave her treatment targeted at her particular mutation.

All this sounds really encouraging to me. It certainly looks like cancer treatment is moving in all kinds of new directions. It is not impossible that one day, chemotherapy and radiation will become the dinosaurs of cancer treatment. Let's all take heart from that.

Gloria,

Such good news that John is tolerating the new drug so well. It's somewhat strange to say 'congratulations' on starting a new round of treatment, but your post is quite uplifting! I agree it gives hope to conquering cancer as a reality.

Best to you both,
Nancy'

Gloria-
So glad to hear the trial is going well so far. Thanks for sharing that information. We have been told about an immunotherapy trial that may be a possibility down the road. Medimmune/Astra Zeneca is the sponsor. It is MEDI4736. I wonder if it is the same one your husband is in. Best wishes that all continues to go well!

Mary