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#141789 - 10/21/11 05:15 AM HPV SWOLLEN LYMPH:: Seek Alternative Treatments
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Docs found an enlarged but soft lymph node had masticized from an HPV infected tongue base one year ago. I resisted surgery, chemo, and radiation. Now the lymph node has doubled in size and somewhat hardened to about 5 x 3 cm. Some weight loss from 168 to 154. No discomfort, no pain. Never smoking nor drinking Been low key, reserved. Trying to be more active and outgoing. Diet change: no added sugar, grains, no processed foods. Mainly fresh fruits, raw and cooked vegies. Now adding beef to diet. Might consider radiation in future. Does anyone know stats on length of survival without medical intervention. I. E. How much time do I have? I'm 70 years.

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#141791 - 10/21/11 08:12 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
How much time you have depends on whether or not you choose to have the cancer treated, if you have a tumor on your tongue or elsewhere, if you have more node mets, if you have distant mets, when you get treated, how you handle treatment, and quite a bit of luck among other factors. Predicting how much time you have is impossible. The question right now is how much time do you want to have?

Regardless of any of those things, if you choose not to treat oral cancer, you are choosing a painful and horrific way to die. Please do more than consider radiation in the future. Please actively pursue treatment. You may have a chance at a cure. But, do not wait. These chances tend to evaporate quickly.

And, if you are serious about making sure you get a good shot at a cure, you will most likely need to go for traditional treatment. Alternative treatments are usually a waste of money and precious time. Eating nutritious food will be good for your body and will help it recover from treatment. But, it won't kill the cancer.

Good luck and please seek treatment.


Edited by Sandy177 (10/21/11 08:18 AM)
_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#141794 - 10/21/11 12:43 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Sandy177]
davidcpa Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Are you kidding me? What kind of doctor(s) did you see that told you you were positive for HPV at the BOT? Did they do a biopsy of the BOT or a fine needle aspiration of the node? I can't believe they didn't urge you VERY strongly to get concurrent chemo and radiation. You need to run very fast to the nearest CCC and get treated for this. YOU DO NOT HAVE TO DIE as this is VERY treatable.

List of CCC's here:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#141799 - 10/21/11 01:15 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Sandy177]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
I totally agree - I am a healthy eating advocate - I too do the no surgar, no white flour and no processed food thing. However, i also completed 33 round of radiation, and 2 of chemo. Base of tongue cancer - particularly HPV related - is very very treatable even in the late stages- weightloss to me is generally a bad sign but if you are eating better it's a natural progression to lose that weight. Go to a ccc pursue traditional treatment, you could very easily be treated - possibly cured and despite beng 70 live another 20 years. Good luck!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#141800 - 10/21/11 01:18 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: davidcpa]
Kelly211 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/02/09
Posts: 618
Loc: Michigan
Altgough my neck lymph node is smaller then yours it has started to infringe on nerve action. The pain I have experienced is excruciating and I am on a cocktail of pain relievers that only partialy help. I am begining to suffer paralysys of various parts of my mouth and swallowing functions and half my vocal cords are now permanently paralyzed.

I am at a CCC and beginning intensive treatment soon. All I can tell you is that when this starts getting bad, IT GETS REAL BAD! Get your ass to a CCC now. I cannot fully describe the cumulative effects of the pain, paralysis and nerve damage that I am experiencing and you can throw your eating nice foods schedule out the window soon, I am just barely able to eat now.
_________________________
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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#141805 - 10/21/11 04:02 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

At 70 you are old enough to know better than to wish and hope that some magic diet can cure or even slow down cancer but young enough to be given false hope by the internet and talk show hosts and celebrity know nothings.
Easy enough to understand why you might think that "watchful waiting" is an option since it turns out that simply doing nothing works the best for the majority of prostate cancer cases in men of a certain age like ourselves.
But oral cancer is a totally different beast than sleepy and lazy prostate cancer.
In order to even give you a guess about "how long you have" we would need to know what stage of cancer and how big the tumor was. Even then it's a guess. Only a biopsy and pathology report can prove that you even have cancer at all. Your use of the phonetic spelling of metastasized implies that you had cancer of the base of the tongue and that cancer spread from the lymph node. I had the worse stage ( stage IV and a big tumor (T3) and my doctor estimated I would live about one year without TX. The pain in my ear from the tumor was excruciating and unrelenting but otherwise I had no symptoms.
You have had enough lecturing, so let me just say you should start looking for a hospice now that has liberal morphine policies because without TX, base of tongue cancer is a hideously painful way to die. Again,if you have not had a biopsy, you do not even know if you truly have cancer.
Charm


Edited by Charm2017 (10/21/11 04:06 PM)
Edit Reason: toned it down
_________________________
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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#141809 - 10/21/11 04:55 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9165
Loc: PA
Bill,

