New member - history & intro - may have been underestimating!

iamlostru

I'm starting a thread here, although I actually just posted this on another (PEG Tube one), as I didn't understand the system - sorry for the repeat.



The background:
Since @ Oct been going through the diagnosis process. Starting with maybe a little acid reflux causing voice box burn...through left cord T1a small cancer (pretty much removed in biopsy), when CT/PET was read as full larynx deep tissue involvement and a node on right side. Vocal cord cancer doesn't travel, so the node thing was weird, and the Larynx didn't visually seem bad. Turns out, many Drs disputes and tests later - now with the super world famous type), the CT/PET read was wrong. There is a confirmed by biopsy right side tonsil HPV cancer, the right node occurring from it, and the vocal cord, totally independent but frankly not terribly concerning. (2 primaries).

Likely Treatment - (another Radio Cr review next week - and some more pathology - but probably) -
The one uncommon thing I guess is that using a unilateral radiation (only to the effected tonsil) is recommended. The NY hospital and team have been doing this for many years now with great success. Of course, the benefits of only one side exposed to loss of saliva and such is great. Generally, it is thought that the lymph node will clear itself if the Radio of tonsil is successful, and the vocal cord (again which is a stationary cancer), presuming pathology re-confirms cleared with broad margins (and is almost healed), to also NOT screw around with. Obviously, I'm going to be living with an ENTs head in my throat every few weeks for the next years, and all this is conditioned on keeping close watch. Anything appears on vocal cord acting quick - but no Rad there would mean quick and easy surgery is still a great option. If left Tonsil gets involved, again, there early...figure out what, I guess maybe Radio it. Cross that bridge if/when I get there.

I believe we would do a Chemo too...probably Erbitux (more tolerable), and doin that will encompass not only the tonsil, but the vocal cord and rt lymph node too...basically a prophelaxis (and maybe a bit of curative) to the whole area.

Some situational things:
Of course this all came about at a terrible time of life for me. Cancer can be very inconvienent! I had just come back from the southwest (where I was living for a year and then my Co closed - job gone) to NJ, where my house had just sold...and basically put everything in storage and living at GF condo as this all happened. Damn selling my home was the stupidest thing I have ever done. I miss having my things around me and sure I will more as this goes on. The not working, not knowing future and all doesn't help. The Drs I'm now using, and the ones most familiar with unilateral approach, are NYC based. Like an 1.5 hour commute from where I am in NJ. Making taking treatments there even tougher. Even if staying with a friend in the city, where again, I'm going through this without my own bed, my own stuff - bathroom, etc. We are seeing how a seemingly highly proficient (albeit not my favorite personality) Radio with a center 5 mins away feels about doing it, hopefully with direction from the NYC ones. That at least makes it a bit easier...and I'll just have to put life on hold for lord knows how long...as interviewing, or taking a job during this is crazy/impossible. And even getting my own place, again because where the treatment is is no where near where I would want to live, also impossible.

New Concerns - especially from reading all this:
The PEG has not been discussed recently, and when it was back when - I think they thought it wouldn't be needed. I get the impression here that is just not so. And that it may well be better to be prepared than waste away and have to have it put in while weakend. The Erbitux I thought was so tollerable that, other than some skin issues, it too would't be life disrupting. In fact, I was specifically told that there would be minimal interruption to life...if I was working that I could absolutely continue, with just coming in for the few minutes of Rad before or after work. Again, I'm getting the idea, that while many here may have had more surgical along with Rad/Chemo that all may be more of a hoped for and exceptional result than standard. I see that many find they need pain meds a lot. Is it more from their surgery or fro the rad treatments? Anyone have trouble with their Dr not appreciating the pain, or depression, or being too worried about prescribing? (I mean i can see where some Valium for the next weeks is not a bad idea).

Sure, any suggestions advice I'd appreciate, or yapping with any going through it too. Seems I've got about a week before things start getting ugly!

