New treatments and trials for head and neck cancer (especially HPV+)

Laralyn

A couple people mentioned in my Back In The Saddle thread that they'd be interested in some of the information I've discovered about new treatments for head and neck cancer. I'm in an interesting position because while I can have approved treatments for either lung cancer OR head and neck cancer (both HPV+ squamous cell), for clinical trials I will probably only be considered to have head and neck cancer (metastasized). So most of my research has centered around head and neck cancer trials, and specifically around squamous cell carcinoma or, where possible, HPV+ SCC.

I have a blog where I created a couple quick posts that describe the different drug types, immunotherapies, and a bit about clinical trials. 

There doesn't seem to have been too much research yet into targetable mutations in head and neck cancer. In lung cancer, for example, EGFR and ALK mutations have been indentified and the targeted treatments work so well they were approved as first-line treatments instead of chemo-radiation for patients whose cancer analysis showed those mutations. In head and neck cancer, the clinical trials are just being started or considered and the mutations are just being discovered. Here's a handy chart of some of the mutations, the percentage of time they seem to occur in HPV- vs. HPV+ head and neck cancers, and drugs in trials that target them. The only way to know if these drugs would help you is to have genetic sequencing done on a biopsy sample.

For head and neck cancer, there has been more research into immunotherapy. I found this page really handy as a summary of the different trials and approaches available. I've decided to enter a combination trial of Opdivo (an anti-PD1 antibody that stops one way cancer can "fool" your immune system) and a second agent that helps counter the cancer's ability to slow down your immune system. Opdivo's phase II trial for head and neck cancer was so clearly successful that it was terminated and labeled a "breakthrough therapy." Keep in mind that this is for metastatic, recurrent disease at this point, where success is measured in "progression-free survival" rather than "cure." The drug Keytruda is also an anti-PD-1 antibody. Opdivo's success rate is around 20% and Keytruda's is slightly higher at around 23%. When you combine them with a second agent, however, these success rates can go up to 35% or sometimes even higher. The serious side effect potential also increases, though. Anyone with metastatic head and neck cancer should be able to find a trial going near you so you can get access to Opdivo, Keytruda, or one of the other new immunotherapy drugs being tested.

There's one really interesting and promising trial I wanted to share. In Houston, this trial harvests T-cells from your body, makes them more effective, grows more of them, then gives them back to you as treatments. It's a phase 1 trial (open only to HPV+ patients) so there are no results from it, but a similar trial targeting cancers caused by Epstein-Barr virus had astonishing results: 50% of the patients in the trial responded with complete remission, unheard of for immunotherapy as well as for metastatic cancer in general. I've been accepted into that trial and am doing the blood draw now for them to grow my T-cells. I won't be injected with them until I complete the combination trial though (which hopefully won't be for a long, long time, if the combination of drugs works for me). There are other similar trials going on around the country.

I would encourage anyone dealing with metastatic disease to research clinical trials. There are organizations that can help you if your doctors can't or won't. SPOHNC has a clinical trial navigation service, for example. Some trials don't require a lot of travel--for example, I am doing the blood draw for Houston locally and when I am ready for injections, the first stay is a week and after that I would only have to travel there every six weeks for a single day. These treatments don't help every patient, unfortunately... but they do offer hope. There are people with metastatic disease who were in phase 1 trials for Opdivo and Keytruda who are still on the drugs with stable or reduced tumor load after 3-4 years. Side effects for immune therapies tend to be much lower and more tolerable than chemo.

While I'm far from being an expert (understatement!) I'd be glad to answer any questions I can or point you toward some of the resources I've discovered.

swopoe

Thank you for sharing. While

Thank you for sharing. While my husband's cancer was HPV-, I find this all very informative. You are in my prayers.

Drivingdaisy

Thank you

Laralyn.....Thank you so much for sharing information you have researched and collected.  So appreciated. I am having my PET a week from today to check the right upper lung's change.  Hope it is not cancer related to the throat HPV+ SCC I just finished treatment for.   I just got my 1st NED so if unfortunately it is cancer, it is early.  Fingers crossed.

corleone

Question about the similar trial

Hi Laralyn,

Thank you so much for sharing!

Question: you mentioned a similar trial targeting cancers caused by Epstein-Barr virus (that harvests patient's own T-cells); can you send me a link; I think I am not using the proper search key terms – always come up with something different, but not this.

 

Thanks in advance! 

Laralyn

corleone said:

Question about the similar trial

Hi Laralyn,

Thank you so much for sharing!

Question: you mentioned a similar trial targeting cancers caused by Epstein-Barr virus (that harvests patient's own T-cells); can you send me a link; I think I am not using the proper search key terms – always come up with something different, but not this.

 

Thanks in advance! 

EBV info

I didn't realize Epstein-Barr virus also caused head and neck cancer! I'll update my post accordingly since this may be helpful to more people now.