Reading your posts, I am unsure if you have been diagnosed with oral cancer or HPV? Was this from a biopsy? Have you had a CT or PET scan? Please rethink your all natural treatment regime. From your other post, laughing clubs, church groups, etc will NOT change the fact that you either have cancer or you dont. A healthy diet is best but the will NOT change it either. Please do yourself and everyone who is close to you a huge favor and go to a cancer center and have a thorough exam and if you do have oral cancer, get conventional treatment. That is what works. While not a single one of us enjoyed what we went thru, we are still here because we went thru either surgery, or radiation with or without chemo. Please rethink what you are attempting to do!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#141983 - 10/24/11 05:09 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: ChristineB]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Brand new to this site, I just discovered the replies to my post. Thank you so much. A bit more info: HPV caused cancer at the base of tongue, spread to lymph node, the swelling first noticed by me around 4/2010. Diagnosed with biopsy and viewed with tv camera down nostril in 12/2010. No throat discomfort or even awareness of "issue". Doc said stage 4, urged chemo. Will now see docs again after 6 months "away" given swelling and your considerate posts. Lastly, no reply to my post indicated "spontaneous remission" of HPV caused tongue cancer. Does that seem to be the situation?
_________________________
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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#141984 - 10/24/11 06:21 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
Radiation combined with chemo is the national standard of treatment for your situation. I went through this as well as many others here. Chemo by itself is NOT curative in oral cancers, even HPV+ ones.

I don't see your comment about spontaneous reemissions, but I wouldn't be holding out for that. If you mean that they can't identify the primary, that is common in HPV+ cancers and we now know where to look and why it is hard to find. For a period of time, some doctors thought that means that it had resolved. NO. It was just in a place that they could not find easily, and no good technologies were capable of looking there until is was very advanced and larger.

No one can predict your survival chances, though with an HPV positive disease they are 58% better than for OC caused by other sources. You are not too old to go through treatments, and we have had lots of people older than you do it. Don't think about odds, just bite the bullet and get the full treatments. If your doctor is suggesting chemo only for you, that is PALLIATIVE treatment, not designed to be curative. That person clearly does not have the most current thinking on this, OR you have confounding health issues you have not mentioned to us, that makes that doctor think you would not be able to go through these treatments. In your shoes I would not opt for chemo alone. Throw the kitchen sink at it, and enjoy the next decade of your life after cancer.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#141989 - 10/24/11 07:47 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Brian Hill]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Thanks Brian. Actually I was hopeful that I could boost my immune system by changing diet, exercise, home locale, etc. During the 6 montshs of these "life style" changes, the lymph node has more than doubled and somewhat hardened. And, recently a much smaller one, the size of a small lima bean, has appeared next to the first. It is becoming clear that the cancer is aggressive and requires a changed strategy. My team of 3 docs wanted me to begin radiation and chemo right then, some 10 months ago now. As I expressed my reluctance to the chemo doc he then suggested a mild drug (?) which I also avoided. Now, I'll go back to the radiation doc having heard a lot of bad news about chemo 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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#141994 - 10/24/11 09:59 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Kelly211 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/02/09
Posts: 618
Loc: Michigan
_________________________
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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#141996 - 10/24/11 11:53 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Kelly211]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
Bill, please get help. I started out with surgery, followed by nearly 8 weeks of radiation, with 3 chemo sessions spread throughout the 8 weeks. I wasn't that much younger than you when I was diagnosed, and I didn't hesitate. I am two years out of treatment, and while the treatments were awful, I don't regret any of it. I am still here, thank God, and have been able to spend time with my first grandchild, who I might never have met if I hadn't had the treatments. Good luck to you. Everyone here is rooting for you!
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#142005 - 10/25/11 03:12 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: zengalib]
Eshwar N Offline
Gold Member (200+ posts)

Registered: 05/19/11
Posts: 287
Loc: Delhi, India
Hi Bill, my father, 66 yr old, went through treatment for the second time. He had a asymptomatic nodal mass of 6 cm (just had occassional neck pain) and his treatment included Induction Chemotherapy (3 cycles), Surgery and Chemotherapy. He is still recovering from treatment and I hopeful that he will be alright in next couple of months.

After his first time, he also significantly changed his diet and lifestyle in hope that it never comes back again. Unfortunately, he had a recurrence. I feel that probably he was able to slow it down significantly but for not too long.
_________________________
Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]

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#142014 - 10/25/11 01:37 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
B Ellis Offline
Member

Registered: 10/25/11
Posts: 4
Loc: North Carolina
A breast cancer survivor gave me this good advise...you find the best doctor around and then do what the doctor says.

I did chemo and radiation together, and have been cancer free for one year. It is tough, but worth it. I feel great now.
_________________________
Swollen node, Diagnosed 04/05/10. Stage IV BOT SQCCA, 1 Lymph Node, Radiation and Erbitux, 5 weeks of Ethyol to protect Salivary Glands,no PEG. 10/20/10 PET clear.

I want to make sure other people know about this disease and HPV.

