Daughter New To The Forum ( HNSqcc) Metastasis to Thoriac Lymph Nodes, HPV+16

TampaBayDad1
TampaBayDad1 Member Posts: 1
edited December 2015 in Head and Neck Cancer #1

Hello everyone Im Daniella, and Im the daughter to James ( Jimmy D), 68.

 

Hoping to find similar cases, support, treatments, stories, and comradery here! :)

 

Ok, so Dad is a healthy man normally, never smoked or heavily drank. He weighs 165 lbs, and is 5'10.

He was diagnosed with HNSqcc in the base of his tongue. Went on Radiation for 6 weeks and 4 rounds of Chemotherapy ( Cisplatin)-

Doctors told him he had an 80-90% Rate, plus the fact that his cancer's etiological diagnosis was from his HPV 16 strand, which caused his cancer in

the first place, normally is an advantage in otherwise normal cancer cases, as you know.

This was in March 2015. Three months later he went back for A PET, and they cleared him of cancer with "No abnormal uptake in the head and neck"

. My mother told me they told him he had one "radioactive spot" on his lymph node that they believed just to be "radioactive skin"

They did not request a biopsy at that time, and in his notes I printed, it says the PET "showed an inderteminate tiny cervical lymph node"

At this time, what I am learning from research is they should have biopsed it further..

December 3rd he did another PET/CT... And it is showing a metastic cancer!

--------------------------------

"Multiple hyberbolic lymph nodes Including the AP Window maximum 5.1 ( this is the aortopulmonary window, a space above the heart between

the aortic arch and pulmonary artery )-Subcarinal suv maximum 6.2 , right part paratracheal SUV maximum 4.7 ( right hilar) SUV maximum 6.5

and (left hilar) SUV maximum 6.5. A Small new portacaval lymph nodes has a SUV maximum 4.4, and a tiny stable hyperdense focus in the left

kidney. ( enough to catch)

---------------------------------

basically this says hes got some side lymph nodes in the Nodes ( H1) on the sides, ( which I read is not as serious if nodes were in the middle)

BUT he does have a tiny spot in the kidney and also another infected lymph node in the portacaval. And he has cancer in his AP window next to the heart.

 

Ok, so where we are now. My mother was upset because she spoke to the radiologist and he gave my father one year maybe 18 months with treatment.

A nurse came in and corrected him and said" Nono, people are living past two years" and my mother said they called it lung cancer.

Now for the sake of all terminology here, I did a ton of research, and it doesnt seem at all like lung CANCER, but rather HN cancer that metastasis to

his upper thoaric lymph nodes and started to metastisis to his kidney.

They told my father these couldnt be cut out, and to pick from Dodetaxel or Fluorouracil ( 5 F U ) with combination with more Cisplatin.

----------------------------------------------------------------------------------------------------------------------------------------------------

 

My parents get confused alot with what doctors tell them.

 

--------------------------------------------------------------------------------------------------------------------------------------------------------

We went to see the Onocologist. She stated there its Hn cancer that spread to the lymph nodes. and not lung cancer. I was right.  . From my research in the Journals of Medicine and Cancer, etc, its quite common to metastize to the lymph nodes and

all precautions should be met.

Now that I am involved and educating myself as well as my parents, I am not comfortable. I contacted Sloan Kettering to get a second opinion and

talked with a woman from an old neighboorhood that had stage 4 brain cancer using Dr Nesselhuts at the NYC Meridian Group ( same as Dr Chang )

dendritic cell transplant therapy. Seems like alot. But my point is and my questions are...

Is there anyone on the forum who went thru this?

If yes, please tell me about the outcome in detail.

Was there any new immontherapy used?

Were any of the lymph nodes taken out?

My research concludes that (Fluroucil / 5F U) doesnt find the pathways like Dodetaxel does. Is this true?

My research says different.

Seeing that my father is HPV positive 16, I have found from Duke University that they have found ways to redirect the cancer causing virus

HPV to kill its own cancer

producing cells. Has anyone altered their HPV cancer cells sucessfully this way to stop from producing the cancer?

Does anyone have any research or statistics on his prognasis? I see that they give a 50/50 shot for HN patients to survive and 37% with

metastis. The radiologist pretty much gave my dad no chance, and the nurse negated him, plus then the Oncologist the week later, didnt

say anything , but "dont freak out just yet." So that was good. I think my parents heard all the wrong things first and now we have something to work with. I have read the notes on the patient portals etc, so thats good.  I have read so many different reports its not even funny but Id like to hear from real people.

If there are immunotherapy drugs to identity the pathways I want them.

Why are they putting on the same medication but stronger? Obviously that didnt stop the spreading the first time.

If there are other ways to stop the cancer from spreading other then chemo ( like removals) I want to know about them?

If anyone survived this please let me know. I have also contacted famous Dr Chang of the Meridian Group in NYC about supplemental treatment

, got appt for Jan.

I dont want my Dad to go out like this, in chemo for his last days . hes my Dad. Hes always been there for me and I wanna fight for him

and be on the forefront of anything new and beneficial.

I apologize for any mispelled words or grammatical errors. its been an incredible trying week with my head diving into this stuff in the home office.

 

Thank you so much for reading my post! <3

Daniella

Pic is of Dad and Mom 1976 :D Prop Cigarrette for costume. He wasnt a smoker ( just wanted to clarify that haha )Mom was a hot bunny Dad a macho italian. She ended up a media specialist and him a food industry broker. :)

 

 

Comments

  • louhou13
    louhou13 Member Posts: 46
    #2
    Possible option

    Hello, I previously posted  a similar post under a different heading. I, obviously am a big fan of immunotherapy. 

