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

Mary, yes, it's the same trial. We have just been told that in the second part of the study, which is what John is in, they are asking about 410 people to participate, with the possibility of more people being added. In the first part of the study, about 50 people were asked to participate. I believe the numbers are worldwide.

Gloria-
Thank you. I am happy to hear this information, particularly give the good results of the other patient you met. I hope all continues to go well, and relatively side-effect-free for your husband.

Mary

Update

John had his first review today after four doses. The CT scans two weeks ago show 16% increase in tumour size! which, the doctor assured us, is very little (look at it like this: 16% increase of 1.5 cm). Besides, immunotherapy drugs work very slowly so John will continue with the treatment and there will be another review in two months. The MO, who is in charge of all phase 1 trials at the cancer centre, also mentioned that there are other drugs that John could try if this one does not work well enough. So, all things considered, I would consider it good news.

Yeah - to any kind of triumph... keep on keeping on. I know it's hard. It's kind of like holding your breath indefinitely. Hoping that the next CT offers good news. hugs.

Hi Gloria,

I just discovered this thread (I've spent most of my time in the intro section) and am delighted to hear the good news you've experienced! I hope it continues to be good and even improve!

My distant mets have all been in my liver, and that's a relatively easy organ to treat; in my case, most recently with SIRIspheres, tiny plastic beads, ~ 1/3 the thickness of a human hair, each enclosing a tiny hunk of Yttrium-90, a beta-particle emitter. There has been enormous success with this in Liver Cancer patients and it seems to work equally well on Oropharyngeal mets in the liver.

Yesterday, I had my 14th and final radiation session on a lymph node between the liver and the stomach that we knew about, but left alone while we did the SIRIsphere routine. In that time, it grew from .2 to 4 cm, but I'm confident that the radiation will have zapped it. I really won't know until May 12th when I get a CT with contrast to check. But I'm pretty sure I'll be clean then.

HOWEVER, clean is a temporary word in my world, I know that just like "Whack-a-Mole," it's going to raise its lovely head again; so it's great to learn that new treatment modalities are on hand should it show in the lungs or elsewhere that radiation cannot be used to simply Zap it away.

Best of luck to you and John,

Bart

Yeah on completion Bart you're a trooper man! Hugs,

Hi Bart, congratulations on completing the SIRI spheres treatment. It is good to know about different kinds of treatment available for metastasis. We count ourselves lucky that we are at a hospital where they have an entire department for clinical trials. Good luck to you on your next round of treatment.

Hi Gloria, Thank you for the update and hooray for good news! Bart, it was good to hear from you too; you made me laugh in my saddest hours last year with your posts--and your optimism and whack-a-mole analogy are right on. I communicate with two women by email whose dad/husband are dealing with mets. Between them, gloria, bart, stily, zenda I have heard so many different treatment approaches to what I am sure are similar to wildly differing pathologies. Mets seems almost to be its own little subset of this recurrence forum. Not sure where I am going with this, except if I were a researcher, I would be want to do something with all this valuable data. As it is, I am grateful to glean every bit I can to help me prepare questions for doctors. And of course I am happy to share our experience. I will know more in a week.

Best to all, and thanks for being here,
Mary

Thanks for the kind words, Mary, Cheryl and Gloria!

It's great to be here, and that's even before considering any alternatives!

You all are great people, and it's a real lift to the spirit to be among you!

Thank you all!

Bart

Hi Gloria,
I am happy to hear that progression after a short time is minimal. I believe that immunotherapy would take some time and progress wouldnt be seen overnight. I think that John or I or others with distant mets didnt get this way overnight, so it would be logical that reversing it by way of the immune system would take time also. I guess my case presents as unusual. (The MO's description).I had a pet in Jan. and a follow up Ct on Feb. 28th. Some of the lymph nodes were actually smaller. I had cardiac bypass surgery in December, about 2 weeks prior to Jan. petscan. Sooooooo maybe? Last nights tumor board suggests a biopsy of the nodes and see where that goes. The problem with that is that my throat opening is only 4-5cm wide while the camera is 6cm. It now appears that we are going to do a new pet late next week or early the next and see where that goes. The frontline therapy right now is trying to find a Dna match in which to start targeted therapy. I am still looking for a clinical trial in the SW U.S. if you hear of anything. good luck to all club members

Update -- Second Review

Today John had his second review after 8 doses. The CT scan shows 27% growth compared to the baseline established at the inception of the trial. The MO told us not to worry as in real terms, the lesions have grown 2 mm in four months. With immunotherapy, it is also possible that the lesions will appear to have grown in size and then start to shrink. The reason for this is the inflamed cells around the lesions will make the lesions seem like they have grown. The human eye is not yet able to distinguish which are the cancer cells and which are the inflamed cells just by looking at the CT scan. To do that, the patient will probably have to have a biopsy but one wouldn't want a lung biopsy every two months because of the risks. The upshot is John will have another four doses and we may see some changes (or not) at the next review.