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#142020 - 10/25/11 03:19 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
wow...can't believe you believed that what you were doing was gonna cure you sorry to say wow...shaking my head in disbelief...sorry again
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#142114 - 10/27/11 05:54 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: SUEZ]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
I"m new to this and never sure if these comments get posted. I really am very appreciative of the time and thought behind your comments. Though I have a large family still I have had few conversations about this cancer. So, again, I am very appreciative. Now....I'd like to share some of my own thoughts about this "journey". My symptoms are few: no pain...anywhere, no discomfort, no difficulty eating nor swallowing. Breathing, speaking and such are fine. In fact, I'm strengthening my vocal chords by singing and laughing more. Still, I do have and remain quite concerned about this rather large lump on the side of my neck. A much smaller one now comes and goes. I'm "guessing" my lymph system is trying to digest/dissipate/dispose of this cancerous node on the base of my tongue. But I don't really know for sure. So, I'm hopeful that my lifestyle changes (and I've generally led a peaceful and healthy life before this) will strengthen my immune system enough to suppress the cancer and leave me amongst the multitudes who have benign HPV. Hope,of course, like beliefs, can often be buried by knowledge. And, for that, I am still searching. So, of course, I'd love to see some longevity stats comparting treatment and nontreatment individuals. I have not yet learned that from my 3 brilliant docs at UCSD. And, I google but no luck. Any ideas?
_________________________
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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#142116 - 10/27/11 07:29 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 957
Loc: New Zealand
Wow. Are you for real.? Healthy diet and "strengthening the immune system" will NOT deal with a cancer.
Have you listened too and actually read all the advice given to you on this site?
Man, either you get yourself to a Head and Neck specialist right now or it will be too late. And you WILL DIE of this thing.
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#142117 - 10/27/11 09:53 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: tamvonk]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
At any age, life is just too precious to waste even a moment putting off the proven standard medical treatment. You can still do the healthy lifestyle changes, but these will not kill the cancer and you will not be "singing and laughing" for very long. When you say that "Hope. . . can often be buried by knowledge" I have to disagree. Knowledge, especially the knowledge found on this site from the caring individuals who have been where you are, actually brings the hope so necessary for survival. Re longevity stats comparing treatment versus non-treatment, the reason that googling did not bring results is because the non-treated individuals did not live long enough to talk about it. If you really want to survive this, listen to your docs.
_________________________
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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#142121 - 10/27/11 01:37 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
Your Question:
Quote:
So, of course, I'd love to see some longevity stats comparting treatment and nontreatment individuals. I have not yet learned that from my 3 brilliant docs at UCSD. And, I google but no luck. Any ideas?

My Answer: Check your newspaper and internet and local funeral home website for obituaries. Those are the places where the statistics appear for "nontreatment individuals" This is a serious answer since non treatment has one result and one result only: death. There are ZERO documented cases of "spontaneous remission" of base of tongue cancer. Ancedotal reports of such fantasy turn out to be cases where they never had cancer at all (like Sandy's spouse)or else like some former posters, they had half of their radiation treatments and chemo and quit but it turned out to be enough.

It's wishful thinking that
Quote:
My symptoms are few: no pain...anywhere, no discomfort, no difficulty eating nor swallowing. Breathing, speaking and such are fine.
means that your lymph node is some sort of PAC-MAN gobbling up the cancer. At the time I was diagnosed with Stage IV and a huge tumor, that could have been me. Base of Tongue cancer is painless for the most part because there are not any nerves there.
You are not looking for knowledge, but for validation of a delusional belief system. While that is offered by Mexican clinics, homeopathic "doctors" and celebrity cancer books, it's not on the OCF menu.
But it is your life to throw away. Just don't pretend you are not choosing slow suicide.
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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#142128 - 10/27/11 04:59 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]
Kelly211 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/02/09
Posts: 618
Loc: Michigan
At some point back in the past I ran into a blog from a guy who didn't treat his cancer. I think his wife had to continue it at one point as this guy started to go down fast and ugly.

The lymph tumors started growing out of the side of his neck and his tongue tumor got large enough to choke him (his tongue was the size of a lemon). Of course he died, but it was a long slow grisly affair. The photo's told most of the story.

Anyone know if that blog is still around?
_________________________
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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#142137 - 10/27/11 07:43 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Kelly211]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Everyone here has pretty much summed it up. Believe me I am an advocate of lifestyle change to help heal you, and support standard medical treatments... but not in place of. I do believe that what you eat very much plays a role in your health and immune system, however it is not the end all and be all. (I'm a vegetarian, who doesn't eat white flour or sugar at all - I eat primarily vegan, boil nothing and eat raw when I can - and I make a killer protein shake every morning) Despite my believe in proper diet I also believe, you must do all you can to heal and fight this cancer. Get your treatments, and pump up your immune system by avoiding junk foods etc... but most importantly get your treatments. Its not fun, it's not easy but it does work.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#142161 - 10/28/11 06:23 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Cheryld]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Is it true that all those with HPV tongue cancer die unless they are treated medically? No remissions at all? If true then no wonder many of you think I'm stupid or crazy? Or both. Still, I've been planning to talk to my chief doc for the past few weeks. Your advice is helping. Thanks.
_________________________
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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#142162 - 10/28/11 06:39 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 957
Loc: New Zealand
Cancer is cancer. Doesn't matter what causes it. Cancers follow the same path - PROGRESSION if you decline conventional treatment. Having an HPV +ve tumour just turns the odds in your favour as they respond much more readily to the conventional treatment of chemotherapy combined with radiotherapy.
Why are you waiting and allowing this to grow more with each day along with the likelihood of metastasizing elsewhere so reducing your chances of cure.
Do you actually hear what is being told to you?
Stop procrastinating. Get to a CCC / your chief Doc ASAP.
Is your family aware of what is happening to you Bill. If you were mine I would give you no choice and just march to medical help.
That is your only chance.
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#142166 - 10/28/11 01:17 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

