Hi...My husband finished 7 weeks of IMRT radiation/chemo treatments about 31/2 weeks ago. He was diagnosed with no primary source throat/neck cancer caused by HPV. Is there anyone out there with this diagnosis that would be willing to share their story with us? Going it alone is hard and it would be good to share notes. Thanks, Mike and Peg
Hi Mike and Peg - My husband had the same diagnosis (head and neck cancer / unknown primary - HPV positive) in 2011. He was treated at Stanford Cancer Center in California. I totally understand how difficult it is for you now. It seems like nobody knows of this cancer and we often felt alone. I know that you still have a few bumpy days, but hold on tight....there is a light at the end of the tunnel - it just seems dim right now, but will soon get brighter. I am glad you have each other. Feel free to contact me if you have any questions or need additional support.
You will be in my thoughts and prayers,
Tiffany Mikles
Hi Mike and Peg - My husband had the same diagnosis (head and neck cancer / unknown primary - HPV positive) in 2011. He was treated at Stanford Cancer Center in California. I totally understand how difficult it is for you now. It seems like nobody knows of this cancer and we often felt alone. I know that you still have a few bumpy days, but hold on tight....there is a light at the end of the tunnel - it just seems dim right now, but will soon get brighter. I am glad you have each other. Feel free to contact me if you have any questions or need additional support.
You will be in my thoughts and prayers,
Tiffany Mikles
Hi gang,I had mine in my left tonsil and it moved to my lymph nodes nearby. My tumor was also HPV positve ( I hadn't ever heard of guys and HPV before ) and I opted for 3 rounds of induction chemo followed by radiation and then surgery as a final step.
I'll admit I was surprised how long the effects of radiation carried beyond the end of treatments ( Radiation from September to mid-October and my feeding tube didn't come out until mid January ) even though my team tried to give me their most accurate guess ,mouth sores were an issue for me.
I know it's difficult to wait out the results but the sores can heal in time and though normal might be a little different ( some flavors are a little different and spicy foods bring more tears to my eyes than before ) try not to be discouraged by a momentary condition in a changing healing process.
It appears we each have had family support beyond our personal bouts with cancer and it can't be underestimated as to the value that love brings to patients ;but my wife would be far better able to address what a caregiver needs ,as I slept through a lot of my care and treatments.
I hope this is helpful to you and am also willing to address your concerns should you need more info or have any other or more specific questions
Beyond that and to put it into perspective my new normal is Weight Watchers for Men about a year after my surgery.
Wishing you nothing but good things moving forward,
Hi...My husband finished 7 weeks of IMRT radiation/chemo treatments about 31/2 weeks ago. He was diagnosed with no primary source throat/neck cancer caused by HPV. Is there anyone out there with this diagnosis that would be willing to share their story with us? Going it alone is hard and it would be good to share notes. Thanks, Mike and Peg
Hi Mike and Peg - My husband had the same diagnosis (head and neck cancer / unknown primary - HPV positive) in 2011. He was treated at Stanford Cancer Center in California. I totally understand how difficult it is for you now. It seems like nobody knows of this cancer and we often felt alone. I know that you still have a few bumpy days, but hold on tight....there is a light at the end of the tunnel - it just seems dim right now, but will soon get brighter. I am glad you have each other. Feel free to contact me if you have any questions or need additional support.
You will be in my thoughts and prayers,
Tiffany Mikles
Hi gang,I had mine in my left tonsil and it moved to my lymph nodes nearby. My tumor was also HPV positve ( I hadn't ever heard of guys and HPV before ) and I opted for 3 rounds of induction chemo followed by radiation and then surgery as a final step.
I'll admit I was surprised how long the effects of radiation carried beyond the end of treatments ( Radiation from September to mid-October and my feeding tube didn't come out until mid January ) even though my team tried to give me their most accurate guess ,mouth sores were an issue for me.
I know it's difficult to wait out the results but the sores can heal in time and though normal might be a little different ( some flavors are a little different and spicy foods bring more tears to my eyes than before ) try not to be discouraged by a momentary condition in a changing healing process.
It appears we each have had family support beyond our personal bouts with cancer and it can't be underestimated as to the value that love brings to patients ;but my wife would be far better able to address what a caregiver needs ,as I slept through a lot of my care and treatments.
I hope this is helpful to you and am also willing to address your concerns should you need more info or have any other or more specific questions
Beyond that and to put it into perspective my new normal is Weight Watchers for Men about a year after my surgery.
Wishing you nothing but good things moving forward,
Ken
Thanks for sharing your experience @kenn