Sort of kiddingly: I'm the unluckiest person in the world! I mean I get Cancer and should have lost weight..no I gained like 12 lbs...and the Big C...the excuse...start forking over that medical marijuana...and send the bill to CIGNA please...oh thats right...i got throat cancer...i have enough trouble with air, forget smoke!

soccerfreaks

Welcome
Please be advised that treatment is tailored to the individual and the individual's cancer (hopefully). So, regarding the PEG tube, while it may be that some doctors insist upon it as a personal preference or because they are very cautious in that regard, your doctor is likely to consider the merits of its insertion based on a number of factors that include the nature and stage of the cancer and its location along with your physical condition, among other things.

You may read herein of people who say they wish they'd had a PEG tube, and in some cases there is validity to that sentiment, in hindsight. Even so, there are a number of very good reasons to avoid the tube if you can, and I am rather sure your doctor had these in mind. Among them, there is the matter of the insertion itself (all surgery is invasive, even something seemingly as simple as insertion of a PEG tube); there is the matter of wound care to the area where the tube is inserted -- and corrollary possibility of infection small or cataclysmic; there is the potential for emotional backlash, the notion that one is 'different', that sort of thing; and there is the very real potential for making a habit of the tube, of becoming reliant on it to the detriment of the very real benefits of continuing to eat through the good old pie hole.

If this is of concern to you, bring it up and ask why they chose not to go that route.

With respect to erbitux or any chemo drug, your results are almost completely dependent on you, and while the doctors have professional experience and many studies to base their estimations on, the truth is some drugs make some of us sick and other drugs make others of us sick. I am convinced that newer drugs (erbitux is one, relatively speaking) are applied because they are either better at attacking cancer OR attack it like another drug but are easier to deal with generally, OR both.

As for pain meds, I am not sure where you are coming from, since you are not yet in treatment, apparently. Personally, the drugs I needed most during chemo were anti-nausea agents such as compazine and fenergin. Even they left something to be desired, to be honest. I never considered valium as a source of relief for chemo tx. Others may offer conflicting advice in that regard. I WAS readily prescribed a small dose of valium for use prior to my daily rad treatments but even in that case I did not my very best to wean myself over time and it was not provided for pain but for relaxation.

Hopefully others will be able to give you better advice. In the meantime, welcome to CSN.

Take care,

Joe

iamlostru

soccerfreaks said:

Welcome
Please be advised that treatment is tailored to the individual and the individual's cancer (hopefully). So, regarding the PEG tube, while it may be that some doctors insist upon it as a personal preference or because they are very cautious in that regard, your doctor is likely to consider the merits of its insertion based on a number of factors that include the nature and stage of the cancer and its location along with your physical condition, among other things.

You may read herein of people who say they wish they'd had a PEG tube, and in some cases there is validity to that sentiment, in hindsight. Even so, there are a number of very good reasons to avoid the tube if you can, and I am rather sure your doctor had these in mind. Among them, there is the matter of the insertion itself (all surgery is invasive, even something seemingly as simple as insertion of a PEG tube); there is the matter of wound care to the area where the tube is inserted -- and corrollary possibility of infection small or cataclysmic; there is the potential for emotional backlash, the notion that one is 'different', that sort of thing; and there is the very real potential for making a habit of the tube, of becoming reliant on it to the detriment of the very real benefits of continuing to eat through the good old pie hole.

If this is of concern to you, bring it up and ask why they chose not to go that route.

With respect to erbitux or any chemo drug, your results are almost completely dependent on you, and while the doctors have professional experience and many studies to base their estimations on, the truth is some drugs make some of us sick and other drugs make others of us sick. I am convinced that newer drugs (erbitux is one, relatively speaking) are applied because they are either better at attacking cancer OR attack it like another drug but are easier to deal with generally, OR both.

As for pain meds, I am not sure where you are coming from, since you are not yet in treatment, apparently. Personally, the drugs I needed most during chemo were anti-nausea agents such as compazine and fenergin. Even they left something to be desired, to be honest. I never considered valium as a source of relief for chemo tx. Others may offer conflicting advice in that regard. I WAS readily prescribed a small dose of valium for use prior to my daily rad treatments but even in that case I did not my very best to wean myself over time and it was not provided for pain but for relaxation.