YES IT IS TRUE. But don't worry, you can still prove yourself right that there is no point in getting real TX by just waiting until the tumor has grown so large that only pallitive measures are possible. With enough morphine in the hospice, you can even continue your laugh therapy up until the end.
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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#142180 - 10/28/11 08:40 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
Bill,

Are you married or have a special someone in your life? Because if you do....the longer you put this off the worse it's going to get. If you were my husband I would be so mad and would march you to the nearest CCC YESTERDAY!! Please....if you value your life, this is serious and you need to get into treatment asap.

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#142181 - 10/28/11 11:16 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Shelley K]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1345
Loc: Los Angeles
Bill, everyone here is on your side and we all are pulling for you. Please let us know what the doc said. You have spoken to him/her.... right?
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 7 years all clear in 6/16

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#142488 - 11/05/11 09:12 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: David2]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
I did not think for one second that my spouse had a spontaneous remission or cure. Not even 2 rad treatments could have had an impact. If he truly had cancer when he was 1st diagnosed and continued the course he chose (which was to trust the CCC that said he didn't have cancer)...he'd be dead by now. Cancer isn't something that wanders off and goes away for good...unless it is treated by reputable methods.

Please don't make me come to wherever you are and beat some sense into you...just kidding...please get on board with treatment. Regardless of what treatment you receive for OC, it will beat the alternative--being on the other side of the grass.

_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#142499 - 11/05/11 04:53 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Kelly211]
RPCV Offline
Gold Member (200+ posts)

Registered: 10/04/08
Posts: 251
Loc: VA
Originally Posted By: Kelly211
At some point back in the past I ran into a blog from a guy who didn't treat his cancer. I think his wife had to continue it at one point as this guy started to go down fast and ugly.

The lymph tumors started growing out of the side of his neck and his tongue tumor got large enough to choke him (his tongue was the size of a lemon). Of course he died, but it was a long slow grisly affair. The photo's told most of the story.

Anyone know if that blog is still around?


Kelly I sent the link to the blog you are talking about ("Richs Plea") to Bill in a PM, rather than posting it in this thread. I hope he read it.
_________________________
Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"

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#142501 - 11/05/11 05:12 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: RPCV]
Kelly211 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/02/09
Posts: 618
Loc: Michigan
Thanks Catherine,

Wild bill is placing a long shot (99% against) bet on alternative therapies. Thought he should see what it looks like when you lose that bet.
_________________________
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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#142713 - 11/09/11 09:22 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Gary Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3552
Loc: San Francisco CA
Notice how well that same strategy worked for Steve Jobs. Had he gone for traditional medical treatments in the beginning he would still be introducing more cool Apple products - instead he's dead.

All cancer treatments are "bad news" so man up and get into the program if there is still time. As Brian stated, there's still a chance of getting another 10 years of life. Oral cancer death is horrific and the stuff that Stephen King horror stories are made of.


Edited by Gary (11/09/11 09:23 PM)
_________________________
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

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#142788 - 11/11/11 12:12 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Gary]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Thank you....very much........ To say the least, it is a most humbling experience, and a most appreciative one, to read your comments.

Meanwhile, a brief update. I consulted my radiation doc who was annoyed, and maybe even angered, that 7+ months had passed since I had ignored his unambiguous advice, which of course, has not changed. He noted the enlarged and hardening lymph node but was a bit relieved that the nostril camera suggested only a slight change in the base of tongue cancer.

I'm in the process now of finding out what to prepare myself for once I begin the 7+ weeks of radiation with or w/o chemo.
He did say I would need a feeding tube in that there would be significant impairment to my taste, eating habits, etc. Exactly how much impairment and for how long....I neglected to learn.
Meanwhile, I am trying to secure a living space close to the hospital.
_________________________
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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#142792 - 11/11/11 01:50 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
So glad you will be starting treatment. We are all here for you. Good luck!
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#142793 - 11/11/11 02:04 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: zengalib]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
Good for you. NOW we can help you deal with the BS that goes along with this path you are going to walk. For as pushy as we can be, we can also be informative, and empathetic. Stick with this cyber family here and you will get through this.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#142805 - 11/11/11 03:42 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Brian Hill]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9165
Loc: PA
Bill, I am very glad that you have finally taken our advice and given yourself a fighting chance at beating this. Here is something that has all the info any new patient or caregiver could ever need. Click on the link below then click on GTI Draft Copy. Please take some time and go thru this guide.

link to Draft Copy


Edited by ChristineB (11/11/11 03:44 AM)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#142807 - 11/11/11 05:37 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: ChristineB]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Bill: Good for you. You will be so thankful for the feeding tube when you get into your treatments and don't want to eat - the tube will do it for you, and it's no big deal having it put in and taken out. Heck, you may not even ever have to use it, but if you did, you would have it. Good luck and keep us posted.
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#142812 - 11/11/11 01:39 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: julieann]
davidcpa Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Bill,

Ask us ANYTHING 24/7 and I am so proud that you are finally allowing yourself a chance to continue living.
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#142842 - 11/12/11 03:38 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
RPCV Offline
Gold Member (200+ posts)

Registered: 10/04/08
Posts: 251
Loc: VA
Bill,

I'm so happy to read your latest post. You made a difficult but wise decision to seek conventional treatment.