Here are some similar trials to the HPV t-cell one in Houston, except for Epstein-Barr. Some are concluded (which is probably where the data referenced in the HPV trial comes from) but they include contact info for the people running the study and you can contact them to see if they know about later phase or all new trials.

https://clinicaltrials.gov/ct2/show/NCT02065362?term=ebv+Nasopharyngeal&rank=7

https://clinicaltrials.gov/ct2/show/NCT00706316?term=ebv+cancer&rank=2

https://clinicaltrials.gov/ct2/show/NCT00834093?term=ebv+cancer&rank=20

https://clinicaltrials.gov/ct2/show/NCT02065362?term=ebv+cancer&rank=51

 

the_wife

Laralyn said:

EBV info

I didn't realize Epstein-Barr virus also caused head and neck cancer! I'll update my post accordingly since this may be helpful to more people now.

Here are some similar trials to the HPV t-cell one in Houston, except for Epstein-Barr. Some are concluded (which is probably where the data referenced in the HPV trial comes from) but they include contact info for the people running the study and you can contact them to see if they know about later phase or all new trials.

https://clinicaltrials.gov/ct2/show/NCT02065362?term=ebv+Nasopharyngeal&rank=7

https://clinicaltrials.gov/ct2/show/NCT00706316?term=ebv+cancer&rank=2

https://clinicaltrials.gov/ct2/show/NCT00834093?term=ebv+cancer&rank=20

https://clinicaltrials.gov/ct2/show/NCT02065362?term=ebv+cancer&rank=51

 

Very interesting - thanks so

Very interesting - thanks so much for sharing. I wish you all the best and hope to hear of your success!

donfoo

so much thanks!

It's awesome you bring your latest knowledge to this forum. Nobody wants to ponder recurrence but the advancements in cure are happening so fast now it is vital to styay aware of what is going on. There has never been so much advancement in finding cures for cancer - it is certain to happen soon. Let's pray our cohorts are part of the first group to benefit and slay this killer.  thanks again, don

Kenny-

Thanks for sharing

I realized most people know if they're HPV or EBV positive. It was someting my care team didn't discuss. Is it too late to do a test on the biospy? Not sure if insurance will pay as well. but I regret that I don't know if it's stained with either virus.

MJG1

Kenny

I would ask them to be certain that there was not biopsy done for those tests, if not I hope they will do it for you!  We were thrilled to learn my husband's was HPV+ because we now know more of what we face.  Best of luck to you.  

LiseA

Mine was not HPV, which I

Mine was not HPV, which I knew wouldn't be the case anyway. But does that mean less options for me?

jcortney

Just to give you my experience with Keytruda trial

Unfortunately, mine wasn't successful as I was one of the few that succumbed to one of the side effects.  In my case, Keytruda attacked my joints and actually produced level 3 RA symptoms.  At the point where we decided to pull from the trial, I couldn't lift my arms over my shoulders and the pain actually started when I lifted them above my hips.  A few weeks later, an alert to physicians was issued to be on the lookout for these symptoms. Now remember this side effect only affects a small percentage (probably less than 10%) of participants.  Don't let this effect you, this was just for folks to be aware.

Now that said, Optivo IS in my future.  It's the same class of drug but works a bit differently and I'm looking forward to giving it a try.

Good luck all,

Joe

CivilMatt

jcortney said:

Just to give you my experience with Keytruda trial

Unfortunately, mine wasn't successful as I was one of the few that succumbed to one of the side effects.  In my case, Keytruda attacked my joints and actually produced level 3 RA symptoms.  At the point where we decided to pull from the trial, I couldn't lift my arms over my shoulders and the pain actually started when I lifted them above my hips.  A few weeks later, an alert to physicians was issued to be on the lookout for these symptoms. Now remember this side effect only affects a small percentage (probably less than 10%) of participants.  Don't let this effect you, this was just for folks to be aware.

Now that said, Optivo IS in my future.  It's the same class of drug but works a bit differently and I'm looking forward to giving it a try.

Good luck all,

Joe

Joe

Good luck to you Joe!

Matt

Barbaraek

Good hearing from you Joe..

I hope the Optivo makes a positive change for you without side effects. Thanks for bravely enrolling in those clinical trials.

Barbara

MJG1

Cisplatin plus Abraxane-Clinical Trail

Laralynn, have you come across the trial for the combination of Cisplatin and Abraxane?  I understand that for HPV+ patients there has been a lot of success with this trail at Siteman in St. Louis.  That is what the plan is for my husband.  I'm trying to read more about it.  Apparently, Avraxane is approved for use with other cancers, but not really Head and Neck, BUT, it is working when combined with Cisplatin.  Praying it works for my hubby!!

Kenny-

EBV

I asked and they confirmed I'm EBV+, quite typical for NPC.  

Kari2007

EBV+

My doctors never brought up EBV, but I've tested positive before. In fact, a naturopath tested me for it when I first had my swollen lymph node and told me I was just reacting to the EBV, so I put off a trip to the ENT for months. Thank god I listened to my body and got another opinion.

Tully

Options

I was diagnosed with squamous cell carcinoma bilateral tonsil cancer in 2006.  They did the TIC protocol then cisplatin and 35 rounds of radiation and it metastisized to my lungs.  Thought about doing nothing because they offered me little hope but I ended up trying Erbitux.

The cancer could not be seen on the PET scan after only five months.  It has yet to return.  I get chemo every two weeks now and have less skin issues than before.  Because I was stage four I will continue it until it stops working or I can't pay for it any longer.  Although never tested, I assume I have HPV as I believe the chemo responds better to those with the virus And I have had over 500 rounds.