Hopefully others will be able to give you better advice. In the meantime, welcome to CSN.

Take care,

Joe

Thanks Joe -

Certainly much of my concern on the PEG is simply that with a real lot of posts here on it, virtually everyone says they are real happy they had it. Even those who delayed said the ended up with it and it made life better. Really probably one of the most lop sided comment things I've ever seen. (The internet being the bane of so many Drs just for things like this). But it is certainly true, the expectations for me - without the surgery so many seemed to have had and then a unilateral zapping, hopefully leaving one side virtually unaffected could be a good reason not to do it unless really needed.

I am very active in my own case management (and having a brother that leads a major medical center doesn't hurt either). And I absolutely believe one needs to be. In fact, if I wasn't and just followed along with whatever Dr was handling me then, I would have already been done with Radiation & Chemo, for the larynx cancer that didn't exist (and on the vocal cord causing voice issues, that may not be needed) - and may not have even found the tonsil cancer as the 2nd and actually main primary!

About the drugs, I'm once again just anticipating... I certainly expect all maintainence/rash/nausea things to be done. From prior experiences with family - I think I've come to believe that one big difference between new & older chemo drugs is that over time, the Dr learn how to handle the side effects real well. For example, Interfureon was a tough course for the first few years. With so many people using it for different things, and then for AIDS, lots of ways to handle side effects with different people were discovered. but it is some of the specific mechanics of the Erbitux I prefer to Platin drugs. (Erb being more a cancer stopper and Platins more a radio improver). Again, the need for pain drugs, heck even the aspect of actual pain per se, was not something I had really considered till reading through so many others experiences. And as there is so much literature on many physicians reluctance to prescribe...when I here it may be needed, I get a little concerned. Valium I agree is really for the fact that this whole affair, (and those life things I mentioned), is really easy to become a bit obsessive over.

Thanks for your interest and welcome. I gather you have a world of experience now and are making the new milestones everyday?

Kent Cass

iamlostru said:

Thanks Joe -

Certainly much of my concern on the PEG is simply that with a real lot of posts here on it, virtually everyone says they are real happy they had it. Even those who delayed said the ended up with it and it made life better. Really probably one of the most lop sided comment things I've ever seen. (The internet being the bane of so many Drs just for things like this). But it is certainly true, the expectations for me - without the surgery so many seemed to have had and then a unilateral zapping, hopefully leaving one side virtually unaffected could be a good reason not to do it unless really needed.

I am very active in my own case management (and having a brother that leads a major medical center doesn't hurt either). And I absolutely believe one needs to be. In fact, if I wasn't and just followed along with whatever Dr was handling me then, I would have already been done with Radiation & Chemo, for the larynx cancer that didn't exist (and on the vocal cord causing voice issues, that may not be needed) - and may not have even found the tonsil cancer as the 2nd and actually main primary!

About the drugs, I'm once again just anticipating... I certainly expect all maintainence/rash/nausea things to be done. From prior experiences with family - I think I've come to believe that one big difference between new & older chemo drugs is that over time, the Dr learn how to handle the side effects real well. For example, Interfureon was a tough course for the first few years. With so many people using it for different things, and then for AIDS, lots of ways to handle side effects with different people were discovered. but it is some of the specific mechanics of the Erbitux I prefer to Platin drugs. (Erb being more a cancer stopper and Platins more a radio improver). Again, the need for pain drugs, heck even the aspect of actual pain per se, was not something I had really considered till reading through so many others experiences. And as there is so much literature on many physicians reluctance to prescribe...when I here it may be needed, I get a little concerned. Valium I agree is really for the fact that this whole affair, (and those life things I mentioned), is really easy to become a bit obsessive over.

Thanks for your interest and welcome. I gather you have a world of experience now and are making the new milestones everyday?

