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#148299 - 04/15/12 03:42 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Marco Offline
"OCF Down Under"
Member

Registered: 04/15/12
Posts: 1
Loc: NSW Australia
Bill I know a lot of time has passed since your last post. It may be a bit pointless to respond after such a long gap. It is just that I felt for you. I am sorry to hear of the confusion you battled when deciding whether to take treatment. I completely understand what a huge decision it is to walk into a room and have chemo injected into you... repeatedly. I was seemingly in good health (even dancing two nights a week), no pain and just a swollen lymph. It seemed so odd that there was a major illness lurking within me when I otherwise felt so good.
It takes a leap into the unknown to trust that there is anything wrong with you and more so to accept that treatment that will go darn near killing you is actually for your own benefit.
Clearly your treatment path is well decided by now. I sincerely hope it has worked out well for you and you are on a solid trend towards recovery.
I think I am starting to ramble. It is just that I do understand what you went through.
I'm responding in the hope that anyone else that reads your story knows that diet, lifestyle and hope is not enough. I ate all the right things before I got cancer and none of it prevented cancer. So, it sure won't cure cancer. I was very fit and ate lots of veg and fruit and had no weight issues. My favourite drink for years before diagnosis was carrot juice, which I had a few times a week. I had to laugh the first time a misguided 'adviser (friend)' solemnly suggested to me that carrot juice was a secret cure for cancer and "one the doctors won't tell you about" (I forget the nonsensical reason alleged for the medical profession hiding the cure).
The other thing that compelled me to respond Bill was the mention of UCSD. My daughter is a surgeon at that hospital. She recommended I take the treatment. So, any doubts about 'would you put your father through such treatment' is answered in full by that bald fact. As terrible as the radiation and chemo treatment is, and it is terrible, the sad fact is that going through it remains the best way you can hold onto life.
All the best Bill! I'd like to know you are doing well.
Mark
DX 7/2010 SCC BOT Stage IV
Cisplatin x4 (could not take last 2)+ Rad
So far all clear!

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#148306 - 04/15/12 11:16 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Marco]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Great post Mark
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#160072 - 01/12/13 07:04 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Marco, thanks for your inquiry last April. I only just read your post in that it has been a long time since I visited this site. My last post some 18 months ago indicated that I was preparing to accept my UCSD docs latest treatment plan which was radiation without chemo.
I instead chose to address some of the lifestyle fetures that I could reasonably identify as being associated with four health issues on the left side of my upper body which I began to notice about four years ago. The first was "ringing in my left ear", which I ignored until I noticed a small sore on the left side of my nose about 3 years ago. That was the second issue and was diagnosed as BCC. Soon thereafter, a swelling on the left side of my neck led (the third) me to the CCC and a dx of BOT SCC on the left side of my tongue (the fourth).
With the stage 4 dx, I freaked. I was primed for treatment. But as I recuperated from a horrible decision to have most of my teeth pulled, I patiently slowed myself down (with partial support from an understanding chemo doc), began to read about HPV and cancer and the limited treatment options offered by institutional medicine.
As a result, I have changed my residence, my diet, my exercise and my outlook on life. Meanwhile, my neck tumor is a bit larger, the primary BOT seems under control without effecting my breathing or swallowing. I'll probably check in with some docs, it's been more than a year, to get their take on my health.
Best to you. And, has everything worked out with your treatment?
_________________________
DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.

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#160093 - 01/12/13 03:01 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Bill

As you can see, Marco posted one time and one time only to address your concerns. Just in case he doesn't respond again, I'll address your post.
So it sounds like you have decided to change your mind once again and go back to your original plan of dying from this cancer. Hey, you are 71 by now, and all the information and facts we bombarded you with obviously were not as attractive as the internet fantasy that just moving, changing diet & exercise and thinking positive can cure cancer. C'est le vie.
When you finally do see a doctor, consider an MRI or CT scan so you can get an idea of how big the BOT tumor is. Mine grew for 7 years before it was discovered but that does not mean it "was under control". That way you can get a good time frame on the expiration date of your current fantasy.
Charm
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#160108 - 01/12/13 09:27 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
David2 Online   content
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1269
Loc: Los Angeles
Bill, Charm is right.

Still, no one here is giving up on you. What can we do to change your mind?
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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#160134 - 01/13/13 05:02 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Kelly211 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/02/09
Posts: 618
Loc: Michigan
Bill,

I'm not going to try and change your mind.I think you have made your decision and are sticking to it. I would ask you to keep posting to us with updates. I am curious to see how your self directed treatment plan works out.

As you yourself said in one of your earlier posts, there is very little information out there from patients who have tried alternative treatments and survived to tell about it.

So you can be that patient for us. Just drop us a note every 3 or 4 months or so and let us know how you are doing.

Best of luck.
_________________________
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR

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#160139 - 01/13/13 11:17 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2600
Loc: TN
Bill - If I were your caregiver, I would be really upset with you right about now. But as I've learned from being around this forum long enough, it is no one's decision but yours to make. I wish you well.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#160157 - 01/13/13 11:14 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
donfoo Offline
Patient Advocate (1000+ posts)

Registered: 01/09/13
Posts: 1018
Loc: CA - SF Bay Area
Well. I guess the vote is in on where alternative therapies rank.

FWIW - As most know Steve Jobs tried alternative therapies which were not effective. In his book, he understands that was a mistake. Recently, I was listening to 60 minutes http://www.ideo.com/news/archive/2013/01/#news-4841
where the founder of ideo, the company that did much design work for Apple, said that Steve told him personally to go direct to modern medical treatments and not mess around.
_________________________
Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com

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#160503 - 01/19/13 08:37 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Thanks for your interest. I'm sure you all have your own personal issues and relationships to attend to and that there may be little or no upside for any of you who choose to think about the alternative treatments I'm pursuing. So, I appreciate your comments.
Still, while conventional cancer treatment may seem like an open and shut issue to many, in my world it is really clouded with uncertainty and ambiguity. So, why do such a small fraction of those millions who test positive for HPV actually become cancerous? Is it not reasonable to conclude that some "event" or "process" actually triggered this omnipresent virus? And...is it not reasonable to think that such life style issues as nutrition and mental health could lead to such sickness? So, why should it be so strange or foolish for one to follow the timeless refrain: "let food be thy medicine"?
Anyway....I'm not trying to convert anyone. And besides, I don't much care for the term, "alternative treatments".
_________________________
DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.

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#160504 - 01/19/13 11:29 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2600
Loc: TN
Of course it is reasonable to consider that lifestyle issues such as nutrition and mental health could lead to sickness. I would suggest to you, "let food be thy medicine, but not thy ONLY medicine". I don't like the term "alternative treatments" either because it means "instead of". I prefer the term "adjunctive treatment" because it means "joining with". So why not consider good nutrition and mental health in combination with scientifically sound and proven medical treatment? I don't think anyone here is trying to convert you. We are only trying to save your life.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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