Our doctor believes that immunotherapy will likely become an accepted treatment, the question that needs to be answered is what kinds of cancer is it most effective for. She thinks that what is most amazing about this class of drugs is that there is so little or no side effects. I can see this as John is able to live a normal life except for the fact that his esophagus is so scarred from the radiation that he cannot swallow.

We are still feeling positive about the situation. Another patient whom we keep running into at the hospital has stomach cancer that has metastasized to the lungs. He was given a year to live. He is in the same trial as John and has had twelve infusions. His tumours have stopped growing.

My takeaway from today is not to give up. It really does seem like we are turning the corner in cancer treatment.

Although a bit early to tell, it sounds like very good news! I'm glad the side effects have been pretty much nil.

Looking forward to the next report. It really sounds promising.

Best wishes for a successful outcome.

Fingers crossed for majorly positive news the next review. For now... Yeah!! That they seem optimistic hugs!

Wow. That is such positive news. There seem to be more articles available recently on Immunotherapy too. It is becoming more mainstream.
Well done you two.
Tammy

Gloria - Thank you for the update; I think of you and John often and am glad to hear things are progressing with little side effects. Such very nice news and positive outlook. I agree that the advances in cancer treatment seems to be making great strides and believe we'll see many more to come.

Take care,
Nancy

Gloria-
Thank you so much for updating us. Your news seems so very positive! "Turning the corner" is a really beautiful phrase to so many of us. My continued best wishes to you and your husband on this journey.

Best,

Mary

Gloria,

Sounds positive. Toes and fingers crossed....

Fingers crossed for you two!

Thanks for all the encouragement. At times like these, one does need to keep hoping.

Update

John has had 12 infusions of the trial drug and we met the oncologist for "the" review today. Unfortunately, while the lesions in the lungs have not grown much, there is a lymph node which has increased rather alarmingly in size in the last two months. The doctor concluded that the trial drug wasn't working and demitted John. Instead, he will now be getting chemo -- taxol and carboplatin -- to start in two weeks' time. This is, of course, not good news but being in a clinical trial is always a crap shoot. We asked the doctor but there are no other drug trials for head and neck patients at this point.

John has taken it quite well and I am glad about that. He has been having discussions with his therapist about the situation and I think the sessions have helped him understand what he is facing and how he can best deal with it.

If there are members of the forum out there who may be considering immunotherapy, please do not lose hope. There are patients here at our hospital who have had more infusions than John and who have had better outcomes. It is like the initial treatment of radiation and chemo -- it all depends on the individual.

Sorry to hear about the trial failing. Although chemo is palliative at this point there is pretty good response to control the cancer resulting in good QOL out in the future.

I had induction TPF and then carbo with rads. The response during induction was amazing in terms of tumor size reduction. It was so effective the final report stated "complete or near complete resolution..." meaning the chemo worked extremely well on my cancer.

Good luck with the new treatment.

Gloria, Im very sorry to hear about the trial not working better for John. Thank you both for making the effort and encouraging others to at least give the trials a shot if its an option.

Wishing you both all the very best with everything.

Gloria, I am so grateful to you both for blazing this trail for all who are still to come and who hopefully will one day benefit from Immunotherapy. Without people like John, new treatments would never get off the ground.
I'm sorry John has not benefitted himself and wish him well on the next phase of his treatment.
Time to readjust your sails.
Tammy

Good luck with the next step. I had Taxotere/carboplatin in 2012. Today I see an article that this combination may be better for HNC than Cisplatin.

Thank you for updating, and being in the immunotherapy trial.

Did they discuss maybe removing he node and continuing the trial? If it's keeping the lungs stable that's great. Sorry about the outcome so far. Hugs.

Cheryl, the general feeling is that the trial isn't working, so surgery at this point is not going to achieve anything. Besides, the protocol for any trial is very stringent and doctors cannot do anything outside what is mandated and that includes surgery because it will confuse the outcome. The cancer is terminal and the senior medical oncologist was very clear about the fact that anything done at this point, including the trial, is palliative.

Tammy, yes, I do think it is time to adjust the sails. It is a motto I have been living by for the last eight months or so.

I thank everybody who has posted for their kindness and support. You indeed feel like family to me.

Sorry to hear the news, Gloria. Thank you to you and John for being pioneers in something new.

Gloria-
I am so sorry to hear this news about the immunotherapy trial. I wish you and John all the best as you move on to new therapies. You have been so kind to keep us all updated on the process; your selfless sharing of information has helped me so much--and I know many others. Now we are all here to send hugs and hold you in our hearts.

Mary

Gloria - You and John continue to be in my thoughts and prayers on a regular basis, especially now with this bad news. There are not enough words to express my sadness for you both, words to give you support and encouragement, but know that you are not far from our hearts and mind.

John and you are a strength to each other and to so many of us here. It is easy to loose our sense of being so please take care of yourself also.

All my best,
Nancy

Uptown, Nancy and Mary, thank you so much for your messages. It is so nice to know that I have friends that care.