Interesting
Good to hear what's what with you. If you are confident with your Medical team- they are the one's who determine what's best for you, and it would seem the best option is reliance on their judgement. Overview is for them to be aggressive, in spite of what it will put you thru.

As for where you are- Xanax might be a better option than Valium. It does gang-up on one, and the stuff does help one take it more in stride, and to accept.

Keep us informed.

kcass

D Lewis

iamlostru said:

Thanks Joe -

Certainly much of my concern on the PEG is simply that with a real lot of posts here on it, virtually everyone says they are real happy they had it. Even those who delayed said the ended up with it and it made life better. Really probably one of the most lop sided comment things I've ever seen. (The internet being the bane of so many Drs just for things like this). But it is certainly true, the expectations for me - without the surgery so many seemed to have had and then a unilateral zapping, hopefully leaving one side virtually unaffected could be a good reason not to do it unless really needed.

I am very active in my own case management (and having a brother that leads a major medical center doesn't hurt either). And I absolutely believe one needs to be. In fact, if I wasn't and just followed along with whatever Dr was handling me then, I would have already been done with Radiation & Chemo, for the larynx cancer that didn't exist (and on the vocal cord causing voice issues, that may not be needed) - and may not have even found the tonsil cancer as the 2nd and actually main primary!

About the drugs, I'm once again just anticipating... I certainly expect all maintainence/rash/nausea things to be done. From prior experiences with family - I think I've come to believe that one big difference between new & older chemo drugs is that over time, the Dr learn how to handle the side effects real well. For example, Interfureon was a tough course for the first few years. With so many people using it for different things, and then for AIDS, lots of ways to handle side effects with different people were discovered. but it is some of the specific mechanics of the Erbitux I prefer to Platin drugs. (Erb being more a cancer stopper and Platins more a radio improver). Again, the need for pain drugs, heck even the aspect of actual pain per se, was not something I had really considered till reading through so many others experiences. And as there is so much literature on many physicians reluctance to prescribe...when I here it may be needed, I get a little concerned. Valium I agree is really for the fact that this whole affair, (and those life things I mentioned), is really easy to become a bit obsessive over.

Thanks for your interest and welcome. I gather you have a world of experience now and are making the new milestones everyday?

iamlostru
Thanks for your posts. I am in the very early diagnosis stage - so far just one 3 cm lymph node found (and removed from) my upper right neck. Biopsy showed metastatic squamous cell carcinoma. Scoping shows nothing at all. Any anecdotal information I can learn about others' paths to the primary tumor and true diagnosis will be enlightening. I will be following along. Also - I will be praying for a positive HPV.

denistd

D Lewis said:

iamlostru
Thanks for your posts. I am in the very early diagnosis stage - so far just one 3 cm lymph node found (and removed from) my upper right neck. Biopsy showed metastatic squamous cell carcinoma. Scoping shows nothing at all. Any anecdotal information I can learn about others' paths to the primary tumor and true diagnosis will be enlightening. I will be following along. Also - I will be praying for a positive HPV.

hpv
Why a positive HPV?

delnative

denistd said:

hpv
Why a positive HPV?

Why a positive HPV, you ask?
Because statistically, anyway, your chances are much better if your cancer came from HPV than if it was from smoking, drinking and/or other factors.
Either way, this is a survivable cancer, but being HPV-positive is a good thing.

--Jim in Delaware
(HPV-positive and proud of it)

soccerfreaks

delnative said:

Why a positive HPV, you ask?
Because statistically, anyway, your chances are much better if your cancer came from HPV than if it was from smoking, drinking and/or other factors.
Either way, this is a survivable cancer, but being HPV-positive is a good thing.

--Jim in Delaware
(HPV-positive and proud of it)

link
Jim, I am familiar with the link between HPV and oral cancer, but while I read much anecdotal stuff herein about how it increases survival rates, I have not been able to find any research to back that up. Can you or any of the other HPV-positive folks point me in that direction?

Thanks in advance.

Take care,

Joe

train-nut

soccerfreaks said:

link
Jim, I am familiar with the link between HPV and oral cancer, but while I read much anecdotal stuff herein about how it increases survival rates, I have not been able to find any research to back that up. Can you or any of the other HPV-positive folks point me in that direction?

