Lurker posting up after 2 years

Hello to all of you that are head and neck above the rest : - ) I have been reading this section of the message board for 2 years plus and counting. I feel as I know all of you in a special way through your support to one another through this unexpected fork in the road we have all faced .  As well as the wonderful compasionate family support members that post daily. I have read evey thread and most every reply to date . My DX 8/07 is stage IV SCC tonsil cancer involving base of tounge, bottom of sinus, top of throat. I went through 2 rounds of cocktail chemo, 37 rounds of radiation along with 10 rounds of single chemo (cicplatin) . Had peg tube, never used it found it to be a alien apendage I could have done without (in my case) I understand its a life line for many. Also due to other health related issues did not have the recomended neck disection, based on research of size of primary tumor post treatment and rad onocologist comitment to keep my PET/CT's more frequent then most to have a edge if I have a recurance , catch it quick and act.

At this date in time my most recient PET/CT showed no metobiloic uptake and all seems to be in check. Remission is a wonderful word !

DX 8/07 H&N stage 4A N2 M0

37 radiation, 12 rounds of chemo 

80% of taste back !

20% saliva, hope for more return !

Still kicking cancers ass and loving every moment of it  !

Hello to all and god speed

Glowworm

On Oct 27, 2009 5:34 PM glowworm wrote:

Hello to all of you that are head and neck above the rest : - ) I have been reading this section of the message board for 2 years plus and counting. I feel as I know all of you in a special way through your support to one another through this unexpected fork in the road we have all faced .  As well as the wonderful compasionate family support members that post daily. I have read evey thread and most every reply to date . My DX 8/07 is stage IV SCC tonsil cancer involving base of tounge, bottom of sinus, top of throat. I went through 2 rounds of cocktail chemo, 37 rounds of radiation along with 10 rounds of single chemo (cicplatin) . Had peg tube, never used it found it to be a alien apendage I could have done without (in my case) I understand its a life line for many. Also due to other health related issues did not have the recomended neck disection, based on research of size of primary tumor post treatment and rad onocologist comitment to keep my PET/CT's more frequent then most to have a edge if I have a recurance , catch it quick and act.

At this date in time my most recient PET/CT showed no metobiloic uptake and all seems to be in check. Remission is a wonderful word !

DX 8/07 H&N stage 4A N2 M0

37 radiation, 12 rounds of chemo 

80% of taste back !

20% saliva, hope for more return !

Still kicking cancers ass and loving every moment of it  !

 

Hello to all and god speed

Glowworm

keep those clean PET's comming!

It's ALWAYS good to hear from folks who are farther down the road from wherever we happen to be. I finished tx 12/31/08 so will have that wonderful anniversary soon. Thanks for sharing that you are doing so well!

Glowworm,

Can you please disclose your age at diagnosis and the HPV status of your tumor?

Mark

On Oct 28, 2009 12:03 AM BeckyCancerFree wrote:

It's ALWAYS good to hear from folks who are farther down the road from wherever we happen to be. I finished tx 12/31/08 so will have that wonderful anniversary soon. Thanks for sharing that you are doing so well!

Thank you Becky ! Yes indeed good to read from others like Pop-Pop that are even further along then me !

I thank you all for your contributions along the way, You were most supportive to me, while helping the people posting along the way, while I sat and read the wonderful information you all have had to share with each other.

Now that I am out of my shell I hope to contribute as well.

Glowworm

On Oct 28, 2009 1:40 PM mark5004 wrote:

Glowworm,

 

Can you please disclose your age at diagnosis and the HPV status of your tumor?

 

Mark

Indeed Mark. I am male age 47, I was 45 when I had my proper DX, I went mis-diagnosed for over 1 year following dental work, and also told it was strep throat along the way.  After pushing my primary care DR that something else was upon me was sent to a ENT that did a biopsy of my L toncil and results were in .

Also I was a smoker from age 24-45 when diagnosed.

As for HPV I was never tested, I do understand the survival rates differ if positive. Have been with my wife of 20 years never strayed, so in all likelyhood I should be negative for HPV. Then again its undetermined.

Glowworm

Glowworm,

That is nice to know.  My husband is 16 months out of tx for stage iv tonsil - cisplatin and rad.  He was a smoker from age 13-43.  DX when he was 47.  Nice to hear even the smokers can have 2 clean years!!  We have been together for 23 years so pretty sure his would be hpv neg but never tested.  Assume it was from the smoking - as per what his dr tells us.

Thanks for sharing. 

Don't be so quick as to write off HPV as a possible cause. My tumor was tested and turned up positive. My wife and I have been married since 1987 and were faithful to each other for years before that. Yet my tumor was HPV-positive -- and after my diagnosis, she was tested and came up negative.

It can take a lot of years for an HPV-related cancer to manifest itself.

--Jim in Delaware

Jim in Delaware

Were you a smoker too?

Not writing off the HPV possibility just think much higher chance it was due to smoking as per the doctors dx. But you are right, there is a possibility.  We may never know as doctor did not test for it. My husband is third generation of oral cancer in his family father and grandfather both had and both were smokers.  TX was limited and both lost their battle to the cancer.

On Oct 29, 2009 12:25 AM Delnative wrote:

Don't be so quick as to write off HPV as a possible cause. My tumor was tested and turned up positive. My wife and I have been married since 1987 and were faithful to each other for years before that. Yet my tumor was HPV-positive -- and after my diagnosis, she was tested and came up negative.

It can take a lot of years for an HPV-related cancer to manifest itself.

--Jim in Delaware

Hi Jim, Thanks for writing. No one discounted HPV, Just stated it is undetermined if I am positive or not as I was never tested.

Reguardless at this point I feel DR's did thier best for a curitive treatment (so far) In my case.

Glowworm