The folks here will be with you every step of the way, with help and advice. Please ask questions.

My Best to You,
Catherine
_________________________
Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"

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#142846 - 11/12/11 08:23 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: RPCV]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
Hi Bill,

You made a wise decision. You have a family on the OCF forum you can count on for support and information. The patients, survivors and caregivers here are some of the most giving, supportive, and knowledgeable people you will ever find.

Darn right your RO would be angry with you. I'm sure he didn't like having his advice ignored, his chances of successfully treating you diminished, and his job made more difficult. Thankfully, it sounds like waiting hasn't done too much damage. And, like those of us here who were rather stern with our warnings, I'm sure he wanted you to be cured and go on living your life.

You'll get through treatment. And, we'll be with you every step of the way.

Take care,

Sandy
_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#142857 - 11/12/11 04:24 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Sandy177]
Kelly211 Offline
"Above & Beyond" Member (500+ posts)

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


Considering the fact that I am battling a second occurrence of oral cancer and really do not have a great degree of mental capacity left to worry about complete strangers, I found myself wondering about you this morning and hoping you were doing well.

What a surprise to see your post when I fired up my computer. I just finished my first week of chemo with radiation, so we will be close together in treatment schedules. Feel free to PM me at any time should you have any questions.
_________________________
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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#142858 - 11/12/11 05:29 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Kelly211]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1345
Loc: Los Angeles
Bill, I too had been wondering and worrying about you. I'm very gratified that you're taking the right steps. Everything Brian and others have said about the people on this site is true.

As far as feeding tube, impaired taste, etc., as all of us will also tell you: we're all different. Some get a PEG tube, others - like me - do not. In my case though I must admit that I wish I had, because trying to get enough nutrition by mouth during RT was about the biggest challenge I can ever remember. So it's smart that you're taking this step.

You'll be experiencing a whole raft of side effects and I hope your medical staff is preparing you for those. But there are also a raft of ways to help deal with them, including much you can learn here.

As David, Catherine, Sandy and Kelly have just said (and that's all I can see on this page, but everyone else here will tell you the same thing), ask us any questions at any time. We're all here for you. Best of luck getting a place to live near your treatment.

Courage! You'll get through this.
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 7 years all clear in 6/16

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#142861 - 11/12/11 11:33 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: David2]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Good luck - and as everyone here said ask away if needed... So glad you opted for treatment
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#142943 - 11/15/11 06:17 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Cheryld]
Gary Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3552
Loc: San Francisco CA
Bill you're going to sacrifice 6-12 months of your life to keep your life - sounds like a good tradeoff to me. Surely you are old enough to know that there are times, in life, when you have to roll with the punches. Sure Tx sucks but remember there is a beginning a middle and an END! keep focused on the present and the challenges that it presents. Keep your eye on the future that this will END.

I was into the healthy lifestyle thing - very little meat, except chicken, lots of fruits and veggies, cut out sugar & salt, exercise, etc. for YEARS pre cancer. Got it anyway. I am convinced that not much else will prevent cancer except genetic propensity, luck, protected sex, no smoking or drinking.

My ENT was pissed off that I waited so long for coming in for a Dx. I can only imagine how pissed off he would have been if I told him I was screwing around with alternative treatments for 7 months. I drug my feet and IMHO it cost me an additional stage.

Congratulations on finally finding acceptance.




Edited by Gary (11/15/11 06:19 PM)
_________________________
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

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#143295 - 11/25/11 04:58 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Kelly211]
swati1 Offline
Member

Registered: 09/26/11
Posts: 19
Loc: NEW JERSEY,USA
hi kelly,
i was going thru the old posts and read yours. mom in india has similiar symptoms as you have. she has scc of tongue in feb 2011 and went thru surgery and 37 rounds of radiation in june. 3 monthe back she had excruciating ear pain, couldn't eat. the dr made hae wait till 3 months and did biopsy. it came out tumour and the onco did surgery last monday.she has lost 1/2 of her tongue including the tip. but i wanted to the further course of treatment. onco says no chemo or rad. is it normal.
please can you respond to mom has cancer post.

thanking you,
sincerely,
swati

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#143379 - 11/29/11 12:24 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Tulsa Wife Offline
Member

Registered: 11/27/11
Posts: 6
Loc: Oklahoma
My husband's doc said radiation only (no chemo) is the recommended treatment for HPV related tongue cancer w/mets to neck nodes. It does not look like this forum agrees w/that. More info???

Becky
CG for 66 yo husband who just completed radiation only for base of tongue CA w/METS to neck nodes.
_________________________
CG for husband. Dx 08/11/2011 BOT cancer w/METS to neck lymph node.