Thanks in advance.

Take care,

Joe

HPV+ Prognosis
Joe,

You might try www.medscape.com/viewarticle/570211. That will give you study results from Johns Hopkins dated Feb., 2008.

delnative

train-nut said:

HPV+ Prognosis
Joe,

You might try www.medscape.com/viewarticle/570211. That will give you study results from Johns Hopkins dated Feb., 2008.

About Johns Hopkins
As Train-nut pointed out, Johns Hopkins has done a lot of research on HPV and head & neck cancer. That's why I went there for treatment. Dr. Wayne Koch, my ENT there, has been part of that research effort.
Back when Dr. Koch told me my tumor was HPV-positive, he said that the odds of a positive outcome for people with HPV-derived cancer were something like 92 percent. Then he added that some more recent research had indicated the positive outcomes were more like in the high 80 percentile. That was about 18 months ago, so things may have changed since then. Either way, I like those odds.
And, FWIW, I just came across a news story the other day that said viruses such as HPV are suspected as the cause of 21 percent of ALL cancers, not just H&N.

--Jim in Delaware

micktissue

delnative said:

About Johns Hopkins
As Train-nut pointed out, Johns Hopkins has done a lot of research on HPV and head & neck cancer. That's why I went there for treatment. Dr. Wayne Koch, my ENT there, has been part of that research effort.
Back when Dr. Koch told me my tumor was HPV-positive, he said that the odds of a positive outcome for people with HPV-derived cancer were something like 92 percent. Then he added that some more recent research had indicated the positive outcomes were more like in the high 80 percentile. That was about 18 months ago, so things may have changed since then. Either way, I like those odds.
And, FWIW, I just came across a news story the other day that said viruses such as HPV are suspected as the cause of 21 percent of ALL cancers, not just H&N.

--Jim in Delaware

HPV+
My rad Doc told me the other day for what I have (HPV+, occult, scc, stage IV) he expects 80% chance of long term, disease free life. I'm 54, so if I get to see my 6-year-old son graduate High School, move out, go to college, etc., then I'm laughing!

Best,

Mick

soccerfreaks

train-nut said:

HPV+ Prognosis
Joe,

You might try www.medscape.com/viewarticle/570211. That will give you study results from Johns Hopkins dated Feb., 2008.

HPV
Thanks for the pointer! And Jim, thanks for the additional anecdotal information.

Take care,

Joe

Tanager75

soccerfreaks said:

HPV
Thanks for the pointer! And Jim, thanks for the additional anecdotal information.

Take care,

Joe

HPV Study
Karolinska Institute

The above WEB page talks about a Swedish study that backs up the info Jim was giving regarding HPV. My doctor gave me the same type of info. The article refers to tonsil cancer, which is what I was treated for along with lymph involvement. I saw this article long after I started being treated and just took the doctor at his word about what he told me. I guess I wasn’t that inquisitive and feel fortunate that I got a good team to treat me (Virginia Mason in Seattle).

Skiffin16

delnative said:

About Johns Hopkins
As Train-nut pointed out, Johns Hopkins has done a lot of research on HPV and head & neck cancer. That's why I went there for treatment. Dr. Wayne Koch, my ENT there, has been part of that research effort.
Back when Dr. Koch told me my tumor was HPV-positive, he said that the odds of a positive outcome for people with HPV-derived cancer were something like 92 percent. Then he added that some more recent research had indicated the positive outcomes were more like in the high 80 percentile. That was about 18 months ago, so things may have changed since then. Either way, I like those odds.
And, FWIW, I just came across a news story the other day that said viruses such as HPV are suspected as the cause of 21 percent of ALL cancers, not just H&N.

--Jim in Delaware

HPV Studies
Jim,

I've also seen several references that HPV derived H&N Cancers are/will overtake tobacco related H&N cancers within the next 10 years. Primarily as a result of life style changes, tobacco risk education, etc....

JG