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Head and neck cancers - clinical trial looking for participants

My cancer has returned again and the docs have ruled out any surgery or re-radiation. Chemo will only be palliative and maybe slow it down, but will likely have some negative side effects worsening my quality of life. The cancer has not spread anywhere else, just back in my throat but wrapping around my carotid artery. Four different doctors, including one from Duke and one from J.Hopkins say I have 2-8 months, a year at best, but probably " sooner rather then later" they agree anything can happen and this is just based on their historical experience. This was in December and very little has changed so far. I was just accepted into a clinical trial, MPDL3280a, it is a Gentech trial. it is an anti- body which is supposed to help the immune system recognize the cancer cells and kill them itself. I am their first head and neck patient in the trial. They have had some success with non- small cell squamous cell cancer in lung cancer patients. The anti-body has also shown some success with viral related cancers, I have HPV related squamous cell so hoping it works. The doctor running my trial is John Powderly of Carolina Biooncology in Huntrsville, NC. He said they are running it in other parts of the country as well. He said they are looking for more more head and neck and cervical cancer patients to participate in the trial throughout the country, especially HPV related. If you know of anyone who may be interested I suggest they contact Dr.Powderly or search for the Gentech,Roach trial MPDL3280a
Pen threw a punch at your cancer.
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Hi Andrew, I am a HPV cervical cancer patient. Went to lungs/brain. Here where i am at in philli i am on brain RAD with a chemo pill them chemo for three months. I will keep this in mind when i talk with my doctor. For now i have to do the full brain RAD and get that completed first. Only thing i dont like about trials is I WANT the real thing. not a placebo and i dont think they gaurantee you will get the medication versus a face placebo..not sure on that one. Glad you blogged today..Sunshine
 Sunshine, in this trial I do not think they are doing placebos, they are giving participants different dose sizes. The previous participants got lower does then I am receiving. My part of trial is getting the highest dose so far but others are still getting the lower dose. I am only the second patient in this part of trial here. There may be more in other locations. Trial is 16 doses. One every 22 days. CT and MRI Before 3 rd dose to see if having any effect. So far have had two doses, minimal side effects so not sure yet if it is doing any good. Won't really know until I get the CT, MRI in a few more weeks.
Paul, I hope you do better than I have. I can say if you can you should go to Johns Hopkins and speak to dr.Christine Gourin and Dr. Richmon, the head and neck team there is considered the beet in the world. Even just for another opinion. Regretfully I only heard about them after I had chemo and 7 weeks of radiation. Got through that fine and within 6 months iwas eating normal,etc. But my cancer returned and surgery was the only option which is when I heard about Dr.Gourin, multiple surgonsbtold us she was the beet. I have a feedding, peg tube and will have it for the rest of my life, havent had a real meal,solid food since Sept 15,2009, day before my surgery at Hopkins. Wasnt supsed to be thst bad but i had complications tht required 2 more surgeries. I saw your blog about Michael Douglas, I asked Dr Gourin what she thought when he was first diagnosed and shevwas very unhappy and said he was doing a great disservice to head and neck patients. I agree.
Hi Andrew, I saw your recent post and was very interested as my husband is currently being treated for Stage IV tonsil cancer with chemo and radiation. He had surgery to remove tonsil and lymph nodes in December. He had cancer in his lymph nodes and two or three had burst, so it is a concern. Did you have cancer in your lymph nodes? It sounds like by the time they discovered the cancer it had spread to other areas, is this accurate? I am keeping you in my prayers, I am hoping that this clinical trial will be your miracle. You sound like you are very strong. Regarding Michael Douglas, I get the impression he is very self-absorbed so probably didn't even consider being a spokesperson which is very unfortunate for the head and neck cancer patients, they need a voice out there.
Hi Kathy, my cancer was in my right tonsil , I had radiation and chemo and 6 months later my scans were all clean. 6months after that scan showed cancer back in same spot behind right tonsil. Couldn't have any more radiation so surgery was only option and we went to Johns Hopkins because numerous docs told us they were the best for head and neck. I had some complications, surgery after radiation is more difficult and Dr.Christine Gourin at Hopkins specializes in that. They removed 30 lymph nodes and all were clean, all the margins were clean too. When my cancer came back last August it was in one lymph node near my thyroid. Scan in Dec showed cancer back again at the original site, just deeper now but nothing in my lymph nodes or anywhere else. I've been very lucky it hasn't spread, my bad luck has been it keeps coming back in the same place. Dr.Gourin was very outspoken about Michael Douglas, he didn't take it seriously enough and continued to smoke, drink and almost make light of it. HPV related head and neck cancer is increasing and they predict within next 5 years it will pass prostrate and breast cancer cases. Dr.Gourin recommended we get the Gardasil vaccine for my sons, my 16 year old has already gotten it and my 11 year old will get it when he is 13 or 14.
Hi Andrew. Wow you've been through so much already. Sorry to hear you have to revisit things again. Stay strong and keep us posted along the way.
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Vital Info

Posts

January 4, 2011

matthews, North Carolina 28105

January 16, 1956

Cancer Fighter

Cancer Info

Tonsil Cancer

July 4, 2009

Stage 4

3.1 - 4.0 cm

Positive

No

Yes

Everything but especially the mental and emotional impact to my family.

Maybe my experience can benefit someone else more then it has me

Clinical trial started Feb 2012

Started clinical trial Feb 2012" Genteach trial MPDL3280a, protocol # PCD4989g. Anti body, I am their first head and neck cancer participant. Trial is being run at various locations in the U.S., I am in the Huntersville N.C. Trial. They are looking for more head, neck or cervical cancer patients to participate. Especially HPV related.

Carolina BioOncology Huntersville N.C. 704-947-6599

Having an advocate to deal with the insurance companies, doctors and hospitals is essential. My wife Hildi has been my greatest advocate and the one who researches everything and knows all the medical terms, treatments,etc. I could never do it without her.

I felt as if a had to constantly clear my throat and had trouble sleeping on my left side or back. I was originally diagnosed with sleep apnyea in 2008 and it was only a year later during a visit to mu chiropractor that he noted an enlargement of my right tonsil. I consulted my GP doctor and my dentist who only asked if it hurt, it didn't, and said they would not recommend getting my tonsils out at age 53. It was 3 months later that I had any pain and finally went to an ENT specialist who sent me for the tests that revealed the cancer.

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