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#141994 - 10/24/11 09:59 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]  
Joined: Sep 2009
Posts: 618
Kelly211 Offline
"Above & Beyond" Member (500+ posts)
Kelly211  Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
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
#141996 - 10/24/11 11:53 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Kelly211]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
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.
#142005 - 10/25/11 03:12 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: zengalib]  
Joined: May 2011
Posts: 287
Eshwar N Offline
Gold Member (200+ posts)
Eshwar N  Offline
Gold Member (200+ posts)

Joined: May 2011
Posts: 287
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]
#142014 - 10/25/11 01:37 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]  
Joined: Oct 2011
Posts: 4
B Ellis Offline
Member
B Ellis  Offline
Member

Joined: Oct 2011
Posts: 4
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.
#142020 - 10/25/11 03:19 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]  
Joined: Jul 2010
Posts: 531
SUEZ Offline
"Above & Beyond" Member (500+ posts)
SUEZ  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
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
passed away 4.3.15, RIP Ron, you are greatly missed
#142114 - 10/27/11 05:54 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: SUEZ]  
Joined: Oct 2011
Posts: 30
wlildebill Offline
Contributing Member (25+ posts)
wlildebill  Offline
Contributing Member (25+ posts)

Joined: Oct 2011
Posts: 30
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.
#142116 - 10/27/11 07:29 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]  
Joined: Mar 2011
Posts: 1,005
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,005
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 2017 - 5 years disease free. Woohoo!
#142117 - 10/27/11 09:53 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: tamvonk]  
Joined: Nov 2006
Posts: 2,671
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)
Anne-Marie  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
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.)



#142121 - 10/27/11 01:37 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
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
#142128 - 10/27/11 04:59 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]  
Joined: Sep 2009
Posts: 618
Kelly211 Offline
"Above & Beyond" Member (500+ posts)
Kelly211  Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
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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