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#143380 - 11/29/11 01:22 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Tulsa Wife]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Becky Bowles

You should really start your own thread. I know first time internet forum users get confused but I'm 64 and I can figure it out. All you need to do is click on a forum and then click new topic.

Okay, all my lecturing is done. Now to your post. Your husband's doctor's advice does not comport with the NCC guidelines nor with any of our experience. It's not that this forum does not agree, it's the facts and research that show conclusively that base of tongue cancer that has spread to the lymph nodes NEEDS chemotherapy in addition to radiation. But it looks from your signature that "the train has already left the station" in that chemo helps the radiation and your husband has completed radiation. So make sure he has regular and frequent checkups and MRI/CT scans since unfortunately for him, BOT cancer without chemo often comes back quickly. I had maximum radiation as well as 8 Erbitux chemo and my cancer came back but that is because Erbitux just did not work for me and for many others so it's like I never had chemo. There has been discussion that HPV BOT may not need chemo but I was HPV positive so for me that theory was false.
I don't mean to alarm you, and with any luck, your husband will be just find, but insist on regular scans. Chemo has lots of bad side effects, so it is very possible that your doctor is on to something that has not been validated but could be true. So it could turn out to be a blessing
Charm


Edited by Charm2017 (11/29/11 01:25 AM)
Edit Reason: toned it down
_________________________
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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#143385 - 11/29/11 02:04 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
Dear Tulsa - The standard of care is established by the NCCN Guidelines. Their treatment protocols are used by the top NCI designated cancer centers. This was set up so that smaller regional hospitals would have some idea what the big institutions were having success with. The NCCN guidelines today are for a combination of chemo and radiation, but not everyone adheres to them. You can find a current copy of the guidelines in the treatment section of the main OCF web site. They vary depending on location of tumor and staging.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#143393 - 11/29/11 02:12 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Brian Hill]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

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

Don't forget that I am NOT a doctor so I just have general opinions on BOT based on my own experience and reading. What counts is how the treatment takes care of the cancer.
You can look at the guidelines yourself at OCF
NCC guidelines BOT is on pages 18 to 22 of the pdf file. It's unclear to me what size your husband's tumor was (T1, T2,T3 etc) or how many lymph nodes (N2. N3 etc) the cancer had spread, so my comments were based on an assumption that like most of us, his cancer was not discovered early. But we all know how bad assumptions are.
If your husband had a T1, and no adverse features on a positive node, page 19 shows "definitive Radiation TX" as an option without the chemo. My bad in jumping to the conclusion that he was page 20 like myself which does recommend concurrent chemo.
Bottom line: just ask your doctor where your husband fell within the guidelines and you will know better.
Sorry to have jumped the gun and hope the Petscan is all clear.
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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#143394 - 11/29/11 02:15 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Brian Hill]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 942
Loc: Ohio
As Brian says - check the NCCN guidelines here: http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

In the NCCN protocols (and there are others) definitive RT (radiation with no chemo) is ONLY listed as the one of the standards of care if the staging is T1N1 or T1N0. Print out the pages on staging as well as treatment and bring them with you to the appoinment.

If the radiation did not get everything (and they will check carefully for this in the coming weeks, both with palpation and a CT/PET scan at some point), they may elect for a neck dissection. If you look at the guildelines, you will see the various decision points. Scary looking at them, but maybe scarier not. PM and I can point you to some additional information.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#143399 - 11/29/11 02:33 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Maria]
davidcpa Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Tulsa,

It would also be helpful if you update your signature line to show he has already finished rad w/ no chemo. That's the first place I read before I respond.
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#143409 - 11/29/11 05:48 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: davidcpa]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 942
Loc: Ohio
Also, just a note on treatment - the doctors must weigh the toxicities of the treatment with the benefit to the individual patient. For example, the platinum-based chemos can be pretty harsh if the patient has other physical issue besides the cancer.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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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 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1345
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 III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 7 years all clear in 6/16

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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: 2671
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: 1277
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: 2671
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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#160508 - 01/19/13 02:00 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Agreed - I am a true advocate of do what you can to help yourself. Most people here know me in that I push GOOD NUTRITION (almost NO white sugar, no canned or processed goods (though I ocassionally cheat and use canned organic beans, and non wheat pastas) and No white flour - I'm a veg head so the rest goes without saying), meditation, and overall mental well being. I also believe that acupuncture is a very useful tool, although not something that works for everyone, and have also gone for lymphatic massage and physio, but I've done all this and believe fully that it should all be used in conjunction WITH modern medicine.
Helping ones self is great and no one wants to suffer through treatment but doing what you can also means using every tool available to you - including chemo and rads.
While part of me believes that nutrition is part of what keeps us healthy to begin with. Once someting like cancer comes along it tells me that something is seriously out of kilter in your body for whatever reason... and your body will likely need more help that diet to get past it,, so the best way to deal with it is use all of those things - food, and treatment etc... To get past it... Then maintain your health but maintaining that life style. Best of luck. Remember though there is a point of no return. Hugs
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#160510 - 01/19/13 02:28 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

