Non HPV Squamous Cell Carcinoma, seeking

LitlCJdoll

Hello Forum,

Perhaps some of you also received the e-mail I got today, from Chris at The Head & Neck Cancer Alliance.  I am curious to hear if anyone got the same letter.

She is seeking someone like me, with Non HPV HNSCC, specifically to communicate with and support a like patient. His tumors are Negative for HPV, as all 6 of mine have been.  And his cancer is now Recurrent like mine, unfortunately as well.  

Chris is seeking someone to help him. ?  and I replied that I will....

There are Stigmas attached to Non HPV HNSCC, and none of them are accurate in my case. I have never smoked, my entire life. I am a nnn drinker ( my damaged esophagus could never tolerate it long before cancer.).....  

In my very specific case , my doctors feel my malignancies are a result of my genetic Primary Immunodeficiency.  I posted about it in my Lung thread recently. Its a rare genetic blood disease and Cancers do occur with it but they are usually Lymphoma and Gastric cancer, specifically. No idea why I got this  devil head & neck, unless from unrelenting mouth sores, which are beside my vocal cords too?

Anyhow, I have 2 areas which are pre malignant Moderate Dysplasia, Filmy Leukoplakia etc. Always in some sort of transition or devolving into my Invasive SCC.

MY Medical Oncologist and surgeon sent one of my recurrent tumors to Foundation One genomics sequencing company, and it showed nothing but bad to worse news. It showed no markers for current targeted therapy drugs. 

It showed very poor response to immune checkpoint inhibitors.

It was shown to be a recurrent and aggressive type tumor...

And on it is the Genetic Mutation ARDI5, specifically for HCC, Heptocellular Carcinoma. Its the cancer driver for Primary Liver Cancer. My Hepatologist flipped when I told her this, because in just the past 2 years I've developed Liver disease as well.

Its nuts all that's turning up in me.  I have to laugh about it...

Anyway, I guess Chris with the Head & Neck Alliance will get back to me if they deem me suitable to help this patient. I am at a loss what I can do, however I will do all I can..

I am betting someone  in this group received the same e-mail.

Crystal

LitlCJdoll

Another point to make, the

Another point to make, the man in my life who died May 18th from Stage IV HNSCC, his wss HPV Positive. Yes, and it metastasized from his Base of Tongue tumor in 4 months time, after getting Standard of Care chemotherapy and 37 radiation treatments at the prestigious Emory University ... It first went to his Liver, 6 tumors there, later to the vertebrae in spine. Then right hip bone ( the pain stopped his walking. He had second Radiation course for that tumor), and it surrounded his Gall bladder as well.  Radiation fibrosis paralyzed a vocal cord early on, then it closed his Airway requiring a Tracheostomy. ( I had one too for a while).  Mind boggling amounts of chemotherapy for Years. He also had both Keytruda and Opdivo. Each of them held him steady for about 3 monthd but then the tumors were growing yet again.

The last chemo agent  was Xeloda. Which is usually for advanced pancreatic cancers....

My point is, he was in that small percentage of HPV Positive patients who have very aggressive advancing cancer.

He reluctantly signed on with Hospice, but died suddenly the week before they were scheduled to come.... Randal was 60. 

Crystal

wbcgaruss

Well Crystal I Have Not

Received anything but then again I think you have to sign up to do that.
You must be a close match.
I think they are matching people and all you have to do is help them with your experience with cancer.|
You can tell them the difficult parts to prepare for and just give them a shoulder to lean on as they go through their situation.
They asked the right gal you sure have the knowledge and experience and you are smart and explain things well, lady you got it all.
Take Care-God Bless-Russ

LitlCJdoll

Hi Russ,

Hi Russ,

 

Before I acknowledge here and then correct my major Blunder, ... Let me first tell You that you are an outstanding Gentleman, and also that you've always got in goin' on, with the most current links and the perfect info for every situation. I don't know what career field you were in,  but I know you must have excelled in it !

Thank you.

 

Now, to correct my huge mistake::  I got 2 organizations mixed up!! I belong to both of them.

Last week I got an e mail from Head & Neck Cancer Alliance, about something altogether different.

 

This one today was from SPOHNC, Support For People with Oral, and Head & Neck Cancer. Oh my, Chris would absolutely kill me if she knew I got those wires crossed !!

So, ... To correct and let the forum know--- the e-mail came from SPOHNC, 

And yes, I volunteered 3 years ago to do this, in their nationwide network. I'm a member of SPOHNC, and have several of their books. 

Also, I got them to send newsletters and pamphlets and Self Exam cards, and books to our Resource Center, in our Comprehensive Cancer Center. People here were so thrilled for Head & Neck cancer to be recognized, and material made available for our patients when they come in looking for reading material, etc.

It made me happy too , that I could make it happen!

 

Crystal

wbcgaruss

Dear Crystal No Problem

You have a lot going on don't worry about it but thanks for your follow-up correction.
I also get emails and info from multiple H&N cancer-related entities and I understand we can easily get them mixed up.
I am surprised that it took 3 years for them to have someone to match to you but you have special experiences to share so I am sure you will be the best connection for the person that you are helping.
So no wonder a 3-year gap goes by and you can easily forget the details connected to it.
Heck, sometimes I walk out in the kitchen or garage and forget why I am there.
I am glad you are active in SPOHNC as it helps you and them both.
I had gotten an invitation to do a mentor thing like you did but haven't done it yet but should.
Hopefully, this will spur me on to it but I want to make sure I will be committed to it and devote all the time needed when necessary.
Sorry I made this so long but good to hear from you-Take Care-God Bless-Russ