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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: 8309
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 14, 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: 4914
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: 8410
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: 4677
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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