I keep misreading your cybername as "Wild Bill" (although it's probably just a transposed surname; Bill Wilde or Bill Wlilde?)
You've made up your mind here, that's clear. As to
Quote:
why should it be so strange and foolish to follow the timeless refrain: let food be thy medicine
, it is simply that it's taking Hipocrates' advice totally out of context, both then and now.
It's true that the "Father of Modern Medicine" did believe that proper food, nutrition, etc could PREVENT illness. But as far as I can tell, (including reading the Ionic Chronicles and other greek writings ascribed to Hippocrates, he never thought that that food was going to CURE a cancer tumor or any illness. He used salves and other medicines of his time. According to Gary Lindquester's "History of Human Disease," if it was a fever -- a hot, dry disease -- the culprit was yellow bile. So, a hippocratic practitioner would try to increase its opposite, phlegm, by prescribing cold baths. If the opposite situation prevailed (as in a cold), where there were obvious symptoms of excess phlegm production, the regimen would be to bundle up in bed and drink wine. - Hmmn, maybe I have been too hasty in dismissing this ;
If the regimen didn't work the next course would be with drugs, often hellebore, a potent poison that would cause vomiting and diarrhea, "signs" the imbalanced humor was eliminated.

Basically, it's a logical fallacy to assert that what lead to sickness will now cure it. Not oiling a bicycle chain or keeping it rust free will cause it to break, but pouring oil or scouring off the rust does not repair the broken links.

But keep us posted on your "wild" adventure, Bill, at 71, if your tumor is slow growing, you may even die of something else first. But because we do care, I repeat my suggestion to get a scan to see how your "food medicine" is working. Just like my scan showed the radiation shrank the tumor and it's gone, you can find out or at least keep tabs on the cancer.
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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#160513 - 01/19/13 04:04 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2838
Loc: NY
I agree with Ann-Marie. It's still unknown why HPV causes Head & Neck cancer in some, and not others. Smoking increases your risk, drinking not as much as smoking, chewing tobscvo, having a history of HPV in the cervix, being HIV, lack of nutrients. It's multiple factors, and take years, even decades for the dormant virus to become cancerous, probably due to being attacked so often, your immune system is then unable to fight off the cells from multiplying, especially when you get older, and or when your immune system is lowered. I often hear the phrase, "Let food be thy medicine, and medicine be thy food." But I would not substitute it for conventional treatment, and consider it adjunctive as Ann-Marie mentioned.
_________________________
T1N2bM0 Tonsil
11/09 TPF IC Hosp for 6 Months
09/10 Eye Surg From Chemo Tx
01/11 35 IMRT 70Gy
06/11 30 HBO
08/11 RND Carotid Ligated/Alloderm
06/12 SND Ca Not a Node PNI LVI
08/12 RND Pec Flap Dermal Graft IORT 12Gy
10/12 25 IMRT 50Gy 6 weeks Erb/Tax
08/13 SND TBO Cerv Angiograph
08/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carbo
11/14 Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap
Segmental Mandibulectomy with Microvascular Fibula Free Tissue Transfer







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#160652 - 01/22/13 11:39 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Jay Jeong Offline
"OCF Down Under"
Senior Member (100+ posts)

Registered: 09/27/12
Posts: 145
Loc: Australia
Best of luck with your choice of treatment plans Bill.

I hope that what you believe to be the correct method to living a healthy & pain free life ends up being the correct decision.

Do let us know as to how things progress as I am sure there will be lots of us here who would love to keep tabs with how things go with the treatment approach you have taken.
_________________________
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away

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#161490 - 02/11/13 09:56 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
About 15 months passed since my last visit to an oncologist. so last month I went in for a consultation. The onc said based on your charts you are "fortunate to be alive...and it is a good sign that you are experiencing no difficulty breathing or swallowing." She wanted to do a scan to see if the cancer had spread beyond the BOT and lymph. I refused because I think there is a reasonable chance that a catscan I received several years ago, from a miscalibrated machine was the trigger that turned the HPV malignant.
_________________________
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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#161494 - 02/11/13 10:13 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Charm and Paul,
Whatever "caused" my cancer may never be known. But...it does seem reasonable to think that if one is living a spiritually, emotionally, physically and nutritionally healthy life that most illnesses will be readily overcome. And maybe, just maybe, cancer will never become well-established.
In my case, I realize that there have been some "lapses in the above...and malignant cancer emerged some three years ago.
Meanwhile, I'm hopeful to uplift my entire health...and maybe just maybe...the cancer will not be debilitating and may even eventually subside. I'm somewhat reassured that I have seen noticeable improvement in such as cuts, bruises, sores and even moles. So, these noticeable healings give me real evidence that my "health" is better for these gradual "lifestyle" changes I am making.
_________________________
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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#161496 - 02/11/13 10:21 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
Really Wild Bill? While there are lots of reasons to question scans, I have to respectfully disagree that there is a "reasonable" chance that a CT scan triggered your cancer. This new theory that scans transmute HPV into cancer is just a "thought". IMO You have finally reached the level of the tax protesters who deny they owe income tax so I'm going to adopt the court's action in Crain v Commissioner, 737 F2d 1417
Quote:
We perceive no need to refute these arguments with somber reasoning and copious citation of precedent; to do so might suggest that these arguments have some colorable merit.

