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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: 4593
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: 576
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 2014 2 years 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: 1195
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 II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | PET-CTs clear through 1/13!

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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
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3488
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)
________________________________________________________
"I don't sleep - I wait"
Charlie Sheen

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