    Hello, I do not post often but do read the posts. I was originally diagnosed in 2012  with SCC stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. After refusing treatment, I was given 6 months to live and by March 2014 was coughing up a good amount of blood and feeling the tumors getting bigger. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (She is amazing! - The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some very minor itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer.

    The FDA has already approved anti PD-L1 drugs for some cancers and more approvals are on the way. Immunotherapies empower the entire immune system to attack cancer at all fronts ...not just hot spots that show up on CT or PET. 

    I"m more than happy to answer questions if you would like.

  • wmc
    wmc Member Posts: 1,804
    #3
    Welcome to the H&N Group

    Welcome, and very sorry you need to be here. Not sure what I can offer. I might seem blunt and I am sorry but you want real facts and not sugar coated BS.

    Mine was SCC laryngeal stage 3. Did not spread and the tumor was contained in my larynx which was removed and they did a neck dissection on both sides level 2-5 as a precaution. All were tested while I was still in surgery. 

    From my knowledge, they will call this as H&N that metastasized and that means it can be treated differently. Now as an example only, if it went to the lungs they would not treat him for lung cancer, it would be H&N and both can be SCC but they won't give some meds to him because it is FDA for lung only. You might find a doctor that would, but not likely. We have had members that spread to lungs but could not get in the trial because it was only "Lung" cancer.

    I have very little knowledge on immunotherapy, but from what I have read it does not cure, it extends one's life better than Chemo does, but I have seen two and they are both for lungs. His has spread to lymph glands around the kidney. 

    Having HPV+ respons to treatment better than not having HPV, but is seams to come back, more often than non HPV. You mentioned survival rates. They are in general and don't go by them. If I check mine stage3 supraglottic it's 53%. 

    Mine was contained and never spread so it goes up to over 70 -80 %. Don't go by the odds, as many of us on here would not be here. Years back 30 years they gave my Father 6 months, and we got 6 years. The last one was rough but I enjoyed it with him. Call around as ask. Stanford has a breakthrough on meds that will prevent certon cancers from spreading. Md Anderson would be another good place to call. More will respond and with information that might help. I will keep you both in my thoughs and prayers. What ever your father desides, you need to support and understand his decision, it may be hard for you.

    Bill

  • swopoe
    swopoe Member Posts: 492
    #4
    We just started on the cancer

    We just started on the cancer journey with my husband in October 2015 (oral tongue cancer stage 1), but I did not want to read and not reply. I am sorry you are going through all of this. We have three children, so you being a daughter of a patient, I can only imagine how you are affected. And from your post, you seem a lot like me...a major researcher. I did all of the same things and still am doing that in regards to my husband's diagnosis and treatment. We are in Houston and working in part with MD Anderson if there is anything you think we can do. Your dad, you, and the rest of your family are in my thoughts and prayers.

  • corleone
    corleone Member Posts: 312 Member
    #5
    Hello

    I have a few comments.

    One question is about the radiation; do you know what dose, and type of radiation treatment? For instance I had 70Gys over 7 weeks, IMRT.

    About the PET showing an indeterminate tiny cervical lymph node. PET has some false positive readings. You might get flare-ups in case of inflammation, especially if shortly after treatment. You proved to be right, but I am not so sure they are to blame (not recommending the biopsy).

    Statistics – it’s just that. One person can be well within median or average numbers, but does not tell much about individual. Don’t fret too much on that. And also, whatever you find on internet is outdated, it reflects whatever was applicable 10-20 years ago.

    It seems to me that these are lung mets from the H&N cancer. They were there to begin with, not detectable at the beginning. Unfortunately not responsive to that chemo.

    About the immunotherapy. This would be a great avenue to explore, provided he can be offered a clinical trial, or approved treatment (anti PD-L1 or similar – as louhou posted). There are a few ongoing early phase (even first in human) clinical trials with study drugs alone or in combination targeting the immune checkpoint inhibitors. Dendritic cell transplant therapy – that would be highly experimental, but if offered, grab it. If done correctly (meaning successfully activating the dendritic cell response to own specific tumor antigens) could be significant in terms of efficacy. Either case, the side effects are less than with the classic chemotherapy.

     

    You are right about the chemotherapy, it gives a marginal benefit and not efficient (or maybe get stable disease or partial response on a short duration). But not all chemos are equal. You’d need a second or third advice from a medical oncologist from a large cancer center, with tons of experience.

  • Barbaraek
    Barbaraek Member Posts: 626
    #6
    Welcome

    to the group and sorry that you have a need to be here. It's great that you are doing lots of legwork and advocating for your dad. Memorial Sloan Kettering is top notch - as are some other institutions throughout the country. Your dad will get a comprehensive look there and a tumor board will discuss his individual case and make recommendations. They are also a comprehensive cancer center - meaning they will know the latest about clinical trials and such that your dad might be eligible for.

    You might want to look for Laralyn's posts on this forum. She had SCC HPV+ and now is undergoing tx. for lung mets.

    You have a lot of questions, so write them down and have them ready to discuss with your dad's physicians so you don't forget. It's easy to feel in a fog when you are in the midst of fighting this horrible disease. Try to keep your research limited to websites that are up to date and affiliated with organizations like the American Cancer Society, NCCN, National Institutes of Health etc. There is a lot of conflicting data and old data out there Google. In fact, there is even outdated info on some of the better sites. Much of the prognosis data is old. When I first went on the 5 year survival rate for husband's cancer was 38% and his staging - now I know that is no longer true thanks to the folks here.

    Hang in there, prayers for you and you family,

    Barbara

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Mofitt...

    Which facility in the Tampa Bay Area are you going to, and have you visitied Mofitt..? That's one of the best facilities around these parts. Definitely worth a visit, and consult..

    John

  • Pclark21st
    Pclark21st Member Posts: 126
    #8
    We may be going through

    We may be going through something similar.  What was your end results

Discussion Boards