Glad the real treatments worked well for you and that you are having no difficulty breathing or swallowing. That's how my first time went until the recurrence. Plus you will get no argument that is very good to try and live as healthy as possible. At 71, you are old enough to make your own decisions, but also old enough not to expect us to agree with this latest theory.
Charm


Edited by Charm2017 (02/11/13 10:26 PM)
Edit Reason: toned it down
_________________________
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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#165199 - 05/19/13 08:12 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
Charm,
Of course i don't "know" what actually turned the relatively common and presumeably benign HPV virus into its cancerous cousin. But....why would it be unreasonable to "raise" the question concerning excess radiation being a significant or even contributing trigger?
Anyway...I'm NOT here to argue. After all, whose going to do a controlled study? Rather, "learning" from others seems the primary benefit from such a forum as this. So, I'll post a further update onmy condition, in the hopes that someone will have an interest.
I got a PET/CT scan as necessary to be considered for a clinical trial. The results showed the cancer had not spread to my lungs.
My weight and energy are only slightly down. Breathing, eating and swallowing are fine. The BOT tumor seems the same size, as I can touch it with my stretched finger. The neck has swollen to the size of an egg. Slightly embarassing.
_________________________
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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#165200 - 05/19/13 08:15 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
wlildebill Offline
Contributing Member (25+ posts)

Registered: 10/21/11
Posts: 30
Loc: san diego
So sorry to just note of charm's passing. He enlivened many of us.
_________________________
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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#165204 - 05/19/13 11:20 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Yes he did. And ever so much more.

I hope you are doing ok, Wildebill.
_________________________
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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#165208 - 05/20/13 01:59 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 957
Loc: New Zealand
Hello Wildbille.
So you keep on keeping on.
I would be quite concerned re the egg on your neck.
Still, you sound like you are enjoying life and that is what matters. Keep us posted.
Tammy
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#165215 - 05/20/13 05:41 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
defeatingin2010 Offline
Member

Registered: 04/20/12
Posts: 16
Loc: TX
I see you've changed your life-style to remove all kinds of junk from your diet..my hubby has been looking into a Clinic. There is an office in San Diego.


Edited by ChristineB (05/20/13 09:07 AM)
Edit Reason: removed clinic name
_________________________
T3 N3 squamous cell carcinoma of the right base of tongue. He was treated with induction chemotherapy followed by definitive chemoradiation, which he completed in December 2010. non-smoker, non-drinker.

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#165219 - 05/20/13 09:06 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9165
Loc: PA
defeating....The clinic you mentioned is listed on Quackwatch. That means it is NOT trustworthy or legitimate. It also means it is NOT to be discussed on this forum. OCF adheres to The Health on the Net Code which ensures correct scientifically proven medical advice is given. This is part of the rules every member has agreed to when signing up to join the forum.

I hope your husband will look into only proven medical facilities. I wouldnt want to see him taken advantage of or even worse his health compromised due to a clinic using unproven scientific methods.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#165309 - 05/21/13 11:55 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
johnswife Offline
Supporting Member (50+ posts)

Registered: 06/16/10
Posts: 58
Loc: Michigan
WildBill,
I have to honor and respect your decision. My husband passed 18 mo. after dx, after exhaustive treatment. I wonder now if it was all worth it, if we should have just said, 'screw it', after they found the mets to his lungs after nasty chemo and rads, feeding tube, swallowing problems, and much more. He was a fighter tho. Would not give up. I also respected him for that. Strongest and most determined man I know. We had over 34 yrs. of a wonderful life together and for that I am grateful.
So, live life to the fullest, but be wise as well.
Take care.


_________________________
Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.

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#165313 - 05/22/13 01:20 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2838
Loc: NY
Did anyone see the papers yesterday about a doctor running a clinic in CA offering alternative cancer cures? She was giving some cocktail she made up, and some people died, and or cancer progressed,.There were 28 victims, and was given 15 years in prison
_________________________
T1N2bM0 Tonsil
11/09 TPF IC Hosp for 6 Months
09/10 Eye Surg From Chemo Tx
01/11 35 IMRT 70Gy
06/11 30 HBO
08/11 RND Carotid Ligated/Alloderm
06/12 SND Ca Not a Node PNI LVI
08/12 RND Pec Flap Dermal Graft IORT 12Gy
10/12 25 IMRT 50Gy 6 weeks Erb/Tax
08/13 SND TBO Cerv Angiograph
08/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carbo
11/14 Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap
Segmental Mandibulectomy with Microvascular Fibula Free Tissue Transfer







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#165327 - 05/22/13 06:42 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: PaulB]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 957
Loc: New Zealand
Made the papers down here Paul. She deserves that prison sentence.
Tammy
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#165578 - 05/27/13 01:31 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: ChristineB]
defeatingin2010 Offline
Member

Registered: 04/20/12
Posts: 16
Loc: TX
Thank you! No wonder someone ripped me apart when I mentioned it before. I thought they were just being rude. Thanks again!
_________________________
T3 N3 squamous cell carcinoma of the right base of tongue. He was treated with induction chemotherapy followed by definitive chemoradiation, which he completed in December 2010. non-smoker